11-02-2014, 02:35 PM   #1
Join Date: Nov 2014
Possible fistula

Hey I am a newbie to this forum. I have been suffering over twelve yrs. I am curious if any of u pass suff in the urine. Thought I had kidney stones til a urologist role me they r not stones they r material from a fistula. He told me to go to a GI and I did. That was about six years ago and no luck so far.
11-02-2014, 03:14 PM   #2
Join Date: Nov 2014
I would like to add thru all this I always have severe pain in my back and left side bad headaches sweats diarrhea constantly and sometimes weakness to the point I can't walk. Any help would be greatly appreciated. I really need my life back. I have dour kids and they don't even know the real me
All they know is me sick. I do not eat anymore and if I do even try to eat a few bites put me in the bed. I live on nutrition drinks. Thanks
11-02-2014, 03:19 PM   #3
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Sailorluna's Avatar
Join Date: Oct 2010
Location: Coon Rapids, Minnesota

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I have fistulas but not a fistula to the bladder which is where you mights get matter in your urine from. I thought I had one because of a UTI that took 5 weeks to go away but after a CT scan and an MRI they decided that I did not. Have you had a CT or MRI? Have you seen a colorectal surgeon at all? What does your GI say the issue is? Do they disagree with the fistula rx?

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
11-02-2014, 03:23 PM   #4
Join Date: Nov 2014
I have not been to a surgeon only a GI. I have had colonosxopy and scans. I have been diagnosed with Crohn's and diverticulitis but no fistula. Do they show up on an MRI I am thinking maybe I needs one. Thanks
11-02-2014, 05:08 PM   #5
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Fistulas are awful.

Are you currently on any meds?
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

11-02-2014, 05:10 PM   #6
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Join Date: Dec 2010
Location: Western Isles, United Kingdom

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Hi Loriann. Six years, that's a long time to go with no definitive answers. I had a bowel to bladder fistula and abscess and experienced similar symptoms to you. Do you suffer from UTIs? I had them constantly and just before they decided to operate, had started to pass what looked like food or fecal matter when I was urinating.
Yes I think a CT scan or MRI would help to confirm if you have a fistula or not. I have had both and my fistula was seen on them.
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
Current: Pentasa, Librax, Warfarin
Helen x
11-02-2014, 05:10 PM   #7
Join Date: Nov 2014
No meds right now. I once took a lot of very strong antibiotics and steroids.

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