Super Supra Pubic Catheters
I hear people say Super but it is Supra Pubic Catheter. I have had an SPC for 16 years now and it has mostly been super. There is not much first hand info on the net so I will share my personal experience. Supra pubic catheters are a method of bladder management. It is a fairly simple procedure usually performed under a general anesthetic.
An incision was made about three inches below the belly button and a small hole is poked in the bladder. At this point, a catheter is inserted. It is held inside the bladder by plugging a syringe onto the catheter port and inflating a 5 to 40cc balloon with sterile water. The syringe is unplugged and a drainage bag is connected to the catheter flange. Usually the site (incision point) is low enough to hide below your pants belt line. It took three weeks for my supra pubic catheters site to settle and stop bleeding. I no longer keep it covered with any type of dressing.
With supra pubic catheters you must always keep a catheter in place. Your bladder can heal very quickly. In as little as ten minutes without a catheter in, you may not be able to get one in. Your body treats a suprapubic catheter as a foreign object. Forming a tube from stomach wall to bladder. Always trying to expel the foreign object, the catheter site never totally heals. It will always require a little cleaning. We use an alcohol wipe each morning and night. I’d much rather my carer clean around the super pubic catheters site than the pointy end of business (I’ll call him Sarge). Especially when your primary carer is a family member.
Changing Supra Pubic Catheters
Silicone Foley supra pubic catheters like these above are good for three months. I change mine every two months. Even then it often requires a little tug to remove. Some rotate their supra pubic catheters frequently to keep them free from sticking. This can cause leakage so I don’t do it.
Sterilize all equipment and around the catheter site. Deflate the old catheter balloon by firmly plugging an empty 10 cc syringe onto the supra pubic catheters port and drawing back. Remove the catheter taking note of how far it was inserted. So then you will know how far to push the new one in. Lubricate and insert the new catheter, then inflate the balloon. It should slip back a little to rest against the bladder wall. Holding the syringe plunger depressed, remove it and plug a new clean drainage device onto catheter flange.
You might like to check our 10 step guide on changing supra pubic catheters.
We once pushed my catheter in to far, right through the bladder and half way out my urethra. When we inflated the balloon it ruptured my urethra. Sarge was wounded by friendly fire! I bled from the penis for three days. The same can happen if it’s not in far enough. A little bleeding is common after a change or trauma (yanking on the catheter) but any bleeding should stop quickly.
Plug a leg bag or whatever drainage receptacle you prefer. I use a 16fr gauge Silicone Foley catheter with a 4-Sure 2000 cc overnight drain bag in a cover slip hung up under my power wheelchair. The 4-Sure is emptied morning and night, changed weekly. The boys get jealous when we have a session at the pub. They run back and forth to the bathroom while I don’t need to go at all. Check and top up the amount of sterile water in the supra pubic catheters balloon monthly. Some osmosis can occur in time and you don’t want the catheter falling out when asleep.
Lifestyles Diet Flying Sex and Swimming
Drinking is essential with Supra Pubic Catheters. It’s recommended you drink at least 3 liters daily to keep sediment levels down and the catheter eyelets clear. A lower urinary pH can be of benefit in reducing sediment and bacteria causing UTI’s. Bacteria don’t like acidic urine. Some pH lowering drinks and those of general benefit to supra pubic catheters are; cranberry juice, coffee, naturally brewed beer, buttermilk, wine, green tea, colloidal silver, distilled and filtered water.
Diet is unrestricted. You can eat anything you like. Some foods that lower urinary pH and help to reduce urinary tract infection are; beef, berry juices, corn, corn silk, eggs, fermented milk products (yogurt), fish, fowl, goldenseal, grape seed extract, gravy, horsetail, marshmallow root, probiotics, sour cream and whole grains. Avoid processed foods and artificial sweeteners. Please keep in mind it is all about balance. A healthy pH range is between 6.5 and 8.0.
Flying is no problem though be aware silicone slightly expands at 20 000 ft. Some tell me they like to use a smaller gauge catheter on international flights. I have never tried this. I fear I would be soaked in pee before I even got on-board the plane. I have flown many times without making any changes to my daily use of SPC. I’ve been in gliders, stunt planes, across the country and on international flights. I’ve never had a problem. I do suggest reducing fluid intake. If you can’t, or the free booze is too tempting, ask the staff if you can pee in a bottle rather than trying to get to the bathroom.
Sex is the main reason I went for Super Pubic Catheters. How can I put this… Sarge is always battle ready, free to stand to attention at anytime. No having to fold an indwelling catheter back and cover with condom. No having to do a quick self catheter drain to prevent leaking pee during sex. I’m good to go anytime. Now I just need to find someone to have sex with! Haha. A friend tapes her supra pubic catheters down to her side during sex. It’s a good tip if you like it rough, your partner is worried about hurting you, or you or your partner are turned off by the sight of a suprapubic catheter. You can tape it down.
Swimming is not a problem. Disconnect your drainage device and press a stent (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 greater than 3x 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.
- Maki DG, Tambyah PA. Engineering out the risk of infection with urinary catheters. Emerging Infectious Diseases. 2001; 7:342-347.
- Karchmer TB, Giannetta ET, Muto CA, Strain BA, Farr BM. A randomized crossover study of silver-coated urinary catheters in hospitalized patients. Archives of Internal Medicine. 2000;160:3294-3298.
- Saint S, Veenstra DL, Sullivan SD, Chenoweth C, Fendrick AM. The potential clinical and economic benefits of silver alloy urinary catheters in preventing urinary tract infection. Archives of Internal Medicine. 2000; 160:2670-2675.
- Riley DK, Classen DC, Stevens LE, Burke JP. A large randomized clinical trial of a silver-impregnated urinary catheter: lack of efficacy and staphylococcal superinfection. The American Journal of Medicine. 1995;98:349-356.
- Newton T, Still JM, Law E. A comparison of the effect of early insertion of standard latex and silver-impregnated latex Foley catheters on urinary tract infections in burn patients. Infection Control and Hospital Epidemiology. 2002;23:217-218.
- Thomas L, Valainis G, Johnson J. A multi-site, cohort-matched trial of an anti infective urinary catheter. presented at Society for Healthcare Epidemiology of America (SHEA), April 7-9, 2002.
- Leape LL, Berwick DM, Bates DW. What practices will most improve patient safety? Evidence-based medicine meets patient safety. JAMA. 2002;288:501-507.
- Ahearn DG, Grace DT, Jennings MJ, Borazjani RN, Boles KJ, Rose LJ, Simmons RB, Ahanotu EN. Effects of Hydrogel/Silver Coatings on In Vitro Adhesion to Catheters of Bacteria Associated with Urinary Tract Infections. Current Microbiology. 2000;41:120-125.
