I hear people say Super but it is Supra Pubic Catheter. I have had an SPC for 16 years now and it has mostly been super. There is not much first hand info on the net so I will share my personal experience. Supra pubic catheters are a method of bladder management. It is a fairly simple procedure usually performed under a general anesthetic.
An incision was made about three inches below the belly button and a small hole is poked in the bladder. At this point, a catheter is inserted. It is held inside the bladder by plugging a syringe onto the catheter port and inflating a 5 to 40cc balloon with sterile water. The syringe is unplugged and a drainage bag is connected to the catheter flange. Usually the site (incision point) is low enough to hide below your pants belt line. It took three weeks for my supra pubic catheters site to settle and stop bleeding. I no longer keep it covered with any type of dressing.
With supra pubic catheters you must always keep a catheter in place. Your bladder can heal very quickly. In as little as ten minutes without a catheter in, you may not be able to get one in. Your body treats a suprapubic catheter as a foreign object. Forming a tube from stomach wall to bladder. Always trying to expel the foreign object, the catheter site never totally heals. It will always require a little cleaning. We use an alcohol wipe each morning and night. I’d much rather my carer clean around the super pubic catheters site than the pointy end of business (I’ll call him Sarge). Especially when your primary carer is a family member.
Changing Supra Pubic Catheters
Silicone Foley supra pubic catheters like these above are good for three months. I change mine every two months. Even then it often requires a little tug to remove. Some rotate their supra pubic catheters frequently to keep them free from sticking. This can cause leakage so I don’t do it.
Sterilize all equipment and around the catheter site. Deflate the old catheter balloon by firmly plugging an empty 10 cc syringe onto the supra pubic catheters port and drawing back. Remove the catheter taking note of how far it was inserted. So then you will know how far to push the new one in. Lubricate and insert the new catheter, then inflate the balloon. It should slip back a little to rest against the bladder wall. Holding the syringe plunger depressed, remove it and plug a new clean drainage device onto catheter flange.
You might like to check our 10 step guide on changing supra pubic catheters.
We once pushed my catheter in to far, right through the bladder and half way out my urethra. When we inflated the balloon it ruptured my urethra. Sarge was wounded by friendly fire! I bled from the penis for three days. The same can happen if it’s not in far enough. A little bleeding is common after a change or trauma (yanking on the catheter) but any bleeding should stop quickly.
Plug a leg bag or whatever drainage receptacle you prefer. I use a 16fr gauge Silicone Foley catheter with a 4-Sure 2000 cc overnight drain bag in a cover slip hung up under my power wheelchair. The 4-Sure is emptied morning and night, changed weekly. The boys get jealous when we have a session at the pub. They run back and forth to the bathroom while I don’t need to go at all. Check and top up the amount of sterile water in the supra pubic catheters balloon monthly. Some osmosis can occur in time and you don’t want the catheter falling out when asleep.
Lifestyles Diet Flying Sex and Swimming
Drinking is essential with Supra Pubic Catheters. It’s recommended you drink at least 3 liters daily to keep sediment levels down and the catheter eyelets clear. A lower urinary pH can be of benefit in reducing sediment and bacteria causing UTI’s. Bacteria don’t like acidic urine. Some pH lowering drinks and those of general benefit to supra pubic catheters are; cranberry juice, coffee, naturally brewed beer, buttermilk, wine, green tea, colloidal silver, distilled and filtered water.
Diet is unrestricted. You can eat anything you like. Some foods that lower urinary pH and help to reduce urinary tract infection are; beef, berry juices, corn, corn silk, eggs, fermented milk products (yogurt), fish, fowl, goldenseal, grape seed extract, gravy, horsetail, marshmallow root, probiotics, sour cream and whole grains. Avoid processed foods and artificial sweeteners. Please keep in mind it is all about balance. A healthy pH range is between 6.5 and 8.0.
Flying is no problem though be aware silicone slightly expands at 20 000 ft. Some tell me they like to use a smaller gauge catheter on international flights. I have never tried this. I fear I would be soaked in pee before I even got on-board the plane. I have flown many times without making any changes to my daily use of SPC. I’ve been in gliders, stunt planes, across the country and on international flights. I’ve never had a problem. I do suggest reducing fluid intake. If you can’t, or the free booze is too tempting, ask the staff if you can pee in a bottle rather than trying to get to the bathroom.
Sex is the main reason I went for Super Pubic Catheters. How can I put this… Sarge is always battle ready, free to stand to attention at anytime. No having to fold an indwelling catheter back and cover with condom. No having to do a quick self catheter drain to prevent leaking pee during sex. I’m good to go anytime. Now I just need to find someone to have sex with! Haha. A friend tapes her supra pubic catheters down to her side during sex. It’s a good tip if you like it rough, your partner is worried about hurting you, or you or your partner are turned off by the sight of a suprapubic catheter. You can tape it down.
Swimming is not a problem. Disconnect your drainage device and press a stint (sterile cone shaped stopper, can use anything really) into the catheter and splash on in. Avoid drinking to much before and during swimming. If for some reason the urine cannot be drained via the suprapubic catheter you will usually bypass. The sphincter muscle which controls urination can only hold so much pressure before it will leak and you go the old fashioned way. That is a good thing! While it is inconvenient at times it acts as a safety valve. When urine can’t escape it backs up into your kidneys and will nearly always cause kidney infections (renal sepsis can be life threatening).
Sleeping puts your bladder into a dormant state, yes it sleeps too. Sleep on your back, side or front as long as it doesn’t kink the suprapubic catheter or tubing. Having a large drink just prior to sleeping will help your urine remain clear overnight. Keep your tubing and drainage device lower than your bladder. I clip the tubing full of urine onto my bottom sheet so it can’t pull on my catheter. A quick look around this web site will show you, quadriplegia and supra pubic catheters don’t prevent me from living a happy full and active life.
Sediment and Urinary Tract Infection Prevention
You will never completely stop Urinary Tract Infections (UTI). Anytime you have broken skin you’re vulnerable to bad bacteria, especially when you have a suprapubic catheter pointing the way in. Good hygiene is very important. I suffer less than one UTI/yr. The only indicators are that my urine has a stronger odor and is darker in color. Other quadriplegics shake, shiver, sweat, suffer headaches, blotchy skin or possibly display autonomic dysreflexia symptoms. Females seem to be more prone to adverse reactions to UTI.
The latest research suggests drinking large amounts of water to flush the infection through works as fast as antibiotics. UTI can grow from sediment so keeping sediment levels down is paramount. Cranberry products, corn silk, naturally brewed beer, and wine are also good UTI preventatives (see Diet above for more). I have a few beers near everyday and haven’t needed anti-sediment medicines for a number of years now.
Infections at one time were so frequent we had to change my Super Pubic Catheter every two weeks. Bacteria grows on sediment and can build up blocking the catheter’s draining eyelet’s. We would perform a bladder washout daily. Taking a large 50cc syringe and sterile bottled water (or cooled boiled water) we would push the fluid in and out to “flush” the catheter. I don’t recommend frequent bladder wash-outs. It’s much better to cure the sediment and UTI problem.
The catheter insertion point (site) itself is also at risk of infection. If the super pubic catheters site becomes red, warm to touch, crusty, tingles, smells bad and/or is pusy you probably have a site infection. A doctor can take a swab to confirm. Keep hair trimmed back away from the site as it promotes bacteria. Exposure to the sun, saltwater baths, cleaning with an alcohol wipe morning and night, keeping it dry and with good air flow, will all help avoid site infections.
Silver is a highly effective antibacterial substance which can be applied to various types of catheters. Multiple studies have suggested that silicone urethral catheters coated with hydrogel and silver salts reduce the risk of developing bacteriuria. Specifically, silver alloy catheters (coated on both internal and external surfaces) were shown to provide a significantly greater reduction in the development of catheter-associated bacteriuria over silver oxide (coated on the external surface only), silicone Foley, and standard laytex catheters respectively. Silver alloy catheters cost around $5 more than standard laytex catheters but if you find you are prone to urinary tract infections they are worth trialing.
UTI Medications and Drugs of Benefit
Hiprex tablets (Mandelamine) Urex or Ural the anti-infection drink can help. Hiprex is a pro-drug absorbed from the gut passing into the urine where it’s hydrolysed to formaldehyde. Formaldehyde causes the breakdown of proteins/sediment essential to bacteria. However this only occurs if urinary pH is less than 5.5 acidic which is considered an unhealthy level. It’s a big pill to swallow and tastes like horse piss but they work. They recommended twice daily but one every three days was enough for me.
You may like to try D-Mannose or Ethical Nutrients Urinary Tract Support (in Aus) and Probiotic supplements (see Diet above for more). Everybody produces sediment it’s just that “regular” people don’t notice it. Tell them to pee into a jar and wait 6 hours, they’ll see sediment.
With supra pubic catheters the bladder is constantly drained. Over time the bladder may contract or shrink (like any muscle does) frequently spasming. The condition is called an overactive bladder. Ditropan, Vesicare, Enablex and Detrol LA are bladder specific muscle relaxants. These are prescribed to help reduce spasm and shrinking. You can imagine how hard it would be to get a replacement catheter located correctly when your bladder is the size of a grape. Of course, please consult your doctor before taking any new medications.
Ceasing Use of Supra Pubic Catheters
No need to worry if supra pubic catheters are going to be the right type of bladder management for you. If for any reason you are unhappy with your SPC it is fully reversible. Just leave it out and resume your old method. Of course you must consult your doctor first. The last thing you want is a raging infection left trapped inside your body.
Basically you restrict fluid intake, remove the catheter, and cover the old site with a dressing. It is that simple. For best results we suggest you cease all activity for a few days to allow the site to heal. Keep the dressing clean. Also avoid showering and over-distending the bladder. Generally your bladder will seal itself off within 10-60 minutes. The suprapubic catheter site takes a few days to weeks to fully heal and will leave a small scar. Like I said however, please consult your doctor before you go leaving it out.
Kind Regards
Graham Streets
MSC Founder
Further Resources
- Care Guide: How To Care For Your Supra Pubic Catheters
- Queensland Health: What is a Suprapubic Catheter? PDF
- Spinal Injury Center: Managing your bladder with a suprapubic catheter
- Wikipedia: Suprapubic cystostomy
- Library of Congress Cataloging-in-Publication Data. Spinal cord injury / editor, Thomas N. Bryce; associate editors, Naomi Betesh. Rehabilitation medicine quick reference.
- I. Spinal Cord Wounds and injuries handbooks, manuals, etc. Bryce, Thomas N.
- II. Series: Rehabilitation medicine quick reference. [DNLM]
- III. Spinal Cord Injuries, rehabilitation handbooks: [WL 39 S757 2010] RD594.3.S6683 2010.


Hi Barbie, thankyou so much for letting us know. On behalf of the forum please pass on our love and best wishes. I’m sure you just being there is of great comfort to your Mom. Keeping a check on sepsis is great to hear, especially if there is any bleeding. I had a heavy bleeding ruptured urethra causing renal failure and double kidney infections, chronic enough to show up on x-rays. My doctors did the sepsis watch and nurses gave 3 x daily 50ml Gentamiacin IV stat for 7 days. It knocked me flat for a month or more afterwards. So expect your Mom to tire quickly when you get her home. If you need to vent or have questions feel free to post here, I’ve much respect for your wonderful Mom.
I had a positive culture for 2 bugs, kleidsilla and pseudomonas. Not sure of the spelling, the 2nd bug required a picc line and IV antibiotics. The great thing was I only spent one day in the hospital. I am home and get my drugs twice a day, the severe cramping and flank pain has subsided. I can’t believe what a difference a day makes. Looks like I will be back to my cranky old self within a day or so.
Hi Graham! I am out of the hospital now and well on the mend. My daughter Barbie wrote you. She originally told me of you. I think i will keep my urologist (no sense on training a new one,,lol. I had infection but my lower back pain was more that i was full of S____. A long time ago u couldn’t say the word without getting an enema..now.,. not so much. I did have to ask for sheets the 2nd nite. I really thought they went the way of enemas! It was a learning process, i learned i need to keep my guts loose….more chocolate pls! I loved my Barbie for going to bats for me. I do for my 81yr old mom. I am toying with the idea of pulling the plug on my spc. (before my family pulls the plug on me. Why can’t i have a short spickett. I have learned that one shouldn’t push to pee. It goes up not down and not everything that goes up Must come down. I’ve got 50 sterile ensure bottles filled with sterile water ready to do some house cleaning of their own. Take care good friend and HOW R U DOING?
Hi Graham, I care for my daughter who has a neuro-muscular condition.I recently found this site and have learnt a lot, my daughter was fitted with a supra pubic catheter 3 weeks ago and has had a few problems although things are starting to settle now. The main problem is itching, she say’s she feels like she is insanely itchy on the inside and all over her lower belly, she also complains of itching with any tapes i have tried that secure the catheter. I’m not sure what’s causing this but any suggestions would be appreciated. thanks, great site.
Hi Ronna, glad to hear you’re home alright. SPC or IDC bearing down would be just as problematic. You could use a spigot, the average person voids 6x daily, drinking 3 litres/day you should double that, 10-12x daily with an overnight drain bag when sleeping. Im getting better everyday thanks Ronna, these hot sunny blue skies help.
Hi Bonnie, the itching is likely neurogenic in your daughters case. Quadriplegics often get a similar sympathetic nervous system response to supra pubic catheters as burning, itching or painful sensations despite having no direct feeling, amputees call it phantom pain (feels like the limb still exists). Medications can dull the nervous system and numbing gels may ease the itchy reaction by numbing the cause. Micropore tape is apparently hypo-alergenic but I find Hyperfix better and very sticky. There is also a litle device called a StatLock used to secure catheters and tubing.
Hi Graham!! It’s me ronna’s daughter… I feel so bad for my mom. She has had such a hard time with this spc. Graham ….call me ignorant,but what do people with paralysis feel? Do they have pain associated with the spc? I kind of read your previous post. Is there any natural herbs or old wives tales out there that can fight the constant infections my mom is going through?? I am so afraid that she is going to develope a resistance to every antibiotic known to man!!! Maybe she needs what you have…. Blue skies and warm sun!!! There are days she fells so bad, she may not leave the house for a week! And she is perfectly mobile!! Well you have a great eve and I really appreciate everything you do on here and I am glad I found this website for my mom !!!!
Hi Barbie, paralysis from spinal cord injury affects all muscle function (movement) and sensory function (feeling) below the level of injury. T12 (above hips) paraplegics typically cannot feel or move anything from hips down, C4 (middle of neck) quadriplegics nothing from shoulders down. Every injury is unique however as the spinal cord is so complex and unpredictable. I’m a C5-6 quad, I feel nothing from nipples down, stab me in the stomach I won’t feel it, nothing at all, but after an hour I’ll get a buzzing numbness or warmth there, look down and say, “Hey, who cut me?”
That is why many get pain, burning, itching sensations from supra pubic installations. The body sends messages of pain to the brain that would normally alert you, after SCI these messages can’t get past the damaged spinal cord, at least not fully correctly immediately. This post explains more: interactive spine.
The best natural anti-infection advice is 3 litres+ daily. Push that sucker out with fluids. I suggest a number of foods and fluids of benefit to prevention of UTI in the article above, but the #1 is 3 litres+ daily. The sun is actually good for healing and prevention, which is where I’m going right now, to sit in the sun and have a beer, Doctors orders lol. ;)
thankyou for the info, im at home waiting for my wife to come home from hospital after have this fitted. feeling nervous as not knowing much about this. your info has helped alot. thankyou regards gary.
Hi Graham, thankyou for your advise, i have changed tapes and things are getting better, i will be sure to speak to doc about meds,hope you are well and thanks again!
Glad to help Bonnie. I should have mentioned silver coated catheters, a little more expensive but many report a marked reduction in itching and alergic type reactions by using silver coated catheters. Medications such as Ditropan and Baclofen may help but of course at a young age it’s best to avoid them where possible. The numbing gels I mentioned are Lidocaine Zylocaine or milder Bonjella — any babies teething gel — used when changing catheters and applied topically to the itchy areas daily. Also have a doctor test for UTI (urinary tract infection) as itchyness is a symptom.
Hi Graham
Love your site! Thanks so much for sharing. I have limb girdle muscular dystrophy (also have my two sisters with it too) and we lead very independent lives (just have to say that coz i hate sympathy!!!) I actually think I have a better quality of life than most of my able-bodied friends…but then again….who am i to judge!
My question is, that I have an SPC after a really bad fall at home. I didnt have much choice really because the catheter up the Uretha was just WAY too painful and uncomfortable. Being a woman, well…it was awful…and despite the fact i get around in a wheelchair…i do intend to have sex again…(please God! – looking up to the heavens). Graham what are the signs of a UTI? I get lots of pain in my bladder especially if ive been a bit constipated a few days prior (let alone all the good food I eat as i am really conscious of diet). It becomes painful and then i start to feel really like i’m getting a cold, and my pee then starts to get slightly pong-y.
I am concerned that as women, we do mensturate as well, and I’m keen to find out from some of your female SPC members if they tend to get infections after their cycle…coz i do…and with lack of carers…this is a difficult time for us women!
Hiprex doesnt work for me…but i take loads of Cranberry (50,000mg per day in one capsule) and I’ve also found that Ethical Nutrients Urinery Tract Support is brilliant for lowering pain in bladder.
Before I go, i find it distressing to read of those USA medical websites that talk about bladder cancers from SPCs…I feel like punching them in the nose, because I read some scholary literature that stated the perieved higher indicents of bladder cancer fro SPC wasnt as high as first thought. What do you think? Anyway, buggar it…its about quality of life….:)
From Australia, see ya later mate!
JWTAS
Hi Jwtas, common symptoms of urinary tract infection include nausea pain itching and burning sensations, chills, flushed skin, fatigue, lack of mental concentration, increased spasming, and concentrated cloudy or darker urine as well as you noted a stronger odor. The feelings you get certainly indicate the presence of UTI.
Women are more prone to UTI then men as their urethra is shorter and closer to the anus. For this, women are more likely to get an infection after sexual activity, menstruation and bowel accidents. Menopause, using a diaphragm for birth control, periods of inactivity, and pregnancy also increase the incidence rate of UTI. Constipation typically doesn’t but as you get pain I’m sure you are doing all you can to prevent that from happening.
Urinary tract infections can be hard to avoid especially as mentioned when lacking care support. If you have a particularly heavy flow using a pad may help draw it away rather than come in contact with other lady parts causing infections. I’ve never used ENUTS so thank-you for your input, I will keep it in mind.
It’s true Supra Pubic Catheter’s increase the presence of cancerous tumors post ten years, caused by the catheter rubbing on urethra and bladder, though any permanent catheter will do this. Again difficult to avoid but as long as you have regular checkups it shouldn’t be of major concern. As you say, it’s a balancing act between quality and quantity.
