Surgery, Fistula, Psoas

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SeekingFreedom
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/17/2007 6:26 PM (GMT -6)   
Hello,

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.

Thanks!!

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 11/17/2007 6:48 PM (GMT -6)   
Ok, I just realized how long my other post was. For my full story and details of my condition, you can check my previous post. Otherwise, here is the CliffNotes version:

I have had Crohn's Disease for 12 years. I have managed it well with diet alone, until this past year when I slacked off on the diet and suffered the consequences - hospitalization for several weeks, the formation of a fistula to my psoas muscle, and an abscess in my back.

My questions:

1) I am curious to know about what I can expect if I decide to have 9 inches of infected terminal ileum and the ileocecal valve removed laporscopically.

What are the pros and cons? What is the success rate of elimintating the disease this way? How many people have had a similar surgery and how has their experience been since the surgery?

2) I would love to hear from people have had fistulas from the ileum to somewhere else (I developed one from the terminal ileum to the psoas muscle).

Did you opt for surgery or medications or some other alternative treatment? Did you have recurrence of the disease after the removal of the fistula? Other fistulas?


Any information would be very comforting and helpful to me, and I am very happy to share my experience with anyone who is interested.

Thank you so much!

-SF-
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chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/17/2007 8:27 PM (GMT -6)   
Welcome!

I had a rectovaginal fistula that I had closed using high doses of flagyl, cipro, and eventually remicade. It has never come back. Personally, I would try all other options before I opted for surgery especially since you seem to be doing better on the anitibotics.

SeekingFreedom
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/17/2007 9:02 PM (GMT -6)   
ChronieMomx2 -

Hi! Thanks for your response. That's great to hear! If I may ask: What doses of Cipro and Flagyl were you on? Were you eating while you were on them or were you on IV nutrition? And how long has it been since it went away? Thanks again for your input!

SF

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/17/2007 11:05 PM (GMT -6)   
The flagyl was 4 times a day, and I want to say 3 pills each time.....this was back in Dec. of 2004 so my memory isn't the greatest on specific things. I was also on 60 mg of pred., so I was eating well!!!!!!! :)

They were very persisent that I took my flagyl round the clock, so I had to set my alarm for the middle of the night, and get up and take it with a cracker or something. It closed after 2 months of the flagyl and cipro (only one month of cipro, I had a reaction), and 4 remicade infusions.
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