- Liedberg H. Catheter induced urethral inflammatory reaction and urinary tract infection. An experimental and clinical study. Scandinavian Journal of Urology and Nephrology. 1989;Suppl. 124. BARDEX System with Anti-Infective Foley Catheter ®I.C.® 49629_0304-25.qxd 12/28/06 2:13 PM Page 1
My son has a TBI that effects his motor function. He is non-verbal. He responds by blinking his eyes. He had stones removed from his bladder and since this surgury he has horrible pain when he needs to urinate. The pain is so bad I put his foley back in. The foley causes his heart rate to climb causing him discomfort and to loose a great deal of weight. The dr wants to put in a SPC. I have learned so much reading your messages and want to thank you for the information. I have seen 3 different physicians in the last three months and I had more questions answered reading your responses then I got from all of them. I am still trying to find info on those patches, my son has a lot of mucas shreds that clog his cath condstantly. They are caused by the foreign cath. The blockages keep us from being able to take him fishing and to the park. They are so painful for him. I am affraid a SPC will have the same effect. He gets more than 3ltrs of water a day, cranberry, probiotics &yogert. My only other solution for him would be to straight cath every three hours during the day and put the foley in at night.
My question would be how painful is it to be cathed several times a day? I wish my son could answer these questions, since he can’t I would appreciate any input you can give me.
Thank You
Sincerely;
Will’s Mom
Hi Patti, unless there are underlying conditions, frequently passing a catheter CIC (Clean Intermittent Catheterization) causes nothing more than slight discomfort. An SPC (Supra Pubic Catheter) will most likely solve the elevated blood pressure problem. However as your boy has full sensation across his abdomen an SPC may cause more discomfort, or even pain at the catheter entry point (site), certainly in the first month, possibly long term.
That said many with full sensation live very happily with an SPC, including small children in a similar situation to yours. It’s an individual thing and obviously you know your boy much better than any of us. I look at it this way, CIC should not be painful but if you sense it is, and you go for an SPC only to find it’s worse, other than a small scar it’s fully reversible. You can put a Flip-Flow tap on a superpubic catheter, your boy could go fishing and play all he likes.
Graham,
Thank you for all the information, I guess I should of said that he can not move anything below his neck unless he is in pain. I was really scared to even try a SPC but I think it may be a better option for him. Being able to remove it so easily is a great thing to know. I also think it would be easier to keep the bacteria down. Getting feedback from people who actually have one makes all the difference.
Thanks Again
That’s great Patti. I understood what you meant by motor function, many with TBI and ABI have a compromised range of movement. My big concern is his level of sensation, or more accurately hyper-sensitivity. A topical numbing gel like lidocaine can ease pain (not to be used on open wounds). I think your doctor and you are right, SPC may be a better long term management option, and not just for Will but you as well Patti. Less stress and bladder management time means a better quality of life for you both. Please let us know how things turn out.
Another tip with catheters is to tape them down if the user is likely to accidently or purposely try to pull it out. Trial taping down for short periods and check skin after for blisters. I’ll also mention an SPC can be re-performed several times. I’m not sure if there’s a limit but imagine 4-6 times would not cause major problems. Mine has been re-positioned once and Laurie is about to have hers re-positioned.
Graham, I was injured 3.5 years ago. I had a Supra Pubic put in about 2 years ago but, I had to wear a condom catheter along with IT. I was urinating through my penis as well as through the Supra Pubic. I’m now wondering if the Supra Pubic was placed wrong. I have been using a Foley catheter for 2 years now, and truly hate it. Not only for sexual purposes but, I have regained sesitivity down there, and it’s uncomfortable. Do you think the Supra Pubic could have been placed at the wrong location in the bladder, and that’s why I was also urinating through my penis?
Hi Joe. Graham is more of an expert on tis subject but you could have an infection or not having bowel movements regularly can cause this. Now you have a female point of view.
Hi Joe, the whole point of a supra pubic catheter is to drain your bladder, no matter the function or dysfunction of your urinary system beyond that. For the fact it wasn’t fully draining yes, there was definitely something wrong. We can’t be sure if it was not positioned correctly, a shrunken bladder, sediment, or any number of things like those June mentioned. I take it you no longer have the SPC and use an indwelling Foley through your penis? I would have advised you to rule out the possible problems one-by-one before abandoning the SPC method. Sex is the second biggest pro SPC reason. If you are considering an SPC again I’d say go for it. As you know, it’s always reversible.
My dad is 82 and has had his supra cubic catheter for a year and a half and last week he has had a lot of blood in his urine and was in the ER twice last week first time they changed the cath two days later he went back and they irrigated him and flushed out many blood clots it cleared up for a couple of days but has blood in his urine again and his doctor doesn’t seem to think he needs to see him right away it will be two weeks by the time he goes in. The people in the ER also didn’t seem concerned. As i look on line things seem to be pointing to the kidneys. Am i over reacting or are the doctors under reacting.
Sandy, I’m no expert but I would say the doctors are not reacting. Blood in tiny amounts may be normal for some. But I myself would worry if it’s a lot. Maybe a different ER or a new doctor for a 2nd opinion would be my suggestion. Good luck and I hope your dad gets better soon.
Follow your instincts and get a second opinion! If you are not satisfied with the current state of play, go and see another doctor. It is your right to another opinion. Sometimes, we think Doctors know everything. But they are only human, and they don’t always know, thats why there are specialists. And sometimes, specialists may not always know either. If i were in your shoes, I would be following my instints until I felt confident in the decisions made. Our instincts are always best!!!
Hi everyone, the re-site went well. I have had no contractions or discomfort since the procedure. I am draining well and staying hydrated. If this had been the case 3 years ago, I may not have had any stories to tell. This site is located 3inches lower and to the right of mid-line. To say I am satisfied is a major understatement. My realistic friends say that’s nice, give it time
to heal before you report it as a success. What I do know is that when they sit me on the edge of my bed I don’t have to use all of my muscles to try to keep weight off sitting naturally, it has always brought sharp pains to the pelvic area,followed by unrelenting spasms. It’s early, but I am very happy.
Congrats Laurie. I pray everything stays good fot you!
I keep wetting myself. I have been on Oxybutynin for awhile, I quit taking it cause of the dry mouth it causes. Is this why I’m wetting myself? Any other idea’s of what will help, thanks, Nicole
My mom is 86 and post-polio. She’s been getting up 6 – 8 times a night and finally they have diagnosed her with urine retention. She has had a foley catheter for 2 weeks now and at the end of the week they are going to do some tests but the Dr. is recommending a SPC rather than continuing with the foley. Will she “leak” during the night with a SPC or will she be able to sleep without worry like we can now with with foley?
Thanks for the advice,
Mary
Grahm,
I have a Supra-pubic catheter, I keep wetting myself, what is causing this? Help…….
Thanks,
Nicole
Hi Mary. I’ve had my SPC for a year now and during the day you wear a leg bag which you empty as necessary and at night you use a larger bag hanging off the edge of the bed. The only time I ever had leakage was when I had a UTI. Your mom can sleep on a bed pad in case you’re worried about leakage. I place a towel on the floor under the bag just in case it’s defective & springs a leak. I’ve had 2 defective leg bags. Your mom should be able to sleep thru the night with no problems. The bag is large enough to hold a lot of liquid so no need to empty it until she gets up in the morning. The SPC is much better than a foley and more comfortable in my opinion.
Good luck to your mom. I’m sure we’d all like to know how she feels after a great night of sleep!!
Just got back from overseas, let me try to catch up with you guys.
