Proctocolectomy with creation of ileo-anal pouch (ileal pouch-anal anastomosis IPAA, restorative proctocolectomy, ileal-anal pullthrough, j-pouch, s-pouch, w-pouch, internal pouch) - Baron

Procedure or Surgery Associated with Ulcerative Colitis. Posted on November 30, 2016 View this journey (1 Experience)

My story is something from a Stephen King novel, but we all have our woes to carry in this existence. I had Ulcerative Colitis for over 12 years before my Gastroenterologist said... We need to remove your upper colon or it will become cancerous. So I allowed the surgery and afterwards, I made several mistakes.
Upon returning home from the first surgery (removal of my upper intestine) I found that my case worker had ordered colostomy bags for me to use while I waited approx. two months to heal. The first week was nearly my last. See, while I was in the hospital recovering and learning how to attach a pouch to my stoma area, I had only encountered the one piece bag that did not attach to a wafer. It adhered directly to the skin around the stoma opening. The bags delivered to my home looked a bit different but I didn't know better and tried to use them. The bags ordered were to be adhered to the stoma wafer which would allow the bag to attach properly. Using this bag (unknowingly) was an error! For the next 5 days I had stomach acid eating away the skin around the stoma and the only way to get one of these bags to stay on (for yet a very limited time) was to use the powdered adhesive given in the home kit. When I applied that it burned even more. So for the next week I lay in bed literraly in tears not knowing why this was happening to me. My case worker was unreachable and I finally contacted my doctor who had a special nurse sent to my home. She explained more to me about the bags and how I had gone so terribly wrong with my home treatment.
About two months later, I had the reversal surgery with J pouch, but you can imagine that I did not want to deal with my case worker ever again. That was another huge mistake.
Despite all that, here I am at age 48 and disabled due to my own mistakes. Don't try to do this on your own like I did. There are way more informed people who can help now vs 6 years ago.

Went as Expected: Agree
Minimal Recovery: Agree
Minimal Side Effects: Disagree
Minimal Impact to Daily Life: Disagree

Read more Ulcerative Colitis experiences about Proctocolectomy with creation of ileo-anal pouch (ileal pouch-anal anastomosis IPAA, restorative proctocolectomy, ileal-anal pullthrough, j-pouch, s-pouch, w-pouch, internal pouch).

Read and answer Ulcerative Colitis questions.