I am new to this message board. I was diagnosed with Crohn's disease 12 years ago at the age of 18. Back in 1995, after two weeks of hospitilization and a lot of Cipro and Flagyl, I started to feel somewhat better, but I refused to take other meds or have surgery. Instead, I tried many 'alternative routes', and nothing worked... until I made a drastic diet change. The diet change actually made all of my symptoms go away. Since then, I have only had two flare ups; one in 2001, and one in 2007 with complications of a psoas infection and fistula.
Each time, I was hospitalized for inflammation and recovered via IV antibiotics. I haven't seen much thickening of the intestinal walls in these 12 years or spread of the disease beyond the original section of ileum, and my digestive functions are all working well. So in many ways, I have been lucky. However, in the past year I have been neglectful of the diet, and under high stress, which I believe to be the cause of the 2007 flare-up.
This most recent flare-up showed in the C-T scan that I have developed a fistula from the terminal ileum to the psoas muscle. My psoas muscle has been infected with an infection that was difficult to get rid of, and has kept me off my feet on and off for the past three months. The infection also tracked upwards to form an abscess in my lower back, which I had to have drained.
I went to see one of the top GI surgeons in NYC, and he told me that I need to have the last 7-10 inches of the ileum, the fistula, and the ileocacal valve resected (which can be done laproscopically), or, otherwise, the infection will return in my psoas and back. The thing is, my digestion has been perfect for the past few months - solid, healthy, normal bowel movements, etc. - which makes surgery seem like it could be overkill for the fistula.
I have once again been on Cipro and Flagyl for a while, and now the infection seems to have cleared up (though i am still on oral antibiotics). Now I am trying to figure out if the surgery is necessary, or if I can heal the fistula another way. So, here are my questions for the board.
1) Has anyone had the terminal ileum and ileocecal valve resesected without recurrence?
2) Has anyone else had a fistula from the ileum to the psoas muscle? If so, how was it treated?
3) Has anyone healed a fistula with a non-surgical method, without the fistula re-opening?
4) I have a question for "Caras" who it seems had almost the exact surgery that I would have about how recovery was, and what side effects, if any she has experienced.
5)And I would also love to hear from anyone else who has shared similar experiences to mine, and the pros and cons of how things have gone based on the decisions that they made.
I am excited to have found this board and look forward to hearing from other members. I am also very happy to share any info about my own experience if it can help anyone else.