Sandy: The locals here are right of course, mild infrequent bleeds are no cause for alarm. When bleeding persists seek medical attention. Any doctor worth his salt will welcome a second opinion. It’s unlikely your Dad is bleeding from his kidneys but the bladder itself. Look for a change in your father’s routine. Perhaps he is doing something lately that is pulling, poking, or causing unusual trauma to his bladder. A bladder ultrasound should go a long way toward solving his bleeds.
Laurie: Great to hear all is well and you are recovering.
Nicole: Yes stopping the Oxybutynin is probably why you are wetting. It’s a trade off. Which is worse, the dry mouth or wetting yourself? Some of the girls here report that Oxytrol patches cause less of a dry mouth but that may just be because the patches are a lower dose than tablets. Is that a current picture of you Nicole? Ask your mum or doctor about trying a different brand of Oxybutynin like Vesicare, Detrol, Enablex etc. to see if they stop the wetting with less dry mouth. Make sure you drink 3+ liters steadily over the day.
Mary: Yes it should solve any leaks and allow a full nights’ sleep.
Grahm,
Thanks, I also added a antibiotic I found in my medicine container added the Oxybutynin back, bladder leakage has stopped. No that’s not a picture of me, lol. That’s my 4 yr. old McKenna :)
Hey guys n Dolls, long time! Ive had my cath changed a cpl of times now, last one i had to travel 6hrs for and suck on a heap of happy gas! FUN! Hopefully the local can do it here in 6 wks. Im on trimeth AGAIN! keep getting infection in my bladder, excites the the valve a little too, awful! Im going on a permanant prophylactic-Keflex probably to keep the infection at bay. Still not working yet, Still have days where im great! and other days where im crap :(
Hope Alls well graham…. take care, Gayle xx
I have a neuroginic bladder and have been self cathing for 4 1/2 years. Now I have developed Atypical Parkinsons disease and am unable to self cath. I have been had an anchored cath since this past May. Sleeping
all night is wonderful as is shopping and many other away from home activities. I am scheduled for surgery 10/18 for the SPC. We don’t know why I have the bladder problem. Other than the PD I don’t have any other issues except that I am almost 73. I wear a leg bag which I can hide under a skirt and large bag at night. I have my catheter changed every two weeks but still have frequent uti’s and I still can’t change the bag myself. I don’t have a specific question just want to know if in the opinion of other users if I will be happywith my decision.
Hi Janice. I think you will be happy with the SPC. I’m not sure what an anchored cath is but you will hopefully have less infections with the SPC. I have my tubing changed every 4 weeks. The bag changing issue might be the same for you because of the PD.
I know how great it is to sleep thru the night and be able to do daily activities without having to worry about making frequent pit stops. I
Good luck with the surgery.
Hi everyone, I should have waited a little longer to celebrate. I thought my new site was infected so I went in for a check, no infection just a reaction to latex. My doc wants to wait to make sure the new track is established. When I woke up from the procedure the 19th of Sep, I told doc I had the wrong color tube, he glanced at my chart and said your right, no latex. He said no problem we will change back to silicone your first tube change.
I have a problem knowing this thing in me is eating away my flesh. I go back in 2 days for the big doc to take a look. I switched to silicone years ago when my best nurse noticed redness and site irritation. I was thinking just the other day, this kind of tube kinks less and is more flexible maybe they will let me stick with it. Now its all I can do not to cut it out myself. How can a tube go from causing redness years ago to melting me?
Yeah I had the same thing Lozza. You may just be less tollerant of laytex these days. Those cheap flexible laytex (dare I say Bard) catheters are nasty. After four weeks my site was sluffy looking. Having changed so many my mum helped me whip it out exchanging for silicone foley and the site improved overnight. I don’t know how confident you are, and can’t tell you to change it, but if I were you I would. I’ve written a catheter change procedure (see the link in article above or on homepage).
Graham, I wish I were a brave woman. I whine instead of taking action. I don’t have the fine motor ability to change a tube. My bladder is spastic enough the only people I trust are my regular 2 SCI nurses. They feel resistance, they wait out the spasm. They have the compassion to work on me at my body’s pace, not my appointment slot. And yes, Bard. What do you think of the young doc saying its to soon to change, the track may not be established yet. I picture in my mind that what is happening on the outside of me is also taking place inside of me. The rule at the VA is 6 weeks till the first change after a SPC. The big doc will see me and make a decision, I hope he decides to get this thing out of me. Thanks for listening.
I have had a spc for about 4 months due to radiation cystitis in my bladder from prostate treatments 5 years ago.I went through hyperbaric therapy for the severe bleeding for 3 months and it seem to have done the trick.I had it changed 6 weeks ago and am due to see him in about 2 weeks to change it again.What he has me doing every day is clamping the catheter of for about 8 hrs. during the day to allow me to start going naturally.however I am going about every 45 minutes and it burns alot.When i’m ready stop the clamping the catheter is filled with blood tinged mucos and it smells bad.When I go naturally there is no blood and the smell is normal.Should I see the Dr,B4 the 2 weeks?
Mark, I still have blood tinged mucous at the SPC site (after a year) and doc says it may never change. It’s not a lot so not to worry. Burning with odor during normal urination usually means infection.
I’m still having issues with odors, changed to a silver coated type tubing and the odor seems to seep thru the bag, more so when the bag needs emptying. But the odor stays after that.
I myself would normally wait but the burning is not normal. so call the doc sooner rather than wait. Also, the tubing not being used for 8 hours could be growing bacteria which could cause the odors and then gets into the bladder & starts the infection.
Murphy’s law??
On Wednesday I received a SPC. On Thurs. afternoon the cramps started and carried on for about 4 long hours. I envisioned the balloon shredding my bladder, it felt so awful. That long stretch has been the worst of it so far, but I am still getting very painful cramps, rather than spasms. Is this a common reaction? I don’t want to give up on this, I can see how much better my life could be with it. Any comments?
Hello,
I am feeling some burning sensation from the normal passage of passing urine since few days. Could you suggest me what i should do to reduce this discomfort. I heve been advised to take a medicine whenever once a day if i feel this but it is helping only a little. Many thanks.
YA, why would you take a medication “whenever” for a burning sensation? If it’s an antibiotic it should be taken for a specific time frame for an infection (which it sounds like you probably have). Otherwise the infection will not go away.
YA, I’m thinking the same as June, what medication is it? Antibiotics should be taken regularly. You do have a supra pubic catheter right? Burning in your urethra could be anything from a sexually transmitted disease, to infection, to diet change, to kidney stones etc. If you are unhappy with your medications tell your doctor asap.
Hi guys… do we know how Laurie is?
I haven’t been about for a while because I’ve been really well…Oh my god…touch wood – quick!!!!! After my urologist did an inspection of my bladder, well we had lots of time to talk and he has me on a daily low dosage antibiotic and touch wood – everything is just fine.
Hello,
Yes, i do have a supra pubic catheter. I am taking detrusitisol. The doctor told me to take either cystrin or detrusitisol. I am taking detrusitisol since three days and he told me that if i feel the burning sensation a lot than i should take it twice a day. I dont know if having a burning sensation indiacates infection or if i have infection.
Recently i had an ultrasound and the doctor said that my left kidney is smaller than the right one and he said that it was because of the damage done to it due to urine retention before i had turp and the treatment. Is there anything to worry? How do i know if i have stones in the kidney? Many thanks.
