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.
Silicone Foley Super Supra Pubic Catheters
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.
My brother has been diagnosed with paralytic disease. He is 45 and had a cancerous brain tumor at the age of 4. He has a SPC (about 4 years) and they now want to do a colostmy. I have seen his distended stomach before, but this is not right. We are at our wits end. If we agree, he will probably end up in a place we have been avoiding. Yet, I wonder about the quality of life improvement I believe he will have. Any adivise out there on SPC and colostomy combo. I know I must be ignorant and sound horrible. I’ve been up all night trying to find info …nap…hospital…pray for my brother. He is the kindest soul you could ever know.
Gemma: A stem could mean several things. The average male bladder only holds 600 mls so once a day, yes he would feel bloated and probably busting to go. It won’t hurt to try a medicine like Ditropan (Oxybutinin) that relaxes an over-active bladder preventing spasm and collapse. I still suggest self-cath or IDC over SPC for your hubby at this point.
Lynn: SPC and colostomy are fine together. Of course care should be taken to avoid cross contamination as they’ll only be several inches apart but many people with both report no problems of interfering with each other. In fact a colostomy should reduce the bloated abdomen in turn reducing stress on the SPC.
hi, ive had a SPC with a plug for about 2 months due to a stricture thats hopefully going to be removed surgically soon. but im 19 yrs old serving in the military an while home awaiting orders i was in a very serious car accident. (trains hurt i might add) i had 7 pelvic fractures, severe head trauma, amnesia, and my urethal tubing i guess u could say was torn from my bladder. the tubes were reconnected and we tried twice with a foley cath but about two weeks after these were removed the scar tissuded returned blocking my urine flow slightly. the SPC was put in when i had travel arrangements in case the stricture closed completely while in flight i could use the SPC as a backup instead of my bladder exploding :) that was two months ago, the stricture hasnt closed and i still use my friend instead of the SPC but lately i notice when i empty my bladder the SPC slides inwards, obviously from the bladder shrinking but why when it slides in or out at all do i feel it in my uretha?
hi graham i do hope that u spc has finally setteled down with the spasams that u were having i just want to know that if anybody know why? .I have just had a spc fitted and iam a quiet a lot of pain on a daily basis and i am supossed to be returuning to work but being in so much pain from time to time it is just imposible.i work for the NHSin the uk but the spc is working fine i do not won’t it removeing because of wet pant’s ect but at the moment
Joshua: Men can feel most of their urethra. As you have no paralysis it’s normal to feel the catheter and in time it’s not uncommon to even develop sensation where there was none. Take me for example, as a quadriplegic I cannot feel a punch in the stomach but if you keep punching for an hour my body somehow gets a message through to my brain (usually a warm feeling in my case) that pain is in that area. I can feel my supra pubic catheter site. A numbing gel may provide you some relief. Adrian: All I can suggest is a numbing gel, painkillers or see your doctor about a different method of catheterization.
thanks for your repy jousha the pain i am feeling seems to be getting a bit easier i hope just sore. i am still a bit in the dark as to were i am as to changing the spc the hopital says that they need to change it but as i have had a lot of up set at the hospital i do not wont to go down that road. the district nurse says that she can change it in my home were i feel much more happy. what is a cicostcope as the doctor did not tell me when i had the spc fitted? and is that why i am in so much pain in the neather reageons? Nobody spocke to me over the procedure the first time i met the person who put u out or urder. was in the theieter. plese reaply.
How does one find out their Ph level? Do you have to go to a doctor?
Are Urex, hiprex, mandelamine, etc…………prescription drugs?
I am 68 and have had mine for 2.5 years. Thank God I am healthy otherwise. Even play softball with my SPC. But, infection seems to be unavoidable…………????
thanks graham, i moved the spc out a little ways and it doesnt seem to be doing it anymore
Adrian- hey ive had a cisto several times an its nothin to worry about at all they put a numbing gel in first than slide the scope in it doesnt hurt at all
Joshua: Thank-you for your feedback and helping others Joshua. Do you use a wheelchair? If you would like to share your life story I’d be interested in publishing it on this website.
Dennis: In most countries you can purchase a urine pH test kit from a chemist or pharmacy, or buy one online. I’m not aware of any country that bans importation of urinary pH test kits so you should be ok there. Again depends on the country but Hiprex Urex etc. are not perscription drugs in Australia USA or England as far as I know and can in general be bought over the counter.
I’m in Australia where Hiprex is about $7.00/150 tablets but we have a government scheme called PBS (Pharmaceutical Benefit Scheme) that reduces the cost of any perscribed drug listed under the scheme to $5.90. Not a big difference in the case of Hiprex but a huge saving to a friend with Multiple Sclerosis who can purchase the new $1000.00+ steming injection for $5.90. Infections (Urinary Tract Infections) can at best be minimised but never eliminated.
Also of interest to you Dennis may be studies that show an increase of tumors in patients with permanently indwelling catheters for more than 10 years, due to they believe, rubbing.
Graham: thanks for the quick and accurate response. I will go to my druggist now.
Nice to have such a wonderful resource as your web site.
I would be more than happy to share my story with whomever is interested, no i dont use a wheelchair tho i was forced to use one for some time after the accident when they told me i would need it for six months i decided two was more than enough seeing as tho im still in my teens i have youth on my side for a mostly speedy recovery. im sure you dont want me to begin my tale here in the comments in case its horribly told so if theres some other way im all for it, thank you for your time
Graham, My husband is a 64 yr old Para T6-7 (34 years) who has had a suprapubic tube for 16 years with minimal problems. He changes the tube about every 2-3 weeks, less in the last year. Lately, urine has been leaking at the stoma site during the day. He has done everything he knows to make sure there are no kinks, he changed the tube thinking the balloon did not inflate properly, etc. Do you have any thoughts about what might be causing it/solutions? When he had the tube put in, in 1994, the surgeon put in a 26 fr which, now we understand was way too big to start with but too late now. What are your thoughts about this? Marge.
I do have a question about Leg Bags. I have been using the Hollister system. The top or longer leg strap has always be marked 30″ and it was. The new supplier still marks the #9344 as 30# but, it is , in fact, 34″. There seems to be now way to tighten this enought to fit my thigh. Anyoone else have this problem?
Hi Marge; boy you guys ask some tough questions. I agree 26 fr is not an ideal initial size. It makes using a larger guage catheter to stem leakage a catch-22. So I’d be inclined to reverse engineer and step down to a 16 fr. Hubby may need to use a dressing to catch leakage for a few weeks but he’s already leaking anyway. The bladder should constrict quite quickly around the catheter and if the bladder has become overactive this smaller guage will help. He could also find Oxybutynin of benefit but he must consult a doctor as anticholinergic drugs can have serious side effects in people of hubbys age.
Dennis: An obvious fix would be to fold and sew to shorten a few inches then order 26″ from the new supplier, if you can.
Graham, Thank you for the logical advice. Carl is going to try it and we will let you know in a few weeks how it works. At least we have somewhere to start. Talk to you later. – Marge
Hi, I have a question that maybe some of you can help with before I go insane. My dad is 83 yrs old and has prostate cancer he just had surgery for a suprapublic catheter. Since his surgery his is flowing through the penis. The urologist says this is normal as long as there is more in the legbag then he is going on his own. He no longer feels when he needs to go. He is getting very frustrated and upset. Any ideas? Thanks = Ida
PLEASE HELP!! My name is Shaun my 5 year old son was walking out of an restaraunt when a vehicle jumped the parking block and crushed him against a brick wall. Alex (my son) spent his 6th birthday in ICU. He has a colostomy bag and a supra pubic cath (maybe for life). He has had this for 5 months now. His new cath that the doc put in will not stop leaking around the site. As soon as we change him he is wet within 15 min. I dont know what to do. He is also in a lot of pain all the time. He sais there is a heart beat in his pee pee that hurts. Please someone help me help my son.
Shaun: Your son Alex is facing more complex challanges and changes over the next few months. You must seek further advice from urology specialists or seek a second professional opinion if you are unhappy with what you have been told and need more information. We are not medical professionals. In your case all we can offer are prayers Alex will get through this time as best as possible.
Hello…thank you very much for this site. My name is Denise and I live in Missouri, I had my suprapubic cath put in last week, and I can’t seem to get over the pain and bladder spasms …my question is, how long will it be before I feel better.? I hope it’s soon. Thank you very much.
Hi. I’m going to see my urologist at the end of the month to talk abut a suprapubic cath and I’ve been looking for real world info. Your site is great and I’m beginning to get a good idea of what we’ll be talking about. Thanks for this terrific site! I’ve been living with an MS bladder and basically tethered to the house for years now. It’s time to do something better that meds and pads.
My SPC keeps getting pulled and bleeds as a result. I have tried attaching it to my leg and feeding it up through my underware. Is there a product out that will clue it at the entry site to stop the pulls?
hello graham i havent been on here for a while alot has happened with my hubby. last time spoke to you was about his self catherterization and how he could be helped in getting less infections. well something has developed from that. and he has a rare infection now which doctors are saying they cant get rid of his now become ressistant to all oral antibiotics and has to have gentamicin through iv if he is bad well his always feeling bad. they have said he has pseaudomonas aureginosa. im just wondering if you have heard of that?
no medication is working for him. and they basically said he has to hit the floor before i take him in to have the iv.which to me isnt fair i have read up on the infection and saw what it can do and its not nice. he is having problems self cathertarizing now its been 2 weeks without any antibiotics he says that he goes to cathertarize it will come out fast (wee) then suddenly stop. and then he cant go then. i just wondered if anyone else has this and could advise me on the best possible way to give my hubby a better quality of life, thank you gemma
hi im due to have a supapubic catheter fitted soon can anyone tell me how long it will take to heal bcs i dont want to miss a inportant engament any help will be very gratefull thnks andy
*I’m on a months vacation guys. Please try to assist each other.
Ida: I wouldn’t say normal but it’s not something of great concern. Some swelling may upset the flow of things for a week or two but passing urine by any means after prostate surgery is much better than not passing at all. The sensation to void (pee) may never return.
Denise: 6-8 weeks post-op the level of pain sensation you experience will be about as good as it will get. Numbing gels like Lidocaine and Xylocaine or even a baby’s teething gel applied to the supra pubic catheter site can help ease pain.
Nancy: Thank-you that’s very sweet of you to comment and I greatly appreciate it. On behalf of all of us I wish you the very best outcome ever possible and hope to hear from you again.
Robert: Not specifically but you can use a tape like micropore to secure it to your tummy adjacent to the catheter site. I don’t usually recommend this as it can create more problems like blisters and long term misshapen catheter positioning. Find some tubing to lengthen enough to create the slack you require or stop the pulling at the source.
Gemma: Nice to hear from you again. Due to the overuse of antibiotics in the past and fear of hybrid super-bugs developing the pushing of IV antibiotics and general GP perscriptions will become increasingly reluctant. I am familiar with pseudomonas aeruginosa. In people with compromised health, colonisations that occur in critical body organs such as lungs, urinary tract, and kidneys, the results can be fatal. I have lost several close wheelchair friends due to sepsis from urinary tract infections. Seemingly healthy one day gone the next. Kick and scream Gemma. Phone local medical advisory services, take him in and refuse to leave the ER, call the media and your local member of parliment.
Andy: A supra pubic catheter never fully heals but things should settle down within 4 to 6 weeks.
Graham & Gang, Just wanted to touch base with you regarding the status of Carl’s supra pubic tube problem as of April 13: Just as an update, Carl has had a supra pubic tube since 1994 with almost no problems at all until April. His 26 french supra pubic tube started leaking badly around the site. He didn’t realize that he had actually inadvertently done it to himself.
About 2 years ago, he began slightly pushing in the catheter after emptying his leg bag during the morning and again at night, thinking that he was emptying the bladder completely. Not realizing that he was actually wearing the hole bigger and bigger, hence, the leaking began. He resorted to wearing the dreaded attends and covering the site with a gauze to catch most of the drainage. It is amazing how much it has healed and now the leaking has stopped completely. Again, thank you for your advice and giving some ideas and hope.
To the rest of you, my thoughts and prayers are with you all as you face your challenges.- Marge Wilson
hi anybody knows i have just booked a holiday to the red sea i would like vto go and do the diving would their be a problem with a spc or not i feel very silly asking about this???????? thank adrian.
Hi ya graeme. Thanks for your reply my hubby is still feeling really poorly with this pseaudomonas. So I took him to the hospital. As he has got constant blurred vision headache aches all over and when he tries to self cathertarize it keeps stopping all the time his lucky if his getting a thimble full out. So my reaction is he needs antibiotics as he has become resistant to all oral antibiotics and can only have 1 antibiotic which is IV.gentamicine. Took him down there they said because he wasn’t in a fever and hadn’t hit the floor yet so they wasn’t prepared to help him. I’ve been searching the whole Internet for a specialist thatdeals with pseadomonas aureginosa and can’t find one it’s driving me crazy they said the gentamicine wasn’t working for him and that it’s just a prevention from going to the lungs. But it all stemmed from a uti. I’m going out my mind here as I’m looking after him 24/7 and just want him to start feeling better if it’s only for one day. Hope your well graeme x
hi all, well i’m getting on good with my spc, it has taken since last oct to settle but it was deffinately worth it, although i have had a few bad uti’s which are uncomfortable, but i am also type 2 diabetic which has caused most of them, hope you are all well. papa12.
Thank-you for your fedback Marge, Gemma and Papa12, I appreciate it very much.
Adrian: You can swim snorkel and scuba dive with a supra pubic catheter. If you are diving deeper than five meters I suggest you tape the catheter down to your stomach completely. Water pressure at 3-4 meters starts to compress the catheter balloon. Tape will keep it in place and may prevent water bipassing (pushing past the catheter) into your bladder. Also be aware at depths in excess of 7-8 meters the entire catheter will start to compress. Restrict fluid intake as much as possible one hour prior to swimming snorkeling or scuba diving.
Gemma: You may have to report hubby’s issue to your local GP, health authorities, media, anyone who’ll listen and act to put pressure on the hospital. No amount of water will flush pseudomonas aeruginosa through. Oral or IV doesn’t matter, he needs a specific type of antibiotic that targets that infection. Perhaps you could consult a new urologist. From what you describe, I think there are greater problems than a bad urinary tract infection at play.
Pseudomonas aeruginosa is a notorious pathogen resistant to antibiotics due to the permeabiliity barrier afforded by its Gram-negative outer membrane. Only a few antibiotics are effective against Pseudomonas aeruginosa, including fluoroquinolones, gentamicin and imipenem, and even these antibiotics are not effective against all strains. Cystic fibrosis patients who become infected often find the strain is so resistant that it cannot be treated.