Iwas so sorry for myself untill I read yor column I have been diagnosed as having a non funcrtioning bladder I can pee maybe 100 mils and retain around 600 and am having to self ctherterise 3/4 times a day since sept 2010 and have landed in hospital several times with urine infections the last one was so severe that unable over the xmzs holiday period to get help soon enought it triggerer a heart condion and i was in hospital for 3 days. I find the urology dept in my hospital very unsympathic and get told to get a superpubic device fitted or put upwith the situation. as I am 80 years ond and have not had the best oucomes from former sugical intervention I am truely frightened to resort to the insertion. What do you think , would it be an advantage ? is it possible to meet some one in my area who has had this proceedure? look for ward to hearing your opinion thank you B
Barbie
Some of my personal support workers also work with other individuals who are of all ages particularly older people and they have super pubic catheters. Whilst I’m only in my early 40s, my superpubic catheter has provided me with enormous freedom and peace of mind. With all medical interventions, there is an element of risk. I do invest alot of energy into personal development trying to accept these medical interventions as part of my impairment journey. Look, the procedure is a bit scarey, but its over and done with quickly. Also, leading up to my choice, i realised i had no choice. Quality of life is very important to me. Good luck. I’m sure you will make the right choice for you.
Take care
JWTAS
hi its been just over a week since my wife jan had a spc fitted.still got stabbing pains in tummy,hope this settles soon.
Hi Gary, did you try some babies teething gel or a stronger numbing Lidocaine gel around the catheter? That may give her some relief.
hi Graham,wound is covered with a dressing ,has to stay on for another 5 weeks.thankyou for your reply.regards gary.
I am Marcie. I been sick my bladder had lots infer action without supra pubic catheter from January 20 2004 until December 16 2010 I had surgery for supra pubic catheter by female urologist on December 16 2010 since December 16 2010 I felt better much no more sick no more infer action!!! My supra pubic catheter is great!! I am new life
Hi Graham, was wondering if you could help me out. I have a super pubic and don’t seem to have too much problems with it (touch wood). However after getting over various problems with my condition, Syringomyelia, I am now extremely over weight. I used to be an extremely good swimmer, Commonwealth team NZ, and would dearly like to start swimming again as a form of exercise. I can’t use my legs but I have strong arms, however due to my condition I cant put a peg or a flip flow onto my catheter because I have no where to bypass. My surgeon did say there’s a dressing but I cant seem to find one. Could you recommend sites for me to look for said dressing, even the district nurses who change my catheter don’t know of any kind of dressing. So please any help please.
Yours Sincerely Wendie
Hi Wendie
How are you? I am fine. I been have my supra pubic catheter since December 16 2010 You can find newest belly bag urinary drainge for swimming suit or short or skirt at store no problem
From Marcie
Wendie: Some doctors suggest using a large sticky waterproof covering like Tagaderm to seal off the SPC site. I’ve never had much success doing so, it comes unstuck or leaks. As long as your site is reasonably healed it’s not necessary to use anything. I’m unsure why you can’t bypass, use a stint, or flip flow valve.. As long as you cease fluid intake and empty your bladder just before swimming you shouldn’t need to void again for at least an hour.
If not possible there are several types of sealed bags you can use as Marcie suggests. Just empty and tuck up under your swimwear, if you have a few extra bumps due to weight, I don’t think many would even notice an extra one.
I have a question about the methenamine. My mother lives with MS and has an indwelling catheter for a long time (maybe ten years, or more…). However, the last couple of years she has had a lot of very serious uti’s. So, I found this website – awesome, I must add – and was wondering if the spc might help her to not get so sick. Her doctor just prescribed the methenamine to try to prevent further infections (no mention of a spc) and her insurance does not cover it. It would cost her $174/mo. to take it (that is the generic cost). The doctor feels that the effects of the methenamine are minimal, and he is suggesting that we could just go back to the low dose antibiotic treatment that they were trying, although she got another uti anyway doing this. I would really like for her to try a spc. Do you feel it is necessary to take the methenamine along with having the spc in place, or do you know of any alternative drugs that may do the same thing?
Any help you could suggest would be appreciated.
Hi Graham, thank you for your help so far, my daughter had her first catheter change last week and it went better than expected, all seemed fine until yesterday when the catheter stopped draining properly, there didn’t seem to be any kinks but her bladder became uncomfortably full and started to leak from the urethra, i did notice a white powdery like substance in the tube and a crystal like clot come through, does anyone have an idea as to what this could be and what can be done to avoid this from happening again? Sorry if i sound a bit naive, this is all new to us.
Thanks again,
Bonnie.
Hi Tara and Bonnie
I am no means an expert, but i’ll tell you my story briefly to assist you with your queries. I have muscular dystrophy and after a really bad fall, i couldnt stand up anymore, so going for a pee would mean 24 hour carers about. So i made the choice of having a spc. the only chemical drugs i take are Ethical Nutrients: Urinary Tract Support. I think i have developed cysitis too..so these natural nutrients really help to alleviate the pain and symptons of that.
Bonnie..you will find that there are lots of ‘gremlins’ happening in the tube. and sometimes you may get crystalised bits and pieces which can block the catheter. I even found for the first 12 months, some blood little bits too, especially after catheter changes. but this is reasonably alright – but if you have red pee…get to a doctor quick…thats a sure sign of advanced kidney infection. I’ve had blocks too, and realised…drink plenty of water. PLENTY of liquid is important to flush out potential chrstylised gooblies…
Tara…I would suggest you ask your doctor to refer you to a Urologist. And I would also as the MS society or organisation to put you in touch with other members who have SPCs.
I had to make a decision – catheter up the uretha…(oh dear god, that is so painful) or an SPC…yes please…an SPC because i intend on having sex again AND it simply doesnt hurt as much as the other uretha catheta.
Get advice. TAlk to nurses, especially if you have continence clinic. Only listen to nurses/practitioners you trust or feel a good connection with. Keep talking to us..the SPC specialists (because we live with them!!). You need to take control of your decisions around your own health…not the medical fraternity. Work with them…do your information searching…and good luck. Life with disability isnt necessarily horrible…its fantastic. But we just need to be safe and secure and have peace of mind.
In the spirit of being free from infections…!
Regards
JWTAS
Tara: Alternatives to methanamine used to treat bacterial infections such as pneumonia and urinary tract infections are prescription medicines; Linezolid (Zyvox), Spectinomycin (Trobicin) no longer available in USA, and Nitroxoline and herbal preventatives; Cranberry, Goldenseal, Marshmallow root, Buchu, Uva Ursi, Corn silk, and Horsetail. None of these are specifically required to be taken by supra pubic catheter users, or any catheter user. Like any medicine they are simply available for those who are experiencing problems.
Research suggests a same or very similar incidence rate of UTI between supra pubic catheter users and indwelling catheter users. While that may be true it’s not based on a same case scenario, it doesn’t take into account that catheter users have a life, what works for one may not work for another. A bowel/bladder incontinent woman will on average experience 3.6 UTI/yr with a supra pubic catheter. That same woman will experience far more UTI’s using an indwelling catheter as the catheter creates a pathway for bad bacteria to enter the urethra and bladder.
Therein is your answer Tara. If your mother is of reasonable health with no underlying complications besides MS I would say no, an spc will not be of great benefit to reducing UTI for her. In fact having full sensation in the abdominal area it may cause more pain than it’s worth. Now if she’s bed or wheelchair bound, overweight, sweating alot, unable to practice good hygiene, change catheters sterily etc. then these complications lend to an spc being of great benefit. Talk with your Mum and Doctor, weigh the pros and cons, if you have further questions fire away, we’re here to help.
Bonnie: You’re welcome. The white powdery substance is sediment. Everybody produces sediment in their urine it’s just that normally we pee it out without noticing. It’s important that permanent catheter users drink at least 3 litres/day to prevent sediment building up blocking the catheter, the internal diameter of a catheter usually being much smaller than tubing.
Her catheter possibly temporarily blocked from sediment until enough pressure built in the bladder to free it. This trauma on the bladder most likely caused the blood clot. Sediment can encourage bacteria growth leading to urinary tract infections. Push fluids steadily over the day and if the problem persists see your doctor.
Leaking (bypassing) can be terribly embarrassing especially in a classroom as children can be so cruel. Try to let your daughter know that while a nuisance it is actually a good thing, without what I call “that safety valve” you can damage your kidneys or even cause renal failure (kidneys shutdown) and you need to replace the blocked catheter urgently. That safety valve a) gives you warning b) gives relief and c) time to act.
Should you encounter a blocked catheter you can disconnect any drainage device or tap and force sterile water up the catheter with an open 50ml syringe to free it. If it will not free the catheter must be changed. Sterility is secondary when it comes to unblocking a catheter but is best practice.
Jwtas: Thanks for helping out mate, I was laughing at red pee.. get to a doctor quick. Haha, accurate.. but funny.
Who thinks we should add an spc pro/con list to the article?
Advantages of an SPC:
1) I dont have to worry about when I need to do a pee, and how I am going to do it, and if the bathroom is wheelchair friendly
2) I dont have to worry about falling over and get stuck on the floor for 10 hours overnight in the freeezing cold with four fractures and rips in my arm
3) I then dont have to worry about my dog wanting to sit ontop of me as I wait for the carers to arrive to find me on the floor.
4) i dont have to worry about finding extra funding for care support
5) I can pee now in the most unusal places … and can see the opportunity to develop a pictorial guide of where to pee in my local city for those with pee – bags… especially the vacant spots main roads.
6) I pee’d on a vacant grassy lot on a main road, and no one had any idea i was having a luxurious pee in broad daylight during peak hour traffic.
7) when i’m out with my friends, I can now write my name skillfully using my wheelchair with my full pee bag and value open
8) its really important that if you are showing off on the dance floor and you happen to be doing a solo infront of a crowd of 150 diners waiting for the disco music to finish and Abba-impersonators to come back on the stage…to remember to do your valve tap back on, for you may find yourself showering the audience in droplets of pee…especially if you just drank way too much champers.
9) I now have a bevvy of pee jokes
Howz that for starters????
Haha you’re to fun, that’s a great start, I can see the hilarious image gallery. Here’s me at the beach, peeing. Here’s me beside a potplant, peeing. Here’s me at the state fair, peeing. Here’s me and my wheelie friends, all peeing!.. lol. It’s a Charlie Sheen substitute for winning, peeing! Register an account here and I’ll make you an Author, login and start uploading. You should write a post all about you and your story too.
pro) no rope in my drink while intermitantly catheterizing in the toilets
con) no numbers from the bathroom wall
pro) no sticky pee on my wheels
con) no one passing me a reefer under the stall
Hi,
I’m new here, I’ve had my SPC 10 years now and yet I’m still frightened of having it changed. I have to have a seditive before. Does anyone else need this?
Emma x
Emma: I don’t get frightened but those changing it often do. Mum having changed mine a thousand times still gets nervous. It’s mostly because they don’t want to hurt me. Is that why you get frightened, you fear it will hurt?
Because of a neutrogenic bladder that was weak, my husband’s Dr. did a suprapubic catheter. He can urinate normally or empty the bladder from the catheter. He hooks up to a bag at night so he doesn’t have endless trips to the bathroom at night. The big problem he has is significant leakage around the catheter. When he sits in a low couch, crosses his legs, or even at night sleeping, everything gets soaked. Dr’s nurse put in a larger catheter this week and that didn’t help. Dr. doesn’t seem to have any ideas. My husband (86 yrs.) is a very active man, walking miles, gardening, doing ours and a church lawn. It’s difficult to go and sit in church or in any social gathering without getting soaked and being very embarrased.
Do you have any help or advice or know where we can get any? We are desperate. Thank you so much for listening and hope some help is forthcoming.
Wanda: First let me thankyou, your email lead me to find unregistered commenters could not comment. I have corrected that problem for now. If hubbys suprapubic catheter is new it may just take time to heal closed tighter or may require a stitch to aid the process. Post 12 weeks or more I suspect he is to active. One of our kind members (see Marge, May 16 2010) came looking for the same answers you are and after trying many things found pushing and rotating the catheter daily to prevent it sticking was enlarging the passageway. When they stopped rotating the leakage (bypassing) subsided. It’s hard to restrict activity but is what I suggest you try first. Possibly including a Stat Lock or taping the catheter down to tummy but do not cover the entire site with tape long terrm while bypassing exists as urine can burn.
Hi all- I have a few questions that I am having a hard time getting answered. I’m hoping y’all can help. I am a 51 year old, active healthy woman, non ambulatory due to multiple sclerosis. I finally realized that I needed a supra pubic catheter due to my inability to get on and off the toilet. I had one surgically installed last week. I just do not know how to wear the bag without it being seen and with me being able to drain it myself. The thigh bag is too long and is quite obvious. The calf is less obvious, but is difficult for me to bend over to drain. My Doctor said that I can just keep it plugged and unplug it every hour or so to drain, but….. I can’t get the damn plug out and it won’t reach the toilet anyhow. Is there a good site with other options to buy? Perhaps a plug that has a drainage attachment to it or an extender that lets it reach the toilet along with a plug that has a drainage attachment. I am very frustrated and can’t stop crying and am already thinking that this was a bad idea. Any and all suggestions would be very appreciated!!! I can’t stop crying over this (perhaps it’s the drugs from the surgery) and I hope there is an answer out there. Thank you!!!!
Hi. Graham, thanks again for all the help, i am learning so much on this site, i am amazed at how much you’re not told by dr’s.
Cheers to all.
hi Leslie,
I dont know where you live but i use something called a flip flow valve when i am in the shower. this is a plug that goes on to the end of the tube but it has a lever on it so you dont have to take it off, you just flip the lever and drain out. you can get these usually from your doctor but if you live in the uk, try a company called bard and they should be able to send you some out.
as for the bags, if your finding them too long, there are smaller ones (300ml) that might help, also try strapping it higher up your leg but make sure you dont kink the tube at the same time. i wear very baggy trousers that cover it without it being obvious but thats personal preference.
Hi Leslie: as Emma says Flip Flow valves are great, twist and squeeze to drain versions are also available, most of these will allow a tube to be plugged onto it if you need to extend. Besides thigh and leg you can also get what are called a belly bag, simply Google those terms and if you still feel like crying plenty here have strong shoulders and experience.
Bonnie: you’re welcome, anytime.
Hi Graham and Emma,
Thanks for the info. The belly bags sound interesting to me, but do they really work with them having to flow upwards? I’m still looking for the twist and squeeze drainage systems. My hands do not work well, so I want the easiest system and the most hidden, as I am vain and do not want the world to see my urine! :)
oh, and do belly bags work for women?? All the ads show men!
Hi leslie, I have used belly bags for nearly 2 years and I wouldn’t think of going back to a leg bag. You can’t even feel it and it is un noticeable under clothing. And yes they do work, even though it has to go uphill. Think about when you are lying in bed, with a bedside bag. Your cath comes out of your belly before it goes down to the bag, so it is indeed going up in that case also.
As for a “valve” I take a used belly bag, cut the valve off and inset the top connector directly into the valve… Works great and it’s recycling! If yours hands don’t work well you may have issues with the valve on a belly bag, however. They use a twist valve. I don’t particularly care for it, but it works and isn’t bulky.
-Craig
Graham… Just thought I would mention, I was in the bahamas last week, and made a 25 foot dive. No issues, and as I always do when I swim, I just left my belly bag on. I still have not had procedure for suprapubic, and have transurethral, but I figured it was noteworthy.
So……am I crazy or do the Doctors and medical supply places just have no clue on how to deal with anything but a leg bag? My Doctor’s office, which is a urological specialty clinic has never even heard of a belly bag and they only have one type of plug for the end of the supra pubic catheter. One supply place in my area has a belly bag, but she said that no one ever buys it- they all love leg bags! So again, do you all buy your supplies from the internet? Are there different sizes available for the belly bag, as I weigh 120 lbs and am short waisted? Is there a best place out there to buy different types of plugs?? I am so frustrated and can’t believe that no one has the answers for me in my area (Eugene, Oregon, US). Thank goodness for your site Graham!!!!!!
Also, my doctor’s office says to not clean the bags and they will give me a new one every 4 weeks and other places say to clean them with vinegar and other places say to replace them every 2 weeks. How often do you guys say to get a new belly bag and do I rinse it with vinegar??? Sorry for all the questions, but I feel like a fish out of water and no one to plop me back in.
Leslie, I thought the same thing after I started using the belly bag. I reluctantly bought my first one on ebay… After I used it I couldn’t believe anyone still used leg bags… For me, leg bags slid down, became disconnected, pulled on my cath, and were just a general pain (literally). I could run a marathon (summing I could run that far lol) with a belly bag.
As for size, they are one size fits all. They have a nylon strap with a buckle that adjusts, and you cut off excess length on the strap. Think of a fanny pack that you wear under your clothes. That is about the best description I could give you.
I get mine from http://www.athomemedical.com. I change to a new one with every cath change say about 4 weeks. I just rinse with hot water evey so often, and it does fine. I actually sleep with mine quite often,, so the only time I disconnect is while I shower. As I mentioned before I also swim with it under my swim suit… A woman could probably hide it under swimwear with the skirt thingy.
-Craig
Thanks Craig. I just ordered one to try out. I’ll keep you posted.
Hi all… I’m hoping someone can help me. I had an SPC fitted 2 years ago and love the independance it has brought. I’ve been single 3 years but have recently met someone and am terrified of having to tell him that I have an SPC. Has anyone here been throgh anything similar, and can maybe give me some advice on how to explain it without having him run for the hill
Hi CornishPixie,
I met my partner 3 years ago this year. I told him about my SPC within days of first speaking to him so he knew about it before meeting me face to face, or having to empty it for me on a spur of the moment!, so he knew what to expect. I always think if they haven’t ran at the SPC idea, then they’re a keeper! If they don’t like the idea then they’re obviously not worth it. Its all about being honest from the get go really :)
Hi CornishPixie: It shouldn’t make or break your relationship. Anyone needing a supra pubic catheter also needs an understanding partner. He got this far sooner or later he will find things relating to your spc and think whoah.. what the. It’s a litmus test, if you will, they can accept the spc or they were not worthy of you in the first place. I’m a male with spc 16yrs, the girls who frequent here would be much better advice if they will, so I’m only going to say don’t use the term, “we need to talk.”
Since my divorce a few years ago, I have had 3 girlfriends, the last and the current were/are pretty serious. Of the 3, none of them bat an eye at my need for a catheter. All of them have ben understanding. I agree with graham, if they have a problem with it, they aren’t worth worrying about. I have opened the v conversation myself, by just saying “you know we have ben getting close, and I feel like I can trust you with even very personal things…” This way it focuses more on the fact that you trust them than something you are worried about… Make no mistake… I had the same worries you do, but it was always unfounded.
Good luck,
Craig
Anyone know of a place to buy a leg bag cover? I am in the US and can’t seem to find a cover for my leg bag on †he web. Thanks.
-Leslie
Leslie: like these? http://ezlifesolutions.com/Purchase.html and http://www.llmedico.com/n/one-leg-pants/ There are many different types of covers and and even specially designed leg bag clothing. Why not make your own cover, here’s some slip covers with toggle draw string my Mum and carers have made for a 2000cc drain bag. I even have a Morrisy one lol, one of my carers designer sunglasses came in it.
