This patient support community is for discussions relating to ostomy, colostomy, diet and nutrition, gastrostomy ileostomy, jejunostomy, ostomy reversal, sex and relationships, stoma, urostomy, and wound care.
I was diagnosed with Familial Polyposis in 2002 and given a j-pouch at the Mayo Clinic. I was excited to find I wouldn't need a temporary ileostomy and was never told about possible future complications. My first indication of a problem came six months after surgery. I went to the doctor not feeling well and found I was two numbers away from a blood transfusion, because what I thought was just a different color in stool once in awhile was blood I had been losing. I was diagnosed with pouchitis and ciproflaxacin and have never been off of it since. My doctors agreed that my pouchitis is post-operative, for some reason, and they just don't know why, but my blood vessels in the pouch didn't survive the surgery. A year ago I had two episodes of what felt like a food blockage and seven procedures later found out it was a narrowing just above my pouch that was only open 3mm allowing my food to pass through. A balloon procedure was successful, but my doctor isn't sure how long it will last. I usually take two motrin every night before bed and it takes any soarness I have on my insides and butt away so I can sleep. My doctor has suggested, for the second time, that I would have a much better quality of life if I would just give up my j-pouch and go for an ileostomy. There is no chance of my pouch ever healing and I can't live without the cipro and 6 imodium (immodium) a day. There are several reasons to say it's time to pull the plug and few to say no, but I am scared and need convincing that it's a good option.
sounds as tho the j-pouch is not working for u..pouchitis is common and complications do occur..it is one of the reasons they usually give someone an ilestomy in the first place if the j pouch works it is a great thing..but ileostomies are not horrible..the stool have very little if any odor..little gas if any and i u get a good stoma no one will ever know u have it...let me know if u need any help.i am an ostomy nurse and help people with their pouches etc all the time
Thanks for the advice. I finally got to meet someone, for the first time last week, that actually has an ileostomy. I have an appt. at the Mayo on Friday with a surgeon and I am nervous, but I know there is no fixing my j-pouch and I just keep prolonging the inevitable. I will take you up on your offer for help if I keep the courage to follow through with surgery this summer.
I find it interesting that you have FAP and have had trouble with pouchitis. I too have FAP and have had intermittent pouchitis, which was misdiagnosed for an unnecessarily miserable 12 years because it is widely believed that pouchitis does not affect FAP patients. I finally got a dr who did a biopsy, gave a correct diagnosis, and i am lucky enough to respond well to flagyl. I sincerely hope you are doing better now, and hope that more doctors will do these surgeries in the safer (if less fun) 2-step process, and will use their brains to diagnose patients rather than make quick assumptions.
This is crazy, the same thing is happening to me now, I was diagnosed 18 years ago with Gardner's syndrome (familial polyposis) now it seems everything that happend in the beginning is happening again, I had to have a blood transfusion last month, now last Thursday just found out I have ulcers and high dysplasia polyps in my jpouch , now that is whats causing my blood loss, the Dr said they will have to give me a colostomy bag :( I don't want to go back to it....I can't sleep , my mind is constantly running, so I feel exactly where ur coming from....maybe if I was older, married ,with kids but I'm not....
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