Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Anyone experience this type of pain with fistula.

11-30-2014, 01:40 PM   #1
Join Date: Nov 2014
Location: utica, New York

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Anyone experience this type of pain with fistula.

I'm hoping someone can respond to my post so I know I'm not alone. 2 weeks ago, I had a draining seton procedure for my perianal fistula. While the surgical pain is pretty much gone, I have 2 major problems. Drainage is coming from both the fistula and the rectum! I have no control at all. I have control of moving my bowels for most part but not the drainage.
Second problem is this most unbearable pressure/cramping that I get. It makes me double over and grip whatever I can find and bite down until it passes. This happens only when I'm about to get a discharge from my rectum, which is quite frequent. When discharge is only from my fistula, it's just slight cramping.
I left a message with my surgeon's nurse and she called back to say this is normal. I have a feeling she thinks I'm complaining of post surgical pain.
I looked at other postings and can't find anyone with similar symptom.
Please let me know if you've been there.
This is really draining me. (No pun intended)
11-30-2014, 07:15 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

I'm sorry you're dealing with a fistula...they're awful things. I'm sure someone will be alongsoon who can help .

Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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11-30-2014, 09:05 PM   #3
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Join Date: Oct 2010
Location: Coon Rapids, Minnesota

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I just wanted to say hello, and wish you luck with finding answers.
I have not had those issues with my fistulas but I do not drain out my rectum either.
Could be related to where your fistula track runs? I do sometimes get pretty horrible cramps but they do not seem to be related to my fistulas.

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)

Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
12-16-2014, 04:12 PM   #4
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Join Date: Mar 2014
Unfortunately, when I got my setons in April I had immense and ridiculous pain and drainage that was uncontrollable. It hurt almost all the time as if the abscess was still full and was excruciating to use the bathroom. I went on Remicade and it slowly got better, then remicade failed, now I'm waiting around trying super strict SCD diet and other things which seem to keep it somewhat manageable. But yes- those things can be so so awful. What are you on/doing to try to close them? I kept going back to the doctor and they kept saying that basically as long as the fistulas are still open they are gonna fill up and hurt real bad.
12-16-2014, 05:52 PM   #5
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Join Date: Nov 2009
Location: Bristol, United Kingdom
I'm sorry that you're having such a rough time with your fistulas. I don't have any experience of perianal ones, but I have had many (8) fistulas in different places.

Regarding your question about pain, I know that I have had a lot of pain, cramping etc with mine. For almost a year I had an enterocutaneous fistula, which drained from my tummy, and the pain that I had with it was agony, especially when it was "active." My surgeon said that the pain was due to the discharge/stool pushing through the hole in the muscles, which makes sense. I eventually had it surgically cut out and stitched up as it was causing serious problems.

I hope that you are able to get yours sorted as soon as possible, do go back to your doctor again and again until they can do something about it.

Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.

Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Anyone experience this type of pain with fistula.
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