Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Trishie: Alcohol wipes are better as they kill any bacteria on the skin. The burning might be an infection, best ask your urologist. Robert: It shouldn’t be a problem. I’m pretty slim yet still have a crease where the supra pubic catheter site is. Just be aware it increases the risk of site infections as bacteria thrive in a warm dark environment

2. Graham. Some time back I asked about installing a Supra Pubic Catheter. At the time you suggested that an Exterior Male Catheter (Texas Hood on this continent) might be an option as I still have considerable mobility. Thank you. I finally got around to trying it and to getting some supplies. No more frantically looking for washrooms! No more wet jeans! No more urinating in mall parking lots! On the other hand, it takes some getting used to sitting in my chair, talking to a lady and willfully urinating as we carry on a conversation. Not as easy to do as with a Foley, but much less risk of a UTI. I still intermit, but only once daily. Thanks again for your sage advice.

3. I’m particularly interested in hearing views from others with a monte stoma.

4. Hi Graham, I’m so glad I found this site. I’m a t-12 complete who has been self cathing for 15 yrs. I’ve run into some problems and am now using a uretheral Foley. My urologist and I both want this thing out of me. I have a false passage in the urethra and if he can’t pave over it with collagen he wants to go with a sphincterotomy (sp)and leg bag as he is against super pubic catheters as well. I read Tube Boy’s input from 04/07 00:57 about his navel spc. Have you heard of any other people using the same method? Thank you very much.

5. I had discussed with my surgeon pre op regarding the pros and cons of having my monte stoma attached to my belly button or ovary. Apart from a few minor difficulties after the op in 2004 this stoma has enhanced my quality of life and I would recommend it highly. I catheterize 4x daily via my stoma and no longer have the severe discomfort that I used to endure on a daily basis using a uretheral catheter.

6. Steve: Thanks for your tips! An SPC and self-cath equally carry minimal risk of UTI when done correctly compared to the other methods. Sterility is very important but lifestyle is too, it’s a matter of finding what works best for you. BobS: I’m glad to hear things are improving. I remember once looking down at my old tan swede boots thinking why is one all dark lol. Peeing while talking to the ladies, I never really thought about it, that would be awkward. As my Supra Pubic Catheter constantly drains I joke, stop making me laugh or I’ll pee myself.. oh wait I already am.. haha. Nick: 8% of people who undergo a sphincterotomy suffer complete loss of erectile function. It’s old school and less frequently recommended these days. See 18 Feb 2008. The only reason I can see against you having an Supra Pubic Catheter is irritation. As a T12 you probably have limited sensation where the SPC would enter. Though at the navel you would have even more sensation. If the collagen fails I would seek an alternative to a sphincterotomy. Lorna (and Tube Boy) has a stoma. Usually performed if there’s no other viable way to drain the bladder or if the bladder itself is removed. In the latter case, a piece of the small intestine is taken and tied at one end to form a tube which is connected to the ureters. The other end is used to form a stoma, an opening through the abdominal wall to the outside. A stoma is much the same as self-cath only you pass the catheter through to the bladder via a different opening. It all comes back to sterility and good clean techniques.

7. Hi Graham: See, I DO keep in touch with your site! How are YOU????
   Actually, I wanted to comment about Steve’s (11/4) post, calling the Supra Pubic Catheter opening on his skin a “stoma”, which, as you know it isn’t, but along those lines, Bill’s MD has brought up the possibility of doing an “ileal loop” surgical procedure on Bill because of all his annoying sediment, which we keep under control as best we can, (presently using all silicone catheters)…but STILL the sediment persists, especially about 3 wks. after the change. (an improvement, yes, but…), although, no big infections for awhile! My question to you concerns the potential cancer risks. Do you know the risk of “ileal loops”? Frankly, I’m not sure it would be a better alternative convenience wise but if it is an even safer way than the pretty safe SPC, I’m all ears! The decision is ours. I would really appreciate your feedback, or how to get it. Bill’s MD is not a talker. Thanks as always, Anne

8. Hi again! I’m launching back into life after feeling quite rough for weeks ! I’m hoping to start swimming again soon, but I need advice on protection over my leaky stoma. Anyone have any idea where I can get product information because my specialist nurse isn’t used to a Monte stoma and the bags/pouches I’ve tried so far have been ineffectual. Not a problem by the way Graham, didn’t matter! Best wishes everyone! Lorna.

9. Hi Anne, An ileal loop is major surgery, not reversible and often in men the prostate is removed along with the bladder. Personally I would take a new catheter every three weeks over this procedure any day. Cancer risk is lower as you have less organs! Not many surgeons will take a reasonably healthy organ out. I’d advise regular blood testing and scans for cancers then if detected such a life changing procedure may be avoided or considered. I am not a doctor however. My best to you and Bill. Hi Lorna, I’m not familiar with a “monte stoma”. Pop by your pharmacy and ask their recommendation of a covering, there are so many available. I put a sticky one on a pressure area once. With a stretchy clear center the half inch of sticky edge near peeled my skin off when removed. For most plastic “caps” are available that will seal closed the stoma during sporting activities. If yours is leaking between skin and stoma you may need further surgery to close it.

10. Hi Graham, I Knew it wouldn’t be long until I was back for further advice, I am so grateful to you for this site, it really is so helpful. I have now had my Supra Pubic Catheter in for 4 months, It certainly hasn’t been an easy 4 mths as my body just hasn’t wanted to accept it, I’ve tried so many different medications to stop the terrible spasms and bypassing and get the Supra Pubic Catheter to settle, to no avail, but finally I have been given Lyrinel XL that I started the dosage off at 5mg and increased it weekly until it made a difference, I got all the way up to a dose of 30mg before I felt any benefit, I now take 30mg daily and the spasms and bypassing are now under control. The problem I have is my doctor says they are only licensed to give me up to 20mg and although the hospital have sanctioned me taking the 30mg for now, this really can only be used as a sort term measure because my doctors are not happy about the situation. If I come off this high dose all my problems start again immediately. My consultant has now offered me another option which is to have botox in my bladder, which he thinks will solve my spasms because my bladder would then be paralyzed. If this does become the answer I would be able to come right off all the medication and just have the botox topped up twice yearly. What I am wanting is your opinion on whether you think the botox is a good idea to try and if you know of any problems that may occur from going ahead and trying this procedure. Thank you Graham for your help once again. Kerry

11. Graham, Conflicting reports! Does a uti thrive in an acid bladder or an alkaline bladder? The world seems divided in two on this. Also Graham, am very interested the botox mentioned by Kerry above. Thanks again Graham, have a happy Christmas

12. Hi Kerry: The use of Botox to treat an overactive bladder is relatively new. The only study I’m aware of was 15 women in Scotland. Directly after treatment 14 noted reduced symptoms of urgency and frequency to urinate. The volume before urge to void also increased significantly in 13 women while the actual maximum bladder capacity increased for 10. Or, after taking 30mg/daily for 2-3mo you could most likely reduce dosage to 20mg/daily and see how you go. I would be inclined to try the botox Kerry, retreatment twice yearly is the average. There are two main risks with a Botox bladder. 1. Being to effective, the bladder can be so paralyzed you don’t void at all, however as you have a supra pubic catheter this won’t be of major concern should it even occur. 2. Injection into the bladder necessitates a cystoscopy under general anesthesia which carries the obvious risks. I would go for it Kerry, if it doesn’t suit resume the Oxybutynin (Lyrinel XL) treatment. Hi Geoff: Both overly alkaline and/or acidic urinary pH increase the incidence of urinary tract and bladder infections in men and women. If you are regularly testing your pH between 6.5 & 7.5 is the optimum range.

13. Hello Graham, thank you so much for putting up this site. I think it pretty much answered most of my questions. My husband (of 19 years now) is 37 and was diagnosed with MS about 7 years ago. For the last 4-5 years he(James) has had an IDC, but he hates getting it changed and he refuses to do anything sexual for fear of pain. We have not slept together now for about 5 years as he sleeps in a hospital bed now. A week ago one of our care workers suggested we talk to his doctor about getting a Supra Pubic Catheter, so, as she put it ” he could get his penis back” My question is from the way she was talking it sounded more like this catheter would be able to stay in longer than his usual once a month change. But what i’m reading is that it is still just as often. I thought it would be more like a PD tube. I was on peritoneal Dialysis for quite a while so i thought it would be more like one of those tubes. Is there such a thing as a permanent catheter? PS: sorry for the long story but it is nice to be able to talk to someone about this. thanks again.

14. Thank-you for your candid questions Sylvia. I gather the terrible pain during sexual activity is due to rubbing/pulling on the IDC. Hospital style beds are great for tying wrists to rails, teasing each other with scent, touch and taste (scented candles, lingerie, K-Y Jelly, guide his hand) if he objects lay beside him for awhile and listen. Given long enough (possibly weeks) he may think twice. However your method, my thought is to take the IDC out and bring him to climax. Could be next due change, a pre-planned wink to carer leave us alone till I come out and take control. Should it be relatively painless an SPC is definitely a viable option. Technically there is no such a thing as a permanent catheter as all catheters sooner or later need to be replaced, at best every three months. He may just need to be gently remind there are many ways to please a woman.

