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Hi, new to the site. Was originally diagnosed with UC in 1993. I was in my early 20s. In and out of hospitals for 6 yrs . 1999 I had no choice but to have my entire large intestine removed. 8 months later had J Pouch surgery done and it was at the time the best decision of my life. I had a few complications at first ( incision became infected and a leak which healed itself after CT guided drainage). Med free for 16 years and doing great. 6 to 8 bowel movements a day , no leakage at night . Till one day after a BM I noticed an egg like bump in the perianal area. Went to the doctor and he determined it was an abscess. Same place where the original abscess from the leak after surgery. Let me tell you if you never had a perianal abscess consider yourself lucky ( extremely painful). Surgeon drained it and all went back to normal for a month. Abscess came back an opened on its own and drained. Doctor said you probably have a fistula we need to put in draining setons so abscess will not form. I have been dealing with this for 4 years. Draining puss and stool out of my butt check. Doctor said it has to be Chrons and put me on Stelera. Does not seem to be helping. Anybody experience or going through something similar? Any help or suggestions would be greatly appreciated.

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@A.J. posted:

I am on Stelera. Not really helping. When this abscess started the cat scan showed my lyphnodes were enlarged. Sure enough it was lymphoma. Thank God that is in remission but the oncologists believes it was from the 6mp I was on when I was diagnosed with the ulcerative colitis. So I cannot use Humira or Remicade.

I am sorry to hear that! I would definitely voice all concerns to your doctor. Hopefully he can come up with other solutions. Keep me updated and good luck with everything dear

YES!!!! OMG, hear ya, I feel ya...

About 2 & 1/2 years after I got the Jpouch (surgery done in '98 - before there were biologics - FDA approved Remicade in ~ 2000, when I was 27).

So the pain was soooooo excruciating (I was gulping Tylenol 3 by the fistfuls for a few weeks - it was SCARY and HELLISH), so as much as I wanted to keep the J-Pouch, I "begged" my colorectal surgeon for (surgical! lol) relief, so within the week, he operated me in Nov of 2000 (the reason I remember exactly when it was, was that I was recovering from the reversal surgery in the hospital, and I was pissed off that I was in hospital on Nov 4, so I wan't able to vote in the crazy Gore/Bush election

But the good news is that after surgery, I was immediately out of that excruciating pain (obviously, only had pain from recovering from surgery), with the temp ileostomy. But about 9 months later, my fistula had healed, so my surgeon was able to reverse the reversal (lol) and I was fine ... for many years ...

GOOD LUCK, STAY SAFE and HANG IN THERE - It will get better!!!!


Hi Kath, Glad to hear you are doing well. Yes the pain will make you sell your soul to the devil. I lived on the heating pad and did not miss a day of work. Don't know how I hot through it. My doctors have not talked about a reversal but did mention possibly a kpouch. They want me to try Hyperbaric Oxygen Treatment. Trying to get that passed with my insurance . This is a nightmare and hope nobody has to go through this. They say my pouch is in excellent condition but the problem is below it. Really crushing my quality of life. I can only pray that my insurance apprroves the HBOT and that it works for me.

AJ, I'm so sorry you're going thru this..pls find comfort in the fact as a collective, all of us here, can relate in some way, because while we all have such. unique issues, problems, symptoms, setbacks, etc., I think we all know the personal hell of being in so much physical, emotional/psychological and spiritual pain, that no one can even SEE (eg not that I'm comparing cancer to IBD, but EVERYONE with a reasonable intelligence above the age of 12, is fairly well-versed in the hell that cancer patients go through, so I think it's in some ways worse for us because A) it's soooooo chronic and B) No one truly, other than everyone on this board (and everyone else who suffers with IBD who isn't), understands the pain, frustration and hopelessness of the awful illness....IMG_3845


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