My SPC is 4 years old. I have had continual loose flappy skin around site, l have it burnt of but within a week or two its back. It’s always bloody and will not heal.
OK, Graham or whoever has the time: Funny how talking about my need for a cath isn’t all that difficult for me, but this — well, eight years in a wheelchair have done nothing for my figure except add to it. Must’ve gained 30 lbs. Lost some this summer, but the gut … hm. Is this going to be a problem for a super-pubic? It’s no longer a few inches from the belly button to where the cath might be inserted. I’d appreciate some insight, whoever has the time. Thanks.
Graham: I hope you are having a great vacation. I have had my SPC for 3 months now and I’m very pleased. I should have done this long ago. For 5 years I used a Foley inserted through the penis. The SPC is cleaner and more comfortable. Nancy: I have a moderate amount of belly fat and this is no problem. SPC fits nicely in a fold / wrinkle. Keep going with your exercise and weight loss.
Mike, thanks for the reply. I appreciate the info and the encouragement. Cheers!
after 3 months with my SPC i finally went swimmin, i use a Plug so i always have the tube taped to my belly and besides wet tape it was a perfect swim, so anyone nervous about swimming, its tottaly fine! Also i have surgery july first ill have a SPC and a foley for two weeks after than nothing at all! please pray for me.
Swimming with a SPC is not a problem but it is hard to get an answer from the doctors. When I asked my Urologist he looked at the nurse for an answer. Then he began to ask me questions. You want to swim in salt water? (I live on the coast of the Gulf of Mexico). No, I want to do aquatic exercises (not swim) in the pool. Well, I guess was my answer. I find the new 100% waterproof bandaids made by Johnson & Johnson are very good. I plug the end of the catheter and use a bandaid on my belly around the catheter.
Joshua, my thoughts and prays will be with in July. Please let us know how you get on.
Hello Grahem Thank you for your response to my last post. i really have tried to kick and scream about this pseudomonas but nothing. my hubby is now 5 weeks without any medication and still doing his self cathertarization. and the problems have started yet again. he hasnt felt well since they discharged him from hospital 5 weeks ago and still feels rubbish.
I have spoke to his gp that has said they are very restricted with what medication they give now!! But their giving him nothing because his resisitant, he has the pseudomonas in the urinary tract must be quite bad if they say that the iv antibiotics arent working either. all they said to my hubby is tthat ‘we are really sorry but the antibiotics arent working’ i dont know exactly what that means. you said youve lost a couple of friends that have had this which im so sorry to hear, but also at the same time im petrified about this happening to my hubby. because everyday is a bad day.
his water works are starting to play up alot over the last few days and his asked me to ask you or anyone else that reads this if they can help. he will put the catherter in his wee will shoot out quickly then suddenly stop . he hasnt been able to go properly in the last couple of days and im so worried what with this pseudomonas and all.
what could it be thats stopping it from coming out could it be the infection or is it time to say goodbye to self cathertarization ??? i feel really in a pickle at the mo worried and so upset. please could you give me abit of advice. (anyone) ….. kind regards Gemma
Hi, I am a 34 yo C5-C6 Quadriplegic & had my SPC for 12 years now, every few months the SPC hole gets a bit meaty kind fleshy, I shower and clean the SPC hole every morning & every night and put betadine around the SPC area. When i get this red meaty thing in the hole area i get like a stingy pain when my bladder is emptying. The Doctor said thats just healthy cells growing from time to time (which i doubt) , i asked is there anything i can put on it to get rid of it he says no just keep clean (which i always do), this meaty flesh can last from 3 days up to even a month befor it disapears, when its gone i dont feel anymore pain when bladder is emptying. Can you please tell me if there is any cream i can put on it to get rid of the red fleshy meat? Thank you so much
REFERRED PAIN IN THE END OF THE PENIS. ZOWY!!!!!!!!! The pain stops as soon as the tube is removed. 7yrs ago the 1st SP was inserted. I healed quickly & relatively comfortably. At 1st pain acted up as I bent to get off bed, car seat, etc. Now pain is almost constant, * except IMMEDIATELY when tube is removed!!
I can urinate in 10min tho I’m 86. (I’m told men over 55 usually take 24hrs.) Rx’s… 7yrs: hooked on Tylenol with Codein. B&O suppsitories slip out, tho I prefer – more local & effective, & I’m more alert & awake. Marijuana not recommended over 80 – perhaps can trigger leukemia. Gabapentin – I sleep most of days, & it hardly takes edge off pain.
Dr’s Attitudes. When one’s hair turns white, lots of staff yell at you. I’m not hard of hearing. By 86, 1 would think I know my own body pretty well. Most of “them” seem to disagree – a plethora of docs @: urology, geriatric urology, geriatric pain management, urology, neurology, urology, regular pain management, urology, psychiatry (no joke), urology. – a 7-yr jouneyso far… the saga continues…
Sex? Yes!! Forget yet another Rx, i.e., Vardanafel, “as seen on TV,” etc., & their side effects. PosTvac works simply, is based on common sense vascular plumbing, is only gadget OKd by FDA, Rx gets $ covered by Medicare, comfortable, doesn’t stifle the mood + TA DA!! Pool… Thanks for the H20 OK, for water aerobics relieve body wt for more effective workout. Duh…
Docs & nurses are amazed I change the tube myself – more slowly than they = nooo pain.* They think the referred pain – almost constant now – is due to bladder spasms. I don’t!! My guess is the pain is due either to bouncing on a nerve or behind a ligament or ______ < your supposeition here. I'm up for ANY ideas, ragged out – as you can imagine – & not up for fun to say the least!! HOPING THIS HELPS SOME OF YOU AS WELL!!!!!!! THANKS, FOLKS!!!!!!!!
Graham, et al – a great addition to what I’ve learned @ hospitals. Try not to fall off your chairs laughing – as a few doctores nearly did… Remember that Sp tubes were inveneted in the not-so-distant past, might there be a simpler (tho not easy) even more obvious way to eliminate urine AND thus infection from the bladder?!! After all, this is the one time women have the pysiological advantage; women have a urinary exit at the bottom of the bladder AND gravity!!
Warning – Men, try not to recoil here, but imagine a teeny/tiny tube inserted somewhere between the legs, for total elimination. Nerves & musculature notwithstanding, ask your doctors, too. You probably have more contacts than I, AND stranger things have happened…
Morgellons Dis-ease, aka The Itching Dis-ease (dis = not ease) If any of you have – diagnosed or probably not – symptoms of: intense itching that interrupts sleep, balding, foggy thinking, etc. now I FINALLY found a teaching dermatologist @ a major univeristy, who believes me (after 3 psychiatrists cleared me of ” disillusional parasititis, ” Ekboms Disi-ease, etc.). He has enough clout to phone the CDC to give me relief to sleep more. But this nasty, mysterious saga continues…
Less than 2% of Dr’s in the World know of this. The public who watches TV is hearing more on: TV (CNN, etc.), Maury Pauvich & Dr Phil – even a plot on ER. There are a variety of suspicions about the cause – really fascinating, i.e., “alien” bacteria on meteorites, think some NASA scientists, so that’s why it’s Worldwide. Anyhow, I have a couple of suggestions & a contact who might help you. I surely could use your help, too. You are a tough AND classy support group!! Thank you for sharing & caring!! Please contact me so we can share
Mike: thank-you for helping out, I appreciate it. Good luck with your procedure Josh.
Gemma: Consult a new Urologist. If that’s not possible inquire about Ditropan (Oxybutynin) or similar drug to relax the bladder so it can fully empty and by drinking plenty of fluids hopefully flush the urinary tract infection through. 3 or 4 four naturally brewed beers daily may help, drink plenty of water too.
Lee: It probably is new cells growing, some call it proud flesh. An alcohol wipe (betadine is ok) will keep it clean and dry and as strange as it sounds, hemorrhoid cream will assist in shrinking it up, but these are only a fix. By identifying the cause for new cell growth you may prevent it from occurring altogether. Cause may be trauma like accidental pulling on the catheter or stomach/bladder spasm.
Walter: 86 and still enjoying sex, good for you! The pain could be from bladder spasm or more accurately the constantly rubbing tube as a result. It’s been suggested constant rubbing can further cause tumors and should be avoided. A drug like Ditropan (Oxybutynin) may ease bladder spasm. Also apply a numbing gel like zylocaine or lignocaine to penis tip. A supra pubic catheter is worth your consideration.
Lily: Not sure what that has to do with supra pubic catheters… do you use a catheter? Men and women’s bladders are the same, both drain from the bottom of the bladder, and both expel urine below bladder level.
I have not posted for some time, haven’t had any problems. until today. I keep up with the new posts to keep learning how to take care of my spc. I go to a VA SCI clinic and they are very good. My tube would not come out, my flow is good, site is dry, skin is in good shape. I turn my tube every shower, it moves freely, site is 1 yr old. It took 20 min. to pull out. Kept filling-draining balloon to try to change the shape, pulled from different directions. In the end they pushed down on my belly with a flat hand and ripped it out. This was 7 hours ago, my ears are still ringing from the shout I let out. I feel like my urinary tract was torn out of my body from its very roots.
I feel very badly for the person that can answer, but what the hell happened to me today? The nurse said scar tissue formed and the hole was smaller than the tube. I get a new tube every 3 weeks, last change was a tug, not a tug of war! My nurse, the same one since day one, put in a 20fr instead of the 22fr he removed. I love my nurse but I am scared to go back in 21 days. What can I do to prevent a repeat?
Hi Laurie, I have had the same problem. I too go to VA SCI for treatment. I change SPC’s myself and instructed to change catheters every week. As you describe I tried a number of things to remove cath but it was traumatic causing bleeding. I went to VA Urologist and asked him to change cath. After so much pulling he placed his hand flat on my belly with cath between his middle fingers and pulled until it came out. Again this caused blood to run down my belly and when the new cath was inserted there was blood in the urine. When I asked the doc for advise he did not have any real answers. I don’t have a problem with needles, blood or changing SPC but on future changes I made an extra effort to relax and had no problems changing SPC at home. Please let us know how you get on. Best wishes.
Mike, I am so sorry we have that shared experience. I have muscle spasms, and nerve degeneration. If relaxation has helped you I can try medication. I can’t relax on my own, but take a maintenance drug cocktail to allow me to hold and use a pencil, maneuver my chair and have a few functional hours. For my next change I will take what I am allowed for breakthrough pain and spasms 30 mins prior. Even today I could take a marker and trace all the nerves uprooted yesterday. I have been passing blood and tissue but with good flow and no leakage around the smaller cath. I am hydrated and watching to see if I will need to have my nurse flush my tube. I am not surprised your urologist had no advise for you. Collectively we are the specialist. Thank you for reaching out.
Hey Guys, if you use cheap nasty catheters you need to change them weekly as Mike said. If you’re using a good quality silicone foley catheter don’t leave it in more than 3 months. I use the latter and change every 2 months with no problems. With any stuck catheter it’s very important to first make absolutely sure the balloon is fully deflated. I can’t see how the hole could become smaller than the catheter
Laurie: more likely scar tissue grew onto the catheter. Your catheter may be twisting at site but not bladder and Marge on May 16 reported pushing or twisting is believed to have made her hubby’s pathway to large so keep that in mind. Keep on your 3 week changes Laurie, it should settle down, if really worried try silver impregnated non-stick catheters.
We all change catheters to keep down bacteria and infections. Frequency of change is a bit of individual thing. I use 100% silicone sterile catheters and a quality, sterile insertion kit. Regardless, of sterile product and sterile procedure anytime we put something foreign in the body we introduce a small amount of bacteria which can grow according to PH levels in urine.
I have had a long history of UTI’s therefore I change catheters each week. Yes, my urine is conducive to growing bacteria. If you go back and read the excellent advice posted in the past on keeping the correct PH level in urine you can understand my problem. I don’t drink enough water. I drink coffee and milk instead of fruit juice. Can’t tolerate all the acid in juice. I gave up sex and don’t want to give up small pleasures of my diet.
Laurie, my doctor did not give me a concrete answer but did mention that when the balloon is deflated that it is not nice and round. I changed my cath again last evening and again the trick for me is to relax.
Thanks guys, I do not have the fine motor control to change myself. Years ago I was able to self cath every 4-6 hours. Now I don’t even tweeze my own eyebrows. The VA uses a Bardex silicone catheter. I am not sure if this is a good product (lowest bid) is more likely. I have muscle spasms and spastic limbs, but I do have good drugs. I have my maintenance mix daily and some as needed. I seldom take anything extra, much to tempting to zone out with three teens in the home. I am sure it only happens in my house, but if I am not on patrol they revert to wild beasts, foraging for food, leaving a trail of destruction and peanut-butter on the remote. Next change I will take my extra meds to see if it relaxes me. If I am still having problems I will request the silver non stick, but be prepared to bring my own. As always thanks for the help.
Wild beasts, that’s funny and no it’s not just your house Laurie. I have some little ferral beasts who frequent my place leaving handfuls of empty lolly wrappers shoved under couch pillows. Bardex are generaly a cheap short term (1-4 weeks) catheter especially the brown ones but they do make silicone types often clear or green. You should find great improvements with a silicone foley or even better silver impregnated catheters.
Mike: if it’s not to personal a question. Why did you give up sex? Was it supra pubic catheter bacteria/infection related?
Laurie: Love your sense of humor.
Graham: My impotence is due to nerve damage. I can’t pee, poop or have sex but I can walk short distances. Nerves are tricky things. It is hard for me to get or maintain an erection. Ejaculation is nearly impossible. I have had retrograde and weak ejaculations with no feeling. So at age 60 and single I have given up on sex. Sex is a healthy part of life and I encourage everyone, if possible have an active sex life. Most of my UTI’s have been minor. However, last year bacteria found its way to my scrotum causing a varicocele. After I got that cleared up I was ready for a SPC and now I’m happy to be a member of the Mad Spaz Club.