15. Thanks, Graham. I am in agreement with you, and consider it a little strange that his Urologist. suggested this out of the blue, when he hasn’t been much help previously in other areas, like you have. At the time, he was referring to the sediment problem. I had to bring Bill to the office recently to change his “stuck” all Silicone Catheter. after a month… due to the combo of his high coumadin dose, severe bld. previously explained, and etc. MD FINALLY saw the bad sediment problem for himself, and it was at that time he suggested the Loop Procedure. {Maybe the hospitals, MDs are needing extra money here due to the awful, Bush-inflicted economy}. (joking)? AnyHOO, I’m getting the previously more successful version of Methenamine from Canada now, and thus far IMPROVEMENT!!! (This week only, fingers are crossed)! At any rate, I would get a 2nd opinion RE: The “Loop”, but prefer to clear his urine up better with other methods! Bill sometimes has to stop Cranberry Juice., R/T diarrhea which doesn’t help either. Any other type of Juice suggestions for his urine PH? Orange Juice is not recommended for him. I see you are still giving your great advice. Your site is a blessing to all concerned! Sincerely, Anne

16. hi There ! I’m recovering from anesthetic, operations and having to be in hospitals too much during the last 2 months… I think I’m allergic to hospitals !!!!!! Have some interesting info to share when I’m feeling better… not sure if messages will go through on this site so will wait until they do ! Take care everyone x This site is such a support to me knowing that others understand this part of my life. Lorna x

17. Hoping your site is up and running, and that everything is OK. No response for quite awhile! Sincerely, Anne

18. Anne – Graham was going to spend the Festive Season away from home. That could account for the lack of contact. BobS

19. Hey guys I’m back and very busy. Apart from cranberry juice good sedimet reducing fluids are wine, naturally brewed beer, apple cider, diluted vinegar and lemon juice. All have been reported to assist in lowering urinary tract infections and sediment levels. We look forward to hearing from you Lorna. I hope you all had a Merry Christmas and I wish you all a Happy New Year.

20. Welcome back Graham! I had the best Christmas despite it all, just hope my daughter doesn’t carry out her threat of putting her Christmas video on Facebook :( I’m asleep with my year old Grandson on it! :) One of the things that was highlighted while I was in hospital, fluid intake! sounds simple, but my urologist said that if everyone drank the amount of water that I do then it would be interesting to see the decrease in infections. I haven’t had a urine infection since I started looking after myself properly, part of that is I drink 8 pints of water throughout the day. At the moment I have a permanent catheter in my stoma and a ‘Flip Flo’ valve attached, making life a lot easier for now. I haven’t touched cranberry juice for ages because I got fed up of it, but I swear it made a difference. Caution to anyone with problem joints, my orthopedic con said the acid level in cranberry juice is not good for painful joints. I’m rambling! Take care all x Lorna.

21. Hi Graham. I’m kind of up against the wall right now. I have a moderate bleed through my trans urethra foley. My urologist said to drink copious amounts of water to keep it dilute. This started yesterday. I don’t know if this is the time to push again for the Supra Pubic Catheter since a bladder bleed is a bladder bleed but I know he’ll want to do the sphincterotomy. He’s doing procedures in the hospital right now so his staff is going to report this to him and get back to me. Any suggestions?

22. lol@Lorna, I’d like to see that video! Hi Nick, anyone with a catheter experiences occasional little bleeds now and then. When frequent and ongoing something should be done about it. I would try a Super Pubic Catheter first as unlike a Sphincterotomy the Supra Pubic Catheter is easily reversible should it not work out for you. No matter what keep your fluids up.

23. LOL! made me smile ! I’ll see what I can do Graham! Thinking of you Nick… remember it’s YOUR body… unless the laws are different over there nobody can make the decision for you. I agree with Graham… easily reversible. I’ve been having trouble with bladder bleed recently so you have my empathy. HAPPY NEW YEAR everyone ! I started the New Year TTP… how about you guys ? The Joys hey ? !

24. Hi, Instillagel is a local anaesthetic and lubricant for mucosa … can be used urethrally and in my Monte Stoma… It makes life a lot more bearable for me ( understatement ! ) because it reduces the risk of tears ( I used to get torn quite a bit when not using this Gel and rarely tear now ) Does anyone else use it? I’m feeling so much better now and not sleeping so much which is great… have things to do ! Right now I’m off to play with my delightful Grandson and feel very lucky with my life despite it all! You guys on here have really kept me going x Thankyou x Lorna x

25. Hi Graham & peeps….I had my SPC fitted on the 3rd January and spent 5 days in hospital due to complications during op. They apparently flush your bladder with a massive dose of antibiotics before inserting the SPC & unfortunately I had an adverse reaction to the antibiotic used. I spent nearly 5 hours in recovery as they couldn’t send me back to the ward in the state I was in. (I was told by a nurse the day before I came home that I had been overdosed in recovery, although she was not supposed to tell me!) The Supra Pubic Catheter responded well on the Saturday through to Sunday evening when I flooded down below, so they reinserted an urethral catheter & put me on Oxybutynin Hydrochloride 5mg 3x times daily. I was told they take 2-3 weeks to start working but I think they may be the reason why I am feeling so ill as I am very chesty & my breathing keeps going shallow & my body is involuntary jumping every so often. I also have a terrible feeling high in my stomach on both sides. My inhalers are not responding to the wheezing & rattling in my chest as they normally would do. I don’t know whether it is the tablets as I came home with lots of medication & am only now left on the oxybutynin & Tramadol daily. The district nurse comes Monday, Wednesday & Friday to change my dressing after a shower (not allowed baths until healed)but I have no pain at all around the SPC site which is good as I was dreading it before I had it done. I had to stop the district nurses removing what they thought was a dressing as the doctor told me the SPC was immature & needed to crystalize around the site. They have never seen the procedure done in this way before & would like to know if other people have had it done like I have? Anyway to cut a long story short, I am now awaiting further surgery which I find distressing as I wanted them to do it all in one go, but my consultant believed the SPC would work on its own. 3 options are on the table which is the closure of down below, non reversible, collagen injected every 3 months or where they connect the bowel with the bladder & both exit the same site. I go to see another consultant on the 5th March to talk through the options. I hope everyone is ok & just so glad this site is here. Suzan.

26. This site is a godsend, and I can’t thank you all enough for the info and posts above. Here’s my problem. After successful seed-implant treatment for prostate cancer around 10 years ago, Dad developed strictures and difficulty urinating about 18 months ago. His docs (north of Boston, MA, @Lehey Clinic) performed a TURP and then cathed him. He developed chills and fevers so bad that he’d shake the blankets right off. The TURP didn’t heal right, he continued to have blockages, had another TURP, had to self-cath twice daily to keep things open, and still no success. His primary care doc doesn’t believe in “over-medicating” so dad received no antidepressants or pain meds other than ibuprofen after these procedures. He started walking hunched over like an old man because of the pain. Developed a bulging disk in his back that required treatment this fall. Finally, in October 08, they inserted a supra-pubic catheter, which at first seemed to help, but he developed blockages and had to have it changed. They taught my mom to irrigate it twice daily and for a while that worked, but then it blocked again, plus he had renewed discharge, blood, fluids, and tissue from his penis, as well. Back in last week for yet another TURP and a new SPC. Blood pressure dropped dangerously and a high white blood cell count suddenly appeared. They checked him into ICU but released him Friday. By Sunday, tube blocked again, despite irrigation, and it was back to the ER. New tube placed, sent home, tube blocked again, back to ER Sunday evening. Another new superpubic tube placed, sent home with orders for a visiting nurse. She irrigated Monday afternoon, still not working, still bloody discharge through urethra, back to ER, new tube, and admitted for ANOTHER TURP today. Please, any recommendations any of you might offer at this point would be such a blessing. My dad is only 74, bright, active, and alive, but this past year and a half has been utterly devastating to his life, his health, his dignity, and his spirit. He can’t take much more–he’s giving up–and my poor mom is exhausted trying to care for him all on her own, because I have 3 young daughters and live 600 miles away–thus can only fly home for short week-long visits as often as possible. Most cordially, Deb

27. I’m sick fed up of my bladder and associated problems at the moment, so your encouraging words cheered me somewhat.. was worse before stoma so I’m back to being positive now. I’ve had a good start to the new year despite the obvious.. had another video taken of me and my Grandson asleep again today! On the beach hey… we have snow and frost here! Lorna x

28. Hi Graham… First let me wish you a Happy New Year. I am having my Supra Pubic Catheter done tomorrow after having gone back for a 2nd opinion with the Consultant. He wasn’t impressed when I told him about your website & became rather shirty with me by telling me that “You are quite welcome to get your treatment off the internet if you want to!” When I raised my concerns he understood my concerns. He agreed that I could come in the day of the op instead of the day before. I brought some baby teething gel, but where do you actually put it to relieve pain? I have not been able to get any alcohol wipes though. Will let you know how I get on when I get home. Thank you, Suzan

29. Lorna, Thanks for the words. It’s nasty here in upstate New York too.

30. Suzan: I hope you’re feeling ok post-op. ~hugs~ Many doctors frown upon internet medical advice as some people misdiagnose and mistreat themselves. That’s not what you are doing. You’re simply researching what they are going to do to you and learning from people who first hand, actually have an SPC. I point out again I am not a doctor. The teething gel can help ease any discomfort you may feel at the site (catheter entry point). I would avoid this for a few weeks for sterility reasons until your site heals as much as possible. Rest as much as you can for a few weeks to aid healing. Instead of alcohol wipes some use vinegar on a tissue or soft wipe, the vinegar acts as a sterilizer. You could also use a hand sanitizing solution.

