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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Fistulas for no reason?


04-06-2014, 01:15 AM   #1
MissDee
 
Join Date: Apr 2014
Fistulas for no reason?

Hello,

I'm new here (with my now 3 posts).

I have had two anal fistulas now in the past three years.

My first healed quickly with a fistulotomy, but the second has caused issues for me for the past 2 years, and refuses to heal.

First it was just thought to be an abscess, and was lanced and drained several times before the abscess was just cut right out leaving a giant gaping hole in my anal area. That healed over but continued to fill, burst and drain, so I had a seton put in, and at several points was taking flagyl and cipro, which made me incredibly ill.

After all the antibiotics, I ended up getting c diff., and put on new antibiotics.

The because the fistula was causing so many issues, my family doctor sent me for a colonoscopy to test for Crohn's, as both her and my colorectal surgeon suspected it may have been the cause of all these issues.

The colonoscopy showed some inflammation, but the biopsy came back negative for Crohn's disease, meaning that these fistulas are just a result of bad luck.

Is it just me? They are exhausting to deal with, and just incredibly depressing. I feel like it's just never ending.

I know a lot of people on here must be dealing with much worse, but I do feel so alone sometimes, like nobody really can relate or understand..


Thank you for reading.
04-06-2014, 10:19 AM   #2
Trysha
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Join Date: Aug 2009

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Hello
Welcome to the forum.
It might be a good idea to get another opinion from a gastroenterologist.
If the colonoscopy revealed inflammation then there must be a reason for that
and further investigation may be warranted.
You have a right to know the cause of the inflammation.Has any treatment been offered for this?
It is natural to feel depressed with such a situation especially when you are having continued fistulas.
It leads one to believe that it is an unfinished story.
I would suggest to ask your doctor to refer you to a gastroenterologist for another opinion.
Feel better soon
Hugs and best wishes
Trysha
04-06-2014, 10:28 AM   #3
MissDee
 
Join Date: Apr 2014
Thank you for the reply!

I have been seeing a gastroenterologist, who has been treating the fistulas. A different gastroenterologist did the colonoscopy, but they said the inflammation, because it was such a small amount, could likely have been from some advil I had taken before I started the prep, or even as a result of the prep itself. They didn't treat this small inflammation, because they felt the nature of it was that it would go away on it's own.


I will ask my regular gastroenterologist about his opinion on this though. It just strikes me as weird to get the response "well some people just get them." as to why I have a fistula that is so difficult to fix. My fear is another colonoscopy though. The experience was terrible. With the seton already causing soreness in the anal area, clearing out my gut caused almost unbearable pain.


Thank you so much for your response. Although I wouldn't wish for anyone to be in a similar situation it's also comforting to know it's not just me, and to get some suggestions.
04-06-2014, 10:52 AM   #4
Trysha
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If you continue to have symptoms then it is a reason for further investigations.
Colonoscopy is the gold standard but it unfortunate that it goes with a very difficult prep.
It must have been very hard on you., but why were you not given proper sedation for the procedure as well as painkillers?
I have to have an upper endoscopy as well as a colonoscopy this week and dread the prep as well as the procedures... which I have had before but it does not get easier.,
and I don't have the complications that you have.Mine is crohn's. and I am well sedated for the scopes.
Advil and other NSAID drugs are know to cause flares in IBD patients and probably for others too.
Best to avoid them altogether and go for alternatives such as tylenol (paracetamol).
Feel better soon
Hugs and best wishes
Trysha
04-06-2014, 03:24 PM   #5
D Bergy
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Join Date: Apr 2007
I would get tested for mycoplasma. It can cause Crohns symptoms and can be part of Crohn's, but does not have to be. Zithromax will knock it back.

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
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