I have been experiencing what I believe is a 'not too common' post stage 1 surgery occurrence. I find I have to go to the bathroom 6-9 times a day to try and pass fluids from my 3 week old disconnected pouch. Now I know there is some sluffing off of the mucosal lining that occurs but I was told this action would only happen every 4-5 days. The problem is that I am unable to pass much, it has created a great deal of rectal pain, pressure and what feels like inflammation. My surgeon has drained the pouch twice which gave me relief but states there is nothing wrong and that I must just get used to it and work through the pain if I am to have a successful re-connect.
Has anyone else dealt with this and found any areas of relief or understanding?

Have you been checked for an anal stricture? It is possible that you are not emptying because of it and that is why you get relief when the surgeon drains it.

Jan

RIght after my step one I had a similar problem. I felt like I had to go and it was uncomfortable, but nothing came out. The I noticed if I changed how I sat on the toilet (I sat farther back, and arched my back forward. Weird I know.)and took deep relaxing breaths, I was then able to pass the fluid. For the next 3 weeks I had so much drainage they feared an abscess, but there wasn't. I just had a hyper gi tract. Now 5 weeks post-op I pass mucus(before it was mainly smelly liquid) probably 8 times a day. My surgeon just chucks it up to my GI tract.

After my step 1 of 3 surgeries I had rectal/tailbone pain that lasted until I had my 2nd step. This was because the portion of rectum that was left was still inflamed with UC. I also had the mucous/bloody discharge with painful spasms and tried suppositories but the only thing that helped until the second step was prednisone. Until my surgeon created the pouch and removed most of the remaining rectum I was miserable, but it went away after the second step.

I hope that you can find relief soon, when is your next surgery? Where are you having it at? I would ask for something for the pain until then as I took Ultram and that didn't help much, but I was functioning at least.

Thanks for the quick replies. They did do a CAT scan and all looks well. Since I'm connected at the rectum, they are concerned about the reconnect of the small bowel if I am having difficulty dealing with the pain from the mocosal passage only they're afraid how I might feel once they open the flood gates.
I just hope I can find some relief from the pain as the Norco is not doing the job and for whatever reason the surgeon is not inclined to try another pain treatment. As this is the only negative I am experiencing, I am anxious to get passed it so I can begin to function normally again. Thanks again for any and all feedback

For me the sloughing occurred daily, not every 4 or 5 days. And I had pain as well. I was given proctofoam which did absolutely nothing. The 'cure' was takedown.

So.... this could be 'normal' for you. But if you're experiencing a great deal of pain then maybe it should be explored further. Isn't that a great directive? It's either normal or it's not. Not too much help, is it? If your surgeon is saying everything is all right hopefully this will all be resolved with your next surgery.

kathy

How long did you have to wait from stage 1 (pouch creation) until takedown? My surgeon wants to delay until I can handle the mucosal sloughing pain. He is talking 4-6 months!

I had a 3-step - I actually delayed the 2nd step because I had a wedding to go to. But it was about 4.5 months between 1st and 2nd - and 2 months between 2nd and 3rd. I'm not sure why he would want you to wait though, since the pain is often taken care of with takedown. Maybe there is something else going that he's aware of.

kathy