Hello graeme and all the gang!! Thank you for your last post and sorry it took me so long to reply. well i did what you said kick and scream about my hubby, my head is ready to explode. the pseaudomoas seems to be so fierce at the moment its horrible for me let alone my hubby whos dealing with it.
ok so my hubby self cathertarises. they let him out of hospital 51/2 weeks ago when he had 7 days of gentamicine. he felt ok for 1 day, thats all. for the last 5 and a bit weeks he has felt awful its 2/12 weeks today where he hasnt been able to self cathertarise properly, I mean by that he drinks up to 4 litres a day and maybe getting a litre out my husband has no feeling as to when he needs to go for a wee he has no feeling of urinatineing at all. He’s not incompotent just has to guess when a good time to go is!!.
they told him to self cathertarise twice a day morning and night, he is having to cathertarise alot more than that tying to go about 10 times a days and still nothing he said it feels as if his bladder is collapsing when abit of wee comes out, im really sorry to have to go into detail its just that im in turmoil no one is helping us. you’ll understamd why once i explain. :-). His wee for the last week has really smelt horrid too, really horrid.
ok so i called the emergency docs out last week to come and see him at home where my hubby done a urine sample and the doctor tested it with the test strip, it changed colour as soon as the dipstick went in the doctor said ” oh my god its changed straight away and your off the chart for infection he just kept saying hubbys infection colour was 98 +++++++++++ whatever that means but it concerned the doctor enough to ring the hospital to see if they would admit him.
the doc was on the phone for about 30 mins argueing with the hospital to see him and get the iv antibiotics inside him as his still resistant to them in tablet form. they would not take him as he didnt meet their guidelines. ie he wasnt shaking vomiting and collapsed. so that was that doctor went and basically said to my hubby to get on with it.
Me, im not happy at this stage as he is very poorly. so i called his urologist and kept calling monday and tuesday wednesday i finally got a call wednesday evening from him RESULT!! but was it. he agreed to see the hubby the next day at the hospital in one of his clinics. we went in provided a urine sample he said their were traces of blood the hubby told him how he felt and the fact he couldnt wee properly again and the fact it smelt awful. so the urologist said “well hold on ill have a look at your notes” he came back out and completely changed the subject. what i mean by that is he didnt want to talk about my hubbys illness. he went on to say about an operation my hubby is having next week on a kidney stone, which is irrelevant. so i chirped up and said hold on if he has this infection thats completely off the chart he wont be able to have the operation because we all know you cant. he then said to us thats all he can do and bye.
well what a waste of time. ive spoke to my local mp but no joy from them. im going out my mind as to why the medical side of things no one is wanting to treat my husband. I have researched pseudomonas massively my head is about to explode. am i right in saying that ok he cant wee properly its smelling badly could this be the signs of sepsis.????
surely this is doing his kidneys no good with whats going on and surely it must be putting a massive strain on them. the medical staff told me when he collapses bring him in!! I dont want to do that graeme because thats really bad and who knows what might happen. sorry i’ve written an essay, but you and the gang is all the support i have at the moment im getting no support from anywhere else Please Help. Regards Gemma x
Mike: yeah nerves are unpredictable, especially when there’s damage at sacral levels S1-S5. If you meet a nice lady or simply for your own entertainment a penis pump and elastic band at base of penis should assist in achieving and maintaining an erection. I wrote in depth about the subject here wheelchair sex after spinal cord injury.
Gemma: at least I hope you can take some peace of mind in knowing you’ve exhausted all options. The only suggestions I can make are in the article. 3 main things: 1) Buy a pH test kit and adjust diet until reaching a pH less than 5.5 then take Hiprex. 2) A few naturally brewed beers daily. 3) Leaving an IDC in (change weekly) connected to a drain bag could also prove of benefit. That’s all I can really suggest. The only way to find sepsis is by blood test. It usually knocks you down quite fast once contracted. In 24hrs hubby could collapse and sadly it sounds like that’s what the Doctors are waiting for. Try the 3 above Gemma.
Hello Graeme and gang. me again. oh graeme everyday seems a testing medical day for me and hubby. ok so you know hubby has pseudomonas. i had to get a home visit today from a doctor because he is still feeling very bad. i sent off a urine sample last thursday to be tested. the results are it shows pseudomonas is at bay and not showing on the infection in the urine. but hubby now has e-coli infection. which i dont know alot about that. so the doctor gives him some antibiotics. ciprofloxin 500mg. hubby took 1, 10 mins later he was covered in lumps and his throat and tongue started to swell up so i rushed him to hospital, where they gave him a pirotone tablet to stop the allergic reaction. they checked hiis vitals which were ok. but they did say he was still resistant to antibiotics therefore they cant treat the e-coli infection until my hubby starts having fever and high blood pressure then im to take him in to get iv antibiotics.
I told them he is having problems self cathertarising hubby drinks 3-4 litres a day and getting a litre out if his lucky. so again his not being treated. how bad is e-coli with pseudomonas? he is also due an operation on friday to have a kidney stone out but if he has this infection im on the understanding you cant have an op with an infection, ??! i tried to tell them about him having this metallic taste in his mouth but they didnt seem bothered. i have read a little on e-coli in the urinary tract and it says if left untreated it can damage the kidneys. his asked me to write to you today as i tell him everytime you reply and he thanks you for the support. Kind regards to you and all the gang. gem x
Hello Guys! I am 25y.o recently dignosed and surgically treated for a severe bulbar urethral stricture. I have had my spc for 3 weeks now. There was a massive bleeding 2 weeks back for which I had to underto another op to clear the clots in my bladder. So far I am mostly fine with the spc apart from two problem:
1. nigt-time erections – It leaves me with a bad burning pain on my urethra (possibly due to irriatation of my wound by the seminal fluid) which stays for some time. Furthermore, I noticed clots of blood coming out of the spc following such erections. What is your experiece of erection (for that matter sex) and urin flow/ bleeding via spc, especially those of you with urethral pathology?
2. urination via urethra during defecation. The main reason I needed an spc is to avoid urine flow over my urethral wound until it heals. But some urine keeps dribbling and gushing out when I strain for defecation. Is this a common thing even if you have an spc draining your urine? Anthing I can do to avoid that? thank you so much!
Hi, My daughter has a spc since February, She has spina bifida and has struggled w/ incontinence since birth. She likes the independence she has w/ the tube but has problems with odor. This holds her back socially. She has no symptoms of an infection accept the odor. I asked her urologist about Hiprex or ural and she had never heard of it. She has her tube changed once a month. I am wondering what the next thing is to ask about. She wqould like to get a job but is concerned about the odor. Any ideas?
hi graham and you all, i use i legbag and a night bag, and change both every three days, but i was wondering should i be using something to sterilize them each day? any suggestions would be greatly received. the reason i am asking is i happen to have diabetes and have been getting constant uti infections, although doc has given me some long term anti-biotics, as when i have a uti it puts my blood sugar up high. i have just been put on victoza whick is supposed to lower above problems which will help me lose weight and allow me to come off insulin, i had a good couple of weeks not using insulin, just victoza and my blood sugar was perfect and i lost 2 stone in 4 weeks, because i was on 216 units of insulin a day and my body was resisting it and turning it to fat in my body.
I do have some good news, i should be getting my new mercedes benz sprinter with hand controls, and wheelchair lifts although it has taken a year from ordering with quite a few delays due to maifactere and adaption specialist, i was suppossed to have it in september 09, i will be able to get out and about in my electric wheelchair, i am also awaiting a transfer to a wheelchair adapted bungalow with my family, i have been confined to the front room sleeping on electric recliner chair,as i can no longer use my stair lift as it hurts my back too much and i cannot bend to its shape, yours truly papa12
Gemma: e-coli thrives in the acidic environment of the bladder where it multiplies and inflames the bladder lining causing a condition known as cystitis. It only becomes a big problem if it backtracks and infects the kidneys as you may know. Drink plenty of liquids and take a urinary alkaliser or one teaspoon of baking soda (bicarbonate of soda) in water to clear it up. It shouldn’t be a big enough problem to stop kidney stone surgery.
Belew: that is quite a complex problem for a 25yo to develop. Preventing unwanted erections is not easy unless you undergo surgery to stop them completely. I’ve never noticed blood clots during or after an erection or sex. I suspect the clotting is coming from the repaired stricture site and so should subside in a few weeks. As for the leakage a little is not out of the ordinary for active people. If it’s bothersome reduce activity and insure your supra pubic catheter is draining well. Avoid bearing down on the toilet, it can cause hemorrhoids. Take a stool softener like coloxyl senna at least until you have the spc taken out.
Suz: I believe it’s often called Urex or Mandelamine in the U.S. The drug name is Methenamine hippurate. Ask at your pharmacy as you should be able to just buy one or similar over the counter (don’t need a prescription). You’re right, strong urine odor often indicates infection or overly concentrated urine. Make sure she’s drinking at least 3 litres (6 and a half pints) daily and empties her collection device frequenty. Have a urine sample tested for pH level and infection. As in the article, Urex etc are best effective when pH is less than 5.5. You can lower urinary pH by diet.
papa12: I srongly advise cleaning and sterilizing urinary drain bags etc before reusing to avoid infection. There are many commercial sterilizers on the market like Milton and Hibitane but even bleech diluted with water to a ratio of 1:100 or vinegar at 1:10 or hydrogen peroxide at 1:10 are effective in sterilizing drainage bags. Gled to hear about your van, it should bring you greater independence, which we all love.
thank you graham, much appreciated, i am suprized i never questioned the nurse about it before, i am so thick sometimes, anyway thanks again, yours truly papa12.
Graham, thanks a lot for the tips!
hi ya grahem thank you for your reply. hubby is still in hospital, will be for the next 2 weeks as the infection has spread into his groin (testical) and stomach. he was on gentamicin as that was the only antibiotic that he wasnt allergic too. unfortunately they have now said he is allergic to all antibiotics as he had an ellergic reaction yesterday to the gentamicin.
all the doctors said was this is a very complicated case now. im not sure what this means as with the rest of his life not being able to take antibiotics. they put him on some sort of medication that is in iv form 3 sachets a day for the next 2 weeks see how that goes, he’s on morphine and ibrupofen. his water works are still not playing cricket, but they havent mentioned a indwelling catheter or an spc or anything like that.
i just thought id give you an update as ive popped home and saw your reply to me. lets just hope his going to be ok. thank you for all your information over the last few months its really helped me to come to terms with things. regards Gemma
our thoughts and prayers go out to you gemma and your husband, every thing will turn out ok, the doctors are doing all the right things, best wishes papa12.
Hello to all im currently in the hospital for the next few days recovering from the urethal reconstruction surgery i have a foley cath and spc AND two drainage tubes an let me tell ya waking up after surgery HURT! the docs obviously try to dope me up every chance they get but im somewhat against pain meds. they say i lose drains before i leave here and BOTH caths in about a month! thanks for the prayers.
Hi folks, I have a question about a product I found online called a Belly Bag. It has an adjustable web type strap around my waist, the bag itself hangs over the SP site. It holds 1000 cc’s and fits nicely under my clothes. The instructions say it can be worn 24/7. To shower I have been using a plug like I do for swimming using good hygiene practices . The bags are very expensive about 30.00 each, and since I love them I am sure it is not good for me. Has anyone used this product? Am I asking for trouble? Thanks, their web site is http://www.originalbellybag.com.
Laurie, I can’t see a problem with them, if it works for you go for it. I don’t think they’d suit me. It’s interesting they use the term “studies comparing” but they don’t quote any actual medical or clinical study sources or references. You should be able to clean sterilize and re-use the drain bag a few times to save money.
Thanks Graham, one problem is righty tighty-lefty loosey. I have soaked my bed twice by not correctly twisting the drain plug. It says 1000cc’s but I believe 700-800 while wearing is more realistic. I am still happy with the device, it allows me more clothing choices and more independence. I cannot put on a leg bag with an extended tube, or drain discretely in public unassisted.
Hi, My name is Shawn. Ive been reading posts in the MSC for over two years now. I had a car wreck in where my pelvis was crushed, I also broke my c7 and the L4 and L5. My pelvis injury caused separation of the urethra. I had to have supra pubic catheter, and have one now for over 2 and half years. In the time I have had it, I have tried to find the cath that workes best for me, and I have not had a lot of luck. I use leg bags ever day of my life, and I have found the right leg bag, just not found the right type of cath, any help or info would be greatly apperciated.
Shawn, are they sticking, falling out, bypassing, hurting or some other problem? Your injury sounds similar to Joshua Lee who commented back on April 1, 2010.
speration of uretha how? i dont know any technical terms but my “seperation” was the tube from bladder to uretha and that was ripped apart like paper and at the time of the accident the doc managed to get the ends together, unfortunately the rip allowed too much scar tissue which lead to the surgery i just had where the scar tissue was cut away and the ends were cut smooth and rejoined. right now i have a small small foley cath capped and a suprapubic with bag until the 28th. im hopin no more tubes after this.
When my pelvis was crushed they (the doctors) said it was like a scissor inside my body, and it cut the urethra in two. At the time of the accident they said that there was to much damage at that time to repair it. As far as the caths go, ive just never been able to find one that was comfortable. I dont guess I will ever find one that is comfortable.
Yeah, a silver coated catheter as they are low hypo-alergenic and non-stick combined with a numbing gel might help ease it but you’ll probably always have some level of discomfort.
Hi everyone… I am a caregiver to my mom and dad. At Easter time my father came down with a UTI, he was hospiltized for 4 days. Had another UTI Memorial weekend. They since have had him Cath himself for a test. He can go on his own about 100 cc and then he cath’s 300 cc’s. So now, he will be cathing himself 4 x’s a day for the rest of his life.
Now we have a another issue ~ scar tissue has built up in his penis and it is becoming more and more difficult to get the Cath into his penis to reach his bladder. The doctor just tells me that he is going to have to JAM it in ~ that is the only solution he said.
Now I am ran across this web-site and learing about it for the first time ~ has anyone out there expienced the scar tissue problem? Is that why you have resulted into the SPC route? Our doctor makes us feel there is NO other way. My dad is 78 and becoming more and more depressed ~ Suggestions???? thanks
Hi daughter, there certainly are other solutions. Scar tissue often builds up when a poor self cath technique is practised over a long period of time. I’d be inclined to insert a catheter via the penis, inflate the balloon, connect to a legbag and leave in place for a week (they call this an indwelling catheter IDC). Depending on the outcomes you might then consider a supra pubic catheter. There are also surgical operations worth consideration. I suggest you guys consult a urologist to further explore all the posibilities available to your father.
I am mobile and have no right to beef about anthing compared to the brave people that deal with so much. Born with mild spina bifida, it didn’t take it to toll on me untill my forties. 58 now and several fusions later I have a supra pubic catheter of 3 mts now. Every horror story there is I have done. My biggest problem is waking up with the connectors seperated and my newely changed sheets soaking wet. I tape everthing! I guess I could go to the auto store and buy those little hose rings and screw drive the tight. I had not idea people have so many uti’s. I am on my 2nd.
I tried to join mad spaz site but can’t seem to get my log in to work. There is no contact site to email them. The urologist did day surgery and the nurse handed me xtra gauze and a leg bag and said see the DR. in 6 wks! I had NO idea how to care for the wound or anything about this spc. I wish i had found forums like this then. For a year i had to strain to pee and didn’t know i was pushing urine back into my kidneys. I hope i did the right thing. I will continue to read others post, I know I can gain from them.
