Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Leslie,

   I just checked out Bill’s website info and it doean’s seem to have the bag you are looking for. But a couple of the bags might be more comfortable against yout skin and you can also get coth type straps seperate that might be better than the current elastic straps. I’m going to order a couple of them.

   June

2. Thank you June & Bill for the info that you have. It is appreciated!

3. Hi Leslie, did you try thigh bags? I know you said you don’t want to use a cover but I think you’re crazy not to. A cover will solve the yellow pee, muffle slooshing sounds, and keep plastic off your skin. Here is a thigh bag brochure pdf. I’m sure you can source these in the USA. I have a buddy who lives in shorts and uses these.

   It does sound like your supra pubic catheter was to low. Hair promotes bacteria and as the site rarely heals hair can stick and pull, be hard to clean, and probably a little smelly. I am 5″10′ my original site ~pulls up shirt~ that was 4 inches below belly button, was re-sited an inch higher this year. If they install yours higher you should drain with a thigh bag just fine.

   As your MS progresses you will become more reliant on a wheelchair. I used to use a leg bag (was a reusable brownish rubber one) but now simply pop a 2 ltr overnight bag in a cover and hide it under my power wheelchair. I change it every 3 or 4 weeks. I can go all day long without emptying. No more wet shoes. No more connecting and disconnecting. No more cleaning leg bags. No more freaking people out who think my penis is so long I can pee out the leg of my jeans.

4. Hi Grahame. As previously mentioned, I am having the SPC put in on Thursday so I am interested as to it’s siting. Unfortunately, I am rather hirsute, so there is pretty much hair all over my belly. It sounds like this could cause some problems. Do you have to tape the catheter pipe to the belly before it attaches to the leg bag? If so, it sounds like I am in for some free hair removal!!

   Currently my leg bag has a capacity of 800 mls. It sounds as if this will be filling faster than at the moment and requiring me to find toilets. Does anybody use a tap to close the catheter off for some time and allow the bladder to fill to a certain point. I read that this is better in the long run. Is this true?

   Cheers,

   Les

5. Hi Les, you do not need to tape down an SPC with thigh, leg, overnight bag or tap. It should not hurt kink or leak when you bend over. It should not be visable in tighty whities but may be in a g-string. You should drink 3 liters/day. Expect to empty an 800cc leg bag 3-4 times/day (the average not-a-plegic person pee’s 5-6 timesa/day). Retaining urine can help to strech the bladder keeping it’s natural form of 600cc capacity. Retaining urine for to long can cause sediment build up, urinary tract and kidney infections, and long term may lead to renal failure. For these reasons supra pubic catheter users are advised to keep their drainage device lower than the catheter and if needed take an anticholinergic drug to reduce overactive bladder symptoms. You should keep hair trimed back away from the superpubic site, other than that you can keep your man rug.

6. Hi. new to your site. Loved it so far. My mom (86) has a spt. She complains of so much pain in her bladder. She can’t even tough her stomach. They have her on Oxbutynin but I don’t think it is helping. She can’t even stand up straight because of the pain. She has a bad back and her bladder was weaken due to strokes. I am thinking her bladder can’t support the bag. We tried and ace bandage around her stomach today, didn’t help. Any suggestions?

7. Hi Sue, how do you mean her bladder can’t support the bag? A urostomy is very different to a supra pubic catheter (tube). No weight should ever be placed on an SPC. Approx a foot of catheter should protude beyond the lower abdominal wall where a drainage device (tap, bag or other collection device) is connected to the end of it. There should be ample length of tubing on the collection device to avoid pulling on the catheter. If that is not happening your poor Mum will certainly be in excruciating pain.

   Could you please describe the plumbing or put up a photo so we can be sure what’s going on to best help you guys.

8. Hi

   She is in so much pain if the tube moves at all. She uses the leg bag. Her stomach is so very tender. I have to be very careful just changing the dressing. She got her first SPT on Sept 16th we had no trouble for a month then in October they changed it and she has been in pain ever since.

9. There are three common causes of that kind of hypersensitivity. I suggest an ultrasound to ensure the catheter is positioned correctly and that there are no stones or other blockages. Also have a urine sample tested for urinary tract infections. Pain killers and lidocaine (numbing gels) may give some temporary relief but fixing the cause would of course be a better solution. Lidocaine can have dangerous side effects in seniors so please consult a doctor first. Additionally some find silver coated silicone foley catheters cause less irritation. Hope that helps Sue.

10. Who the hell are these “healthcare” people that leave anyone, let alone an 86 year old person in such agony?

    I wish for the days when a pain emulator is created and given to “healthcare” workers so they can experience the pains of such that they deal with. It might make them more timely in their treatments.

    Graham is an example of a great person that does things for the right reasons. He also has one thing that many health practioners, regardless of surgeon, doctor,professor status do not have…… a real innate understanding of catheters and all of the complications that go with it, not to mention the additional complications of spinal cord issues and how they cause a multitude of additional troubles.

    I’ve been having much fun with my catheter(s) now that they are not seating properly and seem to be closing off the rectum meaning I need extra laxatives to try and pass or do some syringe enema style -dilate the rectum until the path opens up – trickery….great fun all to avoid any blood loss issues caused by hemmoroids and bowel movement/bladder/catheter tip rubbing/conflicts. The conflict also causes urine output restrictions.

    Stll, could be worse eh…… although I’m bored of saying that. x.x

    Graham, how is ultrasound used to detect catheter location? Can it actually image a catheter in situ?
    http://www.nature.com/sc/journal/v40/n10/full/3101385a.html Hmmmmm, i’ll remember the potential for ultrasound…..

    Oh, for a hollywood lifestyle, minus the meaningless parts of it. oh…not much left.
    Good health to all of you….. :) or….at least as good as it can be..

11. I still have some contractions, sometimes I can find a reason. I may have a kink in the tubing, I may need to be repositioned, or need to have my bag emptied or have a BM. I also may have had to much caffeine or gone off schedule with my meds. I track my fluid intake, if I don’t feel well it is an effort to get enough fluids to keep my bladder happy. When I have gone through my checklist and still have no answer I check my urine for signs of infection and take my temp and track it. As we get to know our new bodies we will start to see new patterns, as we learn of new products that may ease our discomfort we can experiment to see what works (for now). Since many of us have ever changing bodies, what worked before may need to be re-evaluated. My priorities are no tube tugs and no infections caused by me or my caregivers due to carelessness.
    My new Silastic catheter is the the most flexible non irritating tube they have used with me. It is a Bard product (www.bardmedical.com) and I am able to use a statlock foley 2-way catheter stabilization device (www.statlock.com) on top of my upper thigh. Above my knee I use a latex free Dale hold in place foley catheter wide leg band (www.dalemed.com) product # H8410 316 1. I keep it fairly loose, it is just an extra precaution to avoid tube tugs. It is attatched to the tube from my drainage bag, my statlock is attached to my catheter leaving plenty of slack for comfort and not so much that it could get kinked or caught on anything during transfers.
    What works for me may not work for anyone else, but it may give ideas for others to try. Unfiltered beer was a great suggestion I have adopted and enjoy very much.

12. Laurie, whatever is going on, don’t go off your meds unless the doc says to or you definitely know they are causing problems. It seems like you know a of the things that throw you off like too much caffeine and not taking your meds.