Thanks for the links and info Graham. I’ll check them out!
Hello, again, Graham & Members!!
I continue to have immediate pain relief with Rx Librax.Medicare & Medicaide will will not pay for it – a benzodizepine. Roche sold it to Valiant, which has an ”assistance program…” if 1 is not on M’care/aid. RATZ! I’m hoping they will pay for the generic/chlordiazepoxide-c
lidium. The nursing home will pay for merely 2 more weeks. YOUR SUGGESTIONS FOR HOW TO PAY FOR EITHER ARE MOST WELCOME!!!!!!!!!!
Memorial weekend… Sunday is for honoring those who made this conversation possible… Monday is to celebrate the quality of life they have given us… Bless you all, too…
Lily for Walt
Thanks Lily and Walt glad to hear ur both well
Hi Graham,
I hope you can help me with some advice. My boyfriend has MS…he’s been a bedridden quadraplegic since I’ve met him. He had a motor vehicle accident about 13 years ago and since that time was unable to catheterize himself…so, He had a urolume put in place about (12 years agO) Prior to that he used to catheterize himself three times a day. When he arrived at the Long Term Care facility the staff would use a condom cathetar to rid his bladder of urine…but for the past six years or so he has been using a Foley Cathetar. His UTI’s have gotten so severe and he has gone Septic many times over the past three months.
cont. hmm I must have pushed a wrong button on my computer.
The doctors have told him that they have him on the strongest antibiotics possible and that they are fast running out of help for him. On one of his most recent transports to the hospital the doctor on call wondered why he had to be on a Foley Cathetar? The Doctor checked his protate and said that it was small enough so he didn’t see why another type of cathetar couldn’t be used. Now, he mentioned to his nurse today about the type of cathetar that one could use intermittently throughout the day but the nurse said that a SPC was the best for him. Finally my question…the reason his nurse (perhaps) may be opposed to using a cathetar three times a day is that the Staff are SO BUSY!! We definitely have enough money to pay for extra care if he needs it, but, I was wondering which method of catherization would cause the least amount of UTI’s…I’m sooooo scared and worried for him.
Thanks, LInda
PS…Love all of your input on SPC
HIIIIeeeeeeee Graham. It been a while. Been so self absorbed i have no time for myself!lol.. I think i fell in love with Emma. She’s 1 of only a few that says that having her spc changed drives her to drugs. I take drugs, not sedative to have mine changed and they don’t work. It is still the worst pain this chronic pain person ever feels. Espsecially if i am carrying a lil infection. I am on the infection a mth club. 12 so far. I need to chg urol. I need to chg urol. I am trying to convince myself. I go to pain clinic and they give me versed just to give me a spine injection. Why can’t they do that to chg my Cath.? I honestly can’t stand the thought of it one more time. I go for another inj tues and am tgoing to beg them to give my nurse something for nerves and PAIN (that works). I have one good wk a mth and its not the wk they are chging it. I’ve thought of flushing it w/ lidocaine before the chg, what do u think? I know..u will say no..u have to..its a public forum. Will they commit me if i refuse to let them near me to chg it. lol Its been so long since i wrote, sorry just to bitch. Is i far better to have a million lil bitches in life or one big one like mine i wonder.?
Thkss Ronna
Hi Linda, silver alloy (silver coated inside and out) and fully silicone catheters are worth trying when money is no problem. Statistically uridomes have the lowest UTI rate as they are external, followed by CIC (Clean Intermittent Catheterization) passed either by urethra or stoma, then IDC (Indwelling) or SPC (Supra Pubic) closed systems which carry equal risk.
Recently I read a document published by HICPAC (Healthcare Infection Control Practices Advisory Committee). They conclude sterile practice as the number one critical factor in catheter related UTI prevention.
An estimated 17% to 69% of CAUTI (Catheter Associated Urinary Tract Infection) may be preventable with recommended infection control measures, which means that up to 380,000 infections and 9000 deaths related to CAUTI per year could be prevented.
The findings suggest a small benefit to using silver-coated catheters over standard latex catheters. This was based on a decreased risk of bacteriuria/unspecified UTI with silver-coated catheters and no evidence of increased urethral irritation or antimicrobial resistance in studies that reported data on microbiological outcomes. Differences were significant for silver alloy-coated catheters but not silver oxide-coated catheters.
Silver alloy-coated catheters carry less risk of asymptomatic bacteriuria compared to standard latex catheters (control latex catheters were either uncoated or coated with hydrogel, Teflon®, or silicone), whereas there were no differences when compared to standard, all silicone catheters.
For patients with spinal cord injury, there is some evidence suggests not using indwelling urinary catheters, that is IDC or SPC, of benefit to lower UTI incidence. Although this was based on the decreased risk of SUTI and bacteriuria in those without indwelling catheters (including patients managed with spontaneous voiding, clean intermittent catheterization [CIC], and external striated sphincterotomy with condom catheter drainage), as well as a lower risk of urinary complications, including hematuria, stones, and urethral injury (fistula, erosion, stricture).
Very low-quality evidence suggested a benefit of using a closed rather than open urinary drainage system. This was based on a decreased risk of bacteriuria with a closed drainage system. One study also found a suggestion of a decreased risk of SUTI, bacteremia, and UTI-related mortality associated with closed drainage systems, but differences were not statistically significant.
Sterile, continuously closed drainage systems became the standard of care based on an uncontrolled study published in 1966 demonstrating a dramatic reduction in the risk of infection in short-term catheterized patients with the use of a closed system. Recent data also include the finding that disconnection of the drainage system is a risk factor for bacteriuria.
What the hell does this all mean Graham? Well, while the reduction in UTI incidence rates may be small they do exist. Any reduction is better than none, as litte as a 1% reduction in UTI incidence means 90 lives per year saved. Use the least invasive, least UTI causing, bladder management method you can facilitate. Sterile practice, silver alloy-catheters and antimicrobial/antiseptic-impregnated catheters, are of benefit in reducing UTI. And that’s only catheters — in many cases — drugs, diet, lifestyle, environment and other factors can also be adopted to reduce UTI incidence rates.
I may produce a series of articles based on the HICPAC findings and other sources, to expand on best bladder management systems and practices, as many of you seem to suffer problems, and may benefit from the discussion.
Hi Ronna, nice to hear from you hun. Filling your bladder with Lidocaine is not something I recommend, not because of an open public forum, because I doubt it will be of any significant advantage. Lidocaine is a topical treatment intended for external use only — on the skins surface — around the catheter site and applied liberally to the new catheter to be inserted. It is my understanding Lidocaine should not be applied to any organs and under no circumstances should it be applied to the brain.
What you may find beneficial is Botox. Botox injections to the bladder not only numb they relax the bladder muscle. The effects of Botox last 3 to 9 months depending on the individual and dosage. The spin-off benefit is effective reduction of spasmodic pain and other problems associated with over-active bladders. Please don’t purchase dodgy Botox over the internet. The Craig Hospital has had great success using Botox, ask your urologist about the treatment.
Graham,
I am new to the SPC. I got one 3 weeks ago because of complications from radiation of the prostate. My question is this. Should I continue with a SPc or if I have the option, should I do another procedure such as an ileal conduit with an external bag or a stoma that I catherize when necessary from this point on? Are there other sites that deal with others that have had these other procedures? I think hearing from actual patients who are living with these would be a useful piece of information to add to what the doctors say. They understand the techical aspects of what they do, but seem to miss the reality of living with the results.
Hi Bill, ileal conduit and stoma require an operation that is not always reversible and to my way of thinking is not something anyone should have done unless completely necessary. If you can get away with an SPC or IDC stay with it. If you can CIC (pass a catheter several times a day) even better. Whatever you can manage that is least invasive.
Hi. Im a 46yr old woman in Victoria Australia,i was diagnosed with a fibroid of the uterus and HPV in the urethra and base of the bladder after the birth of my last son 15 yrs ago. After treatments and many surgerys over several years,including a hysto, (kept the overies)and stretchings,and one SPC for 6 weeks, i thought i was fine. But after 3 yrs my urethral stricture began to close again. After much thought and consultaion with my urologist, I have chosen to go with a permenant SPC. Ive had the original one in for 11 weeks due to the remote area i moved to in 2009. I didnt research the medical system here in Lakes Entrance and am devistated to learn theres little regarding Urinary problems. I ended up in the emergency ward and they put in a silicone tube that i now understand to be for kidneys??
Anyway, I got put off the list at 8 weeks due to anothers emergency, but now im going in on the 9th June to have this changed to a Foleys with a flip flow tap ( eventually the tap on after a cpl of weeks). I have an infection, once so bad i was put on a heavy dose of Roxy… now im on nothing, and the tube had so much sedement in it the local nurse at the Dr’s surgery had to un-do the pipe to flush the line thru. Now ive noticed a strong smell of urine, and dark color in the morning. Im draining well over night, and drinking water, maybe need more than i do. Im a whiskey drinker, with coke, about one or two in the evening. Im trying the best i can to live with this, but i feel very alone. Sex is still ok tho, gently, but Im still scared of something dislodging!
My husbands very supportive. Ive hit a low point in my life, coming from a great career which was very physical, to a quiet early retirement, doing little. Ive gained 4 kilo. Id like to swim again, but not sure i can do that now. Im a musician, so that keeps me going. Financially we’re struggling, Im on a disability pension, which is low. Im considering training in a new career with youth works. I wish i could be ‘normal’ again. Not as easy as i 1st thought it would be. As i said, I feel alone, but seeing this site has made me feel a bit better. Keep the communication going guys, its very important!! Would anyone like a chat buddy? :)
Cheers… and all the best!! xx Gayle
*removed email address for security reasons
Hello,
I have a spc since a year. Recently i am getting white sediments which block my pipe sometimes. I also wash my bladder weekly. Can you tell me what i should take for my diet or any medicine which can reduce the formation. I am also using silver coated cathter as i read from your web site. How often should i change my spc? Can we go on flight? Should i keep the drainage bag open during travel?
Hi YA, laytex catheters like Bard and Bardex should be changed monthly, silicone foley (which most silver coated catheters are) should be changed every 3 months. Check the packaging your catheters come in. We cover medicines beneficial in reducing sediment, diet and flying with a supra pubic catheter in the article. You can close or open your drainage bag when flying no problem.
I have a concern and this wonderful posts’ comment thread seems like a great place for it, as it is active with plenty of input/output. Thanks to Graham for the excellent guide. I’m just an average human, no disabilities except my mind and my apathy.
I’ve been fitted with a suprapubic catheter (Bard biocath aquamatic – latex with hydrogel coating) since April 2011, due to acute urinary retention. It was well expected for years, but anyway..
I was due a catheter change in the last two days which is now happening on monday. I weigh 20 stones and am obese so my gut is well established. This obesity obviously will create more pressure shifts and the cath goes through more matter, hence more opportunity for irritation, I suppose. When I first had the cath. fitted I could feel a hard circular mass around the cath. I’m going to presume this was the tight fitting bubble, “locked” in place (At the time)
Now, I’m getting strange feelings in my lower section when I stand up. It’s variable. The catheter seems to have shifted its angle from straight out to pointing down 45degrees. (or 135 depending on your orientation). Anyway, I thought that the bubble will always be in place tightly, maintaining a correct orientation.
Last night, whilst researching various catheter related issues/guidelines, I found a site (which I won’t mention because it may taint my post with spam orientation) that made me think (a lot) that the bubble catheter is quite liable to shift around a bit too much due to a lack of anchoring on the outside. After all, what is there to secure the bubble location/tightness?
Also, there is no hard bubble under/around the catheter….. so the compression has decreased considerably. Secondly, these strange new sensations that I can’t pinpoint. My urethra tingles when I get up (just tested and it happened as expected) It’s like a feeling that only activates when the pressure has been “lifted”.
I measured the length of catheter outside my body and it is 340mm sitting or standing. The total length is 430mm which means 90mm is just past my skin and inside my body. Drawing that to scale looks like it’s fitting reasonably well.
I suppose if my bladder has shrunk considerably it may be tickled by the end or bubble upon shifting one’s considerable mass. I also suppose that if I was able to keep a residual 150ml or so, then nothing would touch… (Can’t do that because the pressure of filling creates discomfort..)
The problem is, the device I have seen apparently is able to secure the normally unsecured catheter end in a sensible way which is supposedly able to stop liquids leaking through the stoma. This theoretically would allow healing. My current status is that I’ve got constant but small amounts of thin mucus coming through and I doubt the bloody part of the stoma is going to be helped to be healed with that…
I emailed the website of the “product” stating that it looks like its getting old and dusty, asking for an update on this wonderful product o.O I cannot find the device on any official supply site so it looks like it’s a dead product, even though I think it’s a great idea.
Comments plz plz :)
Hi Andy, many use a Statlock to secure their catheter and tubing. It’s not uncommon for a two month old supra pubic catheter to have some bleeding and rawness that should settle in time. The angle change is of little to no concern. My concern is mucus, sounds like you have a site infection and that will certainly slow the healing process, cause tingles etc. Your doctor can take a test swab.
Disability or not any bladder constantly drained is going to shrink. A flip flow valve or similar tap will create back pressure stretching the bladder, the discomfort may well prove worth it. Those unable to operate a tap or self cath have to take a drug like Ditropan to prevent the bladder shrinking to the size of a golf ball. You can imagine the discomfort and how hard it would be to get a new catheter positioned correctly then.
Thanks for your reply. I use a simpla g strap which secures catheter to leg. Sometimes I use tape at the halfway point. 5 weeks after the fitting of the catheter, I trialled a bard flipflo valve to allow the bladder to fill. Within a day I went from 500ml fills, with some discomfort to 150ml fills with lots of discomfort in my lower urinary system. It was so bad, I went back to leg bag since.
There wasn’t any pain for 5 weeks, until I tried the valve. I have been damaged during the acute urine retention period, which was not helped by my herculean bladder, developed over 12 years of urinary obstruction (resistance training equivalent). Whilst I was waiting to be relieved of acute retention, my bladder was doing its best to sledgehammer blow its way through the restriction. I suffered some very bad spasms and damage due to the strength of bladder, which your average acute retention person would not equal.
I’m waiting for investigation via urethroscopy, but I don’t have much enthusiasm towards diagnosis of strictures and probably a ruptured/torn/damaged tissue probably the bladder sphincter itself. I’m not on any medication, so I’m really lucky, as my left kidney was also well impacted during the hours of waiting for release.
I can see that it would be handy to have an intelligent valve that only allows urine to be released at a psi range, equivalent to say 100ml. For me, it would keep my bladder enlarged, avoiding the possible golf ball syndrome, without causing the pain that 180+ml of urine causes, whilst still allowing for easy recathing.
Dreams eh?? :)
wow Andy, poor bugger!… im going back in to have this changed and fit a flip-flo in 5.5 weeks. I weigh 80kg ( gained 7kg after i had to stop work), my bladder is apparently able to stretch to 500ml, in the past due to stricture it has stretched to 2000ml! THAT was painful! I hear you Andy about the tingling sensation, its like you need to pee, really bad!! Im ok now, but i hate that pain, so I generaly bomb out on panadol, cammomile tea, and a 2mg valium ( or 5mg)and by day 3 im ok again.
I get floatys coming thru which is normal, slight bleed depending on what ive eaten…. did you know chocolate,capsicums,oranges (citric foods)and caffiene products can irritate the bladder? Explained why i had problems for awhile, now i limit my intake. Im a chef and researched foods/bladder…and my GP agreed with my find. I guess Ill know soon enough if the flip-flo is for me, for now im happy with the bag, but come summer, I want to tan my legs and wear shorts and a lay on the beach!
A funny thing happened while i was waiting to go to theatre on thursday 9th… an older couple in the cubicle next to me were discussing the surgery, i picked up that he was haveing a permanant SPC put in, she says, ” damn! i meant to bring a spare bag!”, I spoke across and said ” I have a spare bag if you need one, i bought two with me”, the man then says, “what type of bag?” I replied “a leg bag”, he laughed and said “My wife meant a bag to put my clothes in!”, we all laughed and imagined trying to squish his pants in throught the tube! hahahahaha..funneeeee :)
Lol. Even winrar doesn’t do compression like that. When I was “released” from my urine burden at the hospital, I forgot to ask how much was drained, but I am curious. Drinking and eating after a 30 hour gap, was nice though…..
Before the incident, I was obviously well aware what would happen to me, if the time ever came, that I couldnt’ urinate. Luckily , I was already a veteran in years of water restriction, so as soon as I realised I stopped any intake. I tried for 8 hours after the realisation, but it was locked up even against my herculean bladder. So then, it was the hospital and it took from 2330, when I arrived, until 1700 the next day, for my full release, via sp catheter. I did have one random urination of perhaps 300ml at 0200. I should have gone in earlier, but I was not really wanting to be so exposed and punctured with such trauma in mind……
The first bladder scan showed 300ml at 2330 hrs……I was surprised at this. Anyway, 2 hours later I was jumping up and down and scanned again….. 999ml, which is co-incidentally the limit of the readout… he had used the wrong scan setting on the first go……..so I suffered 2 extra hours to near breaking point. I should probably try and sue their arse, but how can I justify that, when I was in the limbo of urination problems from 1999 and quite possibly caused untold damage to my ureters/kidneys/bladder/urethra. Amazingly enough though, I can still pump out 900ml of clear urine per hour, if I consume 3 litres of water on an empty stomach.
I’m not bleeding into my urine…….even when I use a flipflo to test the bladder (which is rare due to the issue of course). I’d like to ask, if you had a stricture, then you must have been developing a strong bladder as well. If you did, did you experience the sledgehammer like spasms through the urethra whilst waiting for catheter? Any kidney pain? My left kidney was stabbing at the back and at the front, it was on fire or can’t remember so much now….fortunatley…… Don’t suppose you know what your average flow rate was? Mine was about 3-4ml/sec for about the last 8 years at least.
I’m lucky enough not to take any painkillers…… :) and no more bloodshot-ish eyes from the straining. My only concern is this leaky hole. I’m drinking tea and water mostly. I only drink coffee for the flavour change, maybe one a week on average. I’ll probably just kick it out to observe.
I should say, it could always be worse…. “It could always be worse”!!!!!! I hope your legbag is stab proof, being in the kitchens……..:)
An update. I had my catheter change today and the twinging that was happening when I
a) sat down
b) stood up
has gone at this time (last 7 hours)
Also, I note that the catheter balloon empty only produced 7ml and I presumed, with the nurse, that 10ml is the start point.
I suppose
a) Not all water can be recovered from the balloon, does it seem possible that only 1 or 2 ml of extra balloon would keep it more “lodged” in place??? It’s not going to make much of a bigger sphere at all but perhaps it would be more solid….maybe that is more relevant.
It came out easy and the new one went in easy. yay. I wondered if cuffing would be a problem and lo and behold, the deflated ballloon still occupied about a 2mm cuff all round.