31. Graham… I am a registered nurse and relatively new to home health care. Thank you for your courage in putting this information out for all to share. You input has been invaluable to me as I have only experienced patients in an in-patient setting. Your perspective on home care of the Supra Pubic Catheter was incredibly helpful. One question I have is how long I might expect the external “stoma” to resolve on my elderly patient. I am presently providing wound care once per day and after almost two weeks, I don’t see any significant healing, although the site is free of infection – the site is actually more open than I would have expected from previous SPC placements. What is your perspective on the wound status (sight unseen, of course)… Respectfully, John RN

32. Hi John, Thanks for your kind words. My Supra Pubic Catheter site (catheter entry point) took about 3 weeks, most take between 4-6 weeks to heal though many never fully heal. Elderly take a little longer to heal in general. The same applies for an actual Ostomy type catheter stoma. Some will form a tight clean seal requiring little maintenance where others look inflamed weep and will always require regular cleaning. Being infection free, restricting activity, healthy diet, sunlight, keeping it as dry and sterile as possible all assist in a speedy well healed site. Supermodels use hemorrhoid cream under their eyes to reduce wrinkles and puffiness. If 8 weeks post-op it’s still a worry ask her doctor about using one (do not apply to open skin) to tighten and shrink down the site/stoma.

33. Hi Everyone x I’m picking up and the bladder bleed has stopped again, have had a day where I haven’t been having deep sleeps most of the day! WIPPEE! I swear a substantial intake of coffee and chocolate has helped to stabilize things LOL! my cookie sense of humour keeps me ok too! Thinking of you Suzan… wish you had my specialist team, they are open to new ideas… see their patients as the experts and find TTP (Taking The Pee ) funny even though I used the less tame version in the hospital on my charts ( I thought charts were there to amuse me? ! no?! tough!!!!!!! ) We have come a long way from the days when one would be paraded in front of a bunch of doctors with all dignity removed, don’t let anyone revert to that. Usually a gentle nudge of the verbal variety works wonders. Hope you’re doing better too Nick x Will be adding myself to site forum when my brain is not so desperately in need of a Granny-nap Graham! Take care all x Lorna x

34. Lorna: I’m glad to hear you’re feeling better.

35. Hi Graham et al: The latest on Bill and his SPC is that the Urologist/Asst. hasn’t seen many sediment problems as bad as Bill’s, despite our carrying out the correct interventions, including all-silicone cath; with the only exception that Bill can tolerate just so much Cran. Jce before he has a rather nasty diarrhea problem. We usually mix it w/h2o. I have been getting Methenamine MD from Canada, as the US doesn’t make it anymore…but the MD states the dose is 1 GM. 1x qday w/Vitamin C, (although directions on Canadian bottle are Meth. MD 4x/day). USA MD states it’s too much (??!!)… so it isn’t working for the sediment much anymore. MD found a Proteus Infection, which he is treating w/Ampicillin presently. No fever, but urine back & forth w/color/consistency. Neither Bill nor I want the Ileal-Loop surgery…as far as I’ve been told, there is no Cancer present at this time. Any suggestions would be most welcome, especially specific Proteas infection in urine, as he’s had it before. Hope you are doing well! Graham, sounds like you had a great New Year Holiday!

36. Hi all x Still able to TTP despite having a kinky tube! Having a chat with specialist nurse tomorrow…will ask about sediment and what she’d recommend and get back to you Anne. Not sure what they give over here (Britain) because I haven’t been troubled by sediment since using copious amounts of Instillagel ( I wonder if that’s why ? !) both urethrally and in my stoma. Maybe my huge intake of coffee?! Have found a covering that works so I can start swimming again as soon as my bleeding bladder (pardon the pun!) gives me a break! Next year’s Swimathon here I come! Take care all and Thankyou Graham! Lorna x

37. Anne: Drinking additional water and/or certain fruit juices (eg. cranberry, plum, prune) and increased protein in the diet while taking methenamine ensures adequate hydration and acidity of the urine. I recommended Bill avoids citrus fruits and juices (e.g., orange, grapefruit, lemon), milk and dairy products, and antacids. These can decrease the effectiveness of methenamine. The standard dose is indeed 1g 4 x daily (every 6hrs). Proteas can get nasty and often require two full treatments of antibiotics. Lorna: Glad to hear you’re on the mend. You’ll be swimming in the Olympics in no time!

38. i have spc my dr told me that it can never come out i lost my kidney 2004 and i have all so have had a stork to thats what is what happen to my bldder i wish that i could get it out but i cant so i just have to live with it i am really sick and i have to be carefull i cant be around any one that is sick it gets really hard to handel some time but i ask god to help me me and he gives me the streath to keep going ann

39. Hi. I’m going in on Friday to have an SPC and didn’t realize it took so long to heal. I’m taking a 40min flight on the following Friday for a week and never thought to mentioned it to my Dr. Do you think it’s going to be too early for me? I’m also planning on going to Mexico in April but was reading a comment about the air pressure in a plane not being good for an SPC? I was thinking I wouldn’t have any worries with flying once I had the SPC.

40. Ann: The internet is great for people who can’t get out much. You can make friends and find people in a similar situation to you just like all the good people on this page. Hang in there. Cathy: It will be fine to fly. Ideally it’s best to remain inactive and lay prone giving the best chance to heal but it’s not always that easy. Most people just continue on with their daily life the next day. I’ve heard silicone expands at 22K’ but have flown many times no problem. I would be more concerend about DVT (Deep Vein Thrombosis). You’ll be fine Cathy, enjoy your trip! Send us a postcard ;)

41. Hi Ann, My thoughts are with you…I used to feel really isolated where my ‘hidden’ disabilities are concerned.. most of my friends are a bit freaked out by ‘medical stuff’! I have found this page to be such a relief in feeling less isolated with this because the folks here really empathise. Lorna x

42. Lorna: Thank You. I’ll take any info’ that might be useful. Can I ask what you mean by “Instillage”? Ann Powell: Hang on in there. Things seem to be bad everywhere. The blessings are things like this site, and of course, the internet. I feel for other people around the world! Anne

43. Lorna, et al: Thanks for the response. Bill does not have a stoma, per se…but a “healed over” small opening from his bladder to his lower abd. where his SPC comes out and into his leg (or other) bag. I’m sure you’re aware of the differences, but some people may not be. Those should refer back to Graham’s previously written explanation of their differences. If Bill’s bladder were to come out, which we DON’T want to happen…then, he would have a piece of intestine surgically placed to make the stoma…which resembles a small colostomy (bowel) “stoma”…no tubing involved; ie, little chance of inflammation/infection from the pre-explained catheter “rubbing, etc. causing most of his problems w/sediment, and fairly frequent infections. Lorna, and Graham, back to you: Bill follows a good diet regime, but doesn’t take quite as much fluid give him. He has a diarrhea problem when he has more than his body can handle. still a good amt. Otherwise he follows similar practices to those outlined above. I finally got ahold of a PH dipstick tester, (which doesn’t seem to be done much here for a SPC’s), and found Bill’s PH to be 8 prior to taking the Antibiotic RX he’s on now for 10 days. It’s now gone below 7. He doesn’t overdue it on dairy or citrus foods, either. Perhaps his body just “likes” him to have an alkaline leaning urine. I’m aware infs. grow more in that environment. Strangely, the Urologist hasn’t even addressed that issue like I did, mainly from your site info’. Perhaps there’s a medicine that would be safe and lower his PH w/o the antibotic. I will have to “feed” this info’ to his MD. MD is local (North of Boston), but for the most part, I’m not impressed with the ones he’s had even in Boston. They are always in too much of a hurry with our dumb insurance system. system!!! Although I present only relevant questions to them…I get the feeling they consider it a P.I.A. Thankfully, his MS MD, and GP are top-notch!!! Hope you are all well.