    My only issue continus be odor. I can put a leg new bag on in the morning and if it happens to get 3/4 full before I can empty it, then the odors start up again. Am using the silver gel coated tubing and it usually works for about 3 weeks before the odors get to me. I’m very self-conscious about odors and it drives me nuts. I was checking out one of the websites and founjd these bags Coloplast-Mentor Reusable Leg Bags but at $35 a bag, I wonder how long they would last. They are a 2 layer bag and I was wondering if anyone has ever tried them?

    Les, I hope your surgery went well today! Let us know how are doing.
    June

13. Hi Sue, sorry to hear about your mum. During my urethra catheter days, things were going fine until my neurologist did some tests on my bladder and then inserted the clinic’s catheter (up to then I had been using a $39 cath (most expensive, b/c I didn’t know any better. From that day on I was troubled with bladder pain increasing to the point that I had to remove the cath. Going back to the $39 caths no longer worked. I am now almost 3 months in with a new spc. The first couple of days I had terrible spasms, felt like my bladder was being shredded. I think it was caused by spasms allowing the balloon to touch the bladder wall. I use Enablex, no side effects, seems to work, but very expensive. Hope this helps.
    Irene

14. Well it’s been quiet this past week so I thought I’d pass on my wonderful day to you all.

    Went in late this afternoon fo a tube change. Nurse was having a problem with the insertion so she called in a doc on duty at the office to help. Long story story short. After I was home I felt uncomfortable and checked things out, and the balloon was coming out of my vagina. Called the office, and left a message with the answering service. One of the docs called back. Told him what was going on. He said the tubing could have punctured the bladder wall and ended where it is now. He asked if I was in any pain or bleeding. I said with MS, pain doesn’t come out like a normal person and as of yet no bleeding. He said I could call first thing in the AM and get in to see my regular doc. He also said this is not uncommon. that the bladders’ wall can weaken over time with tube changes. Or the tube could have gone into the uretha and punched a hole in it.

    I’ve had my Spc for 13 months and have the tubing changed every 4 weeks. Now I’m not sure what will happern next. Kind of scared right now.

    I’ll wait until morning to see what happens and let you all know.

    This is not how I imangined getting a ball between my legs after so many years~LOL

15. Hi Jinx, I would call that malpractice. It is uncommon, the response incorrect and lack of immediate action entirely inappropriate. These people need to be reported. If their guesses were even correct, to “have a lie down and see if it goes away” approach is negligence at best. I’m glad you have a sense of humour because most would be freaking out, and very unhappy.

    Now, the most common possibility is that the supra pubic catheter has been inserted too far. It’s as simple as that. The catheter should enter the bladder and stop there. Not be pushed on up a ureter to poke a kidney, not down the urethra out urethral orifice or worse, punched through urethral wall and out vagina. I’m surprised they didn’t pull out a battery drill and call a plumber.

    Deflate the balloon and slowly withdraw the catheter. Stop when more than a few drops of urine flow from the catheter, this indicates the catheter eyelets are in the bladder. The balloon can be re-inflated. Keep in mind that catheter exited your body and is not sterile. I would completely withdraw it and replace.

    I have suffered similar before Jinx at the hands of carless doctors. It is only “not uncommon” to a crap doctor or nurse because they hurt people on a daily basis. I advise marking the old catheter with pen at the skins surface prior to changing it. Then you have a great guide as to how far the new goes in. I hope you are all fixed and doing well.

16. Graham, Thanks for your reply. I made it thru the nite with no problem except for lack of sleep from worrying. Called the doc 1st thing in the morning. Person answering tried to put me off saying I could see the PA later that morning and i SAID NO! I needed to be seen ASAP. She got the nurse on and I told her the situation and that I had a full bladder with no way for it to empty. (The rumors are true! If there’s something in a woman’s vagina, she can’t pee) The nurse checked the notes from the doc the nite before and she told me to come in immediately. Got there, didn’t have to wait. The nurse helped me on the table and I told her to get plenty of towels and the wet vac ready because the room was gonna be flooded as soon as the doc did what he needed to do. Scan showed a full bladder (DUH!)

    Doc came in, I explained the situation.n He asked if he could do a vaginal exam. Of course I said YES!!! Hasn’t been used for awhile so please be gentle with me. Yep, the balloon was there (but no clowns). He said it was a 1 in a million thing. the bad doc had pushed the tubing down the urethra. He repositioned the tubing and I flooded the room. LOL

    He said I shouldn’t have any problems but to call on Monday if I had any problems over the weekend. He kind of explained things but I was just so relieved (no pun intended) to have an empty bladder I didn’t pay enough attention. I’m not a plumber so I don’t understand how it all works, just that the parts are close together (maybe attached). He did say there didn’t seem to be any damage done.

    will write about my 2nd problem later. Not the spc.

17. Female Plumbing 101: image courtesy of emedicinehealth.com
    

    You can see in this image, even in the case of a prolapse bladder or urethra it would take considerable force to push a catheter through the membrane and tissue that seperate urethra and vagina. If it was punctured, it should heal over. As we know however, a supra pubic catheter should never have entered the urethra or vaginal passage in the first place.

    You would be a one in a million if born with the two chambers somehow connected or conjoined. I imagine you would have noticed leaking urine from the vagina during sexual intercourse, or even just in general, if that were the case. Anyway, I’m glad you got it sorted Jinx, take it easy hun.

18. Thanks Graham. I’m just the one in a milllion that things happen to me. I’m pretty sure I now have an infection. My temp is always 97.6 or lower unless I have an infection going on. It’s at 99.9 as of a half hour ago.

    My 2nd problem is from sitting in the wheelchair. I have a stage 2 tushie wound that probably started as a transfer scratch. Am now in the process of getting approval for a roho cushion. It’s not easy changing dressings myself but since I’m not homebound, Can’t get in-home nursing care. Referral went in Friday to go to the wound clinic at the hospital. Who knows when that will be approved, they also say I shouldn’t shower more than twice a week, Keep it dry but moist. Am I the crazy one here???? I’m sure the infection is from the Spc screw up.

    This past couple of weeks has been a real pain in the bladder/ass!

    Happy holidays to me

    June

19. June and Jinx are same person? To save confusion I can merge into one if you like, just tell me which name you want keep.

    I would only be surprised if you did not get an infection from what happened. My temp hit an extremely dangerous 43.7C (110.6F) last Thurs night. My head is still a bit foggy from it. The best thing I found for pa’s is store bought %99 aloe vera gel.

20. Either June or Jinx is fine. Right now my body is “Jinxed”

    110 Wow that is way too high.

    I’m using bacitracin (OTC antibiotic) to try and prevent infection on the tushie and keep moving around to keep pressure off the area for any lenght of time. Gotta pay out of pocket for a new soft cushion on my manual chair. Or find a nice squishie pillow to sit on when home.

    I am just so angry about the spc. I am allergic to most regular antibiotics so I wonder what they are gonna do for me on Monday. The silver gelcoated tube is sent to me once a month. Only 1 and no extras. It’s better for the odor issues i was having and I’m not looking forward to a new tube put in on Monday if that’s what is decided.

    But you know life sucks sometimes and we just have to deal with it. I’m gonna have a shot of Bailey’s, take some tylenol and go to bed.

    Thanks Graham for your support!!! TTYL

    June

21. A pressure area can smell much worse than any supra pubic catheter. Already fighting a wound to have a clueless doctor stuff up a catheter replacement is insult to injury, so frustrating. You should be angry, take your anger out on the phone and report them to higher authorities and health department before they hurt someone else.