I noticed that this aquacath only had one year to go on expiry. Strange as guidelines say 3 years.
lol Andy. Im due for my second change..awake!!… in 6 weeks, Ill have to have a valium for that, pain and I do not go well together! God knows Ive endured enough of it! Im no longer cheffing, after 25yrs, it was time to step out due to this, i cant lift over 3kg, or move around too quick, and my fears in life now are falling over and slipping! But, I am going back into assesment and training, so probably teach in a TAFE or something. My Dissability support want me to try the Stephanie Alexander kitchens in schools, but that requires digging dirt, another thing i dont do! lol
Andy, my problem started almost 16yrs ago… I fell pregnant with my son, had a few UTI’s, one made me bleed, Dr treated it with anti’s. After i had Ben, i had more bleeding, and so much kidney pain, L&R, as well as a big tummy. It killed when i wee’d! So numerous tests revealed i had cancer in the urethra, and bladder, BUT.. when i had the urologist AND a gynie go in on the same surgery,they found a tumour the size of a grapefruit behind the uterus! it didnt show up on the scan!! So, i had a hystorectomy on the spot, at 31.I woke up in a mess of tubes, wires, machines and bandages!My husband was beside himself with fear.I had it explained to me what was going on, I said “shit”… and took it all in. Ihad several ops on the urethra after that for about 4 yrs, as peeing hurt and the cells came back!Urethra’s on women are small, I had some of mine removed, and had the muscles cut, and diathermed, and crocheted!! you name it! i had it! Kemo didnt work! eventually, I became good! I was voiding normal for about 3 yrs, then bang! my urethra closed after i had sex one night with my husband. More hospital, more stretchings, more pain, 3yrs of normal, and BANG, again!I had a SPC put in for 6 weeks, had it removed and a garden hose put in my woo-hoo! Well! didnt that just about kill me! ( so much pain Andy, SOOOO much pain!)That came out after a week, and i was ‘normal’ again, up until january 2011. We moved from our home of 22 years to a gorgeous sea-side town of 3000, so i could relax, and get on with life. Then, i noticed a stinging when i wee’d, i collapsed in tears on the flor, I knew what this was about, and I knew damn well i couldnt go through with it again. Andy, I contimplated the obvious… but my husband and my son ( he’s 15) need me regardless of this. MSU’s came back negative, and within 4 weeks, i had narrowed down to passing 20-50mil every 10-15minutes, all through the night as well, i averaged about 4 hrs of broken sleep for weeks until i was able to be seen! The Dr said as long as i pass something… blah blah blah!!!
My husband rushed me 35min away to the hospital ( we dont have one in our town)and finally they put in a SPC.. wrong tube, but still, i had one and relief!!!!! The tube was silicone, and for a kidney, it was in for 16weeks!!! As the urologist only visits every now and then! Ive been so unwell Andy!! Thursday last week, it came out, bladder washed extensively as it was putred! I could smell the toxic guk from the outside! the tube was beginning to break down! I awoke to no pain, no smell, and calm.
Yesterday, back to hospital, slight block, ok now tho, but that awful tingling pain!! I hate that!Its not as bad today… ( she says with baited breath), but as soon as i have suger, it niggles. Its because its still raw in there, and the pipe is draining upwards, so i have to keep the res at least full so it will drain better, so yeah, i try and drink 3 litres a day ( i feel like a fish!lol). I know its going to take time, a long time before im comfortable with this. I have to adapt and adjust my whole entire life!! Im so damn lucky my mans beside me 100%. I often question that, and he says ‘shut up, i love you and im not going anywhere!’Andy… Our added fixtures are only understood by those who have them, and Im glad I found this chat site to vent. Shareing is Careing my friend! xx
ok… this hurts!! im still getting the feeling like i need to pee, my bladder has a fit with spasms, then goes calm, urine looks frothy, like a beer with a head on it! there seems to be a big bubble of air in the line.. is this normal?
its been doing this all day.Once it spasms ( and i feel like im going to wet myself!!!) it seems to release fluid through the tube into the bag.I went to the hospital the other night with this problem, Dr said its ok, its still draining.God i hope this pain settles soon!! I know its only 4 days. Oh well, more valium and a lie down. Im worried about it blocking! I had l;ots of ‘stuff’coming thru the line in the last two days, man, they must of really raked me up in there!
Hi Andy, it’s quite common for osmosis to occour with catheter balloons. The liquid inside being under pressure permeates the silicone rubber leeching into the bladder where it does no harm. I warn of this in the article and suggest checking and if needed top-up with sterile water every four weeks.
Hi Gayle, large or small, air bubbles are common and generally cause no problems. The symptoms you experience describe UTI (Urinary Tract Infection), or you may have an “overactive bladder.” The urge to void and spasms can be treated with a drug like Ditropan or Enablex as mentioned in the article. First I would ensure I’m clear of any UTI and wait a little while. The drugs for overactive bladder can cause many side affects.
Graham, I have had a SPC cath for about a year. I have MS, it was first put in due to bladder problems being able to urinate or urinating before I can get to the toilet. I had a 3 week period where I only had to use my plug, but in the last month or so I have been unable to urinate out of my urethra when I need to go at all. Now I feel like I have to go and can’t but on my way to or from the restroom my bladder empties itself out of my urethra all over my clothes. I also retain urine. Anyways my neurologist was wanting to know if this is caused by my MS I am not sure. I love the belly-bag, my Urologist says they dont drain very well. I ended up buying a whole box of them. Recently I have been unable to use them, they don’t drain at all. Anyone know what may be causing that??????? whenever I think I have a UTI my stomach hurts, my bladder drains itself, I have to go ALOT and I just feel terrible. The doctors tell me I don’t have a UTI, WTH!!!! Any advice is greatly appreciated, thanks!!!!
Hi Nicole, when did you last change your supra pubic catheter? It sounds like it’s blocking either from sediment or the draining eyelets at tip of catheter are pressing against the bladder wall. Another possibility is bypassing, where your bladder shrinks forcing the catheter tip down your urethra, unable to drain, the bladder fills until pressure forces urine around the catheter, some escapes via the catheter, the rest via your urethra. All three can cause the urge to void (pee).
Change your catheter and if you still have the problem you’ll need to have an ultrasound or cystoscopy (camera up ur urethra) to see what’s going on. I am not a neurologist but wouldn’t say it’s caused by MS, it’s more a consequence of MS caused by a problem with your supra pubic catheter. If your catheter was working correctly the episodes of incontinence (due to MS weakening your perineal muscles) would not happen.
I have been to a urologist for burning when I pee. They did a bladder scan in the office. They told me that my bladder had a lot of urine still in the bladder after urinating twice at the doctors office. They put in a foley catheter so the bladder would drain. They also put me on flomax. I have read that an enlarged prostate can cause the bladder not to empty completely. (aka urinary retention). The Urologist has not checked my prostate yet. I find this strange. How does he know that I have a an enlarged prostate if he hasn’t checked my prostate? I had the foley catheter removed last week. My stream was still weak. About a week later I had abdominal pain. I went back to the doctors office again and they told me the same thing, the bladder was not emptying, and they put another foley in. I am getting tired of having catheters put in and then removed every other week. My uretha feels sore after wearing the first foley. It hurts like hell every time they put a catheter in, and it burns for several hours until the pyrdium kicks in. Why do they want to remove the catheter in the first place? If the bladder is not draining completely, why not leave it in. I don’t know if I can continue to take the flomax, because it causes me to have dental pain and bad headaches. I also have IBS and Levator Spasms. Levator Spasms are spasms of the rectal muscles. These muscles are in a constant spasm and it makes you feel like there is a golf ball in the rectum. The Levator Spasms and bladder problems are driving me crazy. I have an appointment with the Urologist again and I will tell him to check my prostate for enlargement. Why did he write me a prescription for flomax, if he didn’t check my prostate to see if it was enlarged. Even If he doesn’t check my prostate this time, I will find another Urologist that will.
Joe, I am incapable of commenting on your problems, but if you are looking for a new urologist, check out healthgrades.com. You can do a search by zipcode and get some useful data on the doctors available close to you. Good luck and God bless you.
Graham, I get my catheter changed every 3 to 4 weeks, my next appt is Monday. Just trying to figure out why my belly bags went from working to not working, I have even tried using a brand new bag. I thought after my last cath change that would help, nope :(!!!! Thanks for your fast response!!!!!
@Gayle……..You have my sympathy. I shouldn’t really complain about my minor issues.
@Graham. I know you wrote about osmosis in your main post. TBH, I sort of discounted it because it didn’t make sense, even though I thought it must have an element of truth :) Anyway, so I looked for another reference to make sure and bosh, it was confirmed.
Thanks….
@Joe Firstly the IBS.
http://digestive.niddk.nih.gov/ddiseases/pubs/ibs/#symptoms
If I eat a few days of excess carbohydrate or certain, as of yet, undiscerned carbohydrates, I can become temporarily IBS positive with the following symptoms from the list above.
Abdominal pain (feels like a large blockage passing through, then its okay; bloating (sort of), and discomfort (a feeling of unpleasantness in the bowels).
diarrhea. This usually resolves in one or two passes, within one hour or so.
Additionally, foul smelling flatulence.
Depending on what you read, IBS can be mistaken for coeliac, partial coeliac, FODMAP positive, etc. What I do to resolve is eat a low carbohydrate diet, which I scale to my energy needs. When I go low carb, I lose all gas odours, bloating, diarrheah, pain, discomfort, permanently. I’m not saying that your IBS is false, but it seems that some doctors like an easy way out and IBS is a great catch all for “get out of my office” responses.
Additionally, there was a well known tv doctor in my country, England, who was “diagnosed” by a “specialist” as having IBS. 5-6 years later, after multitudes of suffering, he was confirmed coeliac. I’m not quite sure how 2 doctors’ could get it wrong….. IT goes to show, if 2 doctor’s can’t get such a simple thing right, what chance do patients’ have?
For my low energy needs, I can consume 50g of carb max per day, without any issues. Scale to your needs.
You may find that some of your symptoms resolve. Then again, you may not. It’s just a bit of a diagnostic for you to try.
__
As for your LUTS (lower urinary tract symptoms), any impingement that causes an obstruction to urination, of enough resistance, will cause the bladder to become stronger over time. It can also become a bit dysfunctional.
If your LUTS came on all of a sudden without any progression of symptoms, without any previous trauma, then I don’t have any suggestion.
If you felt the symptoms over a longer time, say many months, then urethral stricture or prostate issues OR (another obstruction to urination) might have led to bladder dysfunctionality. I know very well the symptoms of chronic urinary retention, bladder response (hypertrophy) strain pain and burning feeling of urination for years…..
As for flomax, that seems indicated for bph, but your doctor did not think to even mention it? Bizarre. Perhaps there is an off label use for something else. Either way, you should be informed.
Did the catheter allow you your original flow rate each time?
A reduced flow rate, of which I had 4ml/sec for many years, will give you bladder hypertrophy for sure as well as all of the typical problems that comes with it.
Use a marker pen and mark a “disposable” vessel with 50ml marks, so you know how much you are urinating.
Count the seconds and find your average flow rate ml/sec.
Have you had any comments about infections, prostatitis etc?
The pain of urethral catheterisation would be caused when it goes through the obstructive areas, usually stricture zones, prostate, or even a screwed up bladder sphincter perhaps (that’s speculation)
I was not catherisable unfortunately (emergency doctor, then surgeon, then urology registrar all tried, so I was done supra pubically.
I would restrict your water intake when not cathetered and keep it 3 litres (as per graham and others’ suggestions) maybe more.. (more dilute, less concentrated)
I wouldn’t really follow these bph medications if I were you, the latest data shows that they are not so great. Obviously, your mileage may vary.
Until you have an optical urethroscopy you will not know what your cause is.
http://www.merckmanuals.com/professional/sec17/ch229/ch229a.html
Either way, don’t leave it unresolved, as you may end up in a really bad situation.
You can ask lots of questions on the internet, but unfortunately, after a while, it can be the worst form of procrastination.
Information is power though…. :)
Every time they put a new catheter in they are increasing your infection chances, unless they follow 100% guidelines.
I hope they use a good installation gel…… They use instillagel in England.
Sorry for long post, people, but I try to leave no stone unturned. :)
@Joe
Also, I just read up on levator spasms. I wonder if it’s possible that they can cause damage to the adjacent areas of spasm over time? I had a short look on the web but it’s a tangle on there.
@Nicole, poor hun!! I feel your anguish! Nothing worse than busting and you cant go, been there, still do sometimes, even with the bag in! UTI may be the problem, or the cath sits a little low in the bladder and iritates the urethra. I tried a belly bag just recently, didnt like it! On the BARD leg bag until 6 weeks when I have this changed and put a tap on, not sure how that will go either, but Im keen to try! Otherwise im ok with the bags. Ive had my SPC for 4 mnths now, but 4yrs ago i had one for 6 weeks then i was fine, now this is permanent for me, and im ok with it. Keep positive hun, hard to do i know, keep at your Drs about the discomfort!!
Graham, i have two questions.. 1. flying to QLD in january ( from Vic), any probs with air pressure on my cath? Ill have the tap in, should i switch to a free drain for that? 2. Im hanging for a lay down in the bath! or swim, as its a great form of excercise… can i do this? Is thre a device? Ill ask my continent nurse when i see her in july as well… she’s a bit ol school, but then again, new things are popping up often, i never realised there are SOOO many gadgets connected to SPC wearing! :)
Andy,According to what I have read on the web about Levator Spasms, they can cause pain in the penis,scrotum,testicles,and cause problems in the bladder.What causes Levator Spasms? Levator Spasms can be caused by long distance bicycle riding,long distance trucking,or anything that involves sitting for long periods of time.Some people can sit for long periods of time for 20-25 years and not have any problems,while others sit for 5 or 6 years and get Levator Spasms.There is a nerve that runs vertically down each side of the buttocks and then branches off to the rectum,penis,scrotum,and testicles.This is the pundendal nerve.When you sit a lot,this irritates the pudendal nerve and the result is Levator Spasms.Like I said earlier,some people will get Levator Spasms, and some won’t.I’m no expert on pudendal nerves,but this is the way I understood it.
Joe: I agree with Bill and Gayle, get a second opinion and ask why not or tell them to leave the catheter in if that works best for you. Are you in a wheelchair? I cannot see why you couldn’t leave it in other than lifestyle.
Nicole: I don’t use a belly bag, of those here who do none have reported it as not draining properly when other bags do. Contact the manufacturer. I can only think it may be an air lock, sometimes drain bags that are old stock need a bit of pushing before they flow freely.
Gayle: In the SPC article I cover flying and swimming, neither are a problem. You can use tap or drainage bag on domestic or international flights. Most use a bag on long flights to avoid needing go to bathroom, as you can’t have your wheelchair with you.
Hi fellow SPCers!! I havent been about lately coz I’ve been working on having a positive relationship with my disability and hence, my super pubic catheter lately. We are progressing well. At first, I was hoping to divorce my SPC with my new standing up powered wheelchair (thank you Permobil c500 – sorry to advertise but its given me a quality of life!!). But the realities of living with a degenerative muscle wasting condition is – well, you still gotta pee. What works well for me is high cranberry tablets taken every day; lots and lots of water, and a brilliant nurse to do my catheter change. Yep…I do have to travel 2.5hrs for the change, but heck, thats better than having some cowboy nurse yank out ya tube and give you infections, as well as damage your bladder…OUCH! And really, who wants to live on pain killers??? Not me.
But in saying that, i realise that the Oxcytrol patches are brilliant for me to relax my over active bladder and at least I have loads of peace now. Phew. Nothing worse than a jumping up and down bladder.
So fellow SPCers, may you lift your valves in peace and squirt the general public if they ignore you – together.
JWTAS.
Small thought here. I have seen a few references to Bard leg bags by various commenters. I was given one on leaving the hospital and found it to resemble a water balloon held in place by rubber bands. The Hollister leg bag is made of heavier plastic and doesn’t seem to bounce as much and the straps are a lot more comfortable. Thank you, by the way to those who mentioned the Belly Bag. That is a nice option for more active days.
@JWTAS..love your approach to living with an SPC.. im kinda new at it, and today is my best day after surgery 10 days ago to remove a rotten one ( silicone tube initially…long story, but all good now). I have felt very alone in the world, and extremely down, but chatting here helps alot! Im not in a chair, but in the beginning i felt like id lost my legs, as i realised i had to go from all the active stuff in my life to doing none of it until i figured out what i could actually do! My work ended, my surfing ended, my jelly wrestling ended, my dancing ended, (kidding about the jelly wrestling…and the dancings alot calmer, lol), and sex has altered as well! i managed to vacuum a bit today, so that was a plus for me. My tummys not sore, and i had a bourban last night, so im getting a bit of normal back.I find i get an OAB if i eat too much chocolate or acidic foods such as oranges etc.. so i try to avoid these, except the chocolate, girls have to have chocolate!!! Anyway, nice to meet you, and hope to chat again soon, cheers! Gayle…PS, on the cathetar change thing, im due in 5 weeks for one, at a continence clinic, i assume they know what theyre doing, ive read a few nasty storys on changes, and it freaks me a bit, i think id rather not be awake when it happens, then others say its a walk in the park! a MS lady told me she said its no worse than getting poked in the belly button with a knitting needle, stings for a sec then its gone. ( rolls eyes and shudders!)
I love laughing about the unusual places I pee with the convenience of a pee bag. In a 10 km fun run race today, misty rain, freezing cold and pee bag full, we stopped and pissed on the inner city highway and no-one had any idea! How many people get to do that?
lmao@ JWTAS!! thats funnee… My 15yr old son gross’s out if he hears my bag ‘sloshing’ around as i climb our 16 stairs inside home, he says..”ewwww mum!! go pee for gods sake!” I threaten to pee on him and he soon shuts up! I tell him if he annoys me Ill wait til he’s asleep! lol
We’re going up to the snow next weekend for the day ( its close by), Ive told my lot to just follow the yellow pee road to find me! lol.
My hubby has offered to drill a hole in the floor of my car with a trapdoor so i can open up on long drives… ( could be a market for that, he’s Master tech for toyota).
I usually find a car park near a garden bed or nature strip when i go shopping, to empty before and after, besides, its good for the roses…or is that lemons?? tomatoes?? And your right, no one notices, its like your doing up your shoe!
JWTAS.. when your running, do you wear shorts with a leg bag? or trakkies?
coz im trying to imagine me in my bikini on the beach…with a leg bag, hmmm, maybe not. Ill get a tap soon, then it will look like i have a penis! much better…lol
Hi all
I have just had spc ‘fitted’ again, managed to do without one for nearly a year but can no longer self catheterise.
Surgeon used wrong instrument, size 12, so had to make a second hole with a size 16 instrument during operation yesterday.
I’ve had a lot of bleeding and clots and very painful. Keep having to change position to get flow going.
I am taking extra vitamin c, drinking lots and lots, is there anything else I can do to encourage healing?
I get a lot of muscle spasms, last time I had a spc they could not change it as my muscles spasmed and held it in place, I had a GA to remove it. This time they are talking about sedation.
