UOAA Discussion Board

Just wondering where I could look for a good HMO continent diversion urologist in ORLANDO that would be willing to convert my urostomy into a continent diversion. I've had my ostomy since six, and have been refused by most doctors. Only one was confident enough to offer to give me one 10 years ago, but I was not emotionally or psychologically prepared for it at the time. I'm 42, but am quite active and youthful-looking (early 30s) for my age. The only concern urologists may have would be the reorientation of my kidneys getting used to the changes in the urinary system's pressure. With an outside pouch, pressure in the body is different than for a continent diversion. How dangerous would it be to have this proceedure after having been a urostomate for 36 years? What doctor in the HMO network in Orlando would be willing skilled, intelligent or experienced enough to help?
Any suggestions would be greatly appreciated!

Welcome, Veronici,

I'm also a urostomate w/ ileal conduit. I'm only (4) months out of surgery, so I don't have any advice to offer, regarding your question. But I would suggest that you copy and paste your inquiry into a new post on the General Discussion Forum. You'll get a lot more exposure on that site, whereas, this area is fairly specific and I don't think it gets much traffic from the overall membership as you'll get in the General Discussion.

Good Luck, Dan

I just saw this post. I had an ileal conduit done when I was 30 due to Interstitial Cystitis. The conduit had many problems and I even had it revised once. I ended up converting to a version of an Indiana pouch after 6 years- best thing I ever did! It is actually better for your kidneysbecause with the internal pouch they build in anti reflux valves so your kidneys are protected. There is a branch of the Cleveland Clinic in Fl. I would contact them and see if any urologists there would be willing to take you on. I had mine converted up here in New England where I live. Judith

Check this site:

http://www.clevelandclinic.org/florida/

I know that the ileal conduit is an internal bag with a stoma and a flange(wafer) and a drainage bag on your abdomen right? Or do you drain it yourself during the day? If you don't drain it in time does it leak out the stoma onto yourself?

I hope I don't sound ignorant, I just can't picture the set-up and the process. God bless Terry for trying to help me...

thanks.
charlene in california

An ileal conduit is just a 'pipeline', not an internal pouch. The docs implant the ureters (tubes leading urine from the kidneys) into a piece of isolated small intestine to move the urine out of the body through a stoma and into a pouch on the outside of the abdomen.

On the other hand, a continent urinary ostomy is a situation in which a piece of intestine is used to make a living pouch inside the body where the urine sits until the patient puts a catheter in to drain the urine (a few times a day). The pouch is connected to and through the abdominal wall by a "valve' which is also constructed of intestinal material.

You can see a diagram of this on page 7 of the guidebook you can see at this link ( http://www.uoaa.org/ostomy_info/pubs/uo ... uro_en.pdf ).

Linda,
Thank you for the information. I could not download the site but I think I get the picture.

I see a university specialist and my regular urologist on Monday and I intend to talk to both of them about options (if any).

I am approaching 1 year with my ureterostomy and while I should feel a sense of accomplishment in reaching a year, I don't; I just get sad. It is hard for me to admit this on the discussion board because most of you have endured far more than me.

I know that I should not feel sorry for myself, but that it would be emotionally healthier for me to be grateful that there were options when the error (malpractice error from a spine surgery on 8/25/05) was discovered on Halloween of last year. I am human and it is hard to swallow at times.

Today is my 66th birthday, I had to go back to work fulltime to pay for medical bills, and I am a little sad. I know to count my blessings but I don't see my urine drainage bag as a blessing!!

Thanks for letting me vent.

Charlene A. in California