    I like my baileys with a dash of butterscotch schnapps. I couldn’t merge your accounts, you’re not a registered member under either name.

22. Hi all

    June/Jinx sounds as though you’ve had a rough time….hope things get better soon, pressure sores are so difficult to deal with by yourself and can be slow to heal. I’ve had only 1, thankfully.

    I had my spc changed in hospital this week, no-one noticed catheter was not draining…..I kept telling them something was wrong but they kept saying just wait. Grrrrrr…… They had pushed catheter right through my urethra and inflated balloon – luckily for me it was outside my body at that point. They then decided to deflate balloon and pull it back in and left it. No apology or empathy, just a well it’s only an inch.

    I measured it and it was actually 2 inches, a very sore 2 inches as deflated balloons never go back down completely. I raised it as an issue with their customer service dept for them to say that no damage had been done and it was a minor complication. I ended up bleeding urethrally as a result of their incompetence.

    This was no where near as bad as your experience June, look after yourself and Graham is right when you feel well enough take the issue further. If nothing else they might be more careful in future with you or someone else. Here’s hoping you get better treatment tomorrow.

23. Hey Graham,

    I re-registered, accidentally used my e-mail address as my name.

    Gonna get me some butterscotch schnapps, Sounds good by itself.

    Temp is down this morning but I know it will rise by tonite. Tushie is sore. I hate that part the most I think.
    .
    Gonna complain tomorrow and at least get my insurance co-pay back.
    Will let you all know what happens,

    June

24. Hi there
    I am writing because as a fellow SPC’er, I feel very upset and angry with the negligence and lack of support services some of you are receiving. Much of your infections, discomfort, worry and pain, could be prevented if there was better medical support. From reading your posts, the medical fraternity sound like a bunch of negligent, pretend to be Gods, who think they know better! I’m guessing you live in the USA???
    Myself, I live in Australia. I travel nearly 3 hours every 4 – 6 weeks (my choice) to have my catheter changed by this amazing nurse that i trust. I watch with an eagle eye about everything she prepares. I purchase that service from my care funding.
    For almost four months now, I’ve been having a daily low dose antibiotic, lots of yoghurt, good greens and generally an ideal diet.
    But these days can’t be taken for granted, because it only takes one foul day for you to realise how painful, and sick you can be when the bladder has an infection.
    I just so wish I could do something on your behalf to make those freaken medical bastards accountable for the way you guys are receiving inadequate medical care for your SPCs.
    Take care
    United we are
    Jane

25. Cathspaz: I’m in Australia, there are many pious doctors here, one ruptured my uethra. Next day I went to hospital and had the catheter changed by another doctor who left me in a pool of my own blood with, “I send nurse.” When blood started to spill over onto the floor a nurse lifted my sheet and screamed. She was spewin’ and soon returned with the doctor and chief of staff who made him apologize. The bleeding subsided in a few more hours and ceased in two days.

    I tracked down the original pious doctor who ruptured my urethra and told her of her mistake, the resulting trauma, and my tip of marking the old catheter so you know how far new one goes in. She glared at me and said, “That’s a good tip to tell the next one who changes it.” No sorry or anything. I said, “No! I’m telling YOU so YOU don’t hurt someone else!” She left without another word.

    I’ll leave reforming the American health care system to Barack Obama.

    June: I still don’t see any registered user for you but it’s all good. You don’t have to be registered to post on this page. EDIT: I see now, you registered for our forum, it’s a seperate registration from our main website.

26. Compliments of the season everyone. I sure am looking forward to my first SPC change tomorrow. Had a violent puke-up session on the public school parking spot in the village. Hope no one has a nasty spill. I have been taking nitrofurantoin to get rid of my first bladder infection with the new SPC. I was feeling discouraged about infection so soon. Dr told me I had a respiratory infection which ended up in my bladder because I am now prone to these. Well, I didn’t know that the efficacy of this antibiotic is dependant on taking pills with food. So, back to the doc for another round of pills. So, tomorrow, armed with a permanent marker, I will be thinking of you June and Graham and all the people who have endured misadventures during a SPC change.

27. Hi

    Does anyone know if there is a catheter bag that is easy for someone with almost no vision to use? To update everyone my Mom’s spasms seem to be lessening but she is not able yet to switch the day bag to a night bag.

    thanks I love this blog

    Sue

28. Hey all! I’m still alive and hanging in there. Spoke with Nurse on Monday she talked with doctor and said there shouldn’t be any contamination issues. If the fever persisted to call back. Well it’s now Wednesday here and the temp goes up in the evening and normal by morning. No sense in calling back cuz now I have sinus issues swo I guess I just picked up germs from their office or waiting room.

    The spc is working fine and no issues going on that I know of. My bladder won’t talk to me so I guess it’s still angry. Oh well…..

    Cathspaz, I’m not angry and I know there is not much I can do. There are always going to be mistakes made and doctors screwing up. 20 Years ago it took me 2 years of different jerks and numerous tests, telling me there was nothing physically wrong with me. Basically I was told it was all in my head. Then I found a female doc who told me I wasn’t nuts (?) sent me to a neuro doc who definitively diagnosed MS.

    The others didn’t care enough to follow thru and didn’t know how to read the tests. They were just collecting money. One said if I didn’t quit smoking he was going to drop me as a patient. I just told him I was now dropping him as my doctor, Bye!

    Last week I was too scared to be angry and once it was corrected there was no reason to stay angry. It wouldn’t change anything. I’m very lucky that it wasn’t worse than it was.

    Haven’t had that much activity between my legs in a long time, so looking back, I can laugh at the fun parts of it all.

    Graham,

    Thanks so very much for leaving it all up to Obama. You are so very kind!!! It could all get worse next year with elections coming up. The only good thing about Mitt Romney is if he wins (God forbid) there will be more research for MS since his wife has it. But he was a lousy governor when he was here before.

    Sue, If your mom can’t us a magnifying glass or learn by touch, then maybe she will just have to use a night bag all the time. It can be covered up by taping it to the leg and long skirts if she is mobile or hooked on a wheelchair.

    June

29. I want to wish all a happy and safe holiday season!

    June

30. Hey Graham, and fellow SPC ppls,

    Its been months since i was last here, thats a good sign. Ive had 3 changes now at the continence clinic in bairnsdale and i highly rate those ladies! Mind you, Ive done it under a 2mg of valium, but it works and im in no pain, except for the last change the other day, it adhered a bit, and that stung. The trick is to cough really hard a few times and it slips out no problem!
    My husband even came in and watched, he was fascinated! Reckons he can do it, no different to changing over a fuel line in a car! Im not ready for my master mechanic togrease and oil change me yet, lol!
    Im also now working, changed my chef career over for training up hospitality cert 2-3 for a company. I get to travel, and make awsome money without exerting myself!My SPC hasnt given me grief except for a couple of embarassing ‘pop-offs’, bloody thing gets a bit slippery towards the 6 wks change mark. I recently had one as i was haveing an ultrasound for breast lumps, they found several, and i sat up in a panic and shock, and ‘pop’ off she came and i wee’d all over the table! The nurse was very helpful, and said no wonder i was upset!
    Sadly, i now have breast cancer to deal with. But I’m off to QLD on the 4th for a well earned 10days, and my boob can wait! When i come back, Its all on like donkey kong to fix me, again!!
    Anyway, You guys and girls have a …MERRY XMAS AND A HAPPY NEW YEAR!! And keep smiling, could be worse, you could be dead. Cheers!xxx

31. Hi all. Had my SPC now for just over two weeks and it seems to be working fine. I’m drinking plenty to keep it flushed through and sometimes forget to check the leg bag, because i was so used to feeling myself going, and when i do it is nearly ready to burst! The only real concern that i have is that the site is still weeping some gunge and bleeding a little. I did leave the dressing off to try and let it dry up, but i think that my clothing rubbed on it, made it sore and set if off bleeding again. How long does it take to dry up? There is also what looks like a lump of extra flesh growing on one side of the wound away from the pipe.