44. Hi, I suffer from Cerebal Palsy and need a carer and a turn-table to use the tiolet. I’m young (23) and craving independence and decided that an SPC is the way to go. I’m off to the hospital tomorrow to see the consultant again. I’m hoping to get an idea of when I might be able to have the op. Is it simple? How long does it take? Will I have to stay in hospital for long? Generally how long have people waited? I know it varies from hospital to hospital

45. Hi Graham: Could you address my last question(s) placed on this site, as it seems that I got misplaced. At any rate, my interests remain with this site. Thank you in advance, Anne

46. I’m not sure what you mean Anne.. pH? A pH of 7 is not bad and I don’t know what more Bill could do as you guys have tried every trick in the book. Might be worth asking about different drugs as you suggested. Kate: It is a fairly simnple proceedure taking about 20 minutes although as Suzan found it doesn’t always go as planned. Boy you had a rough time of it Suzan. I didn’t have my bladder flushed with antibiotics and don’t see the need for it. The only prep I did was drink alot of water. Collagen treatment is becoming more popular and certainly worth trying before any non-reversible option IMO. I had a general anesthetic, was staying in hospital at the time and healed in about 3 weeks. Most hospitals will want to keep you in at least overnight due more to the anesthetic more than SPC op. A buddy of mine had a local and the supra pubic catheter installed while sitting in his wheelchair watching then drove his chair home. Suzans 5 days and 3 weeks are the average durations.

47. Hi all, Good news. Went to this hospital today and we’re all systems go in about 5-8 weeks! So pleased! I’ve decided to go for a general so will have to stay in over night. I’ve finally joined the club. lol

48. Although I have two catheters at present, I can put the urethral on a 750ml leg bag, but I have to keep the Super Pubic Catheter bag as 2 litres until I go back to the hospital. I have an electric wheelchair. I can see no place to put it. I have been told, it must be lower than my sitting position. The district nurse told me I will have to hold it, but as I can only use one hand which I use to operate my chair, this option will not work for me. Do you know of any gadgets that are made for this purpose as I can not be the only one with such a problem. Thanks Suzan

49. Kate: Glad you’re pleased. We’d like to hear all about your experience. Suzan, Anne & Everyone: You should all be able to post in the forum now. I answered you there Suzan and posted some photos I took this morning.

50. Hi Graham, I believe the reason why they flushed me with antibiotics was that I had a urine infection on admittance to hospital. I was under the impression though that all patients who have the Super Pubic Catheter fitted have it done to prevent infection of the insertion of the SPC here in the UK. Thanks for your reply in the forum, I telephoned the wheelchair technician this morning & showed her where to look at your pictures. She has a Nike bag she is giving me that her son got his new trainers in! (how lucky is that?)lol. She is coming to see me this Thursday & hopefully get it sorted before my appoinment on Monday the 2nd Feb. Hope everyone here is ok?

51. Hi Suzan, Having read your message telling of your recent problems having your Supra Pubic Catheter fitted in January, I can relate to you so much because I too have had problems since having an SPC fitted last August. I know for most people they work perfectly from day 1 but with everyone this isn’t the case. I have Cerebral Palsy and am wheelchair bound with no sensation in my bladder so when last year my consultant recommended a Supra Pubic Catheter, I thought it would be the answer to all my problems and eagerly agreed. I went in and the operation went perfect apart from an awful lot of pain from the site (which was to be expected) the catheter drained perfectly and I was discharged. Within a few days at home the site got more and more painful and I started with the worst painful spasms I have ever had, I also continually because of the spasms bypassed most of the day until in the end I was almost bedbound for over 3 months because the spasms were so bad I couldn’t sit up in my wheelchair. At the worst point my catheter blocked 1 night and district nurses came to change it, but they took over 2hrs to do a job that should have taken 10mins because my catheter wouldn’t pull out as the spasms were pulling against them. They said they had never experienced anything like it and had never had such a traumatic change. After trying many different medications to no avail I too was started on oxybutinin 5mg daily that each week I increased until eventually after increasing this up and up weekly I was on a dose of 30mg daily (higher than a recommended dose of 20mg). It was all ok’ed by my consultant and although the spasms became slightly more bearable and I could sit up again, they still continued every day. The side effects were awful and my dry mouth was unbearable, plus I couldn’t stay on such a high dose. Last Friday I was taken in to have botox on my bladder. Apart from the initial soreness and getting over an operation this seems to have worked perfect, I havent had a single spasm or bypassed once and for the first time since I had my SPC fitted 5mths ago I am pain free!! There are some down sides, my consultant has said it may
    keep me pain free for 2 mths and then I have to go through having it topped up but then again it could last longer.
    I wanted to contact you to say although to most people the SPC procedure works well from the word go it isn’t always the case, and although I have had many problems with it I perserviered and hopefully it has now paid off, and will help make me more independent which is why I had it in the 1st place. Thank you soo much Graham for this wonderful site, it is so much help and support, so thank you very much.

52. Hi Kerry, Thank you for your info on your experience. It certainly hasn’t been plain sailing for either of us. I go to the hospital next Monday to see the surgeon who performed my op, although I have to see another Consultant in March who will be performing the further surgery I need. I am a little hesitant about having the botox as it is a poison being put in to your body, but can you tell me if you stayed in hospital & how they did it to you please? Are you awake or do they sedate you? I am sorry to hear of the unpleasant problems you experienced like myself, but glad you are feeling a lot better & free of pain now. I have stopped the cyclizine after taking notice of what Graham said to me on the forum & will see how it goes.
    I am still bypassing although I have 2 catheters in & spasms occasionally which are extremely painful, but I have no pain around the wound thank goodness. Catch you again soon. x

53. Hi Suzan, I really do sympathize with you, all the bypassing is so unpleasant, after all that is why we had the super pubic catheter to stop wetting and bypassing. All I can tell you is from day 1 of having it done I bypassed and since having 300ul of botox on Friday I haven’t bypassed once and 5 months of daily spasms have cleared up instantly. I went in on Friday at 8am for the botox at 11am and was back on the ward by 12pm home by 3pm. It was over and done with fairly quickly with no overnight stay, the only thing that I was surprised about was I had to have a general anesthetic instead of a local sedation and I had been told it would only need redoing 3 times yearly and yet on Friday my consultant said he would leave it that I contact him when my spasms next start and he will redo it immediately and he thought I’d be contacting him in about 2mths. Which suddenly is a much bigger commitment up to 8 times yearly, but until I need it doing again im not sure how long it will be as this is the 1st time, obviously it could last alot longer, I will have to see. I must say there is no way I could have 8 general anesthetics a year so I will need to discuss having it done under other methods if it is something im having regular. I understand your worry about the toxin of botox but i can only tell you i have been fine and feel great from it. I really wish you well Suzan and just hope my experiences can help answer questions for you.

54. As you may or may not know, I’m having a Supra Pubic Catheter fitted in the near future. Just been having a chat with a friend who is also considering the same thing. We were both wondering if you have a spastic bladder, does it leak around the entry wound?

55. Kate: I had slight bleeding around the wound after the Supra Pubic Catheter was fitted which is quite normal. I have my dressing changed 3 times a week as I have to keep the site dry. Unfortunately the SPC only worked on it’s own for one day before I was refitted with an urethral catheter too. Like Kerry, I still bypass & have spasms which I now take Oxybutynin for. They do help, but I don’t like the side effects so will ask my consultant if he can put me on an alternative tablet. My wound doesn’t hurt at all unless it is pressed. As Graham advises, it is best to rest after having it done to aid the healing process. Good Luck & let us know when you have had yours fitted. x Kerry: Thanks for the info. I am glad to hear you have stopped bypassing & for the moment free from pain. Did they tell you why it is done under general anesthetic? I am pretty nervous about what they will advise me to have done when I see another consultant on March 5th. All I know is that I can’t stay as I am as it is impracticable & restrictive. I got my letter today about going in to have my SPC changed in April. Do they sedate you when changing the first one? I’m scared it’s going to hurt as I am a big baby when it comes to pain lol.
    Take care & I hope you will continue to feel much better.

56. Kate: Suzan was spot on. It’s common to bypass (leak urine) and bleed very small amounts for awhile but that should cease in 3-4 weeks. Anyone with a spasmodic or overactive bladder causing leakage should be prescribed a drug such as Ditropan (Oxybutynin), Vesicare, Enablex and Detrol LA. These relax the bladder and prevent leaking and/or bypassing around a Supra Pubic Catheter or any catheter for that matter. If unsucessful collagen may also be injected into the neck of the bladder (drainage point) to fatten the tissue further tightening the seal around the catheter. Suzan: I’ve never heard of anyone being sedated for a catheter change. If worried ask if you can take a few codine (not asprin) and tell them to use plenty of Zylocaine or Lidocaine (numbing gel) before and during the change. My cares whip the old out and new in with no pain at all. Often I feel a little flat afterwards but that’s more due to being a quadriplegic.

