I had an ileonal J pouch surgery years ago. I had no serious issues for the most part until recently. It’s gotten so bad that I want to cry and want solutions NOW. I’m at my wit’s end.

The past three years, I’ve been going to the ER to deal with recurring perianal abscess. I’d go too early with an office visit and the doctor would say, that there’s nothing to see. As a result, I’d have to endure worsening pain for days and/or weeks until I think abscess has finally formed and try to see a doctor in office to lance it, and if I can’t, I go to ER. By that point, I usually have high fever, in constant pain, can’t sit, can’t walk, have to lie down in a certain way for it to be tolerable, which I try to ignore by sleeping. Unless the pain is so bad that I can’t ignore it in my sleep, I go to the ER. And that’s the only time doctors actually see anything. I’m being controlled by my abscess and I’m afraid to make reservations and go anywhere. This is no way to live.

Lately, I seem to be getting it more and more often. I’ve seen three colon rectal surgeons, and none of them know what’s causing abscess to keep coming back in same area. The current doctor I have is hopeful that each abscess he drained will be the last. He’s drained four different abscesses now. As in four times in the past 6 months.

He mentioned to me that he’s wondering if the J pouch is the cause of abscess because thoroughly cleaning abscesses doesn’t seem to be doing the trick and said that “I have an uncommon problem,” which meant I have a rare issue that doctors don’t normally see in their usual patients.

Currently, I’m on antibiotics (Augmentin) AGAIN and I KNOW that there’s an abscess brewing somewhere because it keeps hurting and going away, and hurting again. It’s happening so often that I know the early symptoms by heart. I saw a Gastrologist and he suggested that I be on antibiotics forever to keep the abscess problem at bay. That’s not an ideal solution. Because it seems like abscess can and will return even if I'm on antibiotics.

So now I REALLY need advice/input from other people who’s had an ileonal J pouch surgery and has had abscess issues after that. I want to find out if this is a common issue with those who had the same kind of surgery I’ve had. And what did they do to resolve this problem. And any referral to a doctor or specialty or advice on finding the right doctor that would be familiar with my kind of problem would be greatly appreciated.