How is everyone? I’m on low dose daily antibiotic too, helped for a while but ended up with candida in bladder etc. Am now following suggestions on here for washouts which has helped. Urispas I take as necessary but I now take it with domperidone to prevent nausea which works for me. I asked about other anti-spasm medication but was told no because of other medication i am on.
I get worst spasms when either bacterial or candida infections are overwhelming my own defences.
Miss Pies stay with it…..I did exactly what you’re thinking about and had my spc taken out due to painful spasms. I wasn’t told I could have had Botox or medication to reduce spasms. I had to have spc back in as my smooth muscle, valves and all, go into spasm which stops any urine output! Funnily enough bladder spasms with spc surprised me with how painful they can be….. I can cope with other types of pain more easily, local anaesthetic injections into and around spc entry site were less painful than bladder spasms. It is tough going with spasms but it does improve.
Are you on antibiotics after having spc put in?
Read through Graham’s info as it gave me some ideas and helped me eventually find a way to manage it all. Good luck.
I have had a Spc for 4 months now, at the beginnng mine was clogging up every 3 or 4 days. So the end of August they put in a silve coated Spc, since then I have had severe bladder spams. The doctor put me on Levsin 1 tab 4x a day. They helped for a short while so then he told me to double up on them to 2 tabs 4x a day. Yesteday it had been so bad for 2 days I called him back and he said to take 3 tabs 4x a day and if that didn’t help to go to the ER. I went and they said I still have my 2 infections so they gave me a shot of antibotic and said to see my doctor Monday. I guess my question is will I always have such severe spams, I am thinking living with these spams is not an option. I have learned alot from reading your site, thanks for the info.
just a query if I were to have the super pubic catheter procedure is it usually a day case am a able to go home the same day or do you usually have to stay in hospital
thanks
Yes it’s just a day stay unless they are doing other fun things to you. With me I was in and out pretty quick. It was maybe an hour procedure and then after you wake up & get things explained u go home. No shower the next day though.
I took it easy for a couple of days to get used to the bags and no lifting or doing strenuous stuff, then went on with life.
Good luck with your procedure
Hi Joanna
As June says, usually a day case.
I only had to stay in overnight because surgeon used wrong sized instruments so swapped instruments over and i ended ups with 2 holes instead of 1. Catheter was blocked completely with blood and would not drain at all…it took them a while to flush it all out.
Recovery was really quick. No spasms at all initially. I use a valve day time & bag night time.
Good luck, if you go ahead.
Tamzynne
Hi everyone, im thinking about getting the supra pubic. I’m a quadriplegic and im getting these bladder infection more often. I’m nervous but it seems that everyone is really pleased with theres.What are the pros and cons? Am i over reacting?
Hi Walter,
I think overall more pros than cons. Having an spc makes life a lot easier in many ways. Infections can still be an issue. Read back to earlier comments. Everyone of us have an issue at some time or another but if you have a good doctor who is not just the surgeon, things can be managed. The surgery is not a real big deal if done correctly (see Tamzynne’s comment above). I’ve had mine for a year, only one infection, but odor issues have been a problem. Changed type of tubing used, with many thanks for the help I’ve received here, and things are not as bad now. Everyone has different issues and i’m sure you will see more comments come through to help you make a better informed decision.
I think Graham is the expert but I also needed the input from other members here.
Good Luck with your decision! June
Hi everyone, I had the re-site done on the 19th of September. I went into surgery with a silicone catheter and came out with a latex one. Doc said sorry, the latex was eating away the flesh everywhere the latex touched. I have learned that what caused redness and irritation several years ago can become a full blown reaction. I had to wait 5 weeks to change the tube to ensure the tract was established. New tube, skin is almost healed. Contractions have stopped, bypass wetness is gone peri-area skin intact(no diaper rash). I am able to drain when up in my chair. I believe this is what should have happened the first time around, better late than never. It is not a tug of war anymore to change my tube, the old one is removed, the new one inserted. Thank you all for the support.
Laurie
Great for you Laurie! Changing tubes should not be a big deal. Happy for you!
June
Awesome Laurie! Great to see so many of you willing to help and answer others. Thank-you all. I’ve had to reduce my online time because of a silly pressure area.
Hi all,
I am particularly cross with almost ALL the medical profession. I have MS and have had a SPC for nearly a year.
Now surely it’s not rocket science. We can put a man on the moon but there doesn’t seem to be anyone who can help with my bladder!! I have now had to have a change in catheter every 5/6 weeks. I live from UTI to UTI!! I drink so much that I sometimes can almost see Nemo in my eyes!! My urine smells like gone off fish and is very cloudy early in the day becoming clear after 2/3 litres of water throughout the day. The last time I had my catheter change was in hospital and the nurses couldn’t find a slide/banana board anywhere in the hospital so they changed my catheter with me reclining slightly in my wheelchair. It bled quite a bit and I have now contracted pseudomonas ( a bacterial infection)-more antibiotics! I have started putting medicated talc on the site of my catheter hole. It’s drying up nicely! Talk about do-it-yourself medicine!!
I have been promised a silver tipped catheter next time….. Not holding my breath!! I have also become allergic to the silicone. I get blister at the top of my leg( what is it doing inside)To counter this my carers put what we call a catheter condom round the tube- actually a finger bandage!!
Hi Wendy
I too have ms, sounds like you’ve been through the mill a bit. Not generally advised but i ended up doing bladder washouts every 2-3 days as I also had constant uti’s and ended up on low dose antibiotics. The washouts combined with low dose trimethoprim are working for me.
I have catheter change every 12 weeks regardless as I have found it makes no difference to the amount of uti’s I’ve had. Other people I know have found it helps to have it changed more often.
I use hydrogel coated latex catheters, tried the nitrifurantoin catheter but had a reaction to it. Havent tried silver catheters yet so can’t comment on those.
My spc site still bleeds on regular basis and I tend to get blood in my urine when I get overexcited coz I’m doing something fun……like horse riding, trike riding….did try motorbike again but it got really dull falling off sideways all time…..could only stop when I found somewhere soft to land.
Keep trying things out Wendy until you find what works for you, hope it gets better for you.
Graham – pressure areas are more important. Your site helped me sort out spc issues. Thankyou
Has anyone with an SPC experienced the uncontrollable urge to have a bowel movement any yet nothing comes out? The urge is strong and causes him much discomfort. Any one experience this?
Hi kim, im assuming the guys in a chair?? maybe the SPC is pushing on a nerve? I havent experienced any of that, ive had mine for 10 mnths now, and im mobile. He may have diverticulitis… a small pocket or a few that collect the poo and stay there. Try lots of food thats roughage, but not too rough; green folage, broccoli, but not spinach, whole meal breads, mangoe juice, lettuce, things that DONT have skin!! peel the apples etc, and take skin off the tomatoes too. See if that works. Im a chef and food stylist as well as doing 6 yrs of Super Foods to help me fight my cancer in the bladder and urethra… Ive stayed well all along, and strong, despite giving in to a SPC, and im damned happy i did!! All the best kim.