57. Hey guys and gals. What a relief finding this page, God bless you Graham for making something like this. I was in a really bad motorcycle accident back in Novemeber. To make a long story short, I now have a colostomy and a SPC. I’ve had both since the accident, and they’re suppose to be reversed once all my healing and other surgeries take place. Anways, even though I’ve had the SPC since November 16th, bladder spasms only started two nights ago, about once every hour, lasting for five to six minutes. I called the Doctor and he perscribed my Detrol. Well, how long does it take to work? Its been 7 hours and I’m still getting the spasms although they’re now coming every 45-90 minutes and only lasting 3-5 mins now. The spasms started when I was having alot of sediment in my urine and was blocking the tube, causing us to irrigate twice a day. Me and my wife were not educated very well in what problems to expect with the SPC so we’re learning as we go. My friends set up a website for me in case anyone wants to see it. Under the “What Happend” link tells the story of what happend to me and what all I damage. Its pretty crazy. Thanks again folks, this site and the comments here have been a huge encouragement to me and my wife. We don’t feel so alone anymore.

58. Whats the deal with showering with an SPC?

59. RSpears: Reaching the maximum effect of Detrol like any of the inhibitor medicines will vary from person to person. Generally it’s full benefit is achieved in 48 to 72 hours. Drink 3+liters/day and if you still have a sediment problem you could try Hiprex. You didn’t leave a link to your page? Kate: See the previous comments, specifically Kitty on 08 Oct 2008, Josh and I gave responses on showering.

60. Oh yeah, my bad. The website is http://www.rodneyspears.org Update, I ended up going to the emergency room to have the tube change out because the blockage was so bad we could not even flush it anymore. My urologist wanted me to wait another 24 hours before doing anything but I’m glad I went in that night. My tube was completely blocked and doctor there said what was causing the spasms was my bladder was so full it was spasming from being full. Anyways its all better now. With a new tube I feel like a knew man.

61. Hi all…well what a week I have just been through. In my last comments here I mentioned how ill I felt & wondered if it was the medication that was causing it. I got worse each day until at the weekend I started having nose bleeds & vomiting & coughing up blood & was rushed into casualty by ambulance. My temperature was 39.3 & my blood sugar up to 8.4(whatever that means) & my heart rate was too fast according to the ER doctor who attended me. They started me on IV antibiotics & saline straight away. I didn’t relize my wound was bleeding as I had cancelled the district nurses last week who come to change my dressing after my showers as I was only having bed baths due to feeling ill. (shower or no shower I will be having the nurse come from now on. lol) I had caught a bug from Guys hospital according to my local hospital although they didn’t tell me what bug! I am now on liquid antibiotics & off the Cyclizine altogether. I still have to take the oxybutynin until I see the consultant which has been delayed til the 2nd March.(We have terrible weather here in UK & transport greatly affected so all clinics were cancelled). I have a lot of sediment in my SPC bag due to not being able to drink much fluid last week but trying hard to drink more now the infection is going. Graham they sent me home with diclofenac sodium gr ec 50mg but they give me terrible heartburn & you can’t take indigestion remedies so I have stopped taking them. Do you know what they are? Glad to say I am feeling much better although I am still having trouble swallowing food so still on soup, spaghetti or beans diet. The wheelchair technician fitted the carry bag with zip-ties to the front of my wheelchair which will hold both 2 litre bags thanks to Grahams photos which he posted for me on the forum. She was quite impressed! I was ecstatic as I keep my dignity from prying eyes lol Welcome Rodney, I enjoyed reading your website & pray that God will continue to heal you & I wish you a speedy recovery. Love to everyone & I hope you are all feeling a little better each day.

62. Hi, I have been doing intermitent caths for 32 years recently having bleeding, procedure has not changed. Is there a better catheter I should try? What would you suggest?

63. Hello everyone xx First time I’ve been at the computer properly for ages. Read everyone’s news since the last time I was on here (just had op and was feeling pretty low about it all back then) the worst I’m having to put up with at the moment is toothache, would rather toothache to bladder and bowel spasms any day! Suzan: Diclofenac Sodium, another name for it is Voltarol. I take 150mg daily and thankfully have none of the stomach problems that are typical for most with this and Ibuprofen. Voltarol can come in injection form and slow release tablets, worth going back to ask about options. Robert: I used to catheterise Intermittently prior to having my Monte Stoma, I now have to use male catheters because of their length and position of my stoma. I often go back to LoFric catheters, but find them more difficult to use because they are SO slippery. I’m currently using Bardex catheters which have a hydrogel and Bacti-guard silver Alloy coating. I have never had bleeding with the LoFric and never had an infection whilst using the Bardex. Will happily put codes/addresses on here or via Graham if it helps? Kerry and others: You all have my empathy with Spasms xx Kind Regards all xx Lorna.

64. Hi Graham, my band played at the world wide special olympics in Boise Idaho a few weeks ago. We flew Northwest Airlines and I have to say they were very accomodating in all aspects of our individual needs. A couple of suggestions for those who will be flying are to bring your w/c cushion (it was’nt counted as a carry on)and if possible arrange for a bulkhead seat. My legs are as limber as it gets and I could pick one up at a time and prop them up against the bulkhead wall thereby keeping them elevated. I’d explain this to the flight attendant before hand. If you can’t get bulkhead try to get an isle seat and if possible turn as far as you can to get your legs out and set them on some carry on luggage to elevate them a bit. This might all sound kind of weird but it beats a blood clot.
    Thanks,Nick

65. Hi Everyone, I had last written on this website before I had my SPC done on Jan 15th. It’s not been too bad I guess compared to some of the note3s I’ve read. Like you Rodney, I had to have mine changed on Feb 15th due to being completely blocked, I guess from the bladder infection I had? It also took along time to get it out as the ballon dcouldn’t seem to deflate?? Finally after ultra sound and xrays they managed to get it out. Quite the ordeal, but I’m happy to say things are working great now. I’m getting quite used to it and am greatly enjoying not having to get on and off the toilet every 2 hrs!! I have MS and transfering was getting extremely difficult. So life is good now. I can go out now and don’t have to worry about finding a bathroom. And I can have more than one glass of wine!! I’m wondering about a bag to hold the bag for warmer weather when not wearing pants. Someone mentioned that Graham had some pictures of one??? I’m heading off to Mexico in April and I’d Love to see them. Which brings me to another question. What about going in the water with an SPC? Can it be done? Anway the SPC has been a great improvement in my life.

66. I`d like to know if there are any support groups in the st. petersburg fl area–this is a great site but I`d like to meet people personally

67. Nick: I’m glad things went well for you and thanks for the advice. I’ve flown several times without to much drama. I have however suffered two DVT (Deep Vein Thrombosis – blood clot in thigh) and a PE (Pulmonary Embolisim – blood clot in lung) due to imobility, while annoying a little spasming is often better than none. I take a 100mg asprin daily now as a DVT preventitive. Some quadriplegics are simply more susceptable than others. But enough on that, this page is for Supra Pubic Catheter info. You should join our forum Nick and tell us all about your trip in the Disability Travel Transport & Holidays section. Cathy: Welcome back, I’m glad to hear it’s a positive change for you, I was worried about your level of sensation. When deflating the balloon make sure the syringe is plugged onto the port firmly and draw back. We once tried to remove a catheter half deflated before realising the syringe hadn’t been plugged on hard enough. Many also test inflate/deflate the new catheter to ensure correct operation just prior to insertion. Sounds like you had a faulty catheter though. The cover bag pictures are on our forum here. I guess you have a leg bag? You can purchase hip bags to wear under shorts or use a tap or spiggot. Swimming or mud wrestling for that matter once your Supra Pubic Catheter has healed nicely (3-6 weeks post-op) is not a problem as described in the article.

68. Hi Graham, my band played at the world wide special olympics in Boise Idaho a few weeks ago. We flew Northwest Airlines and I have to say they were very accomodating in all aspects of our individual needs. A couple of suggestions for those who will be flying are to bring your w/c cushion (it was’nt counted as a carry on)and if possible arrange for a bulkhead seat. My legs are as limber as it gets and I could pick one up at a time and prop them up against the bulkhead wall thereby keeping them elevated. I’d explain this to the flight attendant before hand. If you can’t get bulkhead try to get an isle seat and if possible turn as far as you can to get your legs out and set them on some carry on luggage to elevate them a bit. This might all sound kind of weird but it beats a blood clot. Thanks,Nick

69. Thanks for the info Graham. and that’s great to know that I can go mud wrestling!! What is a tap or spiggot? and what doews one do with the bsg while swimming? Yes, I have a leg bag. I’ve I a couple of different ones. Just trying to figure out what works best for me. I’ll go check out a hip bag. I’m going to see a seamstress I know to get her to make me a bag for the bag. I have and idea for one but I also like yours. Do you buy them somewhere?