Hi Ronna, we don’t give out our email address as we want people to post here, so others can benefit from the comments questions and answers. Thanks for reporting the login trouble, a few others reported the same. I haven’t been able to replicate the problem to diagnose and fix.
Graham thank you for your ackowlegement e mail. It was your aug 15 2009 post that gave me my first FULL info on spc! Others have said GOD send and you are! Are there women who post and have spc as mine seems to sdinks in and i get terrible pains below, i mean real below like its jabbing me and i have to pull it out slowly a little to alieviate the pain. Do you know if this is common and is there more i can do? I use a leg bag with a long tube that i can hang from the bed and strap to my ankle when i walk.
Born with fetal alcahol spine (where is spellcheck when i need it) i return to ed several times during the day as chronic pain doesn’t give me several hrs at a time to be up. I was amazed that uti’s seem to be a part of spc. I couldn’t self cath as 4 of the 7 vertebre in my neck are fused and my spine didn’t let me. (Boy, am i the same person as above who said i didn’t have the right to beef about anything lol) Again thanks so much to all who contribute and make my life easier.
Thank-you for the compliment Ronna :) Many lovely women with SPC do read and post here. Some have told me of pain in their private parts but usually it’s associated with indwelling catheters not supra pubic. It sounds like your catheter isn’t in the correct position so might be worth having an ultrasound to see what’s going on. It’s quite likely your bladder has shrunk and the catheter tip is being pushed into your urethra causing irritation. If that is the case there are several medications that can stop the bladder shrinking.
Hi Ronna, I know that pain down below. The right meds for bladder spasms are a priority, as is a drug called phenazopyridine. My doc calls it a bladder asprin. It relaxes and numbs the bladder to allow pain reduced draining. Leg bags with extended tubing do not allow for complete bladder draining for me. When I have that pain I use a night bag, when I go out I run the tube down my pant leg, cover the part that shows with a stethoscope cover for modesty and put the drain bag in a canvas bag with long straps. No caffeine and I push fluids, while I have pain I stick with the night bag and the meds.
All I care about is reducing the discomfort and making sure I fill the night bag with lots of light straw colored urine, the more diluted the less it hurts. When the tube is inserted if pushed down to far, even if they pull it back when I say it hurts it is to late for me. It hurts inside and out for days to weeks depending how aggressive I am standing up for myself and taking all the steps listed above. It gets better as you get better, tell the person changing your tube don’t bother the nerves at the bottom of your bladder and if they do take immediate action. I have gotten weeks of misery down to days, not perfect but much more livable.
Don’t let anything tug your tube. I use a statlock, the name of the device, to secure the tube to my thigh, when in pain I also use a wide leg bag strap above my knee. I use one of the velcro tabs around the tube. No tugs allowed. I keep my incision site clean, dry and covered allowing air underneath. I am careful my clothes don’t put pressure on the site and I sit so that my tube is not kinked. Read every post, learn your body and your health care team. You can make this work. I did and I am a slow learner, no choice but to listen to your body.
@ Laurie I’m wondering if the drug you mentioned phenazopyridine, is the same thing as oxybutynin? I have been using that for 2.5 years now for bladder spasams.
Never mind I just answered that question for my self, a female friend of mine told me that phenazopyridine is what they give her when she has pain when urinating. So I’m guessing that is something just for women.
Pyridium is the trade name of the drug, it treats pain and discomfort of the bladder and urethra. It is a prescription drug so your doc will explain how and when it is useful and the side effects. It will turn your urine bright orange or red and will stain everything it comes into contact with. It will ruin contact lenses and if you cry you will cry rusty tears. I could not get by without it, it numbs the urinary tract and allows my bladder to drain without discomfort. If your doc feels the drug is safe for you it works for men and women.
Laurie I have a question about something else you mentioned which was the statloc. I dont know if I have exactly what your talking about, my cath comes out of my bladder, and I tape it to my left thigh and I tape it like a left turn down my leg it that makes sense where i attach my leg bag, and strape my leg bag around the upper part of my leg with the let out valve being right around the otter part or my left knee. Just wodering what the statloc was.
did I mention when I gave the pre op urinalysis about a week before surgery they discovered MRSA in the urine! as freaked out as I was I went to every website and asked around as much as possible an I just want to throw out there that yea it is a dangerous infection but CAN be treated with certain pills so if anyone gets the news do not freak out as badly as I did because I’m just fine now no big deal :) just a FYI
Shawn, a statlock is a catheter stabilization device, that’s how it is described on my prescription. The best way to answer it is to give you the site http://www.statlock.com the type I use is called a foley 2-way. Tape can come off in the shower, or get pulled off during a transfer. A statlock will not move until you remove it. I change it once a week and to spare my skin I rotate placement to avoid irritation. Some folks can’t take advantage due to skin integrity or cost if not covered by insurance. I would not be comfortable without mine, accidental tube pulls scare me.
Laurie, thanks so much for the help. I went to the site, but tell me which one you use, as I did not see one that said it was for SPC’s. Again Thank You.
Hi Shawn, on the site under the top tab named product portfolio, you will see foley catheter about 1/2 way down the list, click that. Hit the Statlock stabilization device title in blue on the new page. I use the FOL0102. At the bottom right there is a pdf. read or print brochure. It gives all the info and useful pictures.
Laurie, Thank You so much for being kind enough to help me out.
I have a question and not sure how to handle this or even if I will get an answer but here it goes anyways, my husband just got a spc and he keeps getting sick and also he keeps pees his pants its like he is going the normal way but he has to much scare tissue to go that way thats why he has a spc, is this normal for a spc?? I have taken him in to emergency and they keep telling him not to worry about it, but I am very concerned, they did check to see if his soc was blocked and they said it was not and he is still ending up with very wet underwear and I am not sure what to do so if anyone can answer my question cause I am so worried that something may be seriously wrong, thank you
Hi Sherri, I’m only 2 mths into having mine and i wear poise pads most of the time now and didn’t before. Being female may be different but i think Graham said in earlier post that its ok. that it is like an overflow valve. Sometimes spasm can do it or a temporary kink in the catheter. It sometimes feels like pressure is relieved when it does it. I just got over a uti and felt flu like this morning with aches in all my bad places. I am trying to GO WITH THE FLOW, lol so to speak and improve my sanitary handling of everything. Others should advise you too as i am new to this.
I am so happy i am beside myself! I put two hose connectors like used on cars. The kind you screwdrive around a hose to make it tighter and WALA, no leaks and no tube came off in the night drenching me by morning!!!! I can’t believe we can send men to the moon but can’t make a locking device for the tubes to connect to a leg bag or a night bag. This was a cheap fix and i put tape over the clamp so it wouldn’t be sharp. Of course i feel like i just invented the wheel but welcome other ideas as well. Ronna
Hi Ronna, congratulations! A cheap fix is a good thing. I think you will find as you go along and get frustrated with the inconveniences this new thing presents you will surprise yourself how creative you can be.
Hi Ronna, Please keep in mind the catheter and tubing connections were designed to come unplugged before doing too much trauma (pulling) on the body. In time I think you will become very good with all of this.
Hi Laurie, Thank you for the info on the Statlock Stabilization Device. I use these most of the time. Sometimes I will use the waist strings on my pajamas to tie the catheter close and prevent pulling. Recently the triage nurse told me of a patient that came in covered in blood after the balloon had been pulled out still inflated. I have observed several times at the hospital someone being transported in wheelchair or gurrney and have the urine bag dragging below. Over time I have become guarded and protective.
I just found your site tonight and after reading all of the posts, I decided to chirp in. I’ve had a spc for a little more than a year. To my horror, last Thursday, my spc came out. I quickly called the nurse to come to my home and was told that by the time she would get here it would be closed. She was right, the site closed within minutes. Don’t let yourself be fooled into thinking that you have a lot of time to replace the tube, you don’t. I am going in the morning to have the wound reopened.
I dread going through all of the pain and uncomfortable feeling but the past three days reminded me why (urinating without control) I was so happy with the spc. I did have frequent UTIs in the beginning but found that when I changed to a silicone with a plated tip that I had a much better outcome. I do not change my own spc because I have neuropathy, really poor eyesight and severe ankylosing spondylitis. I am a female, 49 yrs old. Ready for the new bout with surgery! The nurse said I could have had it done in the office, I opted out!! I’ll be put to sleep and when I awaken, my spc will be back in… I pray! Thanks for listening… hope this helps someone else!
Hi, my hubby has an sp cath. We have mega trouble with the connections coming apart in the night and dumping urine in the bed. We tape the joints, but it doesn’t seem to help. Any suggestions?
Hi Bonnie, If you read a few of Ronna Burnett’s posts above (July 16 & 22) you will see she had the exact same problem as your hubby. Tapes and glues are messy and not always effective. Ronna’s solution was small vehicle type hose clamps.
Hi, I don’t trust tape. I use a Statlock device mentioned in a July 17th post. I also use a fabric and velcro Bard wide leg bag strap. I place it above my knee and use just one of the velcro tabs to secure the tubing to my leg. Even if my legs jump in the night no stress is placed on the connections or my belly.
I have an SPC and I use a plug-is there anything else I can use? My thinking is it would be great to have a valve like device to release urine–this would make it so much easier and less conspicuous when I`m useing the rest-room–Please Advise–Thank You
Well, I have had my 3rd change of my spc, each done by a different professional, Post infection… again! I just can’t get over how utterly toe curling painful it is!!!! This nurse who is so patient with me did realize that holding my abdomen down is so important. Relax… well i did my best. I will have a pilot check list of things to do BEFORE she comes. Take lots of my meds prior. I could use some versed. It bled alot and most of the day. It will be sooooo sore now for 2 weeks.
Laurie and Mike are so much like my story. I am back to nitely soaking of my sheets as my hose clamp worked 3 times and damaged the cath. I swear even statlock doesn’t stick well and I even wipe real good with alchohol (on the skin). Should drink it before the nurse comes. Seriously I will not let anyone touch it untill they either knock me out or come up with a way where its not so painful it feels like my whole inards are coming out! My blood pressure was through the roof for about 20min after. I will also improve my hose clamp idea where it doesn’t eat the connection. Even a Dentist will inject Novacane first. I have the cream but this pain goes deep.
So glad to know about swimming. even snorkeling at the coast Not our greasy gulf but elsewhere. Now…can i use the spatub we had for 5 mths before, now sits empty. My hubby thinks not as the stoma is still an open area around the cath. By the way, I know its your web site and if I knew how to i might but could you put a few beefcakes on your site for us women? Good luck to all.
Hey Josh, you’re on the right track. They’re called flip flow or Flip-Flo valves. It plugs directly into the end of the catheter or urinary drainage device and as the name suggests you flip a small lever to open. Some twist, others pop open, which is best depends on lifestyle and how much, and how strong, a persons hand function is. Bard sales support offer a free plastic lock to attach to their leg bag tap or Flip-Flo valve to prevent accidental opening.
Hi Ronna, sad to hear you’re not doing so well mate. As the statlock wasn’t effective and clamps are destroying your catheter or tubing take a photo of the plug and tubing that’s falling apart for me. It simply should not happen if you are using the correct equipment. Give brand names, make and model numbers etc I’ll look up my continence aids catalogs for you. Even if it costs a little more some top quality gear could well be worth a trial. Oh, send me a few men in wheelchairs images too, I’ll create a gallery and give you the keys to upload all you like ;). I’d love to hear more content suggestions for this website guys/girls.
thanks Graham–Where can I buy the Flip-Flo in the St Petersburg Fla area–Please Advise==Thank You
No idea Josh, you can purchase them on the internet from wherever/whoever you like. Or inquire at your local hospital, pharmacy and medical suppliers.
Simple and quick. Just, thanks for being here. I’d never heard of all this, but after 11 years of self straight cathing, it sure sounds good to me. Amazing how urologists don’t mention it. I’ve had only a few real problems, but the worst was being in the supposedly best hospital, then the best skilled nursing facility in the state and finding they didn’t have enough straight caths, I’m really, really ready to ask for this solution. Most of you probably know the problems you get into with cathing yourself in public places, or deciding NOT to until you get home, then OOPS!
I have fairly mild MS of many years standing, that’s the source of this and other probs. But thanks for the wide-ranging, useful info.
Yes, there are many ways to manage our bladders. Straight cathing is the preferred method over external or indwelling. I wish I were a candidate for the device that you push a button, get a electrical current to the nerves and then pee.
Yes, Janet, it seems unreal that a hospital or nursing home would not have catheters. I guess you remember it was not that long ago we were told to wash them and reuse. gee.
For the men: I used external (condom) catheters for a number of years in the past. Recently I was talking to one of the nurses at the clinic and she was telling me of a new, better type of external catheter they are now using.
Hi everyone I have had a spc for approximately 9 yrs. I have never had my spc come unconnected in the night. My spc is connected to a drainage bag which hangs on my wheelchair during the day, and on the side of the bed during the night. There is a long hose that keeps the spc connected to the bag at all times. The hose runs down my leg, and it is held in place by a “LEG” strap. The strap prevents the spc from becoming disconnected.
I have a spc, i irrigate myself twice a day with sterile water. My spc is changed “weekly” because of sediment. This has been taking place for quite sometime. I have had the spc for 9 years. Along with the catherer changing weekly due to the sediment. The sediment has been changing over time, sometimes snotty looking stuff, other times almost the consistency of very small grains of sand. At the present time my urine most of the time smells ‘ REALLY GROSS’, despite the fact of drinking cranberry juice and a fairley large amount of water every day. I am a paraplegic since 3-8-01. Along with my spc on my right side, i have a colostomy on my left side.
hi i m due to have a siparpubic catherter fitted in the next 2weeks i would like to wat i could exspect after surgery and how long would it take to heal and get back to normal any comments gratefully recived many thanks andy
Al, I have the same kind of sediment but not the foul smell. I have found the foul smell and cloudy color to be the best signs of infection. When I was instructed on irrigation I was told to mix two tablespoons of distilled vinegar with 200cc sterile water. After injection do not hold it in… Let it drain. I irrigate once a day.
Andy, Welcome to the club. My SPC settled down after about four weeks. Fairly simple procedure. Good luck.