OMG I feel like you may have just saved my life. I have been suffering for 5 years cursing the doctors that gave me this thing. Ive had constant infections and sediment so large i thought it was stones. And constantly have pain that feels like Im passing stones. wetting myself for no reason and nothing is blocking the catheter, for some reason it just goes the other way. I have spent so many nights in such horrible unrelenting pain that i literally cant think straight and wished to die just to stop it. Even though other than that I am very happy, but it gets that unbearable. My urologist is apparently a moron. ”sediment is perfectly natural, nothing you can do” he says, and ”permanent removal will require a bladder transplant cause the shrinkage cannot be reversed”. All he ever suggests is more water and antibiotics, and now those are not even working. The hospital that gave me the thing only a month after my injury [transverse myelitis] apparently didn’t consider that I might gain back enough function to use intermittent. Or they just didnt care as long as they could bill another surgery. THANK YOU SOOOOOOO MUCH 4 THIS INFO. 2 questions… how do i discern what beers are naturally brewed? and how can i stretch my bladder back out?
You can retrain your bladder by placing a ‘flip flow’ valve at the end of it. You will feel your bladder filling up. and you can hold onto it as long as you can, then release the valve.
so are you still taking daily anti-biotics?
Cheers
oopsss!! That last post didnt make sense! ‘….placing a flip flow valve at the end of the…’ catheter. I should have said the catheter!! Sorry.
no, i usually have to do a course of antibiotics 2-3 times a year and i feel good for awhile. but the last time didn’t help.
i’ve tried retraining like that but i start getting autonomic reactions within 5 minutes, and draining the old way
Hi Bobby, are you female? Backing up your bladder is a good way to stretch it out. Also medications for an over-active (shrinking and spasmodic) bladder called anticholinergics will help. Ditropan, Detrrol, Enablex, Oxytrol, Vesicare are some brand names. Ask your doctor about taking or increasing the dosage if you already do. These will serve multi purpose in your case. By reducing bladder spasm you reduce shrinkage which in turn reduces bypassing (leaking) urine and hopefully pain.
The best way to avoid antibiotics is to not get an infection in the first place. Your sex, age, mobility, drainage devices and frequency of catheter changes etc. would help us give you specific anti-infection advice if you need it.
Naturally brewed beer is not as popular in the U.S as other countries where It usually tells you right on the label. Pure Blonde is my current brand of choice in Australia. Ask around at your local liquor outlets.
i am Male, age 29, c4-c6 incomplete injury 6 yrs ago. i have about 70 -80% function in my hands and arms, but nothing lower, and feel pretty much everything. the box of catheters is out of reach so i’ll add that info later, but i think theyre just latex cheap ones, changed every 1-2 months, but lately they clog in 2 weeks.
Grahm,
I have MS and have had my Supra-pubic catheter for approx a year. My Neurologist thinks my having my cath still is causing me to have frequent UTI’S causing me to have flare-ups in the past. I’m working on getting rid of it. My question is when I’m urinating it burns like crazy, is this because of a UTI or non use of my urethra,I’m still very hesitant to get of it because I tend to retain urine, and will need to self catheter. I just don’t know what to do, I have not had a flare up of my MS in almost a year now, so I don’t know why my Neuro is so against me having it.
hey all! Been in a deep freeze for the last 8 days in New England, No heat or electric.
I think I lost at least 5 lbs or more. Everything I ate or drank stayed in ny body just to keep me warm.
Had some blood and lots of sediment in bags. Electric came on late last nite so at least I’m warmer. Drinkig lots of water today praying for no infections. Those of you with MS understand that.
A side note, I get my tube changed every 4 weeks. The silver gel coated tubes (2nd one now) seems to keep the odors to a minimum. I don’t know how I would have made it without everyone’s suggestions. My doctor is very receptive to new ideas and the nurses I see are great.
Wendy, I’m going to try the medicated talc idea. I still get drainage and blood at the site especially when overactive (LOL all the transferring I do can wear me out sometimes). I also know how it feels to have the tube changed while leaning back in the chair. VERY uncomfortable! You should get your own sliding board. I usually have mine in the van so I can be a passenger sometimes.
Not being able to see in the dark this last week (except with a flashlight) I haven’t been able to make sure the site is clean enough. Now with lights I can take care of business.
Bobby & Nicole, females are more prone to UTI especially when sexually active, pregnant, incontinent, or have bowel accidents. Females also typically have more adverse reactions to UTI (such as burning). Some UTI grow from sediment and when frequent blockages occur it is certainly worth trying the preventative measures outlined in the article, as simply changing a catheter can be another cause of UTI. Study groups report Clean Intermittent Catheterization (CIC passing a cath frequently) has the lowest UTI incidence rate.
If you think you can get away with at least six months of CIC over SPC, I think it worthwhile. Anything less than that and I would stay with the supra pubic catheter. Of course it is your body, your choice. Any UTI like symptoms that persist more than a few months may be related to a whole different cause and should be investigated.
can anyone tell me why this is happening? i have a brand new SPC, no blockage, and somehow fluid keeps ignoring the laws of physics and taking the path of greater resistance. two days straight now i have been soaked in urine and cant stop it. this has happened before but never more than a few hours. im at 48 hrs and counting now and not one drop has come thru the spc.
Boby, the tube could have a kink in it. If not inserted properly it can kink up and not work. This happened to me once at a tube change. (The nurse always checks to make sure it’s wsorking before I leave) thi visit nothing was happenning and I had to drink all this water that never went anywhere. The the nurse was just moving the tube around a bit and it unkinked and started working. If you aren’t comfortable moving the tube yourself, check with you nurse or doc. If there is no blockage or kink then something is wrong somewhere and I wouldn’t wait any longer to find out.
Did you just have the surgery or just a new tube change? Either way, call the doctor ASAP. This is not normal.
Good luck,
June
How do you know it’s not blocked? If you can push fluid in but not draw any back out the eyelets may be resting against the bladder wall or poking down your urethra. Given all the problems you’ve been having I think you should be in hospital.
hi
Graham, it’s been a while! well no more supra pubic cath horror stories. I have now elected to have an OSTOMY or Irish my. Two weeks after surgery a bowell obstruction put me in the hospital again. it takes getting used to it but at least it doesn,t have to be changed. It’s a learning experience like the spc was. still have a nite bag. looks kinda gross. but the spc wAsn,t very sexy either. sexy starts in the mind anyway. I am glad I don,t have a coloscopy yet. #1 at a time (excuse the pun). I have a great appreciation for duct tape and the many medical ways I can use it!!! drives my Dr. Crazy!! just thought I would let u know of my new adventure!! hope all is well , ronna
hello,
My spc recently got blocked with the sediments and gel like substances. I thought it was normal until my doctor sent me for an ultrasound and said i have multiple stones in my bladder.I was also complaining of lower abdomen pain few weeks back and burning sensation in passing urine. I would wash my bladder weekly but he said i didnt wash it well as my bladder is very large. Now i have to go for surgery this week.
Is it common to get bladder stones with spc? What precautions can i take to avoid recurrence of these stones? Any medication or diet that might help? I read now that parsley helps in reducing occurence of bladder stones. Many Thanks.
Hi Ronna, great to hear you are still looking to the positives and learning as you go. There are websites dedicated to the many uses of duct tape, we could really open a few eyes I’m sure. I am well, had a blast in Thailand and will be heading south mid December.