    It seems to have helped my bowels also. I am not getting as much discomfort as I was when my bladder was the size of a football most of the time!!

    Have a good Xmas to all and I’ll be sure to try and have a drink for all the names I’ve seen on the site!

    Cheers,

    Les

32. Hey Les, I’m glad everything went well for you! Don’t worry about the discharge. After a year mine still weeps and sometimes a little blood after a tube change. Just a minor inconvenience! Same with the xtra flesh. I think it’s just scar tissue.

    Enjoy the holidays and don’t forget to empty the bag every few hours with ALL the drinking you plan on doing!

    Gayle, Have a great vacation! BC Is not a death sentence anymore and you will be added to my prayers. I know a lot of survivors,my sister being one, and hopefully this is early enough that they can get it all.

    God Bless!

    June

33. Les,

    I had a little flesh along side the tube a couple times. The Doctor referred to it as granulation and treated it with silver nitrate that made it die back. Burned a little bit momentarily, but seemed to work.

    Merry Christmas to all. You have been a source of balance to me during this year as I adjusted to a new system of plumbing. You can’t really discuss this with just anybody. Thank you for you honesty and willingness to help.

34. Just had my first change. ‘I think it is in my vagina”, Yes, indeed it was so the Dr excused himself and proceeded to push it back in to my bladder. Well, at least I still have feeling. I forgot to mark the catheter tube before it was removed initially.

    Gayle, my sister is also a long term survivor, and her original prognosis was not good. I will add you to my prayers to the universe as well.

    Les, my spc is now 3months old and it just stopped oozing. I also had a skin formation that eventually sloughed off. However with the new change there ha been a new bit of draining, after 3 months the tube kind of hold on.

    Merry Christmas everyone and good health and some prosperity in the new year.

35. @Gayle… hon, love your photo.
    Thank you for your Christmas wishes. You’re amazing. Now the bloody breast cancer – bloody rotten thing. Well, I’m sure you will get over it because you are too determined not to let something like this to slow you down. Love your career change! Sounds really awesome. Have a merry Christmas and a great holiday in the sun.
    Cheers
    Jane

36. When skin is broken internal tissue (mostly fatty cells in cases of spc) can bulge outward, it resembles raw mince beef, called granulation (as Bill said) or “proud flesh” commonly. Peroxide, nitros-oxide etc can sear it off. Saltwater baths and exposure to sunlight are good alternative treatments for granulation and infected, weepy sites.

    Thank-you all for your well wishes and continued support of our website. May your glass be full and wee bag empty. Merry Christmas.

37. Les… Ive had mine for 9 mnths now, and i too experienced a mukky wound site for about 7 mnths, but, i was shown a technique that helps to dry with letting it breath and also protects it. And as for the flesh bit, it too will go away after a few changes. If your haveing a change under aneasthetic, ask the Dr if he can remedy that, just keep it clean, and change the dressing DAILY!!! sometimes twice if you have to.
    Dressing:… ( my incontinence clinic nurses were impressed with this, and now use it for others) …. Firstly, go to a chemist and buy; ELASTOPLAST soft feel compress, thier 8.5x5cm sterile compress’s, box of 10, also buy a roll of NEXCARE micropore tape 1/2″ x 360″ (width is half size of normal), then a roll of NEXCARE 1″ x360″, Its brown tape, user friendly to the skin, for taping the tube to your tummy, you should be ok with just taping it to your belly near where you loop it. With the compress, if your wound is very muckky, clean it, then fold the compress over, and cut a line half way down the middle, then a small “v”, so it looks kinda like tis ‘Y’. Then place the V bit under the tube, close it around, and use the white thin tape to put across to hold it. pull up your jox, and away you go! Do this every day, maybe even twice until it stops oozing so much, then when you feel its getting better, cut the compress in half, and use it, this way its breathing more. My nurses are pleased, as i had alot of trouble! I dont use anything on it, maybe some sterile NON alcohol wipes for you. Hope this helps. As long as you keep it washed and clean, it will eventually heal, but you will always have a little muck. REMEMBER: if it becomes too green and gooey, and smells funny, and your feeling tired and unwell ( flue like) then get to the Dr, as you may have a Staf infection!( i had one, got better on anti’s) Drink URAL also twice a day as this helps to tone down any stale sediment. And a PANADOL, or PANAMAX can help with the feeling of urgencey along with a 2mg of valium if the urethra is really tickly. Takes awhile for your body to realise this foreign object is here to stay!! If at all your not able to purchase any of what i advised due to where you live, let me know, I’ll gladly send some across! I’ll post a pic of my belly :) Take care Les, and a merry xmas mate! Your amongst a certain breed here, we are unique! :)

38. This is something I am going to be working on with my doctor very very soon I think.
    I’ll ask here.

    Has anyone experienced filled kidney feelings or been diagnosed as having kidney urine/liquid retention episodes even though the sp cath stilll flows easily at up to 300/400 maybe even 500ml per hour.

    It may be a problem with a catheter that is losing its position or becoming slightly blocked but I can’t really understand why I get this feeling if he cath is flowing.

    I can only summarise that a few days of excess liquid accumulates in the kidneys until a critical pressure is reached, not painful but a bloated feeling. If this pressure is reached, its distressing for between 3-10 hours. I havent been able to comfortably lie down since 5pm yesterday. I have to raise one knee to take the pressure off.

    Even now as soon as I get up, the pressure feeling goes. When I lie down again, it comes on again.

    I am just a person without any nerve injuries but who has a sp catheter due to urethral stricture/blockage.

    Im going to get the cath changed today, because I am tending to get blocking episodes between 5 and 9 days these days ( 5 days last one, now its been 5 days since this kidney filling feeling yet the nurses did a syringe trick on the cathter and pushed and sucked water noticeable without any pains or pressures in the bladder. I was expecting raw pain. It now feels turbulent.
    AS a sidenote, whilst waiting for surgery to enalble removal of this cathter for good, bladder permitting, I have had 6 catheter changes and made 3 reseating requests since oct 2011. Some of the reseats requests have only been made within 3 days of a change.

    I really feel for all of your pains btw. I am still lucky not to have suffered greatly , but the acute issues are tormentful. AS a person who dwells on these things before and after they occur, its mentally torturing.

    I also not that sometimes I have to have bowel movements to allow urine to pass again into the legbag. STrange but maybe that is more an indicator the the cath is on its way out or losing position. On bowel movements sometimes I get a shock wave through catheter and belly as if the bladder was caught by bowel movement. I’m on lots of laxatives……

    Any thoughts please and any site links where I can ask someone and get extra info.
    It is hard to get quick info from the nhs, unfortunately.

