I am 6 weeks out from my proctocolectomy. I have had extensive pressure and pain in my rectal area. I have had several scans done and my doctors can not find anything wrong with my j-pouch. Although I can not stand or walk for longer than 10 minutes without being in a lot of pain. I went to the doctors again today and we discused the possibility that maybe my body is rejecting my pouch. Maybe my body is not confortable with the pouch. Has this happened to anyone else? I am stuck with so many questions. We discused removing the pouch and doing the permanent ostomy. I am afraid of what this will be like. I was healthy up until 3 months ago when I was diagnosed with FAP and discovered over 100 polyps in my colon and retal. We did the surgery to safe my life which i am gratefull for. The hard part is I am only 39 and had a very active lifestyle up until my surgery now I am bed bound for hours a day and am really getting frustrated. I just need some guiedence from anyone who has any experience. Need to know there is hope for a normal life.
Replies sorted oldest to newest
Im confused by this. I don't understand how your body could reject the j pouch. It isn't a foreign object....it's just your small intestine. I would have lots of questions if my doctor was telling me this and I would seek another opinion.
Around 6 weeks after my first surgery I felt the same thing. It was horrible rectal pain and pressure. I had scans which showed nothing too. I went on antibiotics and that didn't improve. I had a pouchoscopy and all the tests revealed that it was just healing pain. I experienced this until my takedown. Once I had the takedown and my bowels woke up I no longer had that horrible rectal pain. This surgery requires a lot of patients. The time in between the 2 surgeries was an awful time for me. Good luck
i agree with marianne plus youre only 6 weeks out. you could have some bruising right after it was cut sliced and stitched. think about a broken leg. youd have a cast and crutch and still have terrible pain but with this youre expected to jump up and down on the broken leg so to speak cause the pouch is always active even if not in full use. i think its wrong for your doc to not suggest waiting a bit longer. when my j-pouch was created and i had my loop ileo it hurt like heck for many weeks out. i think we need to put things into perspective. we just got tore up. i say give it more time. also, marianne is right, second opinion!!!
It is not the body rejecting the pouch, but the body rejecting what we are trying to do with the pouch. The small intestine was not designed to hold body waste, and is now being forced to adapt to a new reality. With most people, the body adapts well. But for some of us, the body throws an absolute fit, and lets us know it is not happy what is being tried. Sometimes, it just takes a longer period of time to adapt. But with others, the pouch has to be removed if a person is going to be healthy. Just a sad fact of life with j pouches. Hopefully, yours will eventually adapt.
quote:It is not the body rejecting the pouch, but the body rejecting what we are trying to do with the pouch.
I think this is a correct way to frame the issue. The body does not reject the J Pouch as it would a transplanted organ which is foreign tissue, since the J Pouch is made of your own tissue. What is rejected (perhaps only initially) is the functioning of the J Pouch. The body does adapt to it and the J Pouch itself adapts, expanding to accomodate its new role over the course of time.
Maybe they are thinking the staples that are holding your pouch together are being rejected by your body? Long shot, but anything's possible. Otherwise, I'm with the others, it's your own guts, so your body ain't rejecting that part at least.
Maybe it's just the nerves in the area that were cut/touched during the op causing the pain still when the area moves around/has pressure placed on it.
Sorry to hear about how it's going regardless. That just sucks. Wishing you well.
Ad
Maybe it's just the nerves in the area that were cut/touched during the op causing the pain still when the area moves around/has pressure placed on it.
Sorry to hear about how it's going regardless. That just sucks. Wishing you well.
Ad
6 weeks is early.. I was still on 80mg a day of Oxy that time frame. My life is still rough but it sucked big time for about 4-6 months post op by far.