70. Robert, I obviously can’t say if the bleeding is from the same cause or not, but I had a similar situation.
    In my case, my prostate had become irritated and swollen. The catheter was hard to push in and bleeding resulted. I ended up with a different type of catheter – called coude (there is an accent on the “e” – it’s French). Basically it has a spoon shaped tip to help get around the prostate. Some have a coloured stripe to make sure that you guide it in properly. As time went on and I became more comfortable with them, I went to a variety without stripes. They were considerably less expensive. For the last while I have been able to revert to the normal ones. (Less expensive yet.) As you likely know, intermits are a bit of a bother, but they have less of a bug problem than the other types – provided proper hygene is used.
    Hope this might be of some help. Cheers, Bob S

71. Have decided to go for the SPC. Scheduled for March 20. Being a Quad lot less trouble then intermits 3x day. Any advise…

72. In this country, there doesn’t exist a site like yours. Why is that, I ask???
    Anyhoo, Graham, geetings per usual. I just saw the movie, “Australia”…is it descriptive of your country in any way? (BOO, Hollywood)! The scenery was breathtaking, among other things. I love Nicole!!!!! My question: How familiar are you with the Renacidin flush for SPC’s? That’s being discussed for him, but Bill’s latest scan only showed some large stationery stones, as before. At least, no Hydronephrosis(SP?) appreciate any info’, Love and XXXX’s, Anne

73. Deb… does your Dad have internet access? If so I know a family who went through similar experiences.. meeting others who REALLY understand/empathise makes such a difference. Most important is to tell him to throw away the embarassment of the indignity of it all because that just chews you up ( childbirth is worse ! )I went through isolated hell for years and no longer care about it in that way.
    If no internet access then the family I know found a magazine by Lofric helpful and contact with other prostate cancer survivors. I’ll be able to contact this family at the weekend and will get back on here with some info.
    Grandchildren are a wonderful incentive to keep battling on… if you don’t do so already.. send photos/drawings/anecdotes etc keep him alive through you and yours until he gathers his own strength again.
    Thoughts as always are with you guys xx Lorna xx

74. Hi all. Its been a while since I’ve been here. Just thought I’d let you know that I got a letter on Monday and am due to be admitted to have my SPC fitted on March 19th.

75. Dear Deb: First of all, hang in.. there always exists an answer somewhere! You came to the right place in consulting with this site, as it is the best I’ve seen.. and I am an RN, former Visiting Nurse who is total caregiver of a great guy with MS, a neurogenic bladder.. leading to a SPC placement.. which I’ve had mega sediment problems with, but have been helped by this site more than by anything. I don’t know if/when you’ve written to this site previously, as I don’t keep up with it all of the time.. but first, I’ll ask you to read all of Graham’s suggestions at the beginning, and refer back to the older comments if you have time. They are most helpful. Lately, my patient and I have been doing somewhat better, no thanks to the Boston, MA, US of A Urologists.. not to single out anyone. This is what we’ve been doing, mostly following just about all of Graham’s suggestions, particularly r/t fluid intake and Mandelamine (Methenamine) MD (generic name) 1 gm 4x/day, (or Urex). My North-of-Boston Urologist states that the dose is 1 gm.,/1x/day, but that didn’t work for the MEGA sediment problems we were having. To complicate things further, it is no longer available here, due to a factory dispute(?)…so you must get it as we do, in Canada. The dose on the bottle, and al state to take 1 gm. 4/X a day, and that seems to be the correct dose. Please check further yourself to verify; as I am not an MD, but have already checked it out ad nauseum. I don’t understand the problem with MA Uros, but I’ve had my FILL with them. My friends/colleagues are searching out a new one for us. I’ll let you know. I also have to irrigate with NA Cl frequently, but he’s doing much better since we decided to go for the whole recommended Canadian Mandelamine MD dose. It is an antibacterial, not an antibiotic, hence it can be used longer. Info available on line! Fluids per Graham are also ESSENTIAL!! Hope this has helped! Bless! Anne (More info available)!

76. Hi Guys, Just been reading through all your text, have been a paraplegic for 34 yrs and managed my bladder (automatically) until about 4yrs ago. After having arm surgery had to have an indwelling cath, now after five years thats pretty useless leaking most of the time. So today Im off to the PA to find out about the Super Pubic Catheter. Don’t mind telling you I’m terrified. I have full feeling where it will go and I guess I just don’t want to have to deal with the whole thing. wish we could empty it once a year wouldn’t that be great. :-). Thanks for your info on this page, Having this hospital appointment in relation to my disability (fist in 20yrs) has actually put me on a real downer Eileen.

77. Hi Eileen.. just wanted to let you know I’m thinking of you xx I’m fed up of hospitals, stoma and pain once a year.. we should be so lucky! made me smile! Also.. thinking of all you guys having ops this week and recently.. hoping all goes well xx

78. Hi all. I’ve had my op and am now back home. Its not quite going as I would hope. I was planning to use the SPC with just the valve and no leg bag. I tried and it failed with spectacular results. My bladder doesn’t seem to want to hold anything, where as before the op my bladder function was quite normal. I had the op for independance sake as opposed to reasons of bladder issues (if that makes sense!) So, I’ve relented and am using a free draining leg back until I can get to see my nurse later this week. Since my op I have had really bad back pain. The pain is at kidney level which is my concern. Also, my bowel function has not returned yet. Did anyone else have this problem?

79. Dear Graham: We’re missing you! All the input is good, but yours adds a great deal more! How are you doing????

80. Hi all, It has been some time since ive been on the site so thought I would just update on my experiences. After having the SPC fitted last August and having many problems with spasms,my consultant suggested botox treatment. I last reported that I was going into hospital at the end of January for botox on my bladder, to hopefully stop spasms. I had very positive results and after having it done was pain free for the 1st time since August, unfortunately it didnt last long and after only 2 weeks started with slight spasms that have got worse and worse again. I am now waiting to have my next botox treatment on April 30th when hopefully they will put a larger amount in so that I will be painfree for longer. I know most people have very positive results from having the SPC fitted but I still am yet to be convinced.

81. GREAT site. I had a Supra-pubic in January. Best move for me. No more irritation. Flow is good. I’m flushing by drinking a lot of water. This site has been so helpful. Keep up the good work. This has been the only reliable site that I could completely understand with real “user” opinions. THANKS

82. Hi Graham,
    Can Mandelimine be taken on-going at 1gm 4x daily or only if needed?

83. Hi Everyone, I’m back well tanned and fighting fit after a very enjoyable break. Thanks to all who offered answers while I was away, keep up the great work guys. Kate: Ask your Dr about Ditropan, Vesicare or another of the bladder anti-spasmodic drugs. I had trouble fitting new supra pubic catheters as my bladder had shrunk to golf ball size. Ditropan relaxes the bladder smooth muscle reducding spasm allowing the bladder to hold more. The average bladder holds 250-300 ml. If your regular bowel motion doesn’t return to normal 4-6 weeks post-op consult your Dr as soon as possible. Robert: Yes both, many take Mandelamine at that dose daily for life as a sediment and infection preventitive. As Anne states, it is an antibacterial not antibiotic. You should consult your Dr before making any changes in your medications.

84. Hi Graham & all….I haven’t written anything for a while now as I have been having terrible problems since my SPC was fitted 3rd Jan this year.
    As I told you, my op didn’t go to plan & I came out of hospital with both an SPC & urethral catheter fitted. I was also put on oxybutynin & cyclizine which made me ill & I stopped the cyclizine after reading Graham’s response to why I was prescribed it. I went to see a new Urologist who specializes in further surgical procedures who wants me to have an ‘Ileal Conduit’ as a ‘bladder neck closure’ in his opinion wouldn’t work! He also informed me that there is a risk to life due to DVT’s & pneumonia occurring post surgery which is slightly higher for me due to being immobile & that I would have to have my blood thinned before & after. I was supposed to have been contacted by a stoma nurse who would explain what equipment is involved which I am still waiting to hear from. He told me that I could stop taking the oxybutynin which obviously wasn’t working, but I restarted them due to the level of pain without them. When my district nurse came to change my urethral catheter, she couldn’t get another one in & then another DN came & inflated two catheters down below as she wasn’t sure which one was in the proper place & left me for half an hour in that state…(One SPC & 2 Urethral catheters at same time.) If my carer wasn’t here & saw it for herself, I don’t think anyone would have believed me. Half hour later, she returned with the head District Nurse who removed both as neither were in correctly & I was so sore, I refused to let them try again for a week for me to recover. The following friday a try was made again without success saying that there is something blocking the insertion. I go to the hospital this Monday the 6th for my first SPC change & I am dreading it. I feel like telling them to take it out as it has been more trouble than I had before. I have a constant feeling to bare down constantly & although I have no pain around the wound, only when the tube is touched, the pain inside is unbearable & it is affecting my bowel movements which is mainly constipation or watery diarrhoea since my op. I am also bleeding from the bowel at times & don’t know how much more I can take. I don’t even want to get out of my bed daily & feel so tired all the time. Sorry to be on a downer, but wonder if you know anything about an Ileal Conduit? Kate: I had back problems as you described at kidney level after SPC fitted & I was told that it was the way they have you on the operation table during the surgery. It did go away for me after a little while.