39. So here’s a question. I am thinking about doing some air travel in the next few months in the US. Any tips on dealing with TSA personnel? I don’t really want someone running their hand down my front and snagging my tube.

40. If a TSA official is running their hand down your front I think you have “bigger” things to worry about than snagging your catheter Bill. I travel quite a bit. The best thing to do is phone the airline you plan to travel with well in advance. Our forum has a travel section if you want more input.

41. I flew from the US to Costa Rica and also from the US to Canada, both times in a wheel chair, using a catheter. While I had a urethra catheter at the time I think the procedure is unchanged. A female security employee used the back of her hand (I am female) patting me down. When she felt the tubing or bag I told her what it was, and offered to show it to her. On one occasion I was taken to a private room with 2 employees and another time I was asked for permission to pat me in full view of other passengers. I was enclosed in a clear glass cubicle and our conversation could not be overheard. I agreed partly because of possible time delays. None of the searches were offensive in any way, and I thought the personnel were professional. One of the fringe benefits of obvious disability is being allowed to carry a large container of water for all your meds.

42. Just an update on what’s been happening. Last Thursday spent the night at the ER. Very high fever and dehydration. Bladder infection still not resolved. On new antibiotics. Infectiion is resistant to most all of the drugs I can take. Primary care doc order abdome4n CT tgo make sure no abceszs or anything else going on. It all come back to that doc who pushed the cath into thed uretha and then into vagina. the next day another doc then removed it from vagina and put it where it belonged in bladder. They still deny cross contamination. DUH. Gonna call a lawyer and see about malpractice lawsuits. I think this all exasserbatedd the tusshie wound problems and the MS. Tushie wound is now stage 3 and I’m on bed rest for 2 weeks.

    Hope everyone is having a better start to their New Year.

    June.

43. I just flew to Queensland, and had to get a clearance from my Dr by letter to say i had to carry my medical equipment including sterile scissors onboard. went well. Although, i think Ill pop on a leg bag on my way back as i felt a little full in the tummy flying at 37 thousand feet, was a bit umcomfortable, but nothing bad.

44. Gayle, shoot me an email via the quick contact form below if you want to meet up.

45. I am primary caregiver for my dad who is 86. He has had an SPC for about 10 years, and an artificial sphincter for the 8 years prior. (He had to have it removed when it stopped working, and could not get a replacement due to the extent of scar tissue in that area.)

    I have been reading through the comments on this site, and I am writing because my dad has been very frustrated with a problem he has had for years, and he can’t seem to get a straight answer from his urologist. It breaks my heart, and I am searching everywhere for an answer.

    Dad is very frail — has other chronic health issues that make enjoying life difficult. His biggest complaint is that although he has the SPC, he continues to get considerably wet from urine leaking from his penis. He has always taken great pride in his appearance, and is especially sensitive about the potential for odor due to the leaking. He always wears plenty of protection products, but he is never confident that he doesn’t smell. It is also a very unpleasant feeling for him when it happens suddenly, and it takes him a lot of time to “clean up,” only to have it happen again.

    His urologist suggested a penile “clamp” for his outings to ensure he won’t have any leaks, however, he can only wear it for about 3 hours total to be sure there are no circulation and skin integrity issues.

    My question is, is having urine leaking from his penis with an SPC normal? I can’t see anyone singing its praises if this is the case. I love my dad, and I want him to have the best quality of life possible while we can still manage his dimentia. Any suggestions/information would be MOST welcome and appreciated. Thank you!!

46. Ludec Lisa: Leaking urine from anywhere is not normal with a supra pubic catheter even when prostrate problems and weak sphincter muscles exist. The SPC should always be the path of least resistance for urine. Your fathers leaking could have many causes; artificial sphincter failure, sediment creating mild blockages, an overactive (spasmodic) bladder, incorrect catheter positioning, and so forth. An ultrasound or cistoscopy (camera up penis) may give a better insight. If that proves all fine ask about trialing some overactive bladder medications.

47. I have an spc–and I`m going on vacation–would it be ok to use a leg bag at night rather than a night drainage bag?—please advise–thank u

48. Josh, yes you can leave a leg bag on overnight. Just keep it at a lower height than your bladder and make sure when full it won’t pull on your catheter.

49. Hi

    Once again another question from my Mom. I am taping the tube better and it is lessening the pain and the leakage. Thank you. She said she only gets relief when she is wearing the night bag. During the day she says she has a strong urge to urinate and she doesn’t get relief even though the bag is filling up.
    Thanks Sue

50. I came to this site with only a few hours to decide whether to go through with the spc that the doctor had scheduled for the next day. I really wish that I would have read more in-depth. My surgery (on Sept 1) is just now healing. Thank you for this info as it was all I could find that evening. It should really be out there that this is a terrible thing to have done. For most of us, it is the only option. Believe it or not with 12 other serious conditions, one of which is Cerebral Palsy, the root of most others; I am still unable to get Social Security. I worked for 23 years, but only because I got one degree after another so that I could use my brain as obviously my body didn’t work. I now tell people–don’t do what I did. Go get the SSI and don’t feel bad about it at all. They are alot more likely to give you the money if you haven’t worked with the condition than if you have. Had I applied at 18–I would have received it easily. We can give millions to other countries, but I can’t get the money I paid into and need to live out the last few years of my life. If anyone finds advice in my frustrations, God Bless.

51. Sue,
    Could it be that the opening in the bag she is wearing during the day is partially blocked? I have a syringe sort of thing that I use for flushing out the bag and when I experience something similar to your mother, flushing it with that seems to free up the obstruction.

    Cassie,
    One good thing about SPC’s, as Graham often says, is that they are easily reversed. If the tube is removed the bladder closes up and you haven’t lost anything. But I wouldn’t give up on it quite yet. YOu are just getting to the part where the SPC becomes an easier way than the alternative of dealing with the urinary drainage. That doesn’t speak to the rest of your conditions, for which the answers aren’t that easy. God bless you as you deal with all that is before you.

52. Cassie,

    SSI or SSDI is hard to get. If you have your doctors fill out thed paperwork and also see a psychologist or psychiatrist and get them on board and have them add their comments it’s easier to get approved. The more doctors the better. Also you can’t earn more than $1000.00 a month

53. Hi,
    I am now 5 weeks into being the proud owner of an SPC and mostly it seems to be going OK. As far as the bladder/infection problems are concerned my urine is now crystal clear and draining well. The wound site is feeling (as far as I am able to feel being an incomplete quad) sore still and pulls. I am going to see my local doc tomorrow about it, as I also have a chunk of meat, or I should say granulation, sticking out, which is catching and bleeding. From what I have researched, after Graham’s informative reply, is that the doc will annoint the “meat” with silver nitrate to dry this up. Has anybody had this done, and does it work quickly? I would prefer not to have the wound covered as I believe it would be better in the long run, which it seems likely will be necessary.

    Also, on a more personal front, I am a bit concerned as to how any female partners may regard the pipe sticking out of my belly, should there be any sexual encounter. I know that I won’t have to worry about urisheath’s etc. but the SPC is only a matter of inches from you know who. Could that be offputting for a lady? Does it get in the way at all and what if it gets caught in the frenzy I would hope to induce? Any comments would be read with interest.

