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07-03-2016, 10:38 PM   #1
LynnH
 
Join Date: Jun 2016
Location: Central Texas
Told IBS...now 2 fistulas

So I've had miserable watery diarrhea for many years, had a workup 3 years ago and told just IBS ( colonoscopy, SBFT, Prometheus all clear) So I say Ok, I'll just live with this. I take welchol and it makes it so that I can leave the house without fear most of the time. In the meantime trying to work out the arthritis with the rheumatologist, plaquenil and prednisone. So now I have a perianal fistula. Went to CRS and she ordered an MRI. Not one but two perianal fistulas. So she won't touch this (thankfully) without going back to GI for a full workup. Appt this week. So afraid they will look at the prior testing and say "your negative, fistulas can happen to people without IBD, you have IBS get over it, try some antidepressants".

Any suggestions on tests to request? I never had stool tests, CT, pill cam. Last GI made it clear that after the negative prometheus he would do no further testing. The new GI is at the same practice as the last one ( in my area most of them are in this same group unfortunately}

Or maybe it's just coincidence that I've had years of watery diarrhea, arthritis, and now two perianal fistulas and it's not IBD?

Any thoughts appreciated,
Thanks,
Lynn
07-23-2016, 04:59 AM   #2
Missjec
 
Join Date: Jul 2016
Hello

My story is similar to yours. I'm in the uk I've had diaorrehea now for three years. Had a sigmoidoscopy which found a polyp and colonoscopy that found another. They removed these and declared my diaorrehea as ibs

Now just recently I had a anal abscess. Doctor prescribed antibiotics but the pain would not subside so I went to a and e. The surgeon there saw the fitsula and asked me to come back the following day for a operation to drain abscess and check out the fitsula.

I went and another surgeon decided the op was not to go ahead without a mri scan to find where the fitsula goes thru. So now I'm waiting for that at the end of August then will go from there.

I'm unsure now if I have ibs or something different. I'm currently on a antibiotic called flagyl which I'm hoping is working, I don't pass wind thru my fitsula anymore anyways. But is it caused by ibs? Who knows! Hopefully I get to find out over next few months

Good luck on getting your issues sorted
07-23-2016, 06:13 AM   #3
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I would go to a different doctor's office and get a second opinion. Please keep us updated.
07-23-2016, 09:43 AM   #4
LynnH
 
Join Date: Jun 2016
Location: Central Texas
Thanks for the responses Missjec and Ron.

Well thanks to my wonderful CRS who got me to a wonderful GI they are now treating me for Crohn's. She is prescribing Remicade and I'm going through the approval process now. I go back to the crs this week and hope she will let me just try the remicade without placing a seton.

I'm hoping the remicade will help my joints too. I've had to go off of the prednisone since this fistula problem started and the joints are just getting worse and worse. I'm so stiff some mornings that Hubby has to bend my knees up and turn me over because I can't move.

Missjec, I hope you get some answers soon. Let us know how your MRI goes.

Lynn
07-23-2016, 09:48 AM   #5
MissLeopard83
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I think doctors are a little too quick to jump to the IBS diagnosis. It's like they are unwilling to hear the patient and think outside the box. I think this is what my current GI doc is doing and it frustrates me. I'm glad you got the correct diagnosis and I hope the medication helps both of your disorders.
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07-23-2016, 09:56 AM   #6
ronroush7
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Thanks for the responses Missjec and Ron.

Well thanks to my wonderful CRS who got me to a wonderful GI they are now treating me for Crohn's. She is prescribing Remicade and I'm going through the approval process now. I go back to the crs this week and hope she will let me just try the remicade without placing a seton.

I'm hoping the remicade will help my joints too. I've had to go off of the prednisone since this fistula problem started and the joints are just getting worse and worse. I'm so stiff some mornings that Hubby has to bend my knees up and turn me over because I can't move.

Missjec, I hope you get some answers soon. Let us know how your MRI goes.

Lynn
I hope things calm down for you soon.

07-23-2016, 10:31 AM   #7
Missjec
 
Join Date: Jul 2016
Oh I do hope the remicade works for you. Fingers crossed this is a step in the right direction for you.

I really do agree doctors were all too quick to label my ibs. ive got to wait now til the 17th August for the mri then not sure on the wait to see the specialist but hopefully come September will have some more news xx
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