I have had my spt seen April, have a lot of pain. It came out Mon. nite. I put it back, called Doc. said thats fine so long as I got return. He mention bladder augementation. I really dont want that. What do you suggest I do. I also have the urine going normal and thru tube at same time. LOL
hello everyone hi grahem, its been a while since i wrote on here things have been up in arms with the hubby his become allergic to all antibiotics orally the only one that was left was merapanom intrevenously, untill friday just gone. he’s been in and out of hospital unable to self cathertarise due to infections and getting blocked with some gungy stuff his urine is so foul smelling yuk. the gunky stuff is constantly coming out he has an indwelling catherter in at the moment and its still coming out and smelling badly.
we was told yesterday that they couldnt get rid of the infections the medication isnt working he had his last dose on friday just gone by saturday the gunky stuff and getting blocked while self catherterizing started all over again so we went to the hospital and they put an indwelling catherter in again he was admitted into hospital tuesday just gone as his not feeling well at all, his urine is showing massive infection so to date he has proteus sp faecalis e-coli pseaudomonas.the consultants came round to see him tuesday evening and said they would have to get a specialist in from another hospital to look at his notes and to see if there is any surgery they can do to help.which im not sure what they can do hubby is so worried they will take his bladder away what happens then will he have an spc?
im so worried at this time with them not being able to treat the infections because he builds a huge amount of ressistance to antibiotics. his indwelling catherter is bugging him abit he says its very itchy is this normal? please if anyone has the same problem please chat with me as im going out of my mind as to what is going to happen, he has a kidney stone also which is only6mm in size they were saying that could hold some of the infection but then another doctor says no it wont because its not big at all. but they cant get rid of the stone because of all these infections being so high at the moment. when the nurses dipped his wee to see what was in i it changed straight away with infection protein and also off the scale for blood.
hope someone can give me some advice. this has been going on for months and months and only now the hospital are bringing in a specialist which they say can take up to 8 weeks to put a plan together but surely my hubby is going to get really sick if this gunky stuff and the smell carry on. im making a complaint to the nhs and also im going to hit the media worldwide as this is a terrible situation my hubby has been in. please help anyone !!! xxxx
I hope you problem is resolved since August. My spc is driving me crazy at times. I am having a lot of bladder spasm and even rectal spasm. I hadn’t had before. I will check with the Dr. next week but havn’t had this before. I drank too much and passed out at Walmart. I guess green tea was the culprit. My Sodium got too low. Live and learn. The Dextrol does nothing to keep the spasm away. There are times i want to take the spc out and live with straining to go. I may not have the catheter deep enough as i do a lot of spasm related release. Go figure, can you?
Gemma, if his bladder must be removed there are surgical options like Spincterotomy and Mitrofanoff proceedures where a passageway is constructed using the appendix so that catheterization can be done through the abdomen to the bladder. Itching often accompanies infection which we know he has. Throw in a kidney stone and he must feel like he’s been hit by a truck. I hope the specialist can solve at least some of his issues. Hang in there hun.
Ronna, when trauma occours to your bladder and SPC site, such as pulling on your catheter, increased spasm can be expected. UTI (urinary tract infection) can also increase spasm. Bladder augmentation should reduce the bypassing but I understand your reluctance, ask your doctor about increasing your Detrol dosage rates or perhaps try an alternative drug like Vesicare or Ditropan. Might be worth checking for UTI as well.
Graham!! Thank you for getting the word out about Morgellons – which seems to relate more to the urinary track than we 1st thought. Hmmm… The WHO (World Health Org) began a 1 1/2yr study last Jan., Germany is the 1st country to admit to spreading chemtrails,* thanks to Aunt Blabby here, more than 2% of docs in the World know of “IT.” >> See cherokeechas.org for skin/laundry/etc., SUPPORT PEOPLE getting fed up with living with IT in/out of you, etc. Of any 1 industry it is nurses who are hit the worst worldwide by The Plastic Plague [did Corning get product in IT?], aka MgD, aka NASA’s “alien” theory [bacteria on meteorites, & many more theories.
My son climbed on the 'net & found a woman dr. who has IT & uses NutraSilver. [Order on 'net] The morning after – I SLEPT ALL NIGHT FOR THE 1ST X IN MOS!! – Walt woke me exclaiming, “It must be a miracle; only pink & white scars nooooooo open wounds nor even dry scales!! Yeah, yeah, Mom, so I took the full dose that night. But what terrific incentive to work up to it, again!!!!!!!!!!!! No disclaimer necessary; for you have a superb website, diplomatic/responsible way of diseminating info, & useful/compassionate groupies – now like us here. We hope you are flattered that we carry a highlighted copy of your www re SP pain +… to appointments to the urologists, who – inspite of the pain article on the cover of Newsweek [we take that article to docs, too] – seem NOT to know the VA is the leader in the pain mngt field, + Cleve Clininc has the huge new Glickman UROLOGY bldg.; surprise – nooo painfreeness there either!! But a couple of Dr’s no longer laugh @ my idea of a lil blue [size of a nephrostomy tube] nearly straight down from the bladder, between the legs. Yeah, yead, lots of nerves, etc. & kinda girlie BUT would you rather be in this kind of pain even a min. more?!! You guys design this. I’m not as motivated as you men must be, tho I’m seeking how to patent other, med-related products. Know a good atty?
We wonder if any of you know the outcome of The Pain Society’ 1st SP Pain Workshop in 2010? What is the 1st name & E address of the little boy [c/o his father] who has the throbbing in the end of the penis. [I know from the 'net he & Walt are not the only ones with misery in the crown jewel of the family jewels.] Walt would like to encourage this so young person on the Internet, especially since he gave up his biggest motivator @ 86 – volunteering as Quality Control + person @ the nearby school for 300 handicapped kids… for fear of “sharing” morgellons. Quitting really broke him up, so this young fellow would be a boon to Walt, also.
THE best NON-gov’t www is >>> cherokeechas.org <<< I copy the letters from Dr Smith to "Collegues" & Dr Randy Wymore's to "Dear Practitioners" Dr's get copies @ apts with the others. Surely, you know as well as I Dr's in particular – acadamians that they are, tend to believe what is written. Read, "What ever happened to common sense?!!" Soooooo that's why we put trust into your endeavor & your following, Graham!!!!!!!!!!! "Foggy" thinking is 1 of 2-pages worth of symptoms of Morgellons. morgellonsymptoms.com I can add some more. Walt has a mere 2 paragraphs. Thus I apologize if I've been repitious; hopefully, tho, repeating will drive home some useful points. Let's think solutions, troops & kindest regards!! Lily for Walt, too – a WWII mostly @ Okinawa soldier THRILLED our troops are on their way HOME as of today!!!!!!!! PS – This really is my favorite www to type upon, given the black baackground, layout, simple-to-find cues – A+ – as well as the USEFUL info!!!!!!!!!!! * Jets ordinarily spew narrow, parallel exhaust. Chemtrails' exhaust spread out in more & more of a "V" shape. The latest/greatest suspicion is that it is gov't [or ordered by gov't] for the purpose of eventual DEpopulation… possibly at the hand of the Illuminati. Gee, there must be another Tom Hanks movie in this.
Hi Lily, I tried colloidal silver (NutraSilver is a brand name) several years ago. I didn’t notice any great benefit in reducing problematic urinary sediment levels at the time. That is not to say it is not of benefit, I suspect my sediment problems were due to factors other than urinary tract infection. I know several people who swear by colloidal silver as treatment for UTI and conditions like ulcers and morgellons. I’m glad to hear of your continued sucess with it. I’m thinking, it may be something Gemma’s hubby (see Aug 14) could try.
heyy yall, its been a while since i commented i know but i really felt the urge to come in here and says thank you to everyone in here and also to say keep positive. i had my surgery finally and no longer have any catheters. it was definitly a journey learning to adapt at 19 yrs old and learn to limit myself. i must say that im ready to get back there and run again but the docs are still telling me to take it slow, i cant blame them. With the suprapubic cath in so long i gained a very interesting scar my friends like to call it my second belly button :) any ideas on when/if that will return to normal? once again STAY POSITIVE. GRAHAM WHAT YOUR DOING HERE REALLY DOES HELP PEOPLE. for that i personally thank you.
Thank-you Joshua, your questions and comments have helped people here too. It’s you guys that are the real champions. For your scar have you heard of Bio-Oil? It’s available in many countries including USA, France, Australia, it reduces scar tissue and stretch marks etc. Cocoa butter works but isn’t as effective, you’re better of making chocolate and using Bio-Oil. All the best Joshua.
hi there i have had my spc for now two months and tonight i noticed that i may have a site infection, it is sore down there but my urine is clear i had a nurse check on saturday and she said it was still red but no sign of infection and i dont feel any symptoms,but due to my anxiety im a little worried please help me thank you
Onkar; you have two of the symptoms of site infection, red and sore. But that can also be caused by trauma, like pulling on the catheter. I would just keep it clean and as sterile as possible. If other symptoms appear, stronger smell, burning, or itching, then sure test for infection.
thanks graham, I got a nurse to check it out and its not an infection it just hasn’t healed proper so I was advised to go see my doctor.
graham my next question is can a site infection develop right away after being told i have no site infection
Onkar; as you may have read in the article, a supra pubic catheter site never fully heals. Due to that you will always be at risk of infection, anyday, everyday. But there’s no need to become germaphobic unless you suffer severe adverse reactions or have a pre-existing condition like HIV/AIDS that makes infections adversely detrimental to health. The fact you have not had an infection in your first two months suggests to me that you are doing all the right things to minimise your risk of infection. If the soreness you are experiencing becomes to annoying try a numbing gel like a babies teething gel or lidocaine.
Hi Onkar, have you had a tube change yet, or you scheduled to soon? I have had a SPC for over two years and my site flares up now and then despite all precautions. In addition to red and sore sometimes mine will have some discharge and look infected. Site swabs have come back clean, it is just as Graham said, the body trying to heal. It was still scary for me until I became used to how my body would now respond.
I still go through that cycle and find my symptoms clear after a tube change. When in doubt I check with my nurse, and if I think I may be getting an infection I track my temp, fluid intake and appetite. Seems to be the top three questions my nurse asks. It will take some time to learn how your body will respond and how to best work with your health care team.
You are fortunate to have found this site, when I encounter something new I go back and read all the old posts. Someone probably had the same problem, and the collective expertise helps me educate myself to be a better advocate for myself.
Graham, Wonderful work you have/are doing here! I wonder if you are aware of The Pain Society’s study on suprapubic tubes & pain and what the results were. Thanks!
No I’m not, there are several pain society’s, do you have a link Nikki please?
Does anyone else have a problem with pants riding down on SPC? Underwear, pajamas, anything with a waist band will slide down and rest on SPC. I wore suspenders for a month after surgery but have now given up the suspenders. Any advice?
Advice! hey Mike while i had my SPC i had to switch my trousers to anything with a stretch waistband. the trick i used that soon became a habit is you wear your pants/shorts Under the SPC site. and if you sit or lay down you pull them over the site. gettin in and out of my car was very uncomfortable especially in jeans so i wore jeans only on special occasions. using that trick made everything so much easier and comfortable.
At 47 I did not think I would be shopping in the maternity section for myself again, but looking for pull on pants all I could find was ugly and uglier. A saleswoman suggested I check the maternity section for a more fashionable selection.
I was remembering the front panel pants and was likely quite rude. She was persistent, and showed me they now are made with a wide elastic band at the top and come in a good selection of casual to dressy. It is easy to roll the waist below my site depending on my shirt or wear it above and it stays.
Pull on pants also allow me to dress myself and more safely pivot from chair to toilet. Any thing that adds to my independence and safety is found treasure. I secretly enjoy the reaction I get in that section of a store from other shoppers, this peri-menapausal woman in a chair must be lost!
Dear Mad Spazers!! Walt(86) is reeeeeeeeeeeealy angry… as am I… The worst part of the story is the pain for him, unnecessary costs, lost quality time from life, & relatioships down the tubes. Pun intended!! The recommended/usual protocolS, agreed upon by Walt, his case mngr/& boss & me/care mgr: SP CHANGE Every very 3 weeks Walt – who knows the lilteral ins & outs – changes the SP with me assisting. Hospital staff are amazed WE can do this. Who do they think was clever enough to win WWII?
Walt is literally sick of the pain during changes + residual bleeding over 7yrs!! He goes @ his own pace, experiences minimal pain & rests when it occurs. There have been no hospitalizations after changing the SP tube. Pay him for this discovery; 3 balloons popped in 1yr, tho we were told, “They NEVER pop.” We carry 20FR, etc. in the car on trips, because ER’s usually don’t have one AND waiting in ER is always beyond time to reinsert – 20 min. Overanxious residents = pain!! 2 URINARY TUBES Walt now has 2 tubes… As the Co’s Trouble Shooter, he drove & flew ’round the World selling HVAC. Predictably, there were blood clots in each calf. The AMAZING Greenfield filter was installed. (www it.) 2 days later, during an ultrasound to check it’s placement, the technician exclaimed, “Did you recently swallow a football?!!” We all gawked @ a 2″ kidney stone, which caused NO pain, for it was stuck in the bottom exit. Dr. said, “In 2 hrs it the kidney would have burst & killed him.
Thus the life-long AMAZING Greenfield filter was installed. (www that, too) 3 Halloweens in a row he had a 2″ kidney stones stuck in the kidney’s exit, thus it did not move – nor hurt. #1 Immediate lithotripsy. #2 Ditto the next Halloween. #3 Walt swore he would not put on his Don Quixote costume, again, until he had the 3rd ultrasounded. BUT this stone shattered, was thus sharp & jagged, & slashed the ureter from kidney to bladder.
He’s so healthy otherwise that tissue grew up the plastic ureter, requiring more surgeries to clean away The Plug Up. (Interesting… Per Bellruth Naparstek’s “Invisible Heros,” PTSD can start up when a person is told they will have their 1st surgery. Walt’s did!!) BEWARE… PSEUDOMONOUS bacteria sits in the bottom of both bladder & kidneys – like a swamp waiting for mosquitos to breed & do their painful-plus potentially deadly deed!!
NEPHROSTOMY (KIDNEY) TUBE Every 8 weeks the neph tube is changed in Angiography. Usual procol:12 wks. But the pseudomonous bacteria apparently did not get the memo. Walt is the exception!! For safety sake, it should be mandatory to stay in hospital over night; saves pain +, $, labor +. Over-due treatments cost: 1st change cost 11 days in hospital. 2nd cost 19 days. Pain? Priceless!!!!!!!!!!!!!!
Weird, but since the kidney’s exit has grown closed & no longer attaches to his bladder, why did >>EACH<> Q’s <> IDEA << Will food-grade diatomacious earth would demolish pseudonomous. I just ordered it. Hopefully, it will dry up lil Pseudy-O as DE does fleas; it dries thus cracks their waxy shells then also dries their bods, too, & internal parasites. BARF!! Even dust the house, car, etc. Just don't get DE in damp areas: eye, nose, etc.