85. Hi Suzan, sorry to hear things are still not going well for you. Is the supra pubic catheter a silicone foley and can you rotate it freely several times? I sounds like it may be stuck. You can Google the facts, so I’ll speak specifics of Ileal to you. An Ileal Conduit or Ileal Loop is usually only performed on people who lose their bladder. There is relatively nothing wrong with yours is there? Would they still take it out? And if so, as in most cases the Ileal Conduit proceedure is not reversible. I would stay on Oxybutynin, if you leave one on your tounge you’ll find it numbs, it has a numbing effect on your bladder too, reducing pain. Is your specialist aware you’re bleeding from the bowel? With an Ileal Conduit part of the bowel is used. I’m certainly no Urologist but it seems radical, like curing a sore thumb by cutting it off. I suggest you exhaust any and all other avenues, medications etc. so if you do then go for an Ileal Conduit you hopefully won’t have regret.

86. Thanks for the quick response Graham…I have just tried to turn the catheter but I can’t as I said in my previous post, it is very painful if the tube is touched. My tube is clear colour with a red line going through it size 16 with a 15ml ball I think. My urethral catheters are a tan colour. I have the SPC changed tomorrow with a SPC specialist at the hospital & will mention the bleeding & bowel problems along with the amount of pain I have but I don’t see the uroligist until the Thursday this week. I didn’t mention to you that I also lose blood through the SPC regularly too. Hopefully tomorrow, I will feel much better! Thanks again. x

87. Hi Suzan, the body constantly tries to expel the catheter and heal, seal the wound, not only at the catheter site but where it enters the bladder. Bladders heal quickly as urine in your blood stream is not good. A catheter can become stuck in this process. You can imagine when laying down the bladder is about two inches from skin surface, when sitting up or moving this distance will vary. If a catheter becomes sealed, stuck at either or worse both site and bladder it’s going to pull and hurt. It usually results in bladder trauma and blood appears in the urine. Your symptoms present this. If so, you should notice an improvement in the days following the catheter change. In the article I mention friends who rotate their cath frequently as a preventitive. I don’t and after three months it’s often stuck requiring a firm pull to break the seal. Ask for long term silicone foley catheters that offer high resistance to sticking (usually green). I’ve heard silver coated catheters are also good for non-stick, and try frequent turning.

88. WELCOME BACK GRAHAM!!!! You sound like you had a great vacation! Good for you. I will make this briefer than my ill-fated last message. Bill’s Urologist recently decided the Oxybutynin, due to an extremely dry (froggie voice) type mouth that he stated all the anti-cholinergics would do. However, back comes the spasms, so he told me I could use my discretion on how much to give him when he has a problem. Not a great, or even good solution. So I asked Bill’s Neurologist, who stated that he didn’t see the benefit in that med. (Oxybutynin.) anyway for continued spasms and suggested we bring him into Boston for Botox Rxs,(differing degrees of success reported, mostly temporary relief). Boston is a difficult trip for Bill, unless absolutely necessary, which I haven’t been convinced of (its benefit) yet.. enough to warrant all that. I would really like YOUR take. I realize you’re not an MD.. I just want your opinion. Thank you ever so much!

89. Hi Terrie, I’m a wheelchair user and found when I 1st had the Supra Pubic Catheter fitted I had considerable pain from the site once there was urine in my leg bag because the weight pulled down on my site. My carers suggested wearing a G strape around my thigh, which takes all the weight from the leg bag, and then my leg bag fits around the side of my shin into a Uriplan leg sleeve. Leaving the tap on the inner side of my leg down by my ankle, which is then very accessable for emptying. I find that although it goes from top to bottom of my leg it is all held firmly and is quite comfortable and because it is all held in place i feel safer when im out and about that its not going to come undone in any way. Also you mention the unknown of the 1st catheter change, I have now had 3 changes done: the 1st of which was awful and took 3 district nurses to remove, it was so bad because each time they tried to pull it out the spasms i was having kept a hold of it inside and the pain was terrible. So after that experience I was very very nervous about having to have it changed again but the 2 further changes have been perfect, I cant really say I even had any discomfort never mind pain and it came out so easily, and quickly. So you should have no problem at all !! I hope my experiences help answer a few questions for you. Take care Terrie !!

90. Hi Terrie.. You should not have your bag so high, it should be lower than your sitting position. I had the same problem & Graham kindly helped me by posting some photos on the forum of how his is placed. I got my wheelchair department technician to visit & showed her Graham’s photo’s & she picked up her son’s Nike bag which his trainers had come in & used it to put it on the front of my wheelchair with those plastic tie straps & my carer’s put my two 2 litre bags in which solved a big problem for me, in that I can keep my dignity when I am out. Graham will be able to inform you better than me. I don’t use the G straps as I just use some micro tape to hold it in place & it works well for me. You could also try uriplan leg sleeve holders which you fit the bag into. Graham I went to the hospital on Monday for my first Super Pubic Catheter change which should have been done by a specialist SPC nurse, but when I told her the problems I was having, she got my Consultant who did my op to come & see me & he suggested that he would put a flexi black cable with a camera on the end (can’t remember the name, but it starts with C!)They clamped off the SPC while they filled my bladder with water & he was able to see why the the urethral would not go beyond a certain point. He did manage to put an indwelling in & then he tackled the SPC change which I wasn’t expecting it at the moment he did it & I screamed as the pain was unbearable & went right through my body from my head to toes & they had to give me some oxygen to calm me down & stop my body shaking. They didn’t use any numbing gel or anything which I thought they would. My good leg shot up & nearly kicked him in the face lol. There was 4 urologists (men) & one female who was at the side of me, but I felt very exposed as the men were at the other end. I told my original consultant about what they wanted to do & that I hadn’t seen the Consultant who I should have seen & he said that he would make sure that when I attended my appointment on the 9th he would also arrange to be there! Next day his secretary phoned to say that Mr Khan would not be there so they had cancelled my appointment for tomorrow & to wait for a new appointment. One of the urologists in theatre made a suggestion to my Consultant about trying the sling method which is less invasive then the conduit but I have no idea what or how it is done. When I type in google ‘sling’ the results are not what I am looking for! The good news is that after I had got over the shock of the SPC change, I woke up the next day feeling much better than I had in a long time & less pain, so I think it must have been the tube as I couldn’t touch it without it hurting, whereas now the new tube does not hurt when it is touched to clean around it. It’s a pretty blue coloured one, but I don’t know what make it is & my urethral is one I took with me which is a Foley. In a post above you mention the silver coated catheters which I don’t know whether you’re aware, they can only stay in a max of 28 days & not for long term use. I have some here. I have taken myself off all the medication except the Oxybutynin & Tramadol which I will only use if pain is severe. If anyone knows about a sling would you be kind enough to post the information here please? Take care all & have a very happy Easter this coming weekend. x

91. Thanks Anne: I found this quote on the drug you mentioned, so with my ph of 8.3 will Mandelamine help? Before you start taking this medicine, check your urine with phenaphthazine paper or another test to see if it is acid. Your urine must be acidic (pH 5.5 or below) for this medicine to work properly.

92. Hi Jeff: It is confusing, and I will attempt to clarify it as best I can, but you really need an MD overseeing this. Normal pH levels differ… I simply gave you the in-between one, on a trusted site I use. Also stated was that pH can vary at different times of the day, tending to be more acidic after sleeping/fasting, than later in day when and after your body digests food.

    This site also places YOUR pH (?time of day you took it) close to the unheathy level of above 8.5, which I am wondering about. Have it checked again, following instructions to a “T”. Bill’s pH lately has not been quite as low as 5.5, but the Mandelamine (known under many different names, with possibly many different ramifications and differences) works on him. Mandelmine, etc. is an older antibacterial, sometimes called a urinary antiseptic… NOT an antibiotic, but some MD’s don’t like to use it anymore.

    Your MD must determine your answer… but I, personally would find out why my pH was 8.3…could indicate infection or other process. Too much info’ for purposes of this post, but I remember Graham discussing it a while back, so check all former info’ and posts, including archives…like I stated. On this site, as far as I know none of us are MD’s, so it should be used as a guideline only.

    I guess that what I’m saying is that this med., like most others can differ in it’s use and affectiveness, but it’s worth your checking it out w/your MD, because if he/you can get your pH down, it can really help with the sediment, (bordering on infection, r/t foreign object body wants to expell, as explained previously by Graham and others).

