My first time here and looking for some advice. I had UC for about 20 years and just had the first of 2-part surgery this July. At first everything seemed peachy, was out of the hospital in about 4 days and on my way to recovery. Then about 20 days out I developed a fever with abdominal due to a perianal abscess that developed as a result of a fistula coming from the top of my newly formed j-pouch (at surgical line).
To be clear this is all internal. Fistula does not come to the skin. I had a drain put in and was put on antibotics. A couple of weeks later there wasn't much coming out and they decided it could be pulled because the hole was tiny and they thought it would scare over. No dice. 2 weeks later abscess is back. So dealt with drain and more antibotics for a couple of months and two weeks ago had a procedure to try to close the hole with fibrin glue. Radiologist was confident the hole was plugged so they pulled the drain. No dice. Back in hospital a week later with another drain and more antibotics.
Other than this issue, I've been doing pretty well. I lost a bunch of weight at surgery which has all come back plus some. Energy levels are up compared to pre-surgery. Appetite is good, etc.
The plan now is to go ahead with take-down surgery and go in and surgically close the hole. My surgeon is very reputable and accomplished. I do trust his judgement but I have just lost a lot of faith in this whole system and am wondering if I'm going to continue to have a bunch of issues with the pouch. Thinking about cutting my losses and going to a permanent ostomy.
My biggest issue prior to surgery was urgency to the point of incontinence. I've has some leakage issues with mucous already and just wonder if I will have issues with loose stool post take-down. Anyway, I know there isn't a real clear cut question here, but just looking for feedback from others who may be able to relate.
Is this plan crazy? Should I cut my losses now and move on with my life? Any thoughts greatly appreciate!