Any other ideas on how to get round spasms?
Hi Tamzynne, stopping spasm and activity will speed healing. You may be able to take Baclofen or similar anti-spasmodic medicine. Keep it clean dry and sterile. A teething gel or Lidocaine may ease the site pain. Drink 3 liters steadily over the day to keep those clots down.
Hi Tamzynne, If useing Lidnocaine, be very careful NOT to get it in the wound hole! I was advised of this by the continence nurse, as the opiumate in the gel isnt good if it goes into your blood system.I use to self cathetarise and had to squeeze lidnocaine in, but i bled as the stricture was too tight, and one time i felt very nauseas after it, so i stopped useing it. Ive recently had an SPC fitted after 3 yrs of not having one, mine is now permanent. Try a 2mg of valium, or 5mg if its really bad, they helped alot with the spasms to the point of it calming right down after 4 days.I have a 16 now, and my wound site is a bit mucky sometimes, some ooze, some stay dry, mine was also streched up under GA. Depending on what your bladder is like, ( mines traumatised alot from surgery), acidic things like tomatoes, oranges, vitC and the like can actually irritate the wall of the bladder and make it tingle, even a slight bleed, so can too much chocolate. Ive had 14 yrs of this to study up what effects me food wise ( chef of 25yrs also ), so a good feed of green veg, lean meats and white meats are good. Fish at least 3 times a week, especially Tuna or Salmon. Less carbonated drinks, and watered down cranberry, to lesten the vit C content. my nutritionist, GP and I agree that foods play a huge part in healing, the fresher, the better! Home made is always great! All the best hun! Gayle.
We went to the pictures this arvo… i was quite comfy, until half way thru realised i felt a bit warm on my tummy and leg.I put my hand on my leg to find it was WET!! My connector had popped off and i had leaked on my clothes! Lucky it was dark! Of course i went to the bathroom, cleaned up, recconected and went back to the movie explaining to hubby, who thought it was amuseing! Lucky for me i drank a heap of water today, it was clear and odourless! and I wasnt badly wet, just damp. LOL… bloody things!!!
The dreaded pop-off. My brother was helping to empty my leg bag once (no not on a highway JWTAS), I asked why one brown suede leather boot was darker than the other. “Because it’s full of piss numb nuts.” He replied, “Your tubing has come unplugged.”
hahahaha Graham!Some days i can hook it all up and not notice its there, other times it annoys the crap out of me and i waste a roll of sticky!lol
Im thinking of permanently tattoing a floor plan on my tummy as to where is the perfect place to stick the tube! lol
Thanks for suggestions. Love the idea of tattooing a map! I forgot which way was closed on the leg bag valve so took a while to figure out why I had wet feet…
Have 3litres measured out in fridge, just a couple of clots overnight. Will try lidocaine gel and will speak to docs about anti spasm meds.
Hi graham,
I found your website by accident I have had an spc for 14 years and have always suffered with problems. I do not have a spinal cord injury but as a long term spc user I have encountered many of the problems your members have! At the moment my spc is leaking I am now on a size 20 standard size catheters it leaks all the time I don’t know how I can carrry on like this I have sevre arthrits & I am registared disabled I do use a wheel chair & I have a mobility scooter! I am battling kidney stones at present I have a pseumadonas infection & I have become allergic to nearly all the broad spectrom antibiotics I think there is only 5 I can take and one of them is only given iv! It does get me down I am averaging a catheter change a week & not every 28 days! I have botox injections every 6/8 months! Its good to know that there are others out there like me your website is great.
hey hun,hang in there, i know its hard to say, Ill probably be in the same position as you in time to come. At tmes you feel very alone, and feel that no one is listening… but thats where graham and this site come in handy, people DO listen! And its great comfort to know your not the only one in the world, its more common than i thought! Im not in a chair, mine was from cancer, mainly in the irethra, so i had strictures, and now have a perm SPC. IT and i are trying to come to terms with each other, even in bed it likes to hog things! I hooked up a night bag on the end of my leg bag as usual last night, and woke up several times tangled up in the thing! lol, i cursed many times at it to MOVE OVER!!!!
Funny storys help you to see the lighter side of things, as heavy as it is to live with at times. All the best hun, and take a deep breath! Speak to your GP about how it gets you down, there’s a thing called a ‘mental health plan’ that they are responcible for for all their patients in a long term situation like this. They asses things, and bring to you the care you need, from social workers to councilors to groups etc. Im off to a physio gym group, 1st time today, to learn how to excersise with my SPC so as not to impact too much on my body to put it at risk of more damage. Im only 46, and Im looking forward to mingling with the older gen, theyve had them alot longer than me, Im sure they can teach me a thing or two ;)
@Gayle…I ‘ran’ in the 10km race in my whizzbang, rolls royce wheelchair.
A really important point about your SPC is to make sure you have it attached to your body especially if you are an active wheelchair person. As my wheelchair now works to make me stand up (yipppppeeeeeee the world is so different from up here!) my catheter moves around internally. Because i’m standing up, then sitting down. Standing up, sitting down. As I’ve only had my standing up Rolls Royce (my nickname as apposed to the “Holden Ute” I had before), for approximately 8 weeks, my catheter really played up. So I do endeavour to use a flexi-track to secure my catheter tube firmly to minimize any movements. However, positioning it can be awkward.
Graham, you mentioned earlier that taking anti-spasming medication over a long period has side effects. What is your experience here? Does this apply to the patches? I use Oxytrol patches which are like Ditropan but in a patch form. Taking Ditropan orally caused me constipation. Which of course off sets UTIs! :)
How’s standing up going? Is it powered or manual stand, JWTS?
Anyone had nausea with Urispas? I feel constantly about to decorate the floor sick…….what about other types of antispasm?
How did your exercising with spc go @gayle? Learn anything new.
I have had severe radiation cystitis for the last 4 month and severe bleeding.I had the prostate removed 5 years ago without any problems.The the bloody urine and pain started .After numerous foleys inserted all of which clogged from clots I learned to cath and irrigate myself .They finally put in a spc 10 months.They now want to remove it so they have me blocking it off so I can go normally but can last for about 8 hrs. max Plus I’m totallt incontinent The spasms are as bad as I have ever had them in addition I’m passing small bladderstones and the bag is full of white sediment with very dark urine Has anyone had any similar problemsI’m doing hyperbaric therapy so the bleeding has subsided somewhat
I have had indwelling catheter for about five years. I would like to get a super pubic but have been told that I cannot by Dr. because urethra is too stretched. Is this true or is there a surgery to fix this? If anyone has any answers please share with me thank you
hi there just wondering im on antibotic for uti the med is cipro but its called ran cipro ive taken cipro before but never heard of ran cipro and can you still eat things like meat?
thank you and hope to hear soon
Sorry I’ve been very busy this week guys.
JWTAS: I haven’t used the Oxytrol patches but would like to. My GP did mention them, I currently take Ditropan tablets which can have many side effects, for me skin very dry and itchy. I don’t recall saying long term effects anywhere, and can’t think of any, off the top of my head. As Oxytrol are relatively new, I doubt there would be much long term study info publicly available.
Tamzynne: Nausea is a side effect of Urispas. We mention several other medications; Ditropan, Detrol LA, Vesicare, Enablex, etc in the article you might like to trial.
Mark: Your case is very unique not atypical of SPC users, so I can only agree with, and direct you back to your urologist. You could always seek a second medical opinion if you feel mistreated. Your sediment levels sound extreme to me. Remedy that and things might become easier.
Connie: I cannot see how a urethra could become stretched from an IDC, he may be referring to the spinctor muscles becoming stretched. All things being equal, as long as you can retain 300ml or so of urine, without any catheters or voiding, you should be able to have an SPC.
Onkar: They are the same drug, both are ciprofloxacin. RAN-Ciprofloxacin is simply one of several trade names for ciprofloxacin in Canada.
hi graham, is there anyone that can help me with my problem. i have i had colon resection 2 1/2 years ago and i could not urinate after. so they said it was my prostate, had prostate surgery, did not work. i am self cathering, my problem is i have the urge to go most of the time but cannot which is driving me crazy. the doctors feel if i have surgery on my prostate a gain and fit me with a spc the urge will go away. the injury was caused by the colon surgery. is thers anyone else with this problem who can help me. i had to go to size 12 catheter because i could not get a 16 in anymore. would an spc help me? i had only one infection in 2 1/2 years. i am geting prostate and spc surgery on july/27/2011. is the spc right for me because i get a lot of pain when i self catheter. my name is joe.
Hi Joe, can’t say for certain but there is a good chance a supra pubic catheter will eliminate your urge to void. If you find the SPC doesn’t stop the urge to voiid, hurts to much, or for any reason you’re unhappy, you can simply remove the SPC and resume your previous method of bladder management.
Graham, great site, lots of helpful info. So nice that you take time to reply to people. Thank you.
Hi Graham,
Am very pleased to have discovered your world of knowledge on UTI’s and SPC’s. I write for my mother Monica, who has suffered from MS for approx 34 years now.Age 70.Monica is totally disabled now, and has been wheelchair bound for 12 years now.Mum is unable to care for herself in anyway, and requires 24 hrs care.l am her youngest (43) and basically have never left home, as my father and i care for her.Mum has had a SPC for approx 9 years now ( Bard Foley) and in the last year mostly we are experiencing pseudomonas infection almost every month now, which is crippling her on many levels.Last year mum started having seizures related to UTI which she has been hospitalised 8 times in the past ten months (for up to 4 weeks at time’s).She was given a course of Gentamiacin on most occasions for 3 – 4 days and discharged home, with out any further tests being taken.At present mum has been in bed at home now for 4 weeks as the Nueroligist at the hospital increased her seizure meds ( Nerontin) by double to prevent further seizure, and she has been over medicated and cant sleep for days, followed by her not being able to wake for days. This restricts us from getting enough fluids into her on a daily basis.Her GP has since lowered the dose again, but she is still not right since the increase.
Mum is normally the happiest lady i know, and full of good cheer every day.Our recent UTI test came back positive again with pseudomonas last week, and now the GP says her body will need to fight it as she cant be on Gentamiacin everytime.l beleive the infection is disorientating her, however her temp has been stable.l am very frightened of another seizure being triggered by the UTI as this sets her back for at least 1 – 2 months everytime.Monica takes Hiprex one tab AM & PM, one cranberry capsule AM & PM, 2000 mg of Vit c daily, and one Iblex daily to assist prevent UTI, however it clearly is not working anymore.The Incontinence helpline has suggested that her SPC be changed every 2 weeks instead of every 4 – 6 weeks to try and prevent UTI’s, and advised that a bladder flush weekly would not really assist.ANY suggestions would be of great assistance and appreciation, as i feel i am losing the balance for her.Mum is so special to me, and i research always however i find differing opinons from most nurses, and have lost faith in the care approach of the system in general now.Many thanks for your time.Your work here is so very special.Kind Regards, Tania. Australia.
Hi Tania
What about Botox treatment to stop the bladder spasms? Also, i take Oxytrol (i think that is what it is called…these are patches). I would seek out a second opinion from an Urologist as well. These are just my ideas and opinions and not necessarily to be taken on board.
Warmest regards
Jane
Hi everyone.
I have an SPC because as I have restricted mobility with muscular dystrophy, I am physically unable to stand up and get out of my chair to go to the loo. As I dont have 24 hour care, and limited personal care supports, I have my SPC. I can still feel everything of course, therefore, I am on Oxybutin patches which assist with my over active bladder spasms which are really painful. The problem with this medication and many others is, it causes constipation, which exaberbates the risk of UTIs! Im wondering … if you dont mind me asking, if anyone else who is in a similar situation and what you do to alleviate bloody constipation because i dont know about you…but being constipated is extremely unpleasant! What remedies do you use?
Finally, i try not to think but i am scared of the long-term use of medications!
Warm regards
Jane
Hey gang… Ive been off for a bit, had a flip flo tap put on a cpl of weeks ago now and manageing fine. Love it actually, free’s me up to do things, and wear jeans and shorts etc.. although no shorts at the moment due to freezing bloody Vic weather!!! Im off to QLD after xmas for a much needed break, so my shorts will be on then! Im into hospital soon for anothre cath change under sedation as my bladder copped a fare beating and they want to make sure everything is in place properly also to quaterize a bit of flesh still coming out of the wound site, ( that gets a bit irritating) other than that im well and happy! Hope all is well for you all… take care… Gayle xx
Hi Tania, how nice to hear of your devotion to dear mother. Thankyou for the lovely photo and detailed synopsis. Don’t forget to live your own life and look after yourself as well. Being a primary carer can quickly burn you (or father) out. There are government supported schemes available in Australia, even if just to assist you, or clean house. Look after yourself to look after Mum.
To UTI. Vitamin C increases acidic urinary pH which kills bacteria and allows Iblex efficacy. Conversely however Vit C can reduce Hiprex efficacy. Problems may also arise using Iblex and Hiprex together and I suggest a maximum of 1000mg of Vit C on any one day. Remember there are good bacteria to. For these reasons I suggest 2-3 week trials of each these combinations to see which proves best.
Hiprex + Cranberry (Plum or Prune juice or capsules) + 3 litres /day
OR
Iblex + Vit C + 3 litres /day
You may then like to try Ethical Nutrients Urinary Tract Support with, or in place of, the suppliments.
I agree bladder washouts would be of little help in your mothers case unless so unresponsive she cannot take fluids. A supra pubic catheter is a continious closed drainage system. The benefit; closed to infection. Anytime the system is opened it is open to infection. Likewise increasing frequency of supra pubic catheter changes is usually of little benefit if not detrimental. Better to empty the drainage device more frequently instead. Catheter related infection is extremely less problematic than change realated. A Bard foley lifetime is 4-12 weeks. If concerned however, and the budget allows, silver alloy catheters (coated on both internal and external surfaces) demonstrate a significantly greater reduction in the development of catheter-associated bacteriuria. There are more anti-sediment-infection tips in the article.
I cannot emphasise the importance of pushing fluids 3 litre + daily. Many of us, myself included, have ridded pesudenomas simply by pushing fluids.
Hi Jane,
Thank you for your response.Is Oxytrol used for bladder spasms? Mum dosnt complain of bladder spasms, yet she has seizures in the brain related to UTI.In regards to constipation, maybe try some Pysillium husks, you can sprinkle some on your cereal, can be obtained at most larger supermarkets, also try a glass of warm water with lemon juice.We have used coloxyl with senna to soften the stool, and movicol to move it, however as im sure you know sometimes they seem to just build up in your system.l guess you cant beat natural fibre.All the best.
Kind regards Tania.
Hello Graham,
Many thanks for your detailed response, most interesting and we are thankful for your knowledge and input. We have started to trial the ibilex and Vit C for 2 weeks, and will then try the other option and let you know how we go.Am also chasing up the silver catheters and will definatley make a change there.Mum would consume approx 2 litres a day, so we will push for 3 litres, its been difficult as mum has been so knocked out with her seizure meds and we have to hand feed her as her arms are contracted with ataxia also.Will stay in touch. Am very pleased to have made this contact with you.
Kind regards & all the best to you.
Tania.
Hey Graham: Great information! Where is a good source to buy silver alloy caths and Hiprex/Ural (which is better in your opinion?). How routinely and how do you test for the PH level. In your article did you mean that you take the Hiprex on-going 2x daily every 3 days or is this only when an infection is detected? Do you believe in taking collidal silver as well?
Thanks so much!
Hi Brenda, I don’t know where you live. I suggest contacting your local hospital, pharmacy or doctor for Hiprex and silver alloy catheters, or buy online especially pH kits. If they don’t have Hiprex they should have similar, Urex, Ural etc. I wouldn’t say ones better than the other. I haven’t needed to test my pH in 12 months or taken Hiprex in years. Some take it twice daily as directed for prevention, luckily for me, I now only do when sediment and infection levels are problematic. Collidial silver works wonders for some and has no effect in others, it’s one of those can’t hurt to try things. You should consult your doctor before taking any medications.
Hi. I am new to this site and find it very informative. Hopefully someone can give me some help. I’ve had a SPC for almost a year. No major issues EXCEPT ODOR. I can put a new leg bag on, empty it once and the odors start. I know others can smell it but are too polite to say anything. I drinks lots of water and I know meds can cause urine to smell but this is ridiculous. The odor comes through the bags even though they are clean and/or new. No infections, tube changed every 4 weeks and only 1 infection in 10 months.
I have MS and due ignorant doctors, I have been in a
wheelchair full-time for 2-1/2 years. I am still doing PT to try and at least stand & pivot, but no luck yet. SPC is wonderful except for the odors. Can anyone help? Thanks in advance!
My doctor has suggested that I have to have suprapubic procedure done next week but I am too scared to have a tube coming out from the stomach, followed by complications.
Can you give me courage and urgently let me what to expect.
Thanks.
June: Without infection that is odd. Could you be overly self concious? I know I smell my own wee before anyone else does. As long as the tap is closed you can rinse the tubing end in the flushing toilet water. Or use an alcohol or baby wipe to clean the tube end. I find wiping the end of mine with a a baby wipe each time prolongs the “I can smell it now” factor.
Mansoor: Keep in mind it’s a relatively simple proceedure and reversible.
Graham. Thanks for your reply. I am probably more sensitive to the odor than others, even the nurses who change the tube say that. I’m not sure what a ”tap” is. They have suggested soaking the bags in straight vinegar. All I personally do is change from leg to night bags. They agree that urine smell can be stronger due to medications. I do know that others can smell the odors. When I see my urologist in 2 weeeks I’m going to ask him about flushing the tubing myself once a week. Maybe that will help. The odor usually starts a week or so after the tube is changed.
Mansoor. The surgery is not a big deal. In and out the same day. No shower the next. Have a good urologist surgeon and he/she should make you feel comfortable and knowledgeable about everything. I know in most ways it makes life easier. No more going ome in between errands to use the bathroom. I keep a bottle in the van along with wipes. Loose pants so no one can tell. I can make longer road trips without having to worry about wheelchair accessibiity. Being single I don’t know about the relationship aspects. Good luck!
Mansoor,
I have been fighting with strictures of the ureter for the past 2 years and the SPC, which I have had for 3 months, is a whole lot easier to deal with than cycle of emergency room catheters, opening procedures, leaking, closures, etc. I have actually been able to sleep all night!
Bill
June… I know what your saying! Ive recently had my cath change again, 3rd time, Ive had it for a few months now due to cancer of the bladder/ urethra. I was admitted to the day ward last week under a mild sedation to have it removed as my Urologist wanted to make sure everything was ok before i have it done at the continence clinic by the nurses. I have a change every 8 weeks. I talked to him before going in about the smell i could smell in the cath i had! It had a urine smell to it after two weeks of being in it would smell like wee! even my husband said he could smell it at close range, lol. The synthetic material of the cath was pouris, and my urologist said they were prone to doing that, and he would give me a user friendly one! i woke up on friday with a new grey cath.. softer smoother tube, it says…( looks down…) BIOCATH-HYDRAGEL COATING.