Hi YA, there is no evidence suggesting a properly managed supra pubic catheter causes an increase in kidney, bladder or gall stones. Logically a mismanaged SPC may as inadequate drainage can cause sediment build up. However when a bladder is not draining adequately there are more immediate health concerns than bladder stones. Bladder stones are somewhat of a mystery, a diet high in shellfish and uric acid, genetic history, physical activity… nobody really knows a single cause.
I would cease bladder washouts in any case but out of interest what kind of fluid were you using for bladder washouts? My advice; have regular check-ups, ensure your supra pubic is draining well, and follow all the general advice to avoid bladder stones, but most of all smile and live your life to the full.
My 93yr old grandfather recently got a spc due to a “stretched out bladder” due to his prostate. He is having frequent bladder infections so I added in a cranberry supplements. I noticed that a few supplements were mentioned here on your site. I was wondering what supplements to do you think are must haves (of course in your own opinion) or ones to try first to help promote a healthy urinary tract?
I have a question. When I went in to have my SPC site relocated, I entered surgery with a silicone catheter and a well annotated chart stating adverse reaction to latex catheters. I woke up when the surgeon came to speak with me in recovery, the first thing I noticed was the wrong color tube. I asked why I had latex? Doc said oh yeah,its right here in your chart, no latex. Well its to late now, there is to much swelling, I will fix it in 6 weeks when your tract is established. I went home and the latex ate my skin away and left a large, ugly crater all around the site, the pain from the burning and the raw nerves left me begging for an early tube change. I made it to week 5. I ended up with the tissue growing way past where it should have. My nurse called it proud tissue. He explained when the cells grow back the skin surface tells the cells that’s enough, you can stop growing now. There is a much more accurate description, but he explains things at my level. The fix is usually to burn the excess tissue off at skin level. My last tube change as soon the old one was pulled out, the urine in the tract felt like acid burning. It hurt enough for a few old sailor words to slip out. Now my nurse is concerned the tissue overgrowth may be everywhere the latex was in contact with me. He wants the docs to check me with a scope to see if the tissue inside needs to be taken care of. My nurse also pulled strings to get silastic catheters for me. They have the flexibility of latex without the bad reaction. Anyone else ever have a reaction to latex like mine, or have tissue overgrowth. Does anyone know how this story may end? I will see the docs in 2 weeks. Thanks
i wanted to try using silver lined spcs. i need a specific prescription. can anyone tel me exactly what to ask for?
Hello,
I am advised to use PSaline fluid for bladder wash outs. Is this fluid ok any fluid you would suggest? Also does having vitamin c or calcium lead to bladder stones. Do you recommend any tests or ultrasounds that we must perform for preventive reasons monthly or yearly for maintaining healthy bladder and kidney and not wait for last minute. Many Thanks.
I can recommend BARD silver coated cathters. You can visit on BARD website. http://www.bardmedical.com
Hi all. I’m new here, don’t know if I’m ok to be on here….I have a spc due to retention (possibly fowlers syndrome?)
I went into retention bout 3 yr back, I expel urethral catheters by the hour hence the spc. Isc is a huge issue for me due to…don’t know how to describe it…I’m anatomically hard to catherise. Sept 2010 I had my 1st spc put in, and I had loads of problems, which lead to me removing it myself…anyway after the longest 6 months of my life, the uro agreed to replace it, so in June 2011 i had it replaced :) it’s been fine in comparrsion compared to last years.
My problem is the ballon bursts regulary. Can anyone think why!
Thanks so much
Faye xx
Laurie, I originally started with an indwelling catheter, the most expen-sive ones the pharm had. I didn’t know how many different caths were on
the market with widely varying prices. After a procedure done in my uro’s
office, I was left with a latex cath. From that point on I could not keep
a catheter in past a day. My bladder rejected all. So now I have my first
SPC, latex of course, and I notice a red rash on my tummy and tummy is very
itchy! I have a month to go before my first change.
Bobby, for a description of various catheters available you could type in
‘indwelling catheters’ in your search engine. That might help.
Hello everyone. I have my first spc, now 2 months old. My uro looked at it
last week and was pleased with appearance. He will do first change just
before Christmas. My question to all: does the site ever dry and stop
weeping and forming scabs. I clean site am and pm. Sometimes I cover it
and sometimes I leave site exposed. Either way, lots of weeping of fluid.
Your comments and insight are appreciated.
Miss Pies, you could be having a reaction to latex. Rash & itchiness is not something I would wait until Christmas to have checked out. Call now before it ges worse!
Also, I’ve had my spc for about 13 months and my site has never stopped weeping. My doc says everyone is diferent and originally said it could take a year, I just keep it clean and don’t worry about it. I keep gauze around the site to keep undies clean and live with it. If that’s the only problem then I say no big deal.
Hi all
Bobby, MissPies is right….I found ‘part’ numbers on manufacturers website when I needed to order some new valves.
Ronna, hope your surgery goes well – my urologist wanted me to have more surgery but so far am refusing and sticking with spc. I too end up using duct tape…..often to tape up catheter when they can’t change it and I have to wait 6 months before I can get in hospital for a change- it tends to start falling apart about 5 months.
Miss Pies,as June says, my site has never stopped weeping or trying to grow extra tissue, it often bleeds too.
I’ve just had bone removed from hand so can’t move my chair very much, really difficult to wheel anywhere with one arm in plaster. Can’t wait to be mobile again…..
I take cranberry supplement and acidolphilus, also have low dose dose long term antibiotics and long term anti fungals – spasms have almost stopped. I also do a washout when things start to slow down or start spasming
Miss Pies,
For what it’s worth my SPC was weeping and growing granular tissue for a while but it seems to have settled down. My body seems to have accepted the idea of a tube and it sure beats where I was before it. I hope things settle down for you.
June, Tamzynne, Bill, thank you for your comments. Another question now,
what is a washout, when do you do them, and do you do them yourself?
MissPies,
I have heards it mentioned here before but I haven’t the faintest idea. It might be along the idea of putting a saline solution down the tubing into your bladder to sort of clean it out. But I reallt don’t know.
Can’t wait to find out the reality of it. I assume it’s something you can do yourself once the doc says ok and they show you how.
HAPPY THANKSGIVING TO ALL WHO CELEBRATES THIS HOLIDAY
I’m thankful for this website and all the great help and support!
Miss Pies, I was advised NOT to do washouts unless blocked but I have found that when I start getting more spasms its generally due to infection getting out of control (bacterial or fungal) and I get more ‘bits’ in my urine.
I have chosen not to risk anymore antibiotic resistant bacteria so apart from low dose trimethoprim I don’t take antibiotics now unless a serious infection has taken hold.
So I do 3 lots of daily washouts, against my urologist advice unless blocked, and this seems to sort things out for another couple of weeks. I use a syringe to push warm saline into my catheter and let this straight out then use syringe to push about another 20 mls in and leave this in for as long as I can. This with trimethoprim has kept me free from really nasty infections for 3 months now.
I feel so muc better, I’m no longer ending up with kidney infections and my energy levels are much higher. I tried so many different methods after constant uti’s and this is the only one that works for me.
Othe people have other methods of managing their spc that works for them – find what works for you and if you do go against your urologist opinion make sure you know the risks.
