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08-03-2007, 01:06 PM   #1
jasper01
 
Fistula

I have been diagnosed with Crihn's disease for two years now and I have been on 6-MP and feeling pretty good. However, over the last two months things started going down hill and started having pain and just overall feeling bad. I just had a small bowel test and a MRI and I believe that they were testing for a Fistula. I have an appointment to go over the results soon, but was wondering if anybody could share their experiences concerning fistulas.
08-03-2007, 01:52 PM   #2
Sojourn
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Join Date: Jun 2007
Location: Oklahoma City, Oklahoma
It depends what kind of fistula. I currently have an abdominal fistula that was trying to make contact with the outside through the skin. It developed with an abscess. Sometimes fistulas try to connect with other organs. I don't know all the names of these different fistulas.

In the case of my fistula, I had surgery to drain the abscess and to allow the fistula to make contact with the outside. I have a mature fistula now I'm told. They are allowing it to drain stomach content out of the hole, from the surgery. I use these big bandages that I change three times a day. The best case is to treat this kind of fistula medically. I'm on Prednisone now which they hope will allow the fistula to heal and seal off on its own. If the fistula doesn't seal off, I'm told I will need to have a resection where they would just remove that part of the intestine where the fistula is attached.

Hope this helps. But there are many different kinds of fistulas and there's no standard treatment for all of them.
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Hospitalized & Diagnosed: 2004
Mission trip to India: 2004
Mission trip to Philippines: 2005
Contract job in Iraq: 2006
Abscess drained, temp. ostomy: June 2007
Lap-right-hemicolectomy: October 2007

Done
08-03-2007, 02:01 PM   #3
jasper01
 
Yikes! It doesn't sound pretty. Well, I'm kind of thinking if the MRI was of my abdomen, then it might be a similar situation, but only time will tell. I just appreciate hearing your story.
08-13-2007, 09:08 AM   #4
ruthymg
 
I had several problems with fistulae, but mine were all anal. I had 3 surgeries to fit setons to try and drain them (I had several fistulas in a horseshoe shape in my rectum) all with no luck. I had immense pain with them and all the antibiotics and Imuran did me no good either. I eventually, after about 18months of problems, opted for surgery for a bowel resection (as a loop of my small bowel had become stuck low down in my rectum) Apparently this is what was causing all the fistulae infection in the first place. I also had a temporsry stoma fitted to rest my large bowel and rectum. Within 9 months my fistulae had totally healed, I have scarring but no incontinence problems. If you need to chat further feel free to pm me. Hope you get this sorted. The longer they are left the worse they get in my experience. Good luck


Ruth
05-09-2011, 10:02 PM   #5
Jennyram
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Join Date: Apr 2011
Wow Ruth! I've been looking for someone in a situation like yours(ours). I've had fistulas for four years and it's also "horse shoed" they are painful and have not responded to either meeds or multiple surgeries. Currently have setons in place but my docs want me to consider an ileostomy in order for the, to heal. I don't know what to do. There's no guarantee of healing but I can't go on like this. What do you think
07-04-2011, 02:54 AM   #6
malka
New Member
 
Join Date: Jul 2011
Hi ruthymg,
Have you had any drugs such as immunosuppressant drugs?
My brother has several fistulas actually developed after draining the abses and do not heal properly. The doctors seems to think he has Crohns and need to be trated with immunosuppressant drugs.

Thanks
07-04-2011, 08:02 AM   #7
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
Hmm, this is interesting to me. I also have been told the same thing about fistulas and mine being "horse shoe" shaped. I have 3 seperate seton drains in place now, close to each other near my rectum, one near my tailbone, and the other two inside my "cheeks".

Theyve been draining now for months.. I have a colostomy now but I think my surgeon said they would have to do some repair surgery down there or some sort of fistula plug in order to fix it. I dunno.. as of now I just always sit on an absorbant pad and it doesnt drain too badly, just a little. Ive kinda put it on the back burner since I got other stuff going on.

update: oh, i just noticed how old this thread is.. you probably didnt notice, but this was a several year old thread, guys.
__________________
Diagnosed Crohn's 2001
7 Compression Fractures in spine due to long-term steroids
Adrenal Insufficiency
Extreme malabsorption
Previous ileostomy - currently have colostomy
PEG Tube
Several surgeries incl. Fistulas, Abscesses, Resection
2 Deep Vein Thrombosis
Completely bedbound as of 2010

Currently on:
Tysabri (first dose 6/2011)
Hydrocortisone
Probiotics Align+Acidophilus
Iron/Multivitamin/Zinc/Calcium/Vitamin D
Oxycodone
Testosterone
Krill oil
L-Glutamine
07-04-2011, 09:20 PM   #8
malka
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Join Date: Jul 2011
Thanks for information kekemonster101.
Wishing You Well!
08-03-2011, 09:39 PM   #9
CrohnsGA
 
Join Date: Jul 2011
Location: Georgia
Wow Ruth! I've been looking for someone in a situation like yours(ours). I've had fistulas for four years and it's also "horse shoed" they are painful and have not responded to either meeds or multiple surgeries. Currently have setons in place but my docs want me to consider an ileostomy in order for the, to heal. I don't know what to do. There's no guarantee of healing but I can't go on like this. What do you think


Jennyram I am scheduled for my temp ileostomy on Aug 19th. I've been dealing with anal fissures, abcesses and fistulaes for a few years now. I just can't go on in pain like this. In addition, I have had problems with anal strictures due to the scarring. I'm ready to move forward and have some healing.

CrohnsGA
08-04-2011, 04:04 AM   #10
Grumbletum
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Location: Western Isles, United Kingdom

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Hi CrohnsGA
Nice to meet you, but sorry to hear about the trouble you've been having I hope the surgery brings you some much awaited relief. Please keep in touch and let us know how it goes.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
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