If that helps, consult with your Dr. I was also getting an iritation at the wound site, it remained a bit mucky, no matter how i tried to dry it out, but now, after only two days of haveing this in, my wound hole is nice :)
June, i hope this helps!!! xxx
Bill… hearing you!! I too had strictures due to surgery of the urethra and had to make a mad rush to emergency a few times! life with the SPC has made things sooo much better!! I too sleep a full night! I have a flip-flo tap during the day, and a bag at night.
Mansoor.. you’ll be fine, there are NO complications normally, you may feel a bit tingly as if you need to wee for a few days,sometimes bleeding may occur for a cpl of of days, but it should ease off, valium 2mg will help with the spasms and take paracetamol ( panadol-Panamax) but NO asprin!!.. take two valium if you need to.
Drink at least 2-3 litres of fluids a day to flush the kidneys, then settle into a normal drinking day. Alcohol after about 2 weeks. It will feel strange, and eventually you WILL get a routine to things, and begin a “normal” life again! NO heavy lifting!!! limit this to around 5 kilo after everything has calmed down. You dont need to stress your tummy muscles that hold the balloon. All the best!
Hey Gayle, thamks for your input. It’s a relief to know I’m not crazier than I know I am (lol). I will ask the doc about a different tube. My luck is that they only use the same kind. My site still has some drainage after almost a year and I just tape a gauze pad around the tubing area to keep the undies clean.
I have loved getting a great nights sleep without getting up every few hours.
I’d love to know how this one works for you (odor wise). Interesting how my doc says every 4 weeks and yours says 8 weeks for tube changing. It’s not a big deal to have it changed. A little uncomfortable whwen the new one goes in but other than that no problem. After a shower I use a gauze with hydrogen peroxide to clean around the opening but still get some leakage. Also sometimes a little blood in the urine the first day of tube change but no big deal.
I also have to ask about the flip-flo tap so I don’t have to have the bag in the shower with me. And if it would also be good for during the day when I’m home so that I use the toilet and get that wonderful transfer exercise. Would also save on the bags. I have to buy my own night bags and the nurses usually give me 3 leg bags when I’m there. Insurance doesn’t cover the cost.
My doc also told me originally that I could only have the SPC for 5 years max.
Hi Graham, I had botox several months ago with fair results. While I was under they put me in a seated position to see with a scope why I don’t drain well unless I am laying down. They noted my tube protrudes into my urethra, blocking all drainage causing reflux back to the kidneys. I go back in September to have the site relocated. I am excited about being able to put some more miles on my nice new power chair, but a little anxious about the procedure. I am afraid the same thing will happen again. It took almost two years to convince the docs something was very wrong. How many times can they re-tap me? Will my bladder change shape requiring periodic adjustments, or was my first doc hungover?
Hi Laurie, I had the same problem 18 months ago. The tip of my super pubic catheter was poking up my right hand side ureter preventing the right kindney from draining freely. Confident it was happening they put me under a general anesthetic and conducted a cystoscopy (camera on flexible cord via the penis) to see into the bladder. It was indeed poking up the right hand side ureter.
They repositioned my supra pubic catheter 2.5cm (one inch) higher directly above the old site. After sixteen years with few problems I’ve had nothing but trouble since. Beginning with a very obnoxious lady surgeon, to the re-sited catheter poking down my urethera, blockages, severe trauma blood loss, and multiple renal infections. In between I have been trying to find time to update this spc article with full details of my re-site procedure and experience.
I need you guys to write personal articles for me so I can get back to updating my own, coding and adding site features to make your time here more enjoyable.
In short Laurie you can have several re-sites in a lifetime. Your bladder won’t change shape but stretching it gradually is something I suggest. A small bladder is typically the root cause of spc, catheter related urethal blockages. Perhaps ask about taking or increasing your intake of anti-colinergic medications. All things going well a supra pubic catheter re-site should be no better or worse an experience than the first time installed.
Dear Graham, I am so sorry you have gone through all that. Our surgeons must have trained together.
I could not have handled my medical circus without all that I have learned at this site and my SCI nurses acting as my advocates. I wish there wasn’t such an adversarial relationship between some surgeons egos and informed patients.
I hope you are on the mend and that your surgeon gets a dose of her own medicine.
Hi, I care for a guy who has a SPC fitted, he has Cerebral Palsy and has had it fitted for about 3 years, to put it bluntly he has had no end of problems with it blocking, also his District Nurses and even his GP refuses to change it for some reason, which means a round trip of around 100 miles to the nearest hospital. It normally flows well for a few days and then will normally either stop or become intermittent at best. Does anyone know if his CP is a factor or not and are there any tips you can give (non invasive) to try and keep it flowing?
Any help in this matter would be really appreciated.
Hi Russ,
l have cared for my mother for years with a SPC, i have found that it stops draining when constipated or the bowels are slowly trying to move.It could be due to sedement in the tubing, or spasms can dislodge the draining as i have found.This information is purely my experiences only, so hope it may help in your search for an answer. The district nursing/GP should be referring you for follow ups with a urologist or even a local incontinence specialist.At times i have also found the district nursing tell me to just head into casualty for a SPC change, which can take up to 10 hrs on a round trip.Its not right.That’s what the service is designed for – to attend the home.
All the very best.
Tania
Hi Russ,
I have found that constipation is a big factor when draining slows down or stops. Anything to help have regular bowel movements will be good for spc drainage. Hope this helps!
Graham,
On August 1st you said “I need you guys to write personal articles for me so I can get back to updating my own, coding and adding site features to make your time here more enjoyable.” I am not quite sure what you have in mind, but I don’t want to ignore your request when it sounds like you are having some challenges right now.
Bill, yes it’s been a tough week. Organising a bunch of wheelies for this years second club adventure, a whale watching cruise. Next month I’m off to Thailand. And then there’s my life… I didn’t mean to sound whiney. I know I’m a very fortunate guy.
A wise man once said, “..hearing from actual patients who are living with these would be a useful piece of information..” This is one of the core pricipals our website was founded on. Not everyone has the time or knowledge to create and run a website. All have stories to tell. I created a gateway making it easy to contribute and share your experiences.
I plan to make an article submission service in time. Meanwhile I encourage you all to submit articles/stories via our Quick Contact form at the bottom of any page. Or request Author status to maximise the popularity of your posts. Register a profile here Bill, I will give you Author status so you can publish any number of articles. Any of you guys willing to write just let me know.
Guidelines:
Try to keep topics site related (all things SCI, disability, wheelchairs etc)
Write with your keyphrase in mind and repeat it. (eg if your topic/keyword is about “giving enemas” you wouldn’t write about ice cream)
300 word minimum, no max limit
Group paragraphs under h2 headings
Add images and links
Follow the automated SEO tips
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Any questions shoot me a Quick Contact email.
Hi! Yesterday, I had suprapublic tube inserted in my bladder. I was nervous at the beginning but the procedure went very well and I am back at home with no problems so far. On Sept. 13, I have been booked for urethral reconstruction. Would like to hear from those of you who have had this done so that I know what to expect. Thanks.
Hi Mansoor,
Just wanted to say I’m glad spc surgery went well. I’m sure the reconstruction will too!!
June
Thanks June for your good wishes. I really appreciate it.
Regards.
Mansoor
Mansoor: Taking a part of your bowel to create a tube to pee through pretty much says it all. Any invasive surgery must take into account the many personal case factors. Urethral reconstructive surgery then, is not something I can really comment on here. Other than adding my best wishes for it to go as well as your supra pubic catheter procedure. That is a good sign, sounds like you’re in good hands.
I’ve just sat and read all of these comments.
I guess I’ve got really nothing to complain about, but I’m going to post and ask anyway.
I have had my SPC for 3 months now and am approaching my first catheter change next week.
I haven’t suffered with any UTI’s until a couple of weeks ago. I have had one that seems to have only got worse and worse.
I am in constant pain and although they’ve tried me on four different antibiotics I have had an allergic reaction to each one, so now they’ve decided that they aren’t going to treat it.
I am taking 2 x 500mg Paracetamol every 4 hours, 2 or 3 x 50mg Tramadol every four hours and 500mg Naproxen twice a day, but I still can’t get on top of the pain.
My Urology nurse wanted me to be admitted to hospital and given IV antibiotics so they could clear this up and check I didn’t react again, but my Urology consultant thought I could do without the antibiotics and only needed an ultra sound scan of my kidneys to check that they haven’t been damaged by this infection.
They have suggested that taking my SPC out might be a good idea, but at 21 I don’t want to be back in and out of hospital having gone into retention again and again like I was before. Before I got this infection and the pain took over my body I was able to pass between 0ml and 50mls myself but was retaining between 300mls and 800mls (depending how much I had drunk).
Has anyone esle had to face this??
Would really appreciate someoen else’s view.
Hi Michee, both your urology nurse and attending doctor are right. Antibiotics are way over perscribed. Countries where you can easily buy them by the box-full are to blame. Responsible countries must limit use to prevent cultivation of super-bugs on their home soil.
Acute renal (severe kidney) infections are life threatening. Oral antibioitics rarely kill off acute kidney infections. In most cases they simply waste a weeks time swallowing pills to no effect. Acute renal infections are so bad, they are often visible on x-ray and ultrasounds. If so, IV antibotics over 5 to 7 days are required. Even then you may need to be a little proactive and vocal to get it.
Put off removing your supra pubic catheter. It is a really bad idea when you have infections. The last thing you want is an infection trapped between your bladder and stomach wall. Push fluids instead. If you are laid-up with a weeks worth of IV antibiotics in hospital. That would be a good time to have your first supra pubic catheter change.
Argh!
Hello all!
I’m posting again for a few reasons.
___
ROUTINE cath vs emergency cath. changes (Supra pubic)
This has me worried. See if you can spot the pattern.
8th April 2011 Original admission for acute urine retention.
13th June (63 days) routine replacement of catheter, no problems before change.
26th June (13 days) Emergency change of cath required as woke up with blockage, drank water, then realised………… I had to urinate through uretha. After 5 passes, pain is eye watering due to some damage sustained whilst waiting for original release in hospital. Vow to drink more water……
12th July (16 days) Emergency change……nurse suggested catheter top strap needs to go behind, which makes more sense, but means that its easier for the eyelets to break. (Basically, if strap is too tight across outlet, its likely to reduce output and maybe force a blockage) I’m using simpla coloplast leg bags.
29th July (17 days) Emergency change again….. Strap was in behind position and I only just noticed the 2 week ish pattern of emergency changes…….
First cath 8 weeks easy
next 3 – 13 to 17 days……..
Theories. Heat leading to lower urine output= less pressure of urine, easier to block over time.
Urine pressure drought during long sleeps….. This makes more sense to me.
I wake up many times with no residual urine in pipe… Do enough days of this and eventually you’ll be blocked I reckon.
Why? I cut open my last changed catheter and it was full of mineral deposits which were crushable, but blocking none the less. The sleep drought slowly leads to blockage like stalagmites and stalagtites in caverns.
I started charting my urine and my liquid in on a 2 hourly slot as an education process.
Whilst staying at home and wandering about a bit, I can down 6.5 litres of fluids on a hot summer day (about 23-25C 80% humidity) and urinate about 4.2. (Overkill Perhaps)
During the day my urine is ultra clear. I am now working on the following method.
2 hours target during waking hours= output about 300ml/150ml per hour.
This prepares me for sleep where I pre drink about 500-800ml.
Every 3-4 hours I wake up and drink about 300-500ml (this is in a warm 20C+ room)
This creates enough pressure for urine to be pushed out from the lying down posture, through the leg bag and to the night bag.
I may be able to cut these sleeping amounts in half but I’m nervous of another blockage/another change. I had an anxiety attack just after my catheter was changed and another attack was started just by my thoughts that my catheter might be blocked when I woke up at 6am once.
So, personally, In summer I will aim for 150 output per hour and at least 150/hour whilst sleeping. For 16 hours waking this is 2400 ml and 6 hours sleep = 800 at least
= 3.2 litres output. This means I’d need to drink about 5 litres at least.
Symptoms that your catheter is going to play up MIGHT be like this.
1) You are asleep, in pancake posture (ie flat-ish on bed)
2) You are disturbed by a little retention pressure on bladder, due to it not draining fully.
3) You get up and within 1 minute you have filled 200ml into a leg bag, due to pressure differences – when you would normally void 200ml in an hour…….(maybe 400 for some)
Now, this could be a result of near blockage (I’ll explain next), low pressure output due to nearly out of urine during bed posture or both…..or “x” :)
Bard Aquamatic Biocath with hydrogel coating CH 16 5.33mm overall diameter (2mm internal – flow diamater)
My thoughts on near blockage were created by the sudden massive fill aforementioned.
Calculations. You may not have thought of it but……..
1) 200ml in 1 min(I have checked this) = 12 litres per hour, 0% blocked.
2) Therefore, throughputs are as follows:
a) output at 50% block = 6litres/hour – 100ml/min = 1.66ml/sec
b) 75% block = 3litres/hour – 50ml/min = 0.83ml/sec
c) 95% block = 600ml/hour – 10ml/min = 0.166ml/sec
For each additional 1% block : subtract from (c) 120ml/hour – 2ml/min – 0.033ml/sec
Technical and elaborate much! but I like statistics and it may allow you to get some idea of your output potential, although it tends to only become noticeable upon a near emergency stage…
So, you can see that the average catheter will function fully until about 97-99% blocked. However, you’ll notice an pressure resistance eventually if you glug lots of liquid on an empty stomach or on diuretics.
Also, I may go further to say that you may even get more through the catheter but I’ll leave these here for education or whatever you want to call it. :/
A full CH 16 catheter will hold about 1.35ml of liquid.
ODOURS!!!!!
Like JUNE, I have started to notice an odour that seems to permeate the bag, yet no urine……or dampness. (I didn’t notice this until the last 4-5 days, even though had same leg bag brand for 16 weeks…..) I did a test and hand rubbed a brand new, unused bag and there wasn’t any odour. The odour on 2-3 day + bags is clear and penetrates my left leg clothing as well. This may be a result of summer and higher air temps increasing the chemical reactions. I can imagine a stronger odour if I was not drinking 4–5 litres per day.
I try not to glug the liquid down, unless I might be in or near drought stage.
I’m trying to regulate it more consistently.
I also take water with food, because, putting it frankly, firmer stools are not so pleasant to pass…..This is standard recommendation anyway I believe.
Regardless, I could be far worse compared to the horror stories I’ve read :(
Another thing, regarding crystal deposits, these can be crushed by rolling the catheter.
Maybe once per day, give it some squeezing. You obviously, can’t crush any that are out of touch, but clearing the blockage ahead may stop a backlog.
The catheters are quite amazing really, are they not!!! :)
Read about the medieval days of catheterisation for some truly shocking education.
Antibiotic and pain free – or Risk the Superbug: My Dilemma, My Choice.
Ok, so the anitbiotics are bad for you, but they certainly clear my infections up!
Recently, I’ve had really awful pain in my bladder which leads me to think I have an infection, so I take a course of antibiotic Cephalexin. And i’m better. But then I may have a catheter change three weeks later, or my monthly menstruation or a personal carer who may not have washed your bum properly by mistake – and BINGO you’re back to the antibiotic.
I’m frightened by the recent media of too many antibiotics. But given that this site is the most active and thorough site I’ve found about SPCs, well truly – dont you agree that this idea of SPCs are not very well investigated or enough professionals in the area????
The dilemma I have is if i dont take the antibiotics, I’m in awful pain, crook, cant work, unproductive, cant earn money then to pay bills…its a flow on effect wouldnt you agree? I guess I’m going to have to resign myself to the fact the likelihood of dying from a massive infection (a super bug) because I have taken too many cephalexin’s in the past for minor infections is pretty high.
Well buggar it… I could get hit by a bus tomorrow too. To me, its about quality of life. Pain free for me please! So I take my pro-biotics now after a course of the anti-biotics – I’ve taken Grahams ongoing points about liquid, liquid, liquid – (this helps the constipation guys!) and I eat really healthy meals – loads of veges, greens, fruit, fish and protein. Given up the grog, and stopped smoking faggies (mind you I’m prone to one or two in social settings).
I’m taking my chances though. I have no choice…but please Mr Media man and Mrs Medicine woman…why cant I be an extraordinary human and be the lucky one who can have multiple antibiotics and not get the super bug. I just wish they would stop scaring me. Because its unfair and when you are in our positions, we dont have much choice between pain and quality of life.
What may not be good for some, may be a better choice for others.
JWTAS, exactly, it’s the needy that suffer. I have lost a couple of wheelchair friends through infection. One slipped away from us on this very website before all our eyes. It sent a shockwave through our community. My thoughts always with you Carla.
Fourty years ago the largest cause of death amongst people with spinal cord injury was renal failure. Today it is heart and respiritory complications. At similar incidence rates to the mainstream. I understand the “responsible” position and duty of care. I have no problem dying for the betterment of mankind. If it were my mother, or loved one saying this, I would demand antibiotics and more. Often, we are good at looking after others, but fail ourselves. If you ever need to vent the annoying aches, I am a good listener.
Andy, if you have trouble posting, your email address keeps getting caught in our anti-spam filters. Register an account to remove the name email etc fields from the comment form site wide. Thank-you for sharing your consise info. That is very good for us to know Andy. I feel the sleep drought effect. As a quadriplegic, a day in bed sees my average 1600ml urinary output increase to 2200ml. The next day when I get up, all the fluid pools again. Daily output down to less than 1000ml. Then stablizes at 1600ml/day again the following day. And I don’t even have fat ankles yet!
Thanks for notifying me about the email address issue. I use email shielding for each website. If a website is hacked and addresses harvested I will never have to change my main address as the service will just eat further emails.
Good idea about registering as it saves wasting time on “spam checking”.
I just realised that I registered on the forum, then realised why I still couldn’t post here because this is a wordpress section……..grrrrrr.
Sorted now.
When you say fluid pools, do you mean it pours into the urine collection device once you are upright, in a very short time? (signifying that it was languishing in bladder etc for hours)
Hi Andy, in time I plan to intergrate the logins but for now the forum is a seperate registration. You can talk about any and everything on the forum, post articles, multiple images, video, pdf etc, create polls. Tell us all about your day, thoughts and experiences… anything. People can easily answer and start up a coversation with you.
By fluid pooling I mean after a few days laying in bed, when I get up, fluid begins to build up in the body. Mostly due to a lack of mobility quadriplegics have poor circulation. The first day up after extended periods in bed, wheelchair users can expect a low urinary output. The body needs to re-store a certain amount of fluid to prevent dehydration. More proof of this is on that first day up, you often feel lethargic and lack concentration, common symptoms of dehydration.
He Graham, it’s been sometime since Ive left a comment, although I read all that are sent to me by email. But I have to thank you for all your help over the last 3 and half years. I am schedule for surgery on Aug.15 to have complete urethral reconstruction. So one bad car wreck and 3 and half years later, they are going to fix me. Will let you know how it goes, so maybe if anyone in the states needs a similar operation, maybe I can be some help to some one like you have me. Having an SPC for so long now its really just become second nature, I’ll have a new battle to face now I guess, but I’m up for the challenge, I hope.TTYL.