URINE RELATED? Walt has sadly quit volunteering as Quality Controller @ the local school for handicapped kids, as he seems to be a Morgellons carrier. I've been diagnosed & apparently have fibers in my urine, tho not blood. 1 of 2 cats seems to have symptoms, too. All 3 of us have passed kidney stones. Dr. Phil mentionned Dr. Eric Klein, Chief of Glickman Urology @ Cleve. Clinic – the whole new huge building – in 1 of 2 Morgellons' segments. Less than 2% of Dr's in World know of "IT," & 1/2 will tell "sufferer's" to see acouple of psychiatrists. MgD manifests itself in many ways, ie, do you itch & scratch sooo much you loose sleep or get infections? Have you picked lil black cotton-like fibers out of your skin? If so, www: colored morgellons photos, morgellons symptoms, cherokeechas.org = the main NON gov't site.
Walt greatly misses volunteering with the kids. So he hopes to find solutionS – especially for the painS, so this will relieve the little boy crushed by the car that jumped the curb!!!!!! Days have turned into nights, again, thanks to the painS, etc. Would appreciate prayers, as we do for y'all!!! Lily, for Walt especially ZZZZZZZZZzzzzzz
having spc done in 2 weeks. alittle nervous, thanks for all the different comments. any women who would be willing to share any info would be greatly appreciated.
I am currently 26 female with nerogenic bladder had trouble with bladder back up as a young child, I am now since getting utis that won’t go away guessing since er cultures show bactirial infection give me levaquuinn find out 2 days later that and cipro aren’t strong enough not even 1 month in the hospital on iv antibotics worked I love my spc but hate not able to wear sandles or dresses or shorts. And also makes me feel very inscaure going out I might leak or someone see my tube. How do all you guys and women get through alll these silly fears? I’m more afraid of the antibotics not working then dresses this has been going on for 2 months. And I am extramly clean with leg bag night bag and soma site.. any ideas? Thank you all.
Hi Marie: As a guy I can only imagine how difficult it must be for you to watch other girls your age running around in bikini’s and sandals. To see tight clothes you really like and pass by lingerie shops thinking ‘I wish.’ Don’t give up, there is something for everyone. I love to wear jeans but they are hard to get on and sitting on the seams and rivets mark me. So my mum and a friend have made most of the pants I wear regularly. You could make a sleve of material to slip over your tube hiding it from plain sight a bit more. Make several color coordinated to suit your wardrobe! By stoma do you mean a supra pubic type urinary stoma where you only insert a catheter to drain your bladder frequently? A month on IV antibiotics is not a good thing. The best things to reduce urinary tract infections are listed in the article. Have you tried them all including something like Hiprex and silver coated catheters?
EUREKA, GREAHAM!! Rx this: CHLORDIAZEPOXIDE-CLIDINIUM 5 DO NOT USE DR. NOBLE’S NAME. “It SHOULD ELIMINATE the need for pain supresants &/or narcotics of ANY kind.” YEAH !!!! Walt & I thank ALL OF YOU for your input & Eing suggestions that are worth a try starting with relieving pressure by wearing ELASTIC WAIST BANDS… HERE'S TO A PAIN-FREE LIFE FOR ALL OF US & ELIMINATING THE TERM SPers !!!! Lily
Thanks to Graham, Mad Spaz Club members have been of more help when it some to the pain!! And "urology professionals" now have more information to recommend to "SP patients!! Graham, how about a just plain SP website referring SPers to your amazing Mad Spaz Club?!! It's a great sign that Mad Spaz is the 1st to appear when one Googles SP, for the club is the most useful – by so than urology departments in 4 hospitals Walt's experienced AND EVERYBODYS' INFORMATON IS HIGHLY DEPENDABLE !!!!!
Which reminds me to thank the caregiving wife in Autralia about "hitting the floor." No matter one's age, SEPSIS is definitely an emergency situation. The 2nd time Walt experienced sepris, thanks to our lil ole Aussie, I told EMS "He has S E P S I S & HIT THE FLOOR !!!! EMS called ahead to ER, who correctly said the same to Admitting, so the Dr. assumed (& we all know how to spelled assumed, right?!!] that's what should continue to be charted. This time the antibiotic IV was plugged in immediately – eliminateing life-threating timing !!!! KUDOS TO "JUST A WIFE IN AUSTRALIA !!!!
The BUT is… Dr. Noble was the 1st surgeon to install Walt's 1st SP tube about a decade ago. The lil devils gave Walt the referred pain to the end of the penis – like a crockett mallet. Walt
Hello all, I have read alot, and now feel a little out of place here as I am copmpletely ambulatory… but here goes:
I have had incontinence issues most of my life (I am 38). I wore diapers or other absorbant products for the better part of my life. A few years ago an aquaintance suggested a foley cath. I was uninsured, so I researched it, figured I could do it myself and ordered the supplies. ( I do not recommend self treatment, but without insurance you do what ya gotta do.. and for me it worked out). My girlfriend has changed it for me monthly until this past month as we split up. I have done it myself twice now (1st time and last time), and although I am not as skilled as she, I am successful.
I have been on it it for 18 months now. It was life changing! I never felt more dignified, especially after I switched from a leg bag to a Rusch Belly Bag. This bag allows me to do ANYTHING anyone else can do… I snorkel, bike, run, work, cut firewood, etc. It has been working well, except the occasional UTI, which usually stems from inadaquete fluid intake and almost always after sex. It seems, like the semen causes issues, as it flows both into the bladder and out, and perhaps gives a path for bacteria?
So, I started to wonder about SPC… My worries are… will it work with the Belly Bag. Rusch advertises that it can be used with SPC, but is there anyone with experiences? also. I am a truck driver, and I am very active and wonder about the activity levels posing problems… lifting heavy objects etc… Also, a hernia would void my medical certification, although the Indwelling Cath is fine with my certifying physician, so I wonder is there situations where the SPC causes hernia? Also, I watched a video of the procedure on youtube, so thought it was an outpatient procedure, and I could just go back to work again… So I guess my main question is, should I bother discussing with a doctor (I am now insured.. not gonna do it myself lol) or just keep doing what works pretty well and forget about it? It would sure be nice to have the tube NOT in my penis, but I can deal if I have to. I sure am not going back to diapers! Thanks for any input.
marie… I just read your post… I use the Rusch Belly Bag, but have a urethral indwelling foley, although the company claims it will work for a SPC. It is essentially a vinyl “fanny pack” that you wear around your waste over your underwear, under your clothing. it is INVISIBLE unless nearly full even under (mens) swimwear. skirts would definately be no problem, a swimsuit with the built in skirt thingy would almost certainly hide it. They arent cheap… $20 and last about a month, but SOOO worth it. you can jump on a trampoline with one and no one would be the wiser.
Hi Craig: It’s called Retrograde Ejaculation (RE) and it can contribute to increased Urinary Tract Infections (UTI). Permanent Indwelling Catheters (IDC) over time often weaken the bladders sphinctor muscle, it’s this weakness that allows semen, which would normally be ejaculated via the urethra, to be redirected to the urinary bladder. Having a Super Pubic Catheter (SPC) may reduce the incidence of RE and UTI and would definately give you greater sexual freedom and enjoyment. I believe an SPC works with many types of belly bags – Rusch should be fine. Hernia caused by SPC are very rare. Lifting running etc would be much the same event as with IDC.
My concern is sensation. I know what completely ambulatory means but if you are completely able-bodied why haven’t you always changed it yourself? With full sensation the SPC may be a constant annoyance to you. IDC brings some pain and discomfort in either sex, and many fully able-bodied people use SPC with minimal pain and discomfort too, but for some it’s unbearable. Either way an SPC is easily reversible, so I’d say go for it Craig. Sorry to hear about your girlfriend mate, it’s tough.
Craig, I think you will find an SPC is preferable over an IPC. I did. From my experience I would recommend “Bladder Irrigation” after every ejaculation. Bladder irrigation is quick and easy and can be done with SPC or IDC. I have been irrigating or washing my bladder because of sediment. The VA does not offer sexual help unless you are married. I too have Retrograde Ejaculation and am ambulatory but do not have your strength… so I use a wheelchair most of the time. After reading so many good thing about the Belly Bag… I suppose I should give it a try.
Hi grahem and all the team.
Its been a long while since i put a post on here only because things have been ongoing for my hubby, his still in and out of hospital still allergic to all antibiotics except merapenom. ok so he had a cystocopy and they found that he has a diverticulus bladder ive read abit about it but does anyone know anything about this.? he had that done and discharged from hospital 2 days later he was back as when he was trying to self cathertarise nothing was coming out. he had another uti which seems to be the same utis he has all the time proteus sp emberro efacaelis e-coli and pseaudomonas. not at all nice for him having all these. they have said its very risky to sort the diverticulus bladder out as they would have to make him a new uretha as well through plastic surgery he has a bladder 5 times the size of a male bladder the words were to him from the consultant/surgeon was its the biggest bladder they have ever seen.
so he was on iv 3 times a day for 5 days and discharged again 5 days later back in again same problem couldnt pee his urine smelt really bad when it did come out, so monday just gone he has had an operation on his prostate (turp operation) they took some tissues away from the prostate and sent them for analasys and bored the protate tube out as they say it was very tight which could have been stopping the urine from coming out. his still on iv as he has e-coli quite bad but that didnt stop them doing the op. they also said to him with this op he might be able to pee again on his own (not something to say to someone who has been cathertarizing for 10 years) they built his hopes up alot and it didnt work he managed to get 50ml out his self so he was very disheartened. so was i. he now has an idc in for 2 weeks to give him a break from self cathertarizing as its quite sore down there at the moment. i really have tried everything for him and now feel useless as it doesnt seem to be getting better. i hope everyone is ok and wont leave it to long next time. :-)
Thanks for your input.
Graham, She offered to change it for me as she had some experience years ago in a care facility, and it turned out she was better and quicker than me. I am able to change it, but for some reason I find its about the same as pushing a piece of cooked spaghetti noodle in.. lol… I did pretty good this past time, no urethral trauma… As for sensation, the cath does not bother me in the least. I have no pain of any sort, except for one time I yanked it a good one accidentally…. I was using a night bag in the truck, hooked to my seat, and got out of the truck, forgetting to hook up to the belly bag first… it was sort of like bungy jumping out of my truck with the bungy cord attatched to.. well you get the idea!
ok, one question I didnt ask, and what actually brought me to this site, so I guess the answer is here somewhere, although I didnt find it…. I enjoy Scuba diving (shallow waters 60′ and less) Will I still be able to do this?
Mike: I never thought about irrigating… I have the supplies, but have never used them… I never had a reason to… at least I didnt know I did… I drink alot of coffee and water when my pot of coffee is gone, since having the cath, as I find it keeps my urine flowing well, sediment free mostly, and overall good bladder health.
The cath was a God-send for me, but it was 10 fold better after I started using a belly bag… the leg bag would fall and disconnect, cause pain from the straps, etc etc… The kind of cool thing about the belly bag is that I can actually use a mens room urinal, with no one noticing, as the valve is in a precise placement. for a wheel chair user it might not be as earth shaking of an improvement, except for perhaps swimming or wearing shorts, but I guess that would depend on the individual.
Since I recently got insurance after about 4 years without, I will need to schedule an appointment with a General Practice Dr first I suppose, and then get a referral to a Urologist… or would my GP maybe be able to handle it?
Thanks for the quick response! I dont get back home until Oct. 28th and I have a busy 4 days at home, then back on the road, so I am not sure when I will get all this done… hopefully this year!
Hi Craig, You can scuba dive with an SPC, unplug your drainage device and block the catheter end by pushing a stint (cone shapped stopper or similar) in. Back on May 21st I answered Adrian: You can swim snorkel and scuba dive with a supra pubic catheter. If you are diving deeper than five meters I suggest you tape over the site and catheter down to your stomach completely. Water pressure at 3-4 meters starts to compress the catheter balloon. Tape will keep it in place and may prevent water bipassing (pushing past the catheter) into your bladder. Also be aware at depths in excess of 7-8 meters the entire catheter will start to compress. Restrict fluid intake as much as possible one hour prior to swimming snorkeling or scuba diving.
There’s roughly 3′ in a meter so 60′ = 20m. That is pretty deep. It would be great if you grab a catheter inflate the balloon, block the ends and take it down with you to observe what happens. I’d love if you could report your findings here. An SPC is not much different to IDC when scuba diving.
Hi all its me again. Thanks for the great ideas to hide the spc I am also still fighting utis and doctor called today confused as heck, I now have two types of uti at once is this even medically possible because my doctor says its extreamly rare. Anyone have the same issues? Thnks again Graham such a great info site.
Marie; thank-you for your kind words. Yes multiple infections can happen at once and that often makes them hard to treat. For example, if you have what is considered a low grade urinary tract infection as well as a nasty pseudomonas strain. The low grade infection can be treated with a general antibiotic while the pseudomonas requires a more specific antibiotic. The specific may not kill the low grade and the low grade will not kill the specific. Furthermore it is generally not advised to take any two antibiotics concurrently. Keeping in mind, I have no medical qualifications just vast experience, most doctors will try to knock off the nasty bug first.
Hi, I had my spc done on oct. 1st, the bladder spasms are terrible (I take enablex for that) my problem is terrible leakage at the site maybe once a day I get soaked, where I have to change my shirt and pants, Is this a problem or something that will stop?
Lynn: I just had my SPC re-sited on thursday and it does not leak urine, well only a trickle at most when exerting – speedbumps, leaning down head between knees. Neither did my first SPC installation 16 years ago leak volumes. After 3-4 weeks (now Oct 24th) it certainly should not be leaking or bypassing urine. Constant contact with urine can result in painfull urea burns and trying to heal in a damp unsterile environment.. that’s not good hun. I strongly suggest you go back and ask them to investigate or even better consult a second professional opinion. Quite often when the supra pubic catheter proceedure is performed they put one stitch on the skin right beside the catheter to speed healing a tight seal. That may be all you require.
Graham, my doctor is only gonna treat this low grade infection. Yet I am getting kidney pain and my spc burns/ bladder too. He thinks the rare infections are benifical. And make the good bacteria stay in check…..But I am getting a fever and even on levequin I’m still with pain/symptoms. He seees me soon, if the 2 of the utis stay I will have to go in 5 days for shots can’t miss a day so some without a car because of my power chair is a pain in the butt. Take care
Hello! Praise God there is a place to speak to others with this situatio. My Mom has had an SPC for about a year now and we have had nothing but struggles from the doc not getting her allergy to anything but 100% silicone catheters to them saying she shouldn’t medicate for a uti to a foul odor of urine ALL the time. This is what brings me searching the net for help. Thanks in advance for your help.
My Mom is not suffering a spinal cord injury but had terrible incontinence that was both disheartening and embarassing. Her urologist told her about an SPC and she dove in head first without asking too many questions. After surgery she had terrible trouble healing because of her diabetes and weight problem. The site would not heal and the latex allergy caused the opening to widen. She now uses a large catheter to try to keep drainage from happening at the site.
