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