Graham, thanks for clarifying the pooling.
It’s amazing how a slight change in the heat index (not a system that England uses, but a good idea to combine temp + humidity) can reduce my urine needs.
I’m practically producing clear urine (noted by the 10mm plastic outlet colour tone of leg bags)
My old technique, pre SPC, was to glug water down like a camel.
This does not work for me now. I have to take small but steady doses, otherwise I have a pointless 600-900ml per hour cascade (short term of course)
____
Shawn,
that sounds like a long surgery.
I’m hopefully about 4 weeks or less away from an optical urethroscopy then suggested methods for severe possible multiple urethral stricture repair. I can’t believe I just wrote hopefully, because I spent a decade not dealing with the problems, by avoiding delicate matters…grrr
Anyway.
A quick addition with some scientific articles which I turned up after suddenly thinking “what is the scientific understanding/cause of encrustation”
http://www.biomedhtc.org.uk/EncrustationClinical.htm
http://www.biomedhtc.org.uk/EncrustationScience.htm
http://www.biomedhtc.org.uk/CAUTI.htm
http://www.biomedhtc.org.uk/ProteusMirabilis.htm
Hi Shawn, great to hear from you. That’s terrific they can reconstruct your plumbing. i hope it all goes well and wish you a speedy recovery. Please do let us know how it goes.
Think that you can beat biofilms in your urinary system?
Think again.
These things can survive autoclaving at 121C at pressure, which would strip the flesh from your bones.
(1998) Biofilms on Indwelling Urethral Catheters Produce Quorum-Sensing Signal Molecules In Situ and In Vitro
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC106751/?tool=pmcentrez
Plenty of proteus articles as well..
I’m in the process of trying to find out how ambient temp affects catheter replacement frequency etc etc from biomedhtc.
Hi everybody-
I am a 54 year old very healthy and active male. I discovered I had urinary retention due to an enlarged prostate. I was found to be retaining 800 ml and couldnt hardly pee at all. I had a TURP procedure to open up my prostate and an SPC (no bag) 3 days ago. I get the urge to go at 500-600 ml. I pee about 150 cc and then cath the last 400. My Dr says my bladder may never be functional again and I may have to cath the rest of my life… Other Drs say my bladder will recover. What do you think Graham? How long will it take?
Thank you for your efforts and a great wesite!
Peter,
Is the SPC a temporary measure to allow time for the ureter to heal? It is a good sign that the sphincter is allowing some control of the urination. This gives some hope of a return to “normal” function.
The urinary system can take months to recover from surgery. I would by all means get a second opinion from another doctor. But each person is different and the doctors can only predict what will happen in your case based on their experience with other similar situations. That’s why it is important to deal with a doctor who has a broad range of experience in such situations.
I live in a small town with one urologist and when I started having prostate stricture problems I knew that I needed to get out of my small town to a larger city with a pool of skilled urologists.
Hello Everyone
I have a chronic neurological illness, CRPS, which results in me being wheelchair and catheter dependant.
I finally had my SPC surgery 11 days ago. Untill day 5/6 things were going great and it was such a relief not to have the pain and problems of my urethral catheter.
At this point my site pain increased and started throbbing, I started producing alot of pus from the wound, the area from my pubic bone up to my catheter site feels bruised although it just looks very mildly red and patchy, the entire area is very hot and the tissue surrounding the catheter is breaking down – I now have a hole around the tubing half the size of a postage stamp.
This past week I have seen 3 docs who agree it looks very painful but feel this is the normal healing process. 1 did start me on antibiotics just incase, that was 3 days ago and things have continued to worsen.
Yesterday I even presented to the emergency room the pain was so bad, but they just applied a new dressing.
I feel Im now making a fool of myself by seeking any more help, but its so painful I feel it must need stronger, different or IV antibiotics before the entire area breaks down / ruptures.
The site has been swabbed but cultures wont be available till mid week. Until then can anyone reassure me that this is normal healing? Or has anyone had similar site issues which was proven to be infection?
Thankyou so much for all the info on this page. It has been a great source of help to me both pre and post op. I dont know what I would have done without finding it. I hope in time, once I am an expert in all thing SPC related I will be able to help people in the future with their concerns. Thank you so much. Love to all.
Hi Bill -
My urologist thinks my bladder is stretched out and may not return to being functional after my blockage has been fixed by the TURP. I can pee alot better now but still have 300 cc residual 5 days after surgery. I was retaining 800 cc 2 weeks ago before surgery.
My question is : Will my bladder return to being functional so he can rwemove the SPC and how long can it take?
Thanks,
Peter,
That question is beyond my knowledge as a fellow sufferer of strictures. But I know three things:
1. The urinary system seems to take longer for recovery than other parts of the body. 5 days after surgery may not be an indicator of how things will end.
2. God made our bodies to be incredibly resilient. Whether that manifests itself in seeing your bladder return to normal function or He gives you the grace to deal with a “new normal”, you will have a solution to the current problem.
3. My experience included a TURP, a Biolite Laser, a cold knife opening of the ureter and after 2 years of procedures I have found myself pretty happy about a semipermanent SPC.
I hope this helps. I understand it probably wasn’t what you wanted to hear.
Peter, I held off answering because as Bill said we can’t accurately predict if it will return or how long it may take. When your bladder is over stretched it loses elasticity. Much like skin stretch marks and scar tissue, it takes years to lessen and usually it never fully returns to normal. I doubt your bladder will ever return to full normal function but it is likely to improve slowly over the next few months.
Siobhan, I wouldn’t call that normal healing. Blotchy redness, throbbing, weeping, hot etc. are all signs of infection. Until your test results come in, a numbing gel like lidocaine may ease the pain. Sunlight is a good healer. If you can, expose the supra pubic catheter site to sunlight for 10-20 minutes per day. Keep the site as clean and sterile as possible. A good soak in the shower or saltwater bath can aid healing and shrink the skin back down around the catheter.
Siobhan, unfortunately quite a few doctors are effectively quacks, whether they believe in magic,push rubbish or are useless because they don’t care about their patients (unless it benefits them somehow). I never had pus and my catheter was fitted under emergency measures in my hospital bed with a local instillagel anaesthetic/antiseptic (in the UK). This clear liquid does come out of the wound after and if you have a replacement catheter. However, green pus, red skin ewww that sounds like a true infection. :(
I totally agree with Graham, after all, he has much experience with catheter replacements and therefore he knows what and what not to expect.
Peter,
I held out as I don’t have an outcome prediction for bladder normalisation either, but…
I have experience of living with very relevant problems and symptoms for many years so I shall do a NovelPost(R) :) to explain myself, my experience and opinion.
I had what I thought was a prostate issue (actually a stricture, but practically same symptoms) + definite chronic urine retention from 1999 until my hospital admission in april 2011. I self diagnosed this in 1999 using free health multimedia encyclopedia, as I did not have internet access until 2002. Whatever it was, I was not about to get “looked at” for psychological reasons. The bladder rarely empties once it becomes “dysfunctional” and distended.
Something to remember, on retention, is that the prostate gland can grow in many ways, sometimes inwards, sometimes outwards and probably both to varying degrees.
As it is just below the bladder, it can grow up and create a hill inside the bladder (with the exit point at the top of the hill), which means you’ll always have a lowpoint of urine that can’t really leave. I doubt this would be able to get to 300 postvoid though so I’ll presume its the deformed, dysfunctional bladder still misbehaving.
I sort of consider myself a “competent person” (or something like that) on quite a few signs/symptoms based on 11 years of learning to avoid being operated on. (knowledge is power – but obviously I don’t have x ray vision…)
The Internation Prostate Symptom Score test was something I checked years ago and I managed about 42 in 2003 onwards.
It turns out that the main cause of my obstruction to urination is “diagnosed” as urethral stricture (yet to be examined internally yet though….) The stricture/s seem to have become progressively more obstructive over the years and I’m sure they were developing for many years even pre-teen, maybe congenital if possible. BPH vs stricture symptoms (practically the same).
I went into hospital due to acute retention because of a fully obstructed urinary system.
In the hospital, I couldn’t be catheterised through the urethra (about 20 minutes of attempts over a 1 hour period) , so they had to do supra pubic (about 18 hours later, fortunately I had a spasm after the 1 hour attempt which released about 400ml, so I survived another 18 hours) which all went well, although the torturous waiting with a large retention was nasty. (bladder scan showed >999ml and left kidney was stabbing at back and on fire at front of body) my entire urinary system was overpressured and a press anywhere was torturous yet the pain was different because internalised.
Funnily (or not) enough, I got a call from the NHS surgical admissions which was bang on the 18 week “deadline” very recently, so soon I should get an optical investigation of my urinary system to find out what is screwed, although the thought of such exposure and invasion if quite disturbing to me. My bladder got damaged during the hospital episode and bleeds if I try to urinate normally. If emergency SP cath replacement is needed, I will normally need to urinate about 3-5 times normal avenue of which 4th cycle will make my eyes water from the pain) It’s nothing major compared to some and considering my apathetic reluctance to deal with this years ago, I could have suffered worse, although I think my bladder sphincter/detrusor is ripped and weakens under say 200/300 ml, leading to the need to urinate. << (just so you know my reasons for understanding)
Erm, er, your questions…
You didn't mention that urination caused you pain? Were you pain free? Any blood, etc? Full feeling in lower body? Hard to start stream, dribbling afterwards etc, made certain postures a little more uncomfortable?
I went from 1998 without noticeable urination/discomfort issues to 1999 4 urination attempts in 1.5 hours(pre-gym) so I could workout without too much discomfort, except I was still in retention regardless of my thoughts that I should be empty.
It does creep up on you (the expected reactive symptoms of obstruction) My average urine flow was 4ml/sec and average void was 220ml, both consistent over about 8 years of measuring (3 years ignorance). less than 10ml is rather obstructive and "I believe" is enough to cause the usual symptoms of bladder hypertrophy/distention/retention/detrusor issues/bladder damage. (The worst is when you can't urinate anymore but a herculean bladder powers through the obstruction, relentlessly)
I'm glad to say that most people wouldn't have let it get to that stage, so the hospital probably didn't quite understand my frantic explanation that my bladder was going possibly tear me up if it spasmed (which it did several times, that was short term agony)
Somehow I got through all of that and survived, although I feel rather traumatised sometimes as I was left alone to suffer. Still, I've heard many worse stories…
Also,
I "cured" myself of a pre-hernia sensation behind my sternum after eating large meals, by using a tight belt just under my rib cage for 2.5 years. (Note a habit of avoiding issues)
I knew I was retaining much urine, but I didn't think that the bladder volume was the cause of the pain response. The 1-1.5 litres retention was pushing organs/tissue into wrong areas…. (Imagine a 1.5 litre mineral bottle occupying space…)
Being obese as well, obviously meant far less space around…
I've read that some retentions were around 4 litres…can anyone imagine that?
The feeling of being able to eat and drink after 30 hours was truly great, not only that, I could drink unlimited glug glug glug glug.
I've no doubt you will suffer discomfort or a dysfunctional bladder for a while.
Your doctors really should have statistics on this. If you didn't have any major pain with the 800ml retention, or bleeding (except for the op) then you should have a good chance of become normalised, based on the fact, that I had very long term retention and my bladder got rather damaged, but only because of the long term bladder strength training and distension. However, it has shrunk and does inflate to a degree.
However, we learn to never be sure of these things, so the others' and I would say "we are not sure of the outcome"
Your bladder could get more agitated by concentrated urine. Drink plenty of liquids, even though you'd prob rather not at the moment.
Currently, my bladder seems to swell without pain (to a point) after 4 months hardly being used and I was "resistance training" my bladder for many years with 10×1 minute urinations/resistance training sessions daily.
So, you can urinate 150, then SP cath 400, presuming you are on a flip flo valve or something to keep bladder tone? Give it a week and observe all changes.
http://en.wikipedia.org/wiki/Trigone_of_urinary_bladder << that may be still sensitive
Actually, I just had a thought. I don't think I can confirm that my bladder has shrunk or is "functional" and I will possibly only find out upon investigation… Damn!!
Well, I hope my NovelPost(R) yields some answers.
I'm sorry if anyone feels it's too long. :(
Thanks for your input guys.
Andy – You asked
“You didn’t mention that urination caused you pain?
Were you pain free?
Any blood, etc?
Full feeling in lower body?
Hard to start stream, dribbling afterwards etc, made certain postures a little more uncomfortable?”
My Dr did a cyctoscope and said although my prostate was not badly enlarged, it was deformed. He said the prostate has 3 lobes internal, left, right and center. My center lobe was deformed and had grown into my bladder opening acting as a valve to close off the opening when I tried to pee. Presumably, he cut that away during the TURP.
Thank you,
Hey Graham, I just saw my urologist the other day and he says everything is good with my SPC. I brought up the odor issue with him and he could smell the odor from almost a foot away from where the tube attaches to the bag. So he now believes I have an issue. Gayle mentioned a BIOCATH-HYDRAGEL COATING tube was working for her. i asked and doc said he had not heard of it. He asked if I could get more info on it for him. I checked on-line and could only find some that they are made in Ausralia.
Any help for the US? If I can get more info, doc said he would try and get insurance approval to order some for me. He also said eating yogurt 3 times a day might help. With my appetite I told him then I wouldn’t be hungry for anything else.
I asked if ice cream and or chocolate would help (LOL) and he said no.
Hey, I’m in the hospital now, I had surgery Monday mourning they say that everything went well. The have a cath in my penis, it’s capped off, and they are still using my spc to drain all my urine, and will for the first three weeks, said I will come back in three weeks and they will run dye in my spc to see it come out thru the cath in my penis to make sure the connection was good. You guys have a great day!
Good to hear you guys are making progress. Shawn, do they hope to do away with both catheters eventually? I imagine so because suprapubic and indwelling catheters are pretty much on par. UTI rates are much the same. SPC are better for sex, IDC may cause less pain. SPC can bleed when changing, IDC can cause tumors. So I mean, both have pros and cons. Unless you’re having a particular problem I don’t feel one is better than the other.
That’s right June, Biocath is a registered trademark of Bard. Bard mainly operate in Australia, Denmark, Iceland, Norway, Sweden, and U.K. In the U.S. you can order online. If that doesn’t qualify for insurance perhaps you could get a local medical supplier to order them in. I’m pretty sure silver coated catheters have similar properties to hydrogel coated. They might be easier to source in the U.S.
Graham, thanks for the additional info. I put in a call to the doc and I’m sure we’ll get somewhere. If the coated tubes help withodor, maybe they won’t have to be changed every 4 weeks?.
On a lighter note, Let’s not talk about sex…. Haven’t had it in so many years, forgot how it works. But I guess it would be a good thing because then I would get more leg activity and they might get stronger so I can at least stand & pivot. My Physical therapy guy works harder than I do to try and move these legs in fun? positions to try and get my hips aligned properly so I can work on eventually standing. Maybe someday shuffling with a walker. I know a lot of you have it worse then I do and you all are in my prayers. So unless we can find me a part-time man (Not the weird ones I meet..another long story) lets keep the sex talk to a minimum LOL.
June
June,
Our odour issues seem to have become noticeable at the same time. It is strange!
I’ve had bard biocath “aquamatic” (the prefilled balloon is clipped ready to fill internal balloon, no syringe needed) “hydrogel” coated (the hydrogel design is still about 12 years old), fitted with leg bag since April 2011.
By the time I came to post on here, you had already mentioned it… If I rub the leg bag, front and back, the odour seems to have started permeating through.. It also permeates material easily, hence the odour. I doubt my catheter has the odour. It takes about 2-3 days for the leg bag to get permeated. There is no liquid leak and no odour at the plastic outlet. The odour is like a concentrated lemon or even greenhouse tomato….lol. As we have different caths’ perhaps its also permeated, perhaps not.
I’m welll confused about my legbag odour issue though. Perhaps I’l drop an email to the bards and see if they can enchant me with a reply.
Hiya
I just wanted to thank you for you replies regarding my problematic SPC site. Its reasuring to have you here for any queries. I apprieciate it.
As way of a quick update, it seems my site was infected. The antibiotics finally kicked in on day 6 of taking them. Within a 24 hour period the pain, swelling and discharge disapeared and I now feel alot better. That was a rough ride. And so frightening seeing the hole get bigger and deeper – yuck! The area has started to granulate over already. Definately well recovered.
Just wanted to mention to those with odour issues – This happened to me once whilst in hospital. At the time I was dehydrated so my urine was very concentrated. If your urine is consistently concentrated might this be the reason behind your problems. I do hope they get to the bottom of it soon.
Thanks again for your replies.
Hugs Siobhan
Andy
Waiting for insurance to approve the silver coated catheters. Maybe that will help. I drink so much water I know that’s not the problem. Doc said eating yogurt 3 times a day could maybe help.
As far as the abgs, I wash leg bags nightly with soap & water and when dry the next day there is no odor. they last sometimes for about a week. Night bags I soak daily with soap & water, once a week usually soak with vinegar. Have been told I could also use diluted bleach to soak them but I don’t like that idea because I feel it would degrade the plastic bags.
Night bgs can last about a month before I toss them out because thy do hold more odor.
Read Gayle’s July 31 entry about odor. I guess there are so many different makes and models for all these things that they work and act different for everyone.
But I hope this works for me. Maybe it’s the type of bag you use. I do know that somedays the odor must permeate the bags because I can smell it on my pants. But not always.
Such fun lives we live….
As of today, my bag is not too bad and its been in situ for 4 days, I can only wash the front as the leg contact back part has a soft material which would take up liquid and stick. The odour has not increased and I’m sure it has some affect from ambient temperature.
I write to coloplast to ask them about this matter. WAiting for reply now.
Hi German herb tea treats constipation but be aware it can cause diarrhea, I had half a cup and three hours later toilet. I also have ms and use an spc but have loads of uti’s now with severe pain doc says avoid antibiotic .
Hi there
keeping your catheter bags CLEAN is vitally important!! My personal carers and I have use Milton’s anti-bacteria tablets and they clean my overnight bag out thoroughly. I only use the one over night bag for 7 days then its out and in with a new one. My leg bag, gets cleaned in the shower with me. Andy, I don’t understand what you mean by the ‘softer material would take up liquid and stick’ so may i suggest a leg bag from Simpla or Trident? They may have a material backing but heck if you dry it with your towel, its usually a fibre that appears to dry quickly – I have no problems!
When it comes to pong-ey pee…consider what foods you may be eating that have effected the odour for example – asparagus (peeewww)! Also beetroot will make your pee go a slight pink or red watery colour. Diet is absolutely essential to good health. I’m lucky in that I have a family whereby they taught me the value and how cook healthy meals. Did you know that blueberries are a fabulous anti-oxidant? I bearly eat ‘junk’ food, but I do have the odd chocolate delicious now and then…(Im certainly not pure).
So diet is essential. Hope what i find good for me, may be useful for you guys too.
Cheers!
