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I had my pouchoscopy on September 1st and was told that everything looked great. My doctor even said that there is really no need for me to have these done yearly and I can go every other year considering I am young (33) and otherwise healthy, even though I haven't been going yearly anyway.

A few weeks ago, I started to have some pain/discomfort and noticed swelling "down there". It was more in my perineum area, so I thought it had something to do with my prostate. I went to my urologist, who prescribed antibiotics for prostatitis but also suggested I follow up with my colorectal surgeon due to my history of UC and having the j-pouch. I sent a message to my colorectal surgeon (same person who did my pouchoscopy) who told me to come in for a quick visit if the pain continued.

After 5 days on the antibiotic, my urologist switched me to another one because things weren't getting better. 2 days later, I ended up in the hospital because the pain and swelling had gotten much worse. A CT scan had revealed what was apparently a 3cm abscess. I was put on IV antibiotics while the colorectal, urology, and general surgery teams at the hospital went back and forth for days deciding whether or not the abscess needed to be drained or if IV antibiotics would be enough. Over the next few days in the hospital, I was told the swelling was worse than when I had the original CT scan done.

They ended up doing an ultrasound which didn't give a better picture of what was going on, followed by an MRI which determined that I did need to have it drained. This past Thursday, I underwent a procedure in which 2 setons were placed to close off a fistula or opening that apparently started in the anal canal and went to the base of my penis. I was told that no fluid came out and it was really just a lot of inflammation. The setons need to remain for 6-8 weeks with the goal of allowing things to drain properly and then having scar tissue form in the area so that abscesses will not grow and become infected. One of the setons can be removed in the doctor's office, the other will have to come out surgically since it is deeper inside me. If this doesn't work, a more invasive surgery will be required.

I am not happy with the hospital I was in. They did a terrible job of explaining things and I'm still unsure as to what is actually going on. I went to this hospital specifically because this is where my colorectal surgeon is affiliated with. I really like him, even though he is not the surgeon who did my j-pouch, as that surgeon has retired.

My question is - how was this opening from my anal canal to the base of my penis "that isn't supposed to be there" (according to the doctors in the hospital) not detected during my pouchoscopy? Is it possible that some type of damage or infection occured as a result of the pouchoscopy I had on September 1st which caused this opening/fistula to form? If so, I'd like to know if I would have a case for medical malpractice.

Last edited by LIGuy11
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I’m sorry you’re going through this! Fistula openings are very small, so they can easily be missed unless there’s a specific issue that makes the doctor look painstakingly for it. It’s not surprising that the doctor didn’t see it, since it wasn’t (then) causing you any trouble. As far as I know I don’t think pouchoscopy can cause a fistula unless (perhaps) if there’s a serious and fairly obvious mishap..

The long-term goal of a seton is to hopefully enable it to heal up, but while it’s in place it actually keeps the fistula open to enable it to drain consistently instead of forming an abscess.

Hi there. I had two fistula (2018) and it was also a nightmare! Lots of Dr's not knowing what to do. I ended up at a hospital, referred to a GI specialist. Long story short, he didn't have time to drain the abscess so he did it without anesthesia. I still have trauma thinking about it. But...I was in SO much pain. Then I went to the surgeon who made the j-pouch and he fixed it. I did not have a scope prior and actually very overdue for one. I think, as you can see from this website, we are a rare breed and even the GI specialists don't know how to really manage us 'on the other side'. So we do things to manage our issues. I've had a j-pouch for over 25 years! Two kids in college and no lack of GI disorders. I'm seeing a functional medicine Dr and working on my bloat. Be good to yourself. It's a hard road we have to walk.

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