When I am with her, the smell of urine is really foul and I am sooo sad for her because people are so cruel. Yet, not to her face. I see disgusted looks and whispers behind her back all the time. I am at wits end with this odor problem as it is so bad you needn’t be very close to smell it. She has about a three foot perimeter of odor. No one seems to have any answers for us here in our home town and they tell us to just accept it. I feel there must be something we can do!
Mom changes her clothes every day but because of her obesity she struggles to keep the leakage under control. We are considering a full urostomy but fear the fact it is irreversable. Can anyone help? I will look into the siver alloy catheters and possibly more frequent changing.
Thanks again1
Julie
Hi Graham, Went to my urologist, he changed the cath, switched med time around and I am thrilled to say I am now dry and the spasms are calming down, everything healing nicely. Thank you for your response. Your web site is so helpful…….
Thanks Marie and Lynn for the updates.
Julie: Stong odour is a common sign of a urinary tract infection, have a dotor test a sample. Another common cause of strong odor is concentrated urine. I can see why your Mom may feel reluctant to drink fluids but it will only compound problems. She should be drinking around 3 liters (6 1/2 pints) steadily over the day. My other initial thought is rather than larger guage catheter a stitch at the site to tighten the seal.
Hi guys, I had quite an experience at urology last month. The doc tried to put a scope in, it took a long time and a lot of force. While he was peeking around the scope jumped out of his control, he was unable to reinsert. My nurse put in a cath to preserve the site. Doc could not reinsert the scope. He left somewhat embarrassed and muttered something about we would try again in three months. My nurse was smiling, he said he saw the problem with my tube changes. He now waits on my bladder, removing between spasms replacing the same way. For all of you that successfully change your own and say it just takes longer, you already know what it took my medical team 2 years to figure out. My spasms are strong enough to eject a probe from a surgeons grip, it makes sense to wait for things to relax to slip a tube in or out. Last 2 changes have been pain free! I love my nurses.
hello I have mobility but had SPC inserted over a month ago as a permanent fix & have experienced few problems ,dressings still applied every few days & always a bit bloodied but no greeness. I have started removing leg bag and using a shut off valve in order to have a shower or go for a short walk, then reattach bag and drain. I used to enjoy a social drink- lager usually in local bar at weekend and my question is would I be safe to remove bag and drink say two pints /litre and then drain when returning home ? Or would bladder not take this ? advice will be appreciated
Also are there any garments to prevent pulls as opposed to tapes on my stomach which cause soreness discolouring etc.
Hello Brian, Your situation is much like mine. In the past I would remove leg bag, plug the SPC and then time myself at home when I began to have urges (spasms). I found I can go about one hour then I need to be close to a toilet. If I drink caffeine or alcoholic I need the leg bag. When I mentioned to the doctor I was plugging the SPC she did not approve. She was concerned urine could be forced back up to the kidneys. I have some feeling and know when it is time to drain. Therefore, I continue to make short outings without the leg bag.
I too don’t like the stick-on stabilization devices and the leg straps slide down. At night I use my pajama strings to tie the SPC close. During the day I just try to be careful.
Hi Graham and fellow SPC users! Its been a while since i posted. Many cath changes since. The soaked sheets have stopped. I know more about pushing the bellow end up as far as it can go. Still having repeated utis. every mth at hanging time. Nurse does it 2 times then Dr. It is really the most painful process i have ever gone thru. I am usually infected at the time. I know the Dr. will start changing sooner and i could hardly stand that. I think i could do it myself and slower not pulling against the pain and then bleeding and leaking and spasming. Before spc i only had to push to pee. but no pain, no mess, no fuss. but Doc feels it was going back up to kidneys and would damage them. Believe me i was willing to take that risk twice. Why can’t they use a flouroscope to see if the cath is stuck to the bladder and seated right? I hear a lot of similar issues on here but the pain of changing the spc doesn’t seem to be a factor with most. It is like ripping my guts out. ! The Detrol for spasm doesn’t work for me. am i really going to have to tell the Dr. what he should be trying? Bless you all and thanks for the ear. Suggestions always welcome. I pray for your continued health Graham, as you are such a blessing.
Thanks again for helping out here Mike I appreciate it mate. I agree for Brian a valve would be fine for short durations. The max average male bladder volume is around 600ml and females 450ml. Depending how fast you drink 1000ml (1 litre) might be pushing things a bit. Perhaps you could empty your bladder in a cubicle to avoid people seeing Brian? I too don’t use a stat-lock or other stick-on devices but they are great for some. One of my carers brought me some wheelchair clothing brochures I’ll have another look through but don’t recall seeing anything like what Brian wants. I suggest having something tailor made.
Ronna: Nice to hear from you and thank-you for your kind thoughts hun. It would be nice if Doctors and Nurses were more patient (ironic isn’t it) but as they say time is money. You have every right to demand better treatment. They can do as you suggest. Cystoscopy is the use of a scope (cystoscope) passed through the penis or vagina to examine the bladder. I had this procedure done recently confirming my catheter tip was poking into my right ureter preventing that kidney from draining effectively. They re-sited my supra pubic catheter moving it upward an inch or so and I’m slowly feeling better. I’ll make an update about it on the article when I can.
Hi thanks for your helpful responses Mike & Graham which I am taking onboard , SPC is a life changing experience for me but I appreciate my problems are minor compared to most users.
I will also look at possibility of belly bag you previously discussed as this seems less obtrusive/awkward from what you say than my leg bags . Further info appreciated.
Thanks again for your help.
Hey just wanting to update, my super bug was finally fixed now just have a minor spc. Infection, I. Have my caregiver change my bardix laytex. Infection control catheter every 3 weeks and clean all bags once a week with vinager and clean the tips with an medicated wipes and take cranberry pills to prevent utis, for spasms I might suggest detrpan, or any other antispasmic for the bladder I take urell or predium for changes. Along with a bladder spasm drug really eases the pain and my dr recomeds a 1 day dose of prebotics after the change.
Julie: the smell your mother is expriencing IS NOT normal. There should be no smell at all inless she might have a site infection, have the dr do a site swab. If they can’t help her she can always go higher up and report what the doctor isn’t helping her or get a new uroligist if things aren’t getting any better, best wishes to all and a happy new year.
Hey just want you guys to know how helpful your website has been to me. I have not posted alot, but have gotten many answers just by reading all the responses. I will be having my surgery to repair my urethra Thursday Dec.2. Ive only had to have my spc for 2 year and 8 months, so at the least I am excited about getting it fixed, but also a little nervous too. I’m sure the first couple of weeks are going to suck, but I know that I can handle it. Again thank you all for what you do, you have been a great help to me and many others. Will be checking back often, and will update you all about how my surgery goes.
Thanks Shawn, hope all goes well with your surgery. :)
Marie: To disinfect my bags I buy Lysol Disinfectant with Bleach in the spray bottles. Each time (daily) I remove the bag, empty and spray about seven pumps into the tube. Then replace cap to keep air out. I use a combination of vinegar and sterile water to irrigate the bladder. I agree, foul smell is a good indicator of infection.
Shawn: Wishing you the best with your surgery on Thursday. I agree, this is a great site. Look forward to hearing from you.
Lysol is that safe to use in the bags? I used bleach on both bags and I was soaked they started leaking. I know water it down but it didn’t work which is why I stick with water down vinger. It seems to do the trick, I love my spc, the only down side is infections off. And on. And think I’m getting ready for my 3 year scope since I’ve had mine 5 years now. But its better then foley catheter. I also have pain in the site so I might have to have the site redone. Good luck all hope you enjoy the spc as much as I do. Happy holidays to all and good health and a happy 2011 new years!
i have just had one fitted (2days ago) and hey told me nothing about how to look after it this site is fantastic thank you i dont think i would of been able to read about sex and how it effects it anywhere else and thats what i was worried about! thank you for sharing your ideas and thoughts
hi iv had a suprapubic catheter fitted on the 3rd november, iv had a infection now that is cleared up, can some one tell me why im getting stinging sensation in my willy, as it has been now 5 weeks since op any help will be gratefull recived thnks
Hi everyone, I tried to post before but it didn’t go through. I’ll try it again. Alittle over a week ago my 85 yo mother had a supra pubic put into her bladder for a second time. The first time something happened when the doctor changed it after a month. He used a 18 instead of the 16 she already had. She had very little urine going into the tube and they had to do the procedure over again. Now it’s been aliittle over a week. She’s is confined to a wheelchair and when I get her up in the morning she is wet in her depends. It’s not coming from the site, it’s coming from her normal way of going. There is full urine passing through the tube not like before. I was wondering if anyone else has a problem not being dry all the time while having one of these supra pubiic? Any help will be appreciated. Thanks, Lori
Hi Lori: When our bladder sphincter becomes weak we leak out through the urethra even with a supra pubic catheter in place. I have this problem, although minor. My leakage is not enough to cause a wet spot but my shorts are often moist. I often wear a pad. It sounds as if your mother’s situation is much more serious. I wish her the best. Make sure she gets the diaper changed when needed. Urine will cause the skin to break down.
Thank you for responding. I will do that.
I just wanted to ask, how long does a spc site infection clear? I have to use gaze now because everytime I clean the site, I now bleed and am getting foul smell… and a lot of green slimy stuff that is usuallly covered with pinkish blood every morning, my caregiver did spc change and was worried cuse when it came out it bleed a lot. He was afraid he put thr catheter in wrong but still figghtinh this spc infection, any idea anyone when the site wil stop bleedig and green discharge?
Hi Lori: I’m sorry, I did not mean to sound so negative. Perhaps your mother’s problem is minor. Could the tubing be getting kinked somewhere? Is the collection bag located low enough? Could sediment be blocking the eyes of the catheter?
Hi Marie: I have not experienced this. I look forward to other responses.
Hey guys, well I did not have my surgery yet, they just ran some tests to see what it was going to take to repair everything. The plan now is to have it in January, so I guess we will wait and see. My doctor said there is a doctor in London who has made great discoveries for ppl with spc’s, and that alot of what he is going to do to me, he has learned form this doctors work. So, I just cross my fingers and hope for the best. Thanks everyone for the well wishes.
Marie: I gather you mean a site infection. I suggest you go see a doctor. Green, bloody and smelly are significant symptoms of severe infection. Typically these will not heal themselves, antibiotics is the best course. As it has started bleeding, it might also be a good idea to have an ultrasound to ensure your catheter is positioned correctly.
Mike: Thanks again for your helpful advice here. Much appreciated.
Shawn: What is the name of the London doctor? I’d like to research and learn more from him.
I saw my doctor and had a swab test in Nov, was on antibotics for seven days. And aparently, he doesn’t want to over use antibotics and suggested neosporen. Am looking to find a new uroglist because I know there’s. An infection. Thanks for all the kind suggestions Graham.
Another question, I apolgize, other then catheterizing from the suprapubic site, using a catheter only when urinating, stright cath, is there any option to get rid of the catheter I’ve had for 5 years is there a surgery, I’ve read about a stoma, in the stomach but that means having no bladder I’ve. Read, and the other was to enlarge a bladder since mine is never clamed I’m thinking about needing a larger bladdder, my. Uro spoke of this once by using a part of the colon. Sorry to go abit into rambling. I will be seeing a new uro univsity dr and need some ideas I’m annoyed by the thought of having a catheter long term. Thanks, if anyone knows please share.
Marie: If you have adequate hand function you can pass a catheter via the vagina or penis to frequently drain the bladder, it’s called intermittent catheterization. You can then remove the old supra pubic catheter and cover the site, after 5 years it should take about 6-8 weeks to totally heal over. A stoma is similar only not through vagina, you frequently pass a catheter through a sphincter on your tummy to drain the bladder, which if needed can made from bowel tissue, the procedure is called a sphincterotomy. Knowing your full case history the best person to discuss all your possible options with is your urologist. Typically they will not operate until you are clear of infection.
I am getting botox for Christmas! It wont show, they are going to inject into the back of my bladder wall. The bladder spasms are more like labor contractions, they say this should help. I do well laying flat, but I want to get up in my chair, go places and do things. Has anyone else had botox for this reason?
thankyou again to actually cathertize myself isn’t possible due to a car accident I had some damage to neves farther then I had before so I will ask my uro for a ultrasound to see if the catheter is in the bladder. I don’t feel when I need to urinate so my bladder gets over extended and feel flu like and get a really high fiver that don’t pass I’ve had my spc in and out a few times so I know how hard it would be dealing with all that and I have small children they mostly see mommy in a chair or bed so I am going to be seeing a neroligist and hope something can be done cordnating care between a few drs might come up with a plan I can type but typing takes a long time so I. Hope they find which neve is effecting me
hi iv had a supapubic catheter fitted had my first change on the 23 dec im not getting on with it can some one plz give me some information if i have my supapubic completely removed will i be able to pee out my penis again like i did before i had it put in as im worried i wont be able to any information will be gratefull thnks andy hope you all had good xmas and a good new yr
Hi everyone! I wanted to share a health discovery I made recently that might be of benefit to anyone who has to take antibiotics or other meds for infections. Due to a chronic medical condition I have to take antibiotics every day…and most likely this will be a life-long prescription. For a number of years I have suffered painful digestive problems: diarrhea, cramps, weakness due to dehydration, and borderline malnutrition. I could not absorb any nutrients from food or nutritional supplements. I could eat a nice healthy breakfast and within two hours I would experience many of the symptoms described above. I saw a brief article in a health/lifestyle journal which mentioned a possible solution for digestive problems experienced by people who take antibiotics frequently for UTIs and other types of infections. Some early research has discovered that taking pre-biotic supplements appears to help replenish the good bacteria in the digestive system. After using pre-biotics for about three weeks, I have not experienced any digestive problems and I am feeling so much better. I take the supplement at least three times a day with meals. That being said, I’m not a doctor, and am just sharing my own experience. Check with your doctor first, but speaking for myself, taking antibiotics for years has wiped out my digestive system and taking pre-biotics has really helped me. Hope this helps anyone who has to take meds for infections!
Andy: If you remove the catheter your bladder will seal off quickly, often in as little as a few minutes. The site on your stomach takes longer generally 6-8 weeks. Times will vary according to how long you had your supra pubic catheter in place (not long in your case) and your health/age. Restrict activity and keep the site dry sterile and covered until it heals. You must consult your doctor first, an spc is not something prescribed for fun. You may not be able to resume your previous method.
hi graham thnks for the information are you saying i wont be able to pee threw my penis like i did before if i have the spc out as im worried i wont be able to many thnks andy
Andy: Only your doctor can answer that. “Not getting on with it” does not tell us much. I can only imagine you were given a supra pubic catheter because you were having trouble with your old method. So to go back to your old methed may just be going back to more problems. Best thing you can do is consult with your doctor.
