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 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....
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.