I hope that someone can help me! I read the forum often, but rarely write in. I know that collectively you offer the best hope of finding someone else with this problem.
After 17 years of Crohn's disease, I had surgery in March of 2009 and now have an ileostomy. At the time, I had a recto-vaginal fistula form. I have had many issues with external fistulas, but they were closed with Remicade. I was on Humira at the time. After the surgery, the pathology reports showed anal cancer in the vagina and fistula tract, mostly caused by the inflammation and reduced resistance due to the Humira. After chemo and radiation, the doctors considered it a one-time event. I started having back problems 9 months later, and the CT scan in March 2010 showed a large pelvic abscess. After wearing a drain for four weeks, it was removed. Now it is back, twice the size. My back hurts worse than before, and the CT scan suggests a possible fistula tract to the uterus. I am also having vaginal discharge and massive leakage of pus and blood from the former drain site. I am back on antibiotics and due to get another drain on Wednesday.
What happens from there? Should I be back on Crohn's meds even though the CT scan does not show bowel problems anywhere else? The GI doc does not think the Crohn's is back. The colorectal surgeon and IR radiologist think it is the Crohn's.
Has anyone heard of this? Help!
More info on my blog ....
Hope someone can give you some ideas
Take care
Rach xx
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Well, I hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression. He ticked me off, but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive.
I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best.
But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped, and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring. It was then I made myself get out of the dark, and get my sh*t together.
Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances, l not only survived but thrived.
I think of all the years I had suffered with such extreme pain, barely functioning, and the many hospital stays and how that is all behind me now. (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)
So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all. My Angels, each one of you.
And as the Grateful Dead famously said,
"what a long strange trip it's been!"
Im so happy I'm tripping with you all.
Ouch, I had a fistula once before in the crack of my {well you know}. I thought it was a hemorrhoid or something until it hurt so bad I went to the doctor. They drained it and put a stitch or two in, and I have not had any other, but feel the pain every time I think of it. The only med I can think of you are talking about may be prednisone. That is great stuff, but is it worth it? I surely would check with the doctor before taking anything like that.
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