54. Les,

    The silver nitrate burns a little going on and takes a few days to make the granulation die off. I have avoided dressings. I think all they do is keep clothes a little cleaner ( not to mention pulling the skin when you take the tape off). Keeping hairs out of the area also reduces pulling.

    A lady who is offput probably isn’t going to be a keeper. I use a couple pieces of tape to remove the slack in the catheter and keep it close to the body.

55. I have 1 more question on my vacation concerns–Does anyone offer a
    an extention for my spc caterter?

56. My daughter has had an spc since march last year, after a few hiccups all settled and things were going well until a week before christmas when we noticed a really foul odour, since then the odour returns within two weeks of every cath change, tests come back clear so no infection, at the moment she is having it changed every two weeks just to get rid of the odour. Does anyone have any idea as to what the cause could be? She would be grateful for any idea’s. Thanks Bonnie.

57. Does anyone have an answer on how to know if an UTI is yeast or bacteria? The results for been coming back yeast, but I took a fluconazole several days ago. Today I am in so much pain. Thanks to all of you for your kindness and advice!!

58. Hi

    I need help again for my Mom. to recap she is almost 87, got her spt in September. She is in consant pain. if she move forward while sitting it is terrible. We are having the tube changed every 4 weeks. She had it changed last Wednesday and was in bed for 3 days because it was so painful. They give her medicine for spasms but I keep saying she is not having spasms she is in pain. The first month she didn’t have any pain but ever since they took out the original red tubing it has been painful. I tape up the tubes like it was explained earlier. When I change the gauge one her stomach I have to be extra careful because it is so sore to touch. I don’t think this is right. We are going back to her doctor on Friday and I want to tell him what the experts says (that is you). Thanks for any help you can give me Sue

59. Josh: make your own.

    Bonnie: Silver alloy catheters (coated on both internal and external surfaces) provide a significantly greater reduction in the development of bacteriuria and reduce the associated odour.

    Cassie: When a UTI test proves yeast infection it just means the bacteria grew from yeast.

    Sue: What did the doctor say? Taping it is good but have you been applying a numbing gel to the site etc? Something is definately not right. What about a second doctors opinion?

60. Hi

    The doctor says there isnt enough gravity pull when she uses the day bag and should use the night bag as much as possible. I explained that being legally blind makes it dangerous to be walking with a cord, also she can’t empty it herself. I had the nurse order me some extentions and I am going to try using the day bag as a night bag. I have mentioned a few times to my mom about going to another doctor.

61. Cassie – I used to get repeated fungal infections whenever on antibiotics, fungal infection always invaded my bladder too so I now take regular fluconazole.

    If I let it get away from me and wait too long then I am very sore after using anti-fungal feels – like having raw skin surfaces rubbed. It only lasts a day or two then clears up.

    Now I take anti-fungals weekly for 6 months and it is so much better, very few spasms.

62. Cassis……forgot to say, Graham’s right. A UTI is bacterial……..I just get fungal infections after treatment for UTI.

63. Yeah, women are more prone to cross-infection because their openings are closer together. Pregnant, sexually active and incontinent can also increase the incidence of UTI and other infections.

    Sue: what about a legbag?

64. My daughter who is eight has had a sp line in for a year now she has a neuropathic bladder which means it never fully empties she also has reflux on both sides, and 1 kidney is badly scarred and the other only slightly. Generally I would say having the sp line put in at 7 yrs old she coped quite well, until last week my daughters sp line just fell out ( because apparently the saline in the ballon had evaporated) n e way my daughter is a very anxious patient and is currently havin to under go a ga to have the sp line changed. My daughter had to wait 3 days for the procedure to be done and as expected the site had closed fully. They re opened the entry site and she was in a bit of pain afterwards but now 2 weeks on after the pain had settled for about a week she is complaining of the site being itchy and she has been scratching at it. The area looks slightly red but not inflamed just redness from the scratching she has been doing. My question is as nothing like this happened first time round is what could be causing this? I did think tht it could be entry sitre ” trying to heal” n e suggestions would be gr8 thanks

65. Hi Kizzy, swap her catheter out for a silicone foiley or even better a silver coated one. They cause less irritation than the standard laytex catheters hospitals use. Check catheter balloons monthly. Osmosis occurs and so it is common for them to deflate.

66. Kizzy,

    A Month after my SPC, I had a lot of itching around the site. My urologist said it was a fungus ( I believe. It was a while ago). Anyway he gave me a topical ointment of Nystatin and Triamcinolone Acetonide and it cleared up within a week. I have not had the problem since.

67. Good point Bill, I took it for granted she doesn’t have a site infection, but if unsure it would be worth testing for it, as itching is a common symptom of infection.

68. Hello,

    Has anyone ever experience a faulty all silicone catheter (folysil in my case) whereby the silicone water balloon coloured water valve is leaking slightly where it joins the silicone body?

    I didn’t clarify it as first, but I did think “hmm liquid on my whilst I’m lying down, maybe its the catheter end/leg bag joining point with a bit of urine.?”
    EVentually I concluded that some sterile water was leaking.
    After 10 hours of installation, this newly fitted catheter, had only 6ml out of 10ml when it was checked. Thats roughly 4ml in 10 hours. lol….

    I feel the join point must be faulty and I observed the increased leakage once the baloon was filled with a new 10ml at 9pm last night.
    It will be checked later today.
    Either this catheter is faulty or my bladder has so much strength from the years of straining and expected loss of elasticity and subsequent high pressure, that the balloon is getting squashed and the water channel just gets backpressured until it leaks at the weakest point (where coloured plastic valve is pushed into silicone housing”

    I hope this isnt the case and it doesn’t make sense because the previous folysil “lasted” 6 weeks although I did not test baloon water levels at all and no one else felt the need to check.

    I now note grahams info, check balloon levels once a month. It’s something I can easily do myself.

    There must be a failure rate of production even if its 1 in a 1000.???
    I’m going to check online now anyway.

69. I’m not familiar with Folysil but had 2 out of 10 Relene catheters failed recently. Deflated overnight, a side by side with similar catheter indicated pushing the 10cc syringe onto the inflation port to hard can in some way damage the valve. The best thing to do is report failures to the manufacturer so others won’t suffer the problems we face.

70. Thanks Graham. The port itself seems stable. Another sign which I have noticed is that a stream of clean small bubbles, all the same size, can appear in a line as they pass along the invisible balloon channel. I only realised as it was deflated and filled. This indicates air ingress at the join fail.

    I phoned coloplast earlier and will speak to their defect dept.
    Meanwhile, I’m sure the nurse will report this failure to her superiors who will want to know about these damaging issues.
    ____
    Just some notes for anyone reading.
    Results so far coloplast uk folysil catheter.

    Old folysil in place for 7 weeks… water loss at replacement = 5ml

    New folysil installed 10am friday 18th feb water loss at 8pm = 4ml. refilled with 10ml

    sat 11am water loss = 5ml, refilled with 8ml to test more fill-more loss theory.
    next check 11pm tonight.

