Hi, I am a returning member. I have had crohns disease over 35 yrs. and four years ago underwent ileostomy. The entire large bowel has been removed and for four yrs been on the bag. The Dr had a plan to reconnect me.. but after fours years, and constant discharge of mucus and blood, it seemed unlikely to get reconnected.. simply because of IBD- Crohns. if you're bleeding from the rectum "inflammation".. u still got chrons diesease . Now u didnt mention cancer or chrons in your summary. proctitis? colits? yea.. don't matter to me.. U got what IBD is all about INFLAMMATION. Period.
We tried medications to keep bleeding less.. Remicade, Humira, stelerea, ( these biologicals nearly killed me) nothing worked except prednisone. IF we could of controlled the discharge my doc would have consider reconnection the small bowel to the rectum...
WHAT! ? I still would need meds, and the leakage would probably be worse. Diapers? no thanks. I am approaching age 60.. and the only resort now is to remove rectum. no sense having it right? well.. perhaps it because that surgery would open a pandoras box. I have suffered since April this year 2020 4 hospsital stays in 5 months. here's some interesting diagnosis to ponder all which I now have....
pyoderma gangrenosum, MRSA, klebsiella bactermia. IF you're immuno-compromised, be very concenred about surgey and the doc's "know-how" expereince.
I am consulting NYC drs at the IBD clinic at Mt. Siani. next week... These guys would be experts in their fields. I am not open to reconnecting. I am seeking info on should the rectum stay or go? and if it goes, what's could be next.
IBD does not leave you. IT can travel. It can really mess you up.. YOu are never cured from IBD. It's all I know. It doesn't sound like you're in good health right now.. Keep the bag. I don't think you can have a colonscopy... I am not sure but a sig scope is what I get. yearly.
It's a big decision to go for more surgery but what would it yield? People here can offer some hope , or some answers. Everyone is different..
My simple abcess in April caused me to get MRSA. google it. nasty blood infection. so I am looking at a new ball game here if I decide to get a proctectomy. (rectum, anus- removal- the stump also known as Ken Butt)
what I know I must do now is get off prednisone. Use a sparring agent. I am trying something call dapsone. and so far, I think it helps reduce the discharge. Am also on pred too which I believe it's reducing the bloody discharge. tapering pred while on the dap seems to be working for now. I can live with this without rectum removal. but sooner or later??? I may have no choice.
Age is not a factor... health is. pre-exsisting conditions, and your medicine you have been on for years.. all factors. If you are "worn" out, physicially, then consider the lesser of two evils- options.. but consider being safe.. and managing what you have already..
I am in same boat as you. Let's keep rowing straight. Good Luck. Warrior