My goodness – Yet again I am thankfull to the UKs NHS. Although they have their problems, when it comes to bags I am given ample supply to change as often as I like. My night bags are single use only and leg bags can also be changed daily if required. No-one has ever suggested that I should wash out my bags – Im just told to change them as required. Is all this washing of bags due to what your medical insurance covers? Im so sorry that so many of you are suffering odour problems – piddling into a bag is degrading enough!
Hugs to all.
Not perfect is better than not at all. In Australia most wheelchair users qualify for CAPS. It provides a payment to assist eligible people with permanent and severe incontinence to meet some of the costs of their incontinence products. A payment of $506.30 is made by Medicare Australia directly into a nominated bank account annually. I don’t reuse bags or catheters much, but I do use them well beyond their suggested use-by date. I use “overnight bags” for weeks. Nobody complains that I smell except me. I have very sharp senses of sight smell and sound.
Yes, I dont pong either! The only time my pee ponged was after asparagus and once when I had an infection! :)
Haha, no asparagus for me yukka. But I have had PUBS (Purple Urinary Bag Syndrome). Yes, I am serious, it is a real syndrome. My urinary bags have gone blue several times over 16 years. Brocolli seems to be a trigger for me, interestingly many report constipation.
WOW – My daughter would love that, she is mad on anything purple!
What causes it? Is it some kind of chemical reaction with the plastic?
PUBS can occur by ingesting one of the twenty standard amino acids, Tryptophan. Found in most protein-based foods it is particularly plentiful in chocolate, oats, dried dates, milk, yogurt, cottage cheese, red meat, eggs, fish, poultry, sesame, chickpeas, sunflower seeds, pumpkin seeds, spirulina, and peanuts.
It occurs in part from bacteria in urine and despite the alarming purple indigo or blue urinary bags color, PUBS is usually harmless. I’ll take a photo for you guys next time I get it. Do not mistake it with dis-colored urine from blood. I’ve had pink to jet black wee-wee from blood. If in any doubt call a doctor.
Thanks to all for your input. Here in the US my insurnce doesn’t covedr the cost of night bags. $9.00 each so I make them last as long as possible. They are called “Ken Guard” bags. Ironic, huh?
The nurse at the docs office always gets me 3 extra leg bags when tube is changed every 4 weeks. Will ask med supply store what kind of leg bags they have and cost. But I guess plastic is plastic and will eventually hold odors anyway.
Hello. Newbie here. Just wanted to add my 2 cents to this discussion on bag & catheter odors. I’ve had a SPC since Dec. 2002. After living harmoniously with the SPC for about 2 years, I started smelling an odor coming from my insertion site. Over time it worsened and eventually the odor began to leach through my leg bags. I would change them often & within in 48 hours the odor would infiltrate through the new bag. I found some bags on-line that were suppose to be odor encapsulating, but after approximately 4 days even these bags would emanate the foul odor. To make a long story short, I went to my Urologist and he checked me for UTI. Sure enough I was positive, he put me on an antibiotic 5 days later the odor was gone. I know many odors are not caused by infection, and I don’t believe in using antibiotics unless absolutely necessary. However over the years I have learned that if I let the odors last for very long I begin to get bladder spasms, IBS, acute cystitis, etc. After taking a full 2 weeks course of antibiotics I’m back to my normal self. I also have found out through experience the longer I go without taking antibiotics the quicker my foleys must be changed, not to mention the more painful removal & insertion is. I am afraid of immunity to antibiotics, but as has been mentioned before on your blog it’s a matter of quality/quantity of life issue. Also want to thank you Graham for having a very informative & influential site. Kudos to you sir!
Hi Ken and welcome. I’m still kind of new here and it’s a great place to learn and vent.
I’ve been tested for UTI’s but in one year have only had one and it was not fun. That’s when I learned about bladder spasms. I was playing basketball for almost a week. Had to wait for test results to comed back before I could get a script an dthedn had to wait for the drugs to kiick in. Dribbles and double dribbles, urine in bag and out. There is only one antibiotic I can take due to dr’s over prescribing years ago and am now allergic to all the main drugs. So the odors are not from infection.
Got insurance approval for the silver type cath. Now just have to wait for them to come in. Also found out they will cover bags (at least a few a month) Maybe they will be a different mfg and the bags will be less pourous to hold the odor. Will see and let you all know how it works out.
hi can anyone help me i have a catheter in and some time when i am passing wee it pops and then i pass blood can any one tell me why and what should i do if it happens again thanks
Hi Barbara: We really need more info. If you have a supra pubic catheter you should be passing wee constantly. Are you a wheelchair user? Is the catheter only temporary? Popping is not common with an SPC. Keep your fluids up and check that your legbag or drainbag valve isn’t sticking.
Ken: Thanks mate.
Oh wail, wail, wail, wail….. all this talk of pong-y pee… well now mine does! And I’m not feeling too flash, my bladder is spasming. Yet have been drinking my water. So had a test, yes, ANOTHER infection thus, ANOTHER lot of antibiotics (Alprim which I think are useless). Oh heck…thats the last time I’m going to keep saying “i’m pissed off…” about something. next week, i’m off to day surgery to have my annual bladder investigation – you know the one, where they stick the microscope up your uretha… wail, wail, wail…I’m dreading it…
I really liked reading through your website. I have gone through three supra-pubic insertions so far and expecting two more, or just more in the future. I have recurring hypospadias that required the use of supra-pubic catheters. Right now, I am into three weeks with this SPC and my doctor says I need to change it again in one month. I am due for another corrective procedure to get rid of scar tissue blocking my urethra, so the only way to clear my bladder is through the SPC; a Foley through the other way simply isn’t an option. It’s uncomfortable, true, I couldn’t do anything for a while, but it settles and I’m able to do more, like work.
Vincent, My spc is changed every 4 weeks. not a big deal after a year. Just a bit uncomfortable. Then for being such a brave girl I get one antibiotic (Macrobid) pill to hopefully avoid infection. Life is so much better with the spc because I don’t have to go looking for wheelchair accessible bathrooms. Here in the US of A those of us that are physically challenged are a growing minority but still discriminated against when it comes to accessibility and jobs.
JWTAS “pissed off” is still better than being “pissed on” which is no longer a problem unless a bag leaks or I miss the container I keep in the van. LOL
Been there done that with microscope. (only once) and the after affects were worse than the procedure.
Thanks June. Actually, I must write down the name of that antibiotic and suggest it to my GP for me to take after I have a catheter change because I’m getting regular infections after my monthlys and also after a catheter change. (Yep, I’m dreading next Thursday with the microscopic procedure!!!!!)….
You’ll be fine!!! Now go to the top of the site here and check out the disaility humor. I’m still laughing. Gonna geta me a new T-shirt made up.
My last post was Aug 26 and haven’t seen any new posts. Hope all is well with everyone!
I thought the same June, even tested comments are working, has just been a quiet week. There have been comments since Aug 26, hit Ctrl+F5 to refresh the page. I’ve developed all the symptoms of a double kidney infection today. Going to bed soon to try a Releene catheter. I too hope the quiteness means all is well with everyone. All the best. -G
Hi Graham
I have too!!! I have this horrid pain in my right kidney but i also had a rotten case of ‘food poisoning’ (It sounds a heck of a lot better than gastro) at 3:00am and worried i have something from that! I’m trying to ignore it!!!! So what are the symptons of a Kidney infection?
JWTAS
Sorry to hear that, food poisoning is a wheelies nightmare. For me as a quadriplegic double kidney infections cause my face to go hot, I spasm more, sweat, shake, feel exhausted, am short of breath, dizzy and lack concentration. If have it more than a day my back starts to hurt.
A few months ago a trusted urologist told me anytime your catheter blocks so bad you bypass, there’s a high risk of developing kidney infection. My bed was a bit wet this morning. Hence trying a Releene catheter, they are short from balloon to tip, and will hopefully not poke down my urethra, causing blockage. Last time I was a week on IV genta 3xdaily. I’m supposed to fly to Thailand in 12 days.
Hi June
End of August is getting little ones ready for starting school/preschool, they have now started back….I get some time for me.
Graham – look after yourself so you can enjoy Thailand trip.
I’m still getting constant infections, taking vit c and cranberry tabs to help which doesn’t stop it but seem to reduce severity and i can wait much longer before taking antibiotics. Does that make sense?
I get bad spasms and am due to have catheter change in day surgery because spasms are so painful, I am amazed anyone manages to cope with them. You’re all a lot braver than me! I too hate the bladder inspections, my doc isn’t the most patient or gentle person. Maybe he should have it done?
Do you all find cath changes get better or worse over time? :)
Hi Graham
Gees Hon… that does sound awful! I so hope you feel better today!
@ Tamzynne there are some anti-spasming medication you can take and I take Oxytrol patches because the Ditrapan tablets cause constipation. Graham always gives us the advice to drink loads of water, and this is important. My urologist the other day told me that you will always have what appears as bacteria in your bladder because of the foriegn object (catheter). However because I am getting so many reoccurring infections like full on ones, I have started a daily 250mg of Cephalexin anti-biotic. This should be one of the last resorts.
Also keep your insertion site clean and I use benadine anti-bacterial solution for this after my shower everyday. It keeps the site dry and not ouzing.
Best of luck!
JWTAS
Thanks for the well wishes guys. We changed my catheter for the Releene one last night. The difference in tip length is only small but what a difference. I drank two litres overnight and by morning felt much better. A mate came over today, fired up the bbq and we had a big lunch. Looks like I’ll avoid the week in hospital, yay. In time I’ll put some photos of tip lengths up.
Tamzynne: My catheter changes have always been relatively painless so I can’t say they get better in time, but mine have not become any worse. Oxtrol patches (Oxybutynin, Vesicare, Detrol LA tablets) can ease over-active bladder spasm. Drinking +3 litres/day, silver coated catheters, Hiprex or Urex etc can reduce infection incidence rates. There are more tips in the article. Apply lidocaine liberally to the site and new catheter prior to changing to ease discomfort.
Graham – The same thing has happened to me this week for the first time; catheter entering the urethra as a result of bladder spasms. Was quite uncomfortable and really freaked me out the 1st time. Im really disapointed since my SPC was working out really well for me once the wound infection cleared and now this.
I have been prescribed an anti-cholongeric (sp) to help cut down spasms and am already on baclofen for different spasms. Im not sure why my bladder spasms have increased so much to cause this to happen. No sign of infection. The new drug certainly isnt a miracle cure. Still having 5 spasms a day each resulting in a disappearing cath.
To fix it I am having to deflate the ballon and pull the cath back till I think its in the correct place and then reinflate. If I dont deflate Im unable to pull it back. My doc reacons the entire ballon is entering the urethra since this was happening with the urethral cath also. Its so painful. Very nervous pulling back on the cath incase I pull it out – its only been in 4 wks so isnt meant to come out yet till it heals some more.
My urologist is being writen to so as he can make a plan for future management – any ideas what can be down other than drugs? Really cant live comfortably with this happening afew times a day – dealt with it long enough with urethral cath. Tempted to go to emergency room during a spasm with displaced cath and see if I can get some quicker treatment, whatever it may be.
Graham, I really hope your infection clears up soon so as you can feel better and get rid of this nasty resulting symptom.
To everyone else, just saying hello and hope you are all well.
Sorry this has ended up such a long post. Just worried and fed up with this.
Big hugs all round.
xx
Hello,
I am planning to travel recently and i have a few questions. I am a bit confused and afraid because this is the first time i am going to travel by air on an international flight after i had this procedure. Your article is very very useful but i want to know what happens when the silicone expands slightly when we go above 2000ft. Does one feel anything and what precautions should i take? Also what preacautions in general should i take while travelling? Should i leave the urine bag on while travelling and is it ok to leave it on drainage even if i am unable to take too much water intake? Or should i put the urine bag and clamp it. On daily routine i dont leave the urine bag attached.
Many thanks.
I have only flown with urethral catheters with no problems – everything was kept and felt normal. Normal for me is a leg bag on free drainage and it was all fine.
I wouldnt worry about expansion of the cath or skin, skin has huge capabilities of stretching painlessly, ie pregnancy. As for clamping it or not, just do what is normal for you. The only benefit of attaching a leg bag would be not having to worry about visiting cramped plane toilets.
I hope it all goes well for you and you have an enjoyable trip.
YA: I believe the silicone expansion thing was blown way out of proportion by tales of women with silicone breast implants exploding on international flights. In the very early days of silicone breast implants they did leak, enough to put Dow Corning out of business. While much safer, new age silicone and polymers should still be used with healthy caution. I fly overseas soon and the outcome will I imagine see me retract the catheter expansion precaution. Follow your daily routine YA, or do as I do and phone the airline company asking of their policy.
Siobhan: you are doing everything right in my opinion. Stay on the anti-cholongeric, what brand and dosage are you on? I hope to have some more specific advice for you soon.
Hi everyone, things have been quiet for me since I had botox injections in the back of the bladder wall. During that procedure with the help of the camera they discovered while sitting the catheter tip went into the urethra preventing any drainage and causing reflux. While waiting for a date to relocate the site I started to have a strong smell from the site. That was followed by chills fever and spasms. I failed my urine test and within 3 days of treatment with cipro my symptoms are gone. My doc tried to get me to have a surgery to bypass my bladder, using a small section of intestine and have the urine drain into a bag attached to my side. If I was not as informed as I am from the collective experiences we share here I would have gone along with my doc. There is no reason for me to have an irreversible procedure at this time. I go get a third belly button on the 19th, I feel confidant that I made an informed decision thanks to all of you.
Dear Laurie
Could you please explain your post a bit more? So you have a SPC and since you’ve had the botox, you have avoided having that other procedure to bypass your bladder? So what do you mean you go and get a third belly button on the 19th? I’m not quite sure what you mean? Are you implying you are going ahead with the bypass? And the botox treatment actually has helped you? Hope you dont mind explaining.
Kind regards
JWTAS
Hi all. I’ve only had bladder spasms once due to having a UTI and a week of Toviaz 4 mg once a day worked for the spasms. I didn’t take the second week because the anibiotics kicked in and the spasms stopped.
I also have a fear of flying and if I ever get on a plane again, I will use my leg bag and empty it into a container (while hopefully no one is watching) because I would not be able to get into a plane bathroom. I guess I could use a night bag while in flight then I wouldn’t have to empty it.
On a lighter note, if my son goes with me I guess I will have to explain the spc to him. When I had the surgery done last year I told him I was getting my tubes tied so I couldn’t get pregnant. LOL He’s 2 hours away at college and I have custody of the cats.
But I doubt I’ll be flying anytime soon because of the wheelchair issue. My sister’s house would have to have a temporary ramp put in and then get chairs/benchs for in and out of the shower and then add the Texas heat and it’s doesn’t seem worth the trouble. At least in my house I can accomplish what needs to be done. I guess I’m just too darn independent and don’t want to have to rely on others unless I have no choice.
Add to that, I wouldn’t be able to take my own wheelchair because I don’t trust the airlines not to damage it.
Oh well, New England (Massachusetts) is beautiful so I’ll probably just stay here and go to the casino instead.
Hi JWTAS, I last posted 1 Aug, I have had an SPC for 3 years due to a progressive neurological disease. I have been in a chair for 4 years. I had a lot of spasms and urine retention. I knew I wasn’t draining when sitting in my chair and I was getting lot a of UTI’s. The medical answer was to limit my time in my chair to 4 hours a day. It took a year to get botox injections and at the same time they discovered the reason I couldn’t drain while sitting. The botox really helped with the spasms but did nothing for my drainage problem. I think my doc felt I would be easier for him to manage by taking my bladder out of the equation. I will still need botox every 6-12 months. My current site is directly under my belly button, so it looks like I have 2. I am not going along with my doc, I will have a site relocation, it will look like I have 3 belly buttons.
Graham…The drug I am on is detrusitol / tolterodine tartrate (UK names??) 2mg. Not getting much/any benefit yet!
Laurie…Good luck with the site relocation. Hearing about your botox is very interesting – thankyou.
June…Please dont be put off flying. Airports have entire departments for the sole purpose of transporting wheelchair passangers. I have always been treated with dignity and the whole process has gone like clockwork. My wheelchair has always been well looked after also. Im so confident with the care I recieve at airports when I next fly I am going to do it alone relying totally on airport staff – they are that good.
Once you arrive at your destination most problems are fixable with a little planning. You can buy moveable ramps which fold up super small when not in use. They are very sturdy and efficient. For showering, a plastic garden chair in the cubicle has worked well for me on occasions.
Please dont think Im belittleing your problems – Im only trying to help and reassure you. I know outwith your own home evrything is trickier and takes extra effort. But hopefully the benefits you get from having a holiday will make it worthwhile.
(SORRY FOR THE NON CATHETER RELATED CONTENT)
Hugs to all.
xx
Laurie, I have MS and spend way too much time in my chair too. I have found that moving in and out of the chair promotes bladder drainage. Also, I have Physical therapy and because of all the movement that entails it causes my bags to fill up and I have to take a break halfway through the sessions to empty the leg bag. This happens even when I limit my fluid intake prior to PT. So keep on trying to move even while in your chair. Wheelchair push ups are good for movement and also exercise for the upper body.
Keep moving my friend even if it seems useless for neurological progression. There are quite a few exercises you can do in the chair.
Siobhan, detrusitol do start working straight away but can take upto 12 weeks to fully kick in. As your bladder is quite small the catheter may be irritating causing some of the spasming. You may benefit from using a catheter with small 5cc balloon and short tip like the Releen I’m trialing. Ask your supplier for the shortest balloon to tip one they have. Or just ride it out for 12 weeks and see how you feel. I think they should only make silicone foley silver coated short tipped 5-40cc balloon catheters. Nobody would be worse off, and so many would benefit.
Laurie, good to hear from you and thank-you. If the only thing this website ever does is save one persons bladder it is all worth while, it has purpose. Good luck with the re-site. Mine took a few months to get right, make sure they use a top quality silicone foley catheter to start with.
*Note: Guys if your comment doesn’t post immediately it probably contains a spam like word. Don’t worry, I will approve the comment as soon as I see it.
Graham, thank you so much for the advice and explanation. Very helpful. I will ride it out and wait for drugs to work. Although my cath is due changed in 2wks and the new caths have the balloon near the tip anyway. I will be interested to see the position of balloon on the current catheter.
Sorry about the duplicate posts – Im just so used to seeing my posts appear immediately I didnt know where they were disappearing to. I understand now.
Thank you so much as always – this site is brilliant. I cant thank you enough.
Siobhan,
Thanks for the flying comments. Still not sure about the chair issue. $10,000 is expensive and not easy to fold up. I have used airport chairs before and have not found US airports very friendly. I guess they think the brain doesn’t work because the legs don’t. I will consider your ideas. I’ll just use the “You break it, You bought it” and I need it NOW!!!
Graham, I really like reading all the comments even if they don’t always apply to me. I have learned a lot about all sorts of thing I never knew that may be useful in the future. Just knowing there are others with sometmes similar problems is comforting. I’m glad I found you all and maybe someday some of us can meet in person.