Andy: Graham is much too smart to try to diagnose any of us or predict what will happen with very limited information. I think you may be dealing with referred pain. When nerves are damaged sometimes they try to find new pathways. When I had my spc put in I had very little site pain. However, I had increased sensation (burning & stinging) in the end of my penis. Gabapentin makes this bearable. As for voiding through your penis…I would think by plugging the catheter it would give you your answer. Andy, I have no medical training but wish you the best. I agree with Graham…Best thing you can do is consult with your doctor.
Deb: Good info. I would add Yogurt.
Laurie: Have you got the botox yet?
Mike: Thanks for the reminder on adding yogurt to the menu! I meant to include that, but my comment was starting to ramble on. Personally, I try to have at least one serving a day. To save money and improve my diet I buy a large container of organic, plain yogurt; then I scoop up single servings in small tupperware containers with fresh fruit. Tastes much better than the small containers from store. And easy to grab and go!
Also, Mike, if I may ask a personal question regarding the Gabapentin which you have been prescribed…do you experience any shaking or trembling of your hands and/or arms? Sometimes there is a sudden jerking of the upper limbs. Just wondering, as I have seen this side effect and am wondering if others have experienced this problem. Thanks!
Yes, Deb, I have the symptoms you describe. There have been times when I did not just spill my coffee but throw it because of arms jerk. Recently I have had several test… MRIs of C, T & L… EMG & NCS. They found several problems but nothing to account for arms jerking. I’m on 4800mg Gabapentin daily and feel this is very likely a side effect of Gabapentin.
I am now dealing with Shingles.
Mike: That jerking is totally a side effect from the Gabapentin! I work with some one who takes Gabapentin as well and he also experiences the classic “coffee toss” as well as cell phones, pencils, and anything else which can be held in the hand. Unfortunately, this side effect manifests even at far lower dosage amounts; so reducing your dosage won’t provide any relief. I did come up with some solutions to make life a little easier: coffee containers with tight lids, leashes on phones and other small items, etc. It’s still annoying.
Sorry to hear about the shingles – a few years ago I had shingles myself. It was so uncomfortable, and I found it really increased my level of grouchiness! But that’s just me!
I just want to thank everyone for the advice given on this site! Graham you have started something that I think is just awesome. I wish I would have found this when I first got my catheters, it has answered so many questions that I had! I am 26 yrs old, and 2 months ago I was in an auto-accident that fractured my pelvis in multiple places, which in turn ruptured my colon, bladder, and tore my urethra all the way down; sounds similar to the story that Joshua Lee went through last year. I ended up with a supra pubic catheter, a foley catheter, and 2 nephrostomy catheters. I’ve got tubes coming out all over the place! I commend all of ya’ll that change your own tubing; I could never do it myself. My urologist tried changing my spc in his office the first time and I suffered a severe anxiety attack… just the thought of feeling the tube moving in my belly freaks me out to the point of hyperventilating! He also tried to change my nephrostomy tubes with sedation only, unfortunately also resulting in a sever anxiety attack. They couldn’t get me enough sedation to calm me down and do the procedure. I now have to be given general anesthesia to change any of them. The good news is I am able to walk again, last week I had my foley catheter removed, they changed my spc, and found out the damage on my urethra is fixable. I am scheduled for surgery the first week in Feb to hopefully reconstruct my urethra to working order once again. He is hopeful that I will only need the catheters for a matter of weeks after that.
Now that I wrote you a short novel about my story, here is my question:
Since my foley was removed, my suprapubic catheter is not draining as much as I would think it would. Granted most is drained with the nephrostomies before it even hits the bladder, but I am constantly feeling like I have a full bladder but cannot go the natural way nor is it draining in the spc. I spoke to my urologist this morning and he didn’t give me an answer or seem to concerned about it, but it is just uncomfortable and am wondering if anyone else has run into this issue?
Hi Tahra, I am very glad you are on the mend, you have a lot of work ahead. My body mind and spirit have different speeds and the most challenging part of managing my health is timing. You have a much more complex bladder issue than I have. Tell your care team everything and ask any and all question you have till you get an answer that makes sense to you. Polite and persistant at first, if you are not getting the info you need go with less polite and more persistant until you find the mix required to motivate the care provider.
The constant full pressure without relief I feel is due to bladder spasms. I take meds for that and have my tube changed every 14 days. I hydrate, keep the site clean and constantly keep watch for signs of infection. The discomfort boarders a real challenge during a contraction, I take slow deep breaths and they subside. Lasts weeks tube change my nurse grabbed a warmed bottle of saliene from the OR and irrigated with warm fluids after he placed the new tube. This is a good new part of our routine. I have been irrigating with warmed solution at home and have a new tool for my care. When your health is challenged you are forced to become an educated consumer on your self, what your needs are and how they should be met. Some of us have needs that require constant monitering and treatment adjustments. Wellness is worth working for, keep us posted on your progress.
Hi Mike- Santa gave all the botox to the moms that left homemade cookies. No word on when the VA will schedule my next procedure.
I use a night drainage bag–what causes it to turn a blue color after a couple of weeks of use?
hello graham and everyone
its been a while since coming on here. my hubbys still going through a right mess. in and out of hospital every other week now. he has an indwelling catheter in now, but he keeps getting spasms every half an hour and it takes his breath away and he says it feels like his pushing down on the catheter, do you know what that would be? could it be a rejection?
his in hospital at the moment as he has pseaudomonas auriginosa and e-coli his having iv antibiotic which is the only antibiotic his not allergic too all the others he cant have, he had a exploritory and they have found he has a very large diverticulus bladder which is causing alot of infection, they werent going to operate but have now spoke to us today after 14 months saying they may have to do the operation after all, the odds arent great for him as to 1 if it is successful or 2 if he is strong enough to make it through and the risk of infection afterwards because his allergic to all antibiotics. scary times. but if you could shine some light or someone that has the same thing with these spasms would be great because it really does hurt he said. i hope everyone is ok. :-) gemma
Josh: It’s called Purple Urine Bag Syndrome (PUBS). A fairly rare disorder where the plastic urinary catheter bag and tubing turn purple. PUBS is often associated with urinary tract infection. Once the UTI has been treated the discoloration of the urine bag due to the presence of indigo and indirubin pigments should cease.
Gemma: The urge to urinate and strong spasm are classic symptoms of a common condition amongst tetraplegics known as an overactive bladder. Most find relief through use of conventional medicines that specifically target the bladder, Oxybutynin (Ditropan), Tolterodine (Detrol, Detrol LA), Solifenacin (VESIcare), Darifenacin (Enablex), Fesoterodine fumarate (Toviaz). Each drug has their own set side effects that often determine which one is best prescribed. Another more general antispasmodic drug Baclofen (Kemstro, Lioresal) can be used in conjunction if needed.
Graham, you amaze me. (PUBS) Well I now know the cause of purple and orange bags. My bags turn orange when I take Phenazopyridine. My everything turns orange, tears included. I don’t remember my color wheel, but the two conditions combined could be interesting.
anybody know any fertility clinics for me and my future husband to get pregnant. I did get my tubes tied but can do a reversal. What about him?
Hi Kelli, fertility questions are best answered on our “wheelchair sex after spinal cord injury” article. Use our search feature and please read the article in full. Male or female the success rate of tied tube reversal is much the same as in the general population who have had their tubes tied. If you need more detailed info please ask.
how many times can a bedside drainage bag be reused? who do u suggest buying them from. I know there are night drainage bottles, but I would prefer a bag. Please advise==Thank u.
As a long term subscriber Josh you may recall we’ve covered this before so I’ll put in bullet points. Urinary drainage bags come in two (2) basic forms, overnight and long term.
Overnight: Termed overnight for clinical reasons (hospital use) the problems associated with multiple patients drainage bags soaking in one sterilizing solution are many. It’s cheaper to replace than spend man-hours tagging and cleaning used bags. In a home environment overnight drainage bags can be reused several times depending on plastic quality, basic drain bags with no tap can last 3 days or more. Plastic only being able to be bent a certain number of times before it cracks accelerated by the sterilization process.
Long Term: The thicker the plastic the more robust. Leg bags are made from polymers including rubber compounds designed with one way valves flexible enough in a clinical environment for at least three months. Ideal for supra pubic catheter users requiring a closed bladder drainage system to prevent infection. Sturdy drainbags with a tap and legbags can be reused for three months to several years respectively.
I`m having trouble with my leg bag—when about half full it slides down my leg-no matter how tight I secure the straps–are there straps on the market to hold it in position without slipping?
Will the CATH-SECURE Dual Tab be as effective with a Supra Pubic Catheter as the foley I now have??? Tuesday is the big day………
Josh; you may just need to buy new straps. Other than sticky stat-lock or tapes perhaps a garter belt will help.
Murray; It should be the same as it is currently, only the position changes a few inches.
hey-I have questions. My husband just had a SPC inserted in Dec. Things have been going okay. He has had a couple of UTI’s since the surgery. Now he is home from the hospital and is finding a huge urge to go naturally through his penis and is. This can’t be right! Dr. says fight the urge. But tonight he has gone at least three times. Did he have the right procedure? His initial injury was C3 -C5 compression. Not complete. Surgery was decompression and widening of brain stem. titanium replacing C3-C6.
Shamahoney; I moved your question here so we can better answer you. Sounds like your husband is experiencing what’s called an overactive bladder. New to Supra Pubic Catheters the urge to void is common and can be eased with use of drugs such as Ditropan, Enablex, etc as explained in our article above. The fact that hubby does actually void is of some concern. I suggest an ultrasound or similar to check 1. the catheter eyelets are free draining and not blocking 2. the bladder size is adequate eg +300 ml and 3. the catheter is correctly positioned.
What is correct position of catheter? Last year I visited my urologist and at the end of the visit we agreed to put in a SPC. Then he asked to let me look again. I pulled down my pants as he sat and just looked for a few moments. Then he commented he was just looking where to position the catheter. I have had no problems for nearly a year now. Tomorrow I have my annual physical with ultra sound of bladder at a different hospital. I wish I had the right questions to ask about correct position. Anyone with experience?
Hi Mike, there is no one universally correct postion. Everybody has a different body shape, bladder size, posture etc. After sixteen years with little problem my last annual checkup found the tip of the catheter was poking up my right ureter (tube from kidney to bladder) preventing the right kidney from draining properly. They re-sited my catheter an inch above the old site, now the catheter tip points down and on occassions pokes into my urethra (tube from bladder to penis/vagina). The primary reason for annual ultrasounds and abdominal xrays are to look for kidney, gall and bladder stones, other blockages, bladder size, and overall function.
For correct internal supra pubic catheter position the catheter balloon should rest against the bladder wall at the entry point and the catheter tip should be free to drain, not resting against the bladder wall or poking into any tubes.
Hi Graham, I have been having what they call bladder spasms. I call them labor pains, as a mother of 4 I remember. I also only drain well lying down. When sitting or with movement the spasms take on a life of their own. When my care giver lifts me from my bed or chair for transfer I flood my depends. I also have intense right flank pain as an added bonus for some of the spasms. My doc says I am well hydrated show no infection and am taking detrol LA every 12 hours. I am given morphine like M&M’s. I am on a wait list for botox injections in the back of the bladder wall. He feels I just have a sensitive bladder. I didn’t the first 2 years. After reading your last post I question my doc’s dx. Hopefully when they get me on the table they will notice placement. I will print your experience and have my nurse take a look. My nurse is awesome, my doc a rude stranger. My best to you all
Hi Laurie, good to hear from you hun. You are right to worry about not draining when sitting up. That defeats the purpose of a supra pubic tube. I’ll explain with example. An After Hours (AH) doctor came to my home recently and changed my catheter. Her technique was exactly as I teach it, except for one crucial step. When replacing the catheter I pinch it between fingers right at the site/stomach, deflate balloon, withdraw catheter. Hold the new catheter at exactly the same length as old + plus one inch. Insert the new catheter until fingers touch stomach, inflate balloon, release catheter. You should see the new catheter slide out an inch to rest against the bladder wall. This gives strong indication the new catheter is positioned in the bladder correctly.
My AH doctor had failed to take notice how much catheter was inserted in me. My carer the next morning held up an empty drain bag. As soon as we sat me up I could see the catheter was in way too far. With a gentle tug blood shot everywhere confirming the 10 cc balloon had been inflated in my urethra. I had the catheter positioned correctly in hospital, draining 918 ml (2 pt) from my bladder. I’ve said it many times, your kidneys do not like swimming in their own piss. Their job is to filter and expel urine, not soak in it. On the verge of renal failure (the #1 leading cause of death amongst quadriplegics pre 1960) I spent a week on IV’s fighting double kidney infections and severe blood loss.
You are following all the appropriate precautions Laurie, and while infection free at the moment, not draining 24×7 is risking infection and possibly acute renal failure. All I can think of right now for you is to ask about a cystoscopy. Under a general anesthetic a camera on a flexible lead is inserted the natural pathway allowing medics to observe the supra pubic catheter in bladder when laying flat and in seated positions. Depending what’s preventing drainage, botox is effective for around three months, otherwise you may need a more invasive permanent solution such as different catheter type, or re-site of SPC.
Exhaust all passive options first and don’t be afraid to ask for a second or even third medical opinion. As you know, I am not a doctor.
iv just had a supra pubic catheter fitted and wish i didnt because iv had nothing but pain since i had it in three week s ago i wonder if it cause an infection in the bladder can someone please let me know thankyou. i am so scared tho im only 35.
Hi Foxylady, infections can cause pain. Your doctor can test for and treat UTI. Keep in mind a new SPC can take 6 or more weeks to heal. As mentiond here alot, a numbing gel like Lidocaine or even a babies teething gel applied around the catheter insertion point may ease your discomfort. Hang in there, most find it settles down in time and if not don’t stress, it’s always reversible.
Graham .. I am Ronna’s daughter. I thought I would let you know that she is in the hospital with a severe kidney infection. They are doing blood cultures to make sure she is not sepsis. She has had the roughest time with the spc over the past and has even said toe she is sick and tired of being sick and tired. Her urologist sucks and set him straight today… he does not know it yet but we r finding a new one. Her resistance to the antibiotics is increasing.
She was on the phone 3 times with her urologist office this week and no real concern on their part. I encouraged her to go to the after hours emergency clinic.. they sent her to the er. Thank you so much for this forum… it has really helped her over this past year. I just thought I would share… probably more for me.. because I can not do anything… nothing to ease her pain.. her infections.. or her frustrastions. Thank you for listening.