MY J-POUCH HAS DESTROYED MY LIFE!!

I've had my J-pouch for 12 years and I was declared *disabled* "officially" around 2005 but I had started applying in 2002...had my J-pouch surgery in June 2000...take-down done 6 months later in December. It was the most horrible thing I have EVER been through. NO PREPARATION from my Colo-rectal surgeon at all. I was going 35 times a day and screaming in pain every time...my nurse had to help me wipe my own butt every time. They hadn't given me anything to protect my skin and I was supposed to "wipe" myself with a moistened cotton ball...come on, were they serious?? IT...WAS...HORRIBLE!! My nurse took pity on me and found some other kind of GI nurse (that I had never seen while at the hospital) to come see me. She gave me pastes and creams and talked to me. She helped me alot.

That first year...they were giving me the highest doses of the strongest constipating medications that they had. I was even giving myself shots in my arm or belly 4 times a day (can't remember the name...Sandostatin maybe?) Had to sleep sitting up because of gas and incontinence. Took 2 years to recover from the surgery. Basically was unemployable from then on. Had 2 more surgeries after that like a dominoe effect...hernia at ileostomy site and my periods got really crazy & painful so, of course, had to have MORE SURGERY...a hysterectomy. AND low and behold, I was also diagnosed with Fibromyalgia 2 years after the J-pouch surgery. Started to have severe allergies too, especially to latex & adhesives, etc. Having the J-pouch surgery was the worst decision I've ever made in my life!

NOW...twelve years later. I am divorced. Live alone with a sweet little cat that I can't take care of & am severely allergic to. My pouch has shrunk over the years due to scar tissue and Chronic Pouchitis...it is the size of a juice glass and does not expand because of all the scar tissue. And I am SOOOO TIRED OF POOPING sometimes I just don't think that I can go on. I wish I could just stop eating so I will never have to go to the bathroom ever again. I have an anal abscess/possible fistula now...more surgery in my future. I was in the hospital for a bowel obstruction 4 weeks ago. I've kinda lost the will to keep on keeping on, ya know. I am venting here...and I don't know if anyone will ever read this are not. My life is literally crap. Since I am venting. I am NOT talking about all the things I try & do to make things better for myself. I am just really down because I have been sick and home alone for many months now and the obstruction and abscess drama has affected me really badly this time. I had started to try and build a life for myself a couple of years ago and whenever I try to climb out of this black hole of Chronic illness, I get kicked back down and people kind of forget that I exist. So that is the short version of my life with a J-pouch. I wish it was happier and better but I am so so sick of all of the pain...I can't take any pain meds for it either because they will block me up...I only have the heating pad and crying. Life really sukks right now. I'm only 53...I can't imagine living for years like this. There has GOT to be more to life than this...than pooping!! If you read this...thanks for doing that...you are either really brave or really really bored....lol! Cindy
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