71. well i had a supra feb 1 i was never told to put a bandage around the site. it’s been 3 weeks now and the site is finally looking ok. (no more oozing and redness is diminished.
    what is going to happen when they replace the supra? will i go through that terrible stage of clots and pain again? I don’t know if i could go through the pain again.
    i think my supra now is teflon and i think it is too short.
    any help would be extremely helpful

72. ist time –awesome site
    i had my supra jan 30 2012 after 13 years of urinary problems due to scarring of the urethra(radiation in 1997 for prostate cancer caused the stricture)
    no surgeon would operate on the stricture.
    however, the latest retention for the ist time was not caused by the stricture, but was probably caused from a growing prostate which caused a blockage and the urine backed into the kidneys. ie the supra was placed.

    my concerns now are twofold. one- i was never told to bandage the site
    and two- when they replace the supra will i again go through the stage of clots and unbearable pain?

73. Gene
    The only advice I could give you, is based on my 8 yr old daughters experience with a sp line which she has had for over a year now. The first time was always the worst because of a entry site being made and after about a week and a half she was fully active again. My daughter has had her sp line changed 12 weekly ever since, it’s a bit of a pain for her because she is such a nervous patient and has been mentally affected by what has gone on, at the minute she is having to undergo a general ( be put to sleep) to have her sp line changed but generally within a couple of hours after she is up again running about. And about the bandage bit my daughter has always felt more comfortable with a bandage over entry site which we change twice daily. Until recently ( due to a change in sp line) my daughter has never had a infection, but we went to the drs and got prescribed some anti biotic cream which has cleared it up. Some people i knw dont have a bandage so i think it generally think it depends on the person, my daughter is very active and enjoys horse riding and running so a bandage makes her feel more comfortable. Hope this has helped gene.

74. Gene,

    I had my radioactive seeds done in 2007. I started having stricture problems in 2009. Had 3 procedures to open the ureter over the next 2 years before we finally did an SPC last May. It’s been the best thing that has happened to me in 2 years. To your questions:

    I don’t cover the site with a bandage. I find the removal of tape more uncomfortable than a little seepage. And that doesn’t happen much any more.

    While the site was pretty tender for the first several weeks, it is really not uncomfortable at all and the tube changes are a pretty minor procedure. It feels a little funny when the old one is removed and the new one inserted, but that’s about it. I understand that is not everyone’s experience, but it has been mine.

    Something else you may want to consider as time goes on is the Rusch Belly Bag. It’s a drainage bag in sort of a fanny pack that goes under your clothes and gives much more mobility than the leg bag or night bag. Athomemedical.com seems to have the best prices.

    I hope you are as pleased as I have been with my SPC. It sure beats strictures and emergency room catheters.

75. bill and lizzy thanks for the help
    i just left the er- i had an infection and they cut the stitches that acted as an anchor. as soon as they cut the stitches the tube didn’t pull the skin and i felt much better. I don’t think i ever needed stitches. well this is all new to me and i appreciate all the kind advice. lizzy, your daughter is in my prayers. gene

76. Thank you gene that means a lot x

77. Gene,

    I think the stiches they use with the original procedure actually ended up being the major source of discomfort. Mine came lose by themselves but then poked the tender area whenever the SPC moved in or out a little. It’s going to get better from here.

78. Hi my husband had guillon barre syndrome last june and since then his bladder has not worked for 6 months he had a catheter put in every now and then it was taken out to see if he could pee by himself without success so a supra pubic was inserted, he tries to pee himself first and manages a small amount. Wanted to know if anyone else has been in this position if so what is the likelihood of his bladder working completely again any comments would be appreciated thankyou

79. Hi everyone, from reading the last few months of posts I realized when my site was repositioned it is now almost 4 inches lower. Graham mentioned ingrown hairs as a culprit for itching and path for bacteria. Hubby and I did some creative SPC trimming. A very pleasant new part of our patient care routine.
    Les, you asked if a lady would be put off by a tube, I can tell you my side as a lady with a tube. I thought my husband would never touch me again, after a long dry spell he confessed he was terrified of hurting me. We had to relearn how to communicate as lovers. I had to get over my fear of leaking at an intimate moment. Fear will rob you of time, something I refuse to waste.

80. Susan
    My daughter of 8 has a sp line and she can wee normally but the whole point of her having the sp line was tht weeing herself she could never fully empty her bladder herself which caused infections and scarring to her kidneys as she has reflux on both sides. She has had the sp line for a yr now and they have her doing bladder training, which is where she will wee as much as she can herself and the open the flip flo valve on the end of the sp line and empty the rest out, so tht her bladder gets used to being empty. The amount tht comes out through the sp line is gettin less and less which means tht the bladder training must be workin. She had bladder assessment done and the hospital were pleased with her progress but not enough for her to have the sp line taken out. Im not clear on what the future will hold but I knw for a while she will have to learn to Cathaterise herself but I don’t knw if this a life long thing as tht can’t really tell me. Hope this helps

81. bill thanks for the info
    yeah they cut the stiches and i’m much better and the infection is clearing up.
    bill i have two isssues of retention
    the first one was 13 years of retention caused by a stricture of the uretha/ i learned to live with it because no doctor in the eastcoast of usa would operate.(radiation of the prostate in 1997 caused the stricture)
    the second one was caused by the blockage of the ureters probably caused from a growing prostate- ie the supra was placed and so far everything seems ok. i can’t believe the change. i spent 13years with the smallest opening of the uretha imaginable. you can imagine my shock when after 13 years of having retention from a sticture of the uretha, my last blockage was caused by the ureters.
    stay in touch you people really help gene from boston

82. hi my name is Dennis some how my doc pushed hairs deep inside me wicth had to be cut out then he says it could not have been him my sergin says that they could only have come from my SP serg then a hair came out in my bed bag creepy but I feel better. Has anyone had this hapen to them.

    Dennis

83. Gene,

    I guess mine was a little quicker and more severe. My stricture caused by the radioactive seeds went to a complete closure of the ureter 4 times. the folks at the Cleveland Clinic didn’t seem to have a problem with operating to try to open it, but it closed up again. Several closures ended up in emergency rooms praying that the doctor would be able to get a catheter past the stricture when I couldn’t get one past. And when things were working, getting up every hour all night. Now with my SPC I can sleep through the night. I think you are going to like this change. It takes a little adjustment to a “new normal” that includes regular plumbing maintenance, but that’s way better than knowing where every restroom in the world is located.

84. Dennis,

    There shouldn’t really be any hairs anywhere around the SPC: During the operation to put it in, close enough to get pushed in when the SPC is replaced, actually close enough to the SPC to get drawn in by the little back and forth movement of the SPC. The least than can do is cause discomfort as they get stuck to the tube and pull, but they really shouldn’t be working their way into the bladder.

85. bill— totally agree with you– after 3 weeks i can not believe how much better my situation is. i still can not believe that after 13 years of retention no one ever suggested a supra until i finally ended up in the er. i guess the docs figured that ramming up those rods through my penis was the way to go. now i sleep through the night, have no pain, and feel much more positive about my condition.

    seeds were just starting when i had pc in 1997. i had external beam radiation, but now i guess many patients are having seeds.. good luck and keep in touch- we have much in common gene from boston

86. not sure where my post went lol. scrolled up to see if it posted from the Blue block, and then found THIS place to leave a comment. so here goes again HAHA
    i just received a SPC 24 Feb and googled the subject, leading me here. my story is much the same as Les (posted @ 25 Nov, 2010) Misery seeks company and it is comforting, for lack of a better word, to find that i am not the only Human in this Boat. now i feel that my problems are truly small compared to other’s.
    Just mostly wondering about how long it may take for the “pathway” that my body is about to make around my newest piercing, How long will it be before i may be reasonably fit for work> lifting crawling, climbing, have already stopped Jumping HAHA
    The construction employer that i have been quite gainfully employed with for 28 1/2 years has a policy of “There is NO “Limited Duty”

87. Rus,

    Your recovery should be fairly complete in a month or so. I would go with the doctor’s advice on that. You will probably want to look at the Rusch Belly Bag to use for construction. I work a fairly active outside job and was back at it in a month. Not quite a 100%, but close.

