Hi, I had a urostomy 3 years ago. Surgery is quite big and was not easy to recover but I made it ! I still have bladder in place just not used at all.
It took 3 weeks in hospital but no problems re urostomy leaks or skin since at all. You need someone to change every 2-4 days though. I needed urostomy as I had kidney reflux so supra pubic catheta was no longer viable. An SP catheta might be a better as a first try ? Regards, Mark Age 45 C3/4 Complete since 1986 http://www.markbb.co.uk On 18 May 2010, at 20:40, bob quinn wrote: > Hi Naomi, > > I have a Urostomy, as you describe. It is also known as an Ilial Loop. > > Its a long story why I had one. Originally, I had a Suprapubic Tube (which > was no picnic and resulted in a number of trips to the ER). They didn't > discover my bladder stones until after countless back-to-back UTIs, but by > then my bladder was a breeding ground. I did get multiple opinions from > different urologists in different hospitals --that all agreed-- before I > proceeded. > > I've had the Urostomy for about 7 years now, with relatively good success. > It took a while to find a way to get the Urostomy bags to adhere (i.e., not > leak). I now use Torbot Bonding Cement, which allows me to keep a bag on for > up to about 4 days w/o changing (just doing a water rinse of the bag each > morning) ...though it still will spring a leak once in a while. > > The great thing about the Urostomy is that I haven't had a UTI since I got > it. Other than the occasional leak, I haven't had any other problems with it. > > The surgery itself is major. Even without complications, it required a > two-week+ stay in the hospital, since it involved the intestinal tract. > Hasn't required any follow-ups after the initial one or two in the weeks and > months after the surgery, however. In that regard, its been > maintenance-free. > > As for how you will fare having Crohn's disease, I couldn't even guess. That > is an unfortunate wildcard. Speaking as one who has spent a day in > urine-soaked pants on a number of occasions (after Urostomy bag leaks), I can > say I would not recommend using diapers. Between just being wet and the > urine's acidity, its brutal on the skin, causing rashes. I have never had > any sores from it, though it would not surprise me to see it cause them or > some other skin condition if you had to do it every day. > > I hope that helps, Naomi. If you have other questions, feel free to ask > anytime. > > Regards, > bob quinn > > At 07:31 PM 5/17/2010, [email protected] wrote: >> I am a C-4 quad with an indwelling Foley catheter. My urologist says that my >> urethra is eroding, and suggests I have a procedure called a urostomy. He >> performed a procedure called Urodynamic, which measures the amount of urine >> your bladder can hold. Mine is holding less than an ounce of urine. So now >> he wants to remove my bladder, and make me a new one using part of my small >> intestine. During this procedure, both ureters are relocated, a new bladder >> is made, and urine as directed from the body through a stoma in the abdomen, >> which connects to a bag that adheres to the skin. I am going to the hospital >> on Tuesday to have an MRI, to make sure that it's safe for me to have this >> procedure because I also have Crohn's disease and disturbing my small >> intestine, may cause my Crohn's to flareup (which is a very terrible >> thing).<?xml:namespace prefix = o ns = >> "urn:schemas-microsoft-com:office:office" /> >> >> My dilemma is this: I have to choose between having this very invasive >> surgery, and all of that may come after it including infection from many >> sources, including the new bladder, ureter relocation, the stoma, and skin >> irritation from the adhesive for the bag, and not to mention the Crohn's >> flareup >> >> Or. >> >> I can wear incontinent briefs which I don't have anyone to change them, >> because there's just me and my 80 year old mother, living together. She >> won't be able to change them throughout the day. I have an aide comes in the >> morning and gives me a bed bath and get me in my wheelchair. The rest of the >> day, there's just me and my mom here until bedtime (around 9:00 PM) when my >> nighttime aide comes to put me to bed. My catheter bag is usually not >> emptied from morning to night. My mom cannot handle me to change briefs, and >> if they're left on, I would have all types of sores. >> >> Does anyone on this list have a urostomy? If so, how is it working for you? >> I would love to hear what others have to say regarding my dilemma. >> >> Naomi. >> C-4 quadriplegic due to Transverse Myelitis >> since July 2, 2005 >> >> Have a Blessed Day, Naomi
