Longish post, sorry:
Had a bad month (Oct.) of fevers, headaches, fatigue, pain, lump in butt cheek, drainage, night sweats, etc. etc., so called my CR Surgeon at the CC who got me in for an office visit. On anuscope, she saw an "abscess-like" thing inside which was oozing pus. I told her - once again - that I am ready for pouch removal, which we scheduled for Nov. 24th, did the pre-op testing, and I was sent home with antibiotics to take 'til then.
Things went even further downhill over the weekend, so I sent her an email update. She got me in immediately the next day and I got an EUA, where they found a 10 cm abscess that was hiding behind the pouch. A mushroom drain was put in, the result of which was like having an ostomy without an appliance on. Poo was everywhere, running down legs (even with thick padding), ugh. I was admitted that day, and scheduled for an ileostomy with an EUA thrown in for fun. Ha.
So, I had a laparoscopic ileostomy 4 days later, along with a pouchoscopy (EUA) in which the large abscess was drained and a seton replaced the mushroom drain. Yes, I have a 2nd fistula now, 2 setons.
I was told that ulcers bored through the pouch on the left side and created the abscess under the pouch, pushing toward the right side where it "expressed" and became hard (induration) and red. They also flushed my pouch with hydrogen peroxide (I think) and found "at least" 2 holes in my pouch. The dx. was Perianal Crohn's disease, perianal sepsis, abscess, fistula, malnutrition of moderate degree, complications of intestinal pouch.
I was told the pouch has to go, so after everything cools down - the inflammation, abscess, fistula, ulcers, etc. through this diversion, I will be scheduled for full removal of the pouch, and barbie butt. This will take at least 6 months to occur.
In the meanwhile, however, I have my new best friend, my end ileostomy Betty, and she is the best. I LOVE my ileostomy - didn't know how miserable I had become until the first time I emptied my bag and there was no pain, just a quick, easy empty of the bag. The drainage from both fistulas/setons has gone down to almost nothing most days, which is also a true gift. It's been 4 days since the ileostomy was created, and my poo is already thickening, I'm eating fairly well, and moving around as much as possible. I was discharged 3 days after the surgery. No pain meds necessary anymore, although there is a bit of pain right after eating.
So there's the story of my pouch failure - after 25 yrs. of mostly struggling. I'm glad this first phase is over with and look forward to feeling better, eating more, gaining weight, getting on with things. Onward and upward.....