Hi,
I discovered your website whilst looking for information on SPC’s as, after 30 years in the chair, I am to have a supra pubic catheter put in. Although I had my accident in the UK I have lived here in Ireland for the last 13 years with my wife (her home town) and two teenage daughters. I am a pretty independant C5/6 incomplete SCI and have become used to managing with a urisheath/legbag drainage system. This worked fine until the last couple of years when I have been having an increasing number of UTI’s due to urinary retention. I have been self catheterising once a day to try and help this but no luck. Hence the need for a SPC.
I have been looking at the article on your website and the following posts and have found it very interesting and informative. Unfortunately, I am still very concerned about how I will manage with it. It seems that there are many problems with infection, skin, catheter type, leakage and the rest. As I said, I am pretty independant and manage with the aid of a PA for an hour or so on most mornings, and them I cope on my own. I don’t ask my wife to help me at all, but that is another story.
I still enjoy life, work during the week and like to let my hair down and have a few drinks with friends and colleagues. Travelling is something that I enjoy and plan to do more of before I get too old and knackered. I am 54 and after 30 years of pushing, lifting and various problems I am starting to find it is getting harder.
I would be very interested to receive some advice or encouragment regarding this.
Congratulations on an excellent website which I will looking at further. (P.S. I did try posting on the SPC page but got kicked off.
Cheers,
Les
Well, Les. I have been very happy with my SPC. I spent 2 years with stricture problems and procedures to try to fix them before I got an SPC last May. I understand that some folks have had a whole lot more trouble with these than I have, but the only problem I have had was a skin infection around the site that cleared up with medication within a week. It has given me more freedom from urinary issues than I have known in 2 years. So there’s my 2 cents to add to the other realities of blockages and latex allergies and spasms that many have experienced. I do a change once per month at a urologist’s office which for me has also been pretty routine. I hope that, if you decide to do the procedure, yours is as much of an improvement to your condition as mine was.
Hi Les.
I’ve had an SPC for 14 monthts and am glad I had it done. I am wheelchair bound with MS and found an article about SPC’s in an MS magazine so I asked my urologist about it. She seemed to think it was a good idea since I couldn’t always get to a bathroom and transfer on time and that limited my independence. Do one errand, go home to pee, than out again for the next errand, head home again, etc. Or just one errand a day. Limiting fluid intake not good so the soc sounded good. Surgery, in and out same day. No big deal. I can’t self cath so that was never an option for me. My surgeon said that 5 years was the max time to keep the spc but I’ve read here that others have had them longer.
I have the tube changed every 4 weeks, others here on the site have different time frames for changes. Each of us seem to have issues of one kind or another. Only one UTI in 14 months is pretty good (knock on wood).
Leg bags for days and nite bags for sleeping. The original tubing I was using allowed odors so we changed to a silver gel coated type that lasts about3 weeks before odors start up again. Part of that can probably be attributed to the meds I take.
If you’re not allergic to latex that’s good. You can still get UTI’s but each of us is different in how our bodies react to the SPC and there are doctors that screw things up and then problems can happen.
If you have faith in your doctor, go for the SPC. then all you have to do is empty bags, clean them, (good for at least a week or more, nite bags last a month before I toss them out) drink lots of water, get tubes changed regularly.
Hopefully you will be happy with the end results. To me, self cathing would seem like an easier way to get infections.
As I said before, each case is different. Hope I’ve helped you a bit in making your decision. Good luck and keep posting here so we know how you’re doing. Our moderator Graham is a great help with advice and knowledge and so are the others who post. You can learn a lot and and knowing you’re not alone is a big comfort no matter what you’re situation is.
June
As it’s a subject that comes up frequently I have created a bladder washout article where we can share our experiences. People ask me why I bother with this site for no pay. It costs money and quite a bit of my time. Then I read your comments, see you all helping each other, it makes it more than worth while for me. Thank-you all so much for your continued time and support. I appreciate it very much. You are good people.
Hello,
Thank you so much for the article on Bladder wash out. It is very thoughtful of you to take out so much time for us and this website. I am really thankful to you and because of this website i have learnt a lot. It is not only a learning source but a moral support for all of us. Best Wishes.
Hi June and Bill,
Thank you for your comments, you both sound enthusiastic about SPC and I hope that I will feel the same. There is not a lot of information available here, in rural Ireland, as you probably have guessed, and although I have faith in my doctor, I am going into this fairly blind. I have learnt more on this website that anywhere else that I have looked.
Does it cause problems with clothing ie. belts and waistbands. Can you bend over easily to empty the leg bag? How is it at night? I would be concerned about leakage in bed, at the office and when out, both from the site and through “Percy”. I know that everybody is different and that we may all experience these things in our own way, I just feel that after so long feeling “safe” from these things it is like starting all over again. (And those were difficult days!)
Thanks,
Les
Les,
The only bed leakage I had was when I had the uti and I was wetting everything. Nite bag hangs over the edge of the bed so the only leak would come from a defective bag. I use loose pants with elastic waistbands cuz they are easier to put on. The leg bag has elastic straps so it can hang below the knee and I just lift the pant leg and reach down to pull it up to drain it.
The only leakage from the leg bag would happen if the bag were the twist cap for closing and u accidently don’t tighten it closed. Been there done that, Flip flo closure is easier to manage. also when you change bags make sure the tubing is attached secure or it could slip off the bag and then oops!
Once you get everything it will all be easier to understand what I’m talking about.
The leg bag can be positioned where it’s comfortable for you, on the inner or outside of the leg. I always keep a metal type water bottle and antibacterial wipes with me so I can empty the bag when needed and not always have to find a bathrom.
It’s all so much more simpler than it sounds. You’ll figure what routine works best for you.
“Percy” should be fine and if the surgery is done right he shouldn’t have any problems. for showers I use a plug in the tube so I don’t wear the bag.
The guys out here in Mad Spaz land know more about how “Percy” will react than I do. Hopefully someone will share with you on that.
When are u having the surgery?
June
June,
I have been using a leg bag and night bag connected to a urisheath (could be known as a different name in Oz, but it is a condom with glue on the inside which adheres to “Percy”). So, when I have the SPC fitted on 8th December, Percy will no longer be covered up which will feel strange and I will be worried if he might leak. (One for the boys, as you have suggested!)
I just wondered if the SPC might get in the way when bending forward at the waist or if the site is easily irritated by tight clothing. In reality it will be a case of just getting on with it and coping, but I have a bit of a hang up regarding leaks, (as you might have guessed) which I have pretty much bought to zero with my current system.
Les
I have an spc—and I`m thinking of going on a cruze–right now I 1`m useing a night drainage bag–I dont want to use this on the cruze–will a leg bag be ok?
Josh,
You may want to look into a belly bag at some point. I was using a night bag and a leg bag until I saw a post on here about a belly bag. It allows for much more freedom of movement (kind of an under the garments fanny pack). You can walk without worrying about the slosh of a full leg bag. Check the athomemedical.com site for the best prices.
Josh,
Try the leg bags for awhile and see how you like them. But as Bill said, a belly bag would be a good idea especially if your going to wear shorts on the cruise!!! I believe I read an earlier posting from a woman who uses the belly bag for swimming.