88. Hi all
    was wondering about my future and how long you can use a SPC for? I will have to have mine for the rest of my life… and i’m hoping thats going to be for a long time. But as I have an infection- i’m feeling a bit vulnerable and scared because although i haven’t had an infection for the past 6 months – i let this one go a bit too long and it seems worse than infections I’ve ever had before. So I’m a bit scared about my future! Does anyone have any links to research papers about longterm SPCs?
    I think I’m freaking myself out!
    Jane

89. Rus, one says “Leave a Comment” the other “Email Admin” yet people still make that mistake. How can we make it clearer, any suggestions? In answer to your question as Bill said, 4 to 6 weeks.

    Jwtas, supra pubic catheters are suitable for life-long use and many have done so. The only harmfull side effect emerges post 10 years, a slight rise in bladder or urethral tumor growth, of around 1.4 percent. However this goes for any permenent catheter use including IDC, etc. We believe it is due to the catheter frequently rubbing.

90. Thanks Graham – I’ll stop panicing about things i cannot control. :)
    Cheers
    Jane

91. Hi Graham, everyone,
    My SPC has been in a year now, and all going well, have a 6 wlky change at the clinic, no probs! I find taking a 2mg of valium and coughing alot as the tube is being taken out helps!, All good, then im off shopping. Im free flow tap, 2000ml bag at night, leg bag on long trips, saves me stopping. My bladder still only holds around 300ml at a time, release about 250. Im very comfortable.
    The sad news to me is that I have cancer of the breast, and just home after a full mastectomy and auxillery clearance of the right side, out of 17 glands, one was cancerous, but i still have cells floating around. My breast had one large lump i found, but two i didnt now about. Off to chemo in 2 weeks, and maybe some radiation. Very sad, very life changing!
    Otherwise, Im still in good spirits, beat bladder/urethral cancer, i can beat this! And the two cancers are seperate, no connection.

92. Gayle I’m sorry to hear that hun, and just when you were getting on top of things. I know several who have been through breast cancer including a girlfriend so if you ever want a guy to talk to feel free to email me.

93. Hi,
    Firstly good luck to Gayle with the challenges ahead, you sound like a positive person and success is high. My siste-in-law had the same procedures and she is now fine and enjoying life.
    I had my SPC changed for the first time two weeks ago. The removal was fine, some bleeding, but no bother, but when the new one was inserted I had what felt like an electric shock shooting down the urinary tract and down percy. Since then this has recurred if i accidentally tug the catheter. Is this normal? I also had the first UTI since day one following the replacement, but that was quickly cleared with some strong antibiotics. Otherwise it is working well. I now have a flip flow valve which allows me to try and keep my bladder enabled to hold urine. It seems to be able to hold up to 400-500 mls before I feel any discomfort, which i have read is a reasonable amount. As yet, I have not attempted any sexual contact and I admit that I am nervous of doing so. It doesn’t happen very often so I want to enjoy it (along with my amour). Any comments?

    Cheers,

    Les

94. hi everyone –great inspirational site
    3 questions since i am clueless about my future with a supra
    1-when can i go back to work part time and when can i start sports
    2-can i go swimming
    3-can i fly to ireland in may from boston

    gayle you’r in my prayers.they are making great strides everyday. all survivors must strive to be mentally and physically strong. it’s hard but nobody is a statistic. i myself refused to be a statistic and have proved them wrong. 15 years wrong.

    best of luck to all of you gene

95. Hi Gene, you must not have read the article. Swimming and flying appear under their own sub headings. It’s 4-6 weeks for physical activity after consulting your doctor. Sorry if I sound abrupt, but I’m pretty cut about Gayle’s condition, she is such a lovely girl.

96. Hi, I had a SPC fitted 2 weeks ago as I have been suffering with severe urethral pain for a very long time. Since having this fitted I can drin my bladder no problem but am experiencing even worse pain in my urethra that cannot be controlled with normal pain relief. I have been taking paracetamol and diclephenac regularly since and topping up with morphine but nothing is stopping the pain. I am starting to think that the SPC is what is making the urethral pain worse as I have no urine or site infections. I am tempted to have the catheter removed and just go back to how I was before as the pain was less before and would pass after sitting in a warm bath for around 7hours. I am female and only 22 and this is totally ruining my life. Any advice anyone can offer would be very much appreciated.
    Thanks S.

97. thank you . i’ll google the belly bag, . suggestion? as the Email Admin is in a blue background, i had just scrolled right past the Leave a Comment section. maybe could put a different colored background on the Comment section so it catches attention while scrolling past it? or make the Email background section slightly shorter with half a sentence above it so you notice you may have missed the comment section.. something like *PST* ^^^Look up Here First^^^ LOL..thank you again

98. on re-reading Les W’s post from 25 Nov, actually, i was much mistaken as to the similarities of your plight. i see, Les, that you have been “in the chair” for 30 years, while, myself, i have been working construction and physical labor all my life, this may have confused some when i asked about returning to a job with crawling, climbing , etc. Bill , with his outside job would be a closer comparison.

    but my question here is , has anyone known anyone to actually have success with reversing a stricture? i had blood in my urine back in the end of November, and being concerned, i saw my doctor, who said that the previous ultrasound “wouldn’t really show kidney stones”and he discovered a blockage upon attempting to insert the scope, so i was scheduled for a CT scan, and Urethra dilation on 6th January. Since that time, i have had recurring trouble with flow , and re-insertion of a catheter for an additional three weeks . Having the second removed a week ago, Tuesday, and by Friday, I could not relieve myself (having this problem was a new experience to me and only occurred after the dilations) and was sent to the nearby hospital for the SPC.
    i feel that i should have ignored the blood in my undies, now. at least i could pee.

99. Dear Graham and friends,
    wow, just read the good wishes, thankyou! And yes, im very stubborn, and tough, even on my down days. My SPC is the least of my worries, but i recall early days as being the end of the world!! I still havent been swimming, but during the hot summer ive been tempted! But in my silly mind im afraid of getting water-logged! hahaha. Im also a bit scared of getting an infection, seeing as Ive been well there for so long now, the last thing i had was a staf infection, anti’s soon fixed that, and ive been good since. I flew to Queensland for a holiday before the breast surgery, flying went well, but DO get a medical clearance from your Dr. I was quizzed going thru the scanner as to what i had strapped to my leg. I put a leg bag on to fly. I turned the tap on half way as my bladder tickled with bubbles, i forgot i had it on! lol. I wouldnt go for any contact sports, UNO is about my strength. Altho, I am partial to Wii resort games! Their active!! Well…. off to see the surgeon, get my chemo dates sorted and a couple of stitches removed under my arm. Im trying to stay off the pain killers, oxycontin only once a day. I think the side effect of withdrawel is worse than the actual pain!! Im doing well tho. All the best to everyone! xxx

100. How can u tell if u got uti with an spc inserted-the only way I know is to be tested–I have no symtems–are there any signs that u have a uti???