    Hope I’ve helped, and not confused you further. There is a lot to this stuff that can’t be explained away in a short post! Good luck, I understand your frustration! Keep me posted. Anne

93. Randy: It’s highly likely you have a bad UTI (Urinary Tract Infection). Age and quadriplegia don’t typically have great impact on supra pubic catheter users, no more than the expected incontinence etc with ageing. Your spc should be well settled by 4 months. If you’re a heavy guy the leaking and uncomfortable are common. Have your Dr take a urine sample, test for infection and see if that eases your symptoms.

    Jeff: Part of the active constituent in Mandelamine requires a pH lower than 5 to effectively convert to formaldehyde in urine. This formaldehyde acts to kill off common bacteria preventing infection and lowering sediment levels. You can take Mandelamine with Ditropan, it’s also known as Hiprex and Urex, can be taken twice daily, if once only take it nightly.

    As Anne says an 8.5 pH is out of the healthy range, so is less than 6 but you need to find what works best for you. Irrigating a supra pubic catheter daily is a pain and opens avenue to infection. I would also cease them if you find Hiprex of benefit and keep drinking the 3+litres of fluids daily.

94. I feel so confused, frustrated, & alone!. I’m a 41-year old male with Cerebral Palsy who currently uses a foley, but it was just suggested to me by a urologist to have a Super Pubic Catheter due to me being young & needing a catheter for long term. Knowing absolutely nothing about nor ever hearing about the SPC according to the urologist it sounded like such an ideal solution & a simple procedure. I can’t tell how thrilled & relieved I felt I have it set up to be performed next month.

    When I returned home which is in a long-term nursing facility & told my primary 7-3 care nurse her response was, “Oh, they can be messy & you have to change the gauze or dressing every day.” She didn’t seem to be in too much in favor of the SPC, yet the RN (at the nursing facility) thought that it was better for me.

    The urologist never mentioned this & you need to understand where I’m coming from. The nurses or caretakers in where I reside are for the most part some are good & caring, some are, average to fair, & some are just plainly sloppy, lazy, & uncaring. And I have no control over who I get from day to day. My thing has always been to try to limit the least amount of care/ help I need because so many of these caretakers are so hot & cold (unpredictable) & are just in one big rush to get done & sit down.

    Then I go on the Internet & do some research, came upon this site & read many of the positive & negative experiences. Everyone has a different story & you wonder how your procedure will go & the long term affects — will I suffer with endless pain & headaches? I have so many concerns & unanswered questions. I can’t called the urologist myself & as I said I hate asking for help; these people here are just funny. It’s like you have to try & read their faces & try to figure out what mood they’re in.

    My first question is, I sit very straight up (almost at a 90 degrees) in my power chair; I have to in order to be able to drive. Is this going to be a problem with the SPC & how I’m sitting? Will it clog or kink up on me? How much pain should I expect to in cure & for how long? What if I can’t or don’t have access to drinking 3-liters of water a day? then what? The nurses do fill up my water bottle which sits on my desk & it’s probably is only a liter.

    Once caretakers get you up & ready I sense that they really don’t want to be bothered. I stress over EVERYTHING! Believe me, I’m totally stressed out over this & don’t know where to turn. Maybe I ought to just stick with the foley for now, I don’t know? This whole urinary bladder issue has been a real stressor for me & I just thought that the SPC was the magic answer. I know that I may sound like a child, but I’m just so afraid in not knowing where to turn. -Dave

95. Don’t worry, Dave! This site will help you if you’re willing to read all of Graham’s suggestions located previous to posts on this site. Also, read the posts pertaining to your problem! You can learn from our mistakes.

    My friend’s SPC is finally working great, but unfortuately his Urologist had other ideas that we just wasted time on. I am his RN caregiver, and although you must still go by your MD, you can perhaps, like I did…”talk” him into at least trying the suggestions here. Most of them ultimately “worked like a charm”, and it is SUCH an improvement over an indwelling.

    Your “Nurse” was wrong in giving you HER limited opinion on SPT wound care. Although the site is irritated @ X’s, after it “heals over” (refer to Graham’s notes) it is little to NO problem. I just keep Bill’s clean w/a saline wipe and a dab of Antibiotic ointment, and a DSD if and when needed. It’s never been infected, & Graham has had a good outcome with his. Hope I have helped… but you can be helped more by reding everything related on this site! Good luck! Anne

96. Dave: Since I left out answers to some of your ?’s I’ll try to do it now. Bill sits up ALL day, we just position his SPC device so it is draining via gravity. Once in awhile he realizes it is kinked so due to discomfort we reposition it. I also “twist” it daily to make catheter changes even easier than the minor problem they are. (Again, addressed previously in posts &/or notes). “Squeaky valves get the most oil”!!!!!SPEAK UP about getting enough fluids to prevent a UTI!!!

    You must also have some w/your meals, which might add up. 240cc=1 cup, or 8 ounces. 1000 cc’s, or milliliters= about a quart, or 32(ish) ounces or a Liter. (cc’s and ml’s are, for our purposes interchangeable). Institutional care is tough, as they are always cutting on help and you never know who or “what” your caregver will be day to day.

    I wish you could go home w/services, or get into an assisted living situation w/services. Relax, you’re going to do fine! If you have to stay in that facility be assertive (not demanding). Kill them w/kindness and you’ll also get dividends! Regards, Anne

97. Hi Anne & all. Thankyou Anne for your generous response, kindness & encouragement. I wish I could say I no longer have any concerns & questions, but I do. My stress level for now has slightly gone down, but I’m not getting it done until June. For those of you on this site who had bad experiences I’m so sorry & I don’t doubt any of your hardships, it makes me anxious & concerned.

    I’m trying to collect data pertaining to the Super Pubic Catheter, to see what I’m getting myself into (the pros & cons) & just to have an idea on what to expect afterwards. In addition to, maybe making some new friends along the way.

    Anne, you being a RN, I wouldn’t mind developing a friendship with you because you can be a real asset! My RN here at the nursing facility talked to me once last week & told me that many residence at the facility have SPC’S, but I’m not completely convinced. I want to know how knowledgeable MY LPN’S are in changing the SPC, how often, & etc.

    Some questions that maybe Graham & you might be able to address are:

    1) For my own security & comfort (& I know that I’m repeating my same question) I sit straight up tall & erect (for a lack of a better word) :) in my power chair all day long. I can’t lean back even slightly because then I wouldn’t be able to drive my power chair nor type on my computer via using a head-pointer. My worry with sitting as such — will it affect my SPC internally drainage-wise? Does anyone understand my question?

    2) When people talk about their SPC getting “Kinked” what exactly does that mean? Are they talking about internally or the external tubing?

    3) Granted, everyone’s body is different, but on average how long will the healing process take & will I feel a lot of discomfort & pain?

    4) Now I’m talking Flowmax & Avodart, will I need to take another med?

    5) How often on average does one change his/her SPC? Is once a month reasonable & again is changing the SPC discomforting & painful? As you can tell I DO NOT like pain! But who does, right. Besides my Cerebral Palsy I also suffer with another illness, depression, so. thanks for listening & your help to all.

98. I’d like Graham to address this past one of Dave’s.

    Geoff, you needn’t worry… many Rx’s work out well on SPC sites depending on the skin. FYO: Bill’s Urologist agrees with using A&D/or Bacitracin with any increased irritation/inflammation, after cleansing the area. That, my friend works for Bill. – Anne

99. Geoff: Yes you can. Things like topical antibiotics and aloe vera are no problem when needed but I don’t recommend prolonged continual use.

    Dave: I can answer all your questions with one word, reversible. No one can tell if it will remain painful for you or just what you will experience. To stress and worry about it helps no one least of all you. Go for it, if it doesn’t work out take it out and resume your old method, the Supra Pubic Catheter site will heal over.

    To set your mind at ease: 1) No, sitting bolt upright or laying face down, fat skinny tall or short it will drain fine. 2) External tubing like a drainage bag. 3) 4-6 weeks. 4) Flowmax and Avodart are for an enlaged prostate, nothing to do with SPC. Most with an SPC find Vesicare (or similar) and Hiprex of benefit, consult your Doctor. 5) Frequency of changing depends on catheter life, some catheters are good for 1 month others 3 and should be changed accordingly void of complications. When done carefully and correctly it’s relatively painless. 6) Relax, it’s always reversible

100. Dennis: At 2mo how it is now is probably how it will stay. Keep it as dry and sterile as you can, limit physical activity and avoid pulling on the catheter for the best chance at healing. Exposure to sunlight daily can also help the process. It could also be worth your Doctor taking a swab to test for a site infection.

     Erin: You could try an alcohol wipe. Something stronger I know will work is nail polish remover but do not get it on his skin/site! Ouch