I only use nite bags at nite or if I’m going to be home all day working.
HAVE A GREAT CRUISE!
Les,
The SPC is below the belly button closer to the “Percy” area hairline. (at leats mine is even tho I don’t have a Percy). No bending over issues. You will probably keep the area covered with gauze for awhile as you will have some drainage at the site after surgery. But not pee. Don’t worry so much. It’s all gonna be easier to deal with than you think. Good luck on the 8th! By Christmas time you will have adapted and forgotton all about the worries you have now.
June
Graham,
I did not realize this site was a non-paying project for you.
I want to pass on my heartfelt thanks for what you do. You and all the other members have enriched my life in many ways and I am very grateful I found you. Thanks so much!
June
Graham,
Is there a way that we can help with some of expenses? Your time here is invaluable to those with difficulties. Our ability to answer questions is limited by our own experiences.
I would concur with June’s thank you for your work.
Graham, this is a FAB site. I got my spc(almost 3 months old now) because of the site. I finally found a place to go that had answers to questions I couldn’t quite put into words. I’d really like to know more about you…you are very active and seem to like living on the edge, challenging yourself. Do you have a med background? If this seems too much like a time and energy drain, but you’re ok with the idea, can I arrange to have you interviewed? Results will appear on your site if you approve. Pls let me know. And again many thanks for the site. Irene
Thank-you June MissPies and Bill, I appreciate the offers but your continued participation is all I hope for. I have been very fortunate in life. If love is worth anything, I am a very rich man. Thank-you all.
Hi all- I am a female with MS and had an SPC put in in March 2011. I had it removed 5 weeks later for many reasons and now I see that I really am going to have to get one again and deal with the issues that I had. I was uncomfortable with wearing a clear leg bag, so I tried the belly bag. I have a very short waist and am non ambulatory so it just did not work for me. I realize that I probably will have to give up wearing shorts but was wondering if in the US there is a way to get
1- a leg bag that is not clear so that if a long skirt or pants drifts up, I won’t be showing yellow urine to the world. I don’t want to get a cover- I just think that somewhere there should be a leg bag that is not clear and on the back side touching the leg, have a coating that is more comfortable than plastic against the skin. My legs jump very easily at the slightest irritation.
2- a leg bag that is molded to fit on part shin and part thigh. I see they have these in the UK, but have not found them in the US.
3- I have long thighs and short calfs and my catheter was very low, so I needed to have my bag more on my calf for drainage, but the end would be right at my shoe. I tried smaller bags but as soon as I drink water I fill up even the larger leg bag very quickly.
It was very challenging for me to have my SPC but I have to have one to be able to urinate without having a non stop care giver with me. Any suggestions would be welcome before I dare have this surgery again! Thanks!
Leslie, I have MS too and have had my SPC for over a year. Here in the Massachusetts I have 2 leg bag options, one is a clear smaller bag and one is a larger leg bag I use for longer days out. I don’t wear shorts so that’s not an issue for me. The bags have stretch elastic bands at each end so you coud have it above the knee or you can tape the cath tubing to an upper thigh level or even on the stomach so it won’t be so long. Talk to the doc or nurse as far as taping it so you still drain. Yep, with all the water we need to drink, the bags fill up. I always keep a metal water bottle and atiseptic wipes in my van for easy emptying bags.
you are probably gonna have to live with the plastic bags.
Also, ask your neurologist about Tizanidine. It helps with the leg spasms. my life has been much easier with the spc. Good luck!
June
June, when you say that your life has been easier with Tizanidine and SPC what do you mean? Right now my spasms in my legs are so bad. I’M a quadriplegic and i wear a condom cath. I’m looking for some relief and the thing is that im not sure if im not emptying my bladder doing the day time or not. I’m taking baclofin which i dont feel is helping at all. Do you think after you got your SPC your spasms decreased? I’m wondering if my bladder has anything to do with my legs spasming so bad. Please give me input
Hi Walter,
the spc makes life easier coz I don’t have to always find a bathroom or not make it in time. I took baclofin for years and it never did much good. Been on the Tizanidine 4mg 3 times a day since July works pretty good. Doc says I can make it 4 a day when I need to. Helps the legs stay calmer especially for sleeping.
If your bladder is not emptying you can get more infections.
The SPC did not make a difference with the MS spasms. It just gives me more freedom and allows me to keep my independence rather than be chained to a bathroom.
The MS can be a cause for bladder problems. You don’t die from MS. You die from related problems like kidney issues which is why the spc is a good thing. Gotta keep the kidneys working and in good shape.
Do you have an spc yet or are planning on getting one?
June
im really thinking about it because i dont know if my bladder is really emptying fully. It seems the moment i have to urinate, my legs seem so spastic..i went to the doc and i dont have a bladder infection. Ive heard some bad stories about the SPC i really dont know..these spasms are starting to get to me. Do u have any side affects from Tizandine
I havwen’t had any side effects. It can cause drowsiness or light headedness. Not to me though. The spasms can be possibly be related to bladder issues but someone who is a quad may be able to answer that.
There are always gonna be good and bad stories about spc. But everyone is different. You gotta weigh the pros & cons. Life is ever going to be perfect no matter what we do. We live in chairs or not. Do you have a neurologist? Maybe he/she can answer some questions. Same with urologist for spc. Look for info on Tizanidine. I did a quick search for you:
What Is Tizanidine Used For?A short-acting medication, tizanidine is used to treat spasticity in adults. For example, it can help treat muscle spasms, cramps, or tightness that is often caused by multiple sclerosis or spinal cord injuries or diseases. Each dosage only lasts between three and six hours. Some of the drug’s “off-label” uses include treating lower back pain and preventing migraines.
Gotta go, have a good nite whatever time zone you’re in.
June
Hi Walter, I’m thiniking along the same lines as June, an underlying reason is causing spasm. I know myself anytime my supra pubic catheter or man parts are touched my legs spasm. It is common amongst quadriplegics. You have ruled out UTI so other than ingrown toenails, bowel irritation, pressure areas etc. possible solutions are anti-spasmodic medications or starting/ceasing an excercise regime.
Thanks June. I have used the leg bags before and found the clear plastic unsightly, the elastic straps itchy and uncomfortable and wearing the bag between my thighs and calf would always kink the bag. I found a molded bag in the UK that would be perfect- I’m trying to get info on how we in the US can get them and wy is there not an opaque bag with just a little clear strip for seeing how full it is? If anyone has info on how we in the US can get better bags, please let me know.
Is your tube, June, put in right above your pubic bone? Mine felt so low it was in the pubic hair region and I always heard that they were just 3 inches below the belly button. Mine was about 6 inches below the belly button.
Thanks!
Leslie,
I can’t help with the major issues you have mentioned, but maybe a minor comfort issue. I have cut up an old towel and put it between the plastic of a leg bag or belly bag and my skin. It’s better than plastic against you all day.
Did you check athomemedical.com for the bag you’re looking for?
Leslie,
Wow! 6″ is really way low. My cath site is about 3 inches or so below the belly button. Right above hair line. Also, you should know by now that the US is usually the last place for FDA approvals and new medicines, products and treatments……
Bill, thanks for the websie info. I’m going to check it out. Of cours my insurance probably won’t pay, but worth looking into.
June.