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Manitourose wrote:Welcome Rex2120. I'm so sorry you are having to go through this but am glad you got to see a CRS.
I wish I could give you more information about this topic and decision you have to make. Unfortunately it's a tough one and you are doing the right thing reaching out for information from others.
Here is another forum about those with IBD who have had fistula experiences:
http://www.ibdsupport.org/forums/forum/ ... a-support/
There is also a section here about those conditions but I think you will find the one above is more frequented from my experience: crohn-s-colitis-ibs-f30.html
Did your doctor state if the fistula was a "simple" fistula or "complex"? Did he mention "seton"
Did he/she describe the position of where the fistula is -- posterior or anterior or sometimes they use a clock to describe the position, 6 (posterior) or 12 (anterior)? Posterior (towards the tailbone) is the most common position of a fissure.
The reason I ask is because IBD (Crohn's) related fissures may not always present in the posterior position and may account at times for more complex fistulas or multiple fissures at once.
I do think it's important to be screened by a gastroenterologist to check out IBD or other issues that may be causing your digestive issues. Once that is sorted it will certainly make you feel better. If your fistula is simple and not complex and is considered "low" meaning it's lower in the anal canal near the exit, these are less likely to quickly turn complex. Complex fistulas generally require seton threads and at least a 2nd surgery to treat. If it isn't complex and you do want to rule out some digestive issues first you may have some time to do that before your fistula surgery if you research it and decide.
I'm not basing this off literature, but off my own experience when I asked my CRS if my surgery could wait from June till December.. He said the likelihood of my simple fistula becoming more complex was possible but low. I did decide to go ahead with the surgery right away though.
Definitely ask your surgeon too! You want his care and being a fistula surgery is the main option for treatment. So he'll get something at some point. Most important is your well being and feeling well. When recovering from a fistulotomy you want to avoid constipation and diarrhea if you can to allow healing. If with most measures you haven't been able to do this, going to the gastroenterologist to get more information may be a good step 1st.
Welcome again!
Malcolm8888 wrote:Hi Rex sorry to hear about your fistula. I was in the exact position you are in right now. Have you had surgery yet? Did you get screened for crohns?
Manitourose wrote:Hey all --
In regards to this question, anyone can PM me about it. Everyone's experiences are different and I'll say that up front. However, I've done all of the above while having a chronic fissure. There is also another thread on the board I'd have to look for where another individual had his colonoscopy with a fissure as well and did a great outline of his experience.
I also previously had a fistula that was repaired about 1 and 1/2 years before I had my colonoscopy.
The colonoscopy was one of the easiest tests I have ever done after all my fear and worries. I had it done to look for Crohn's disease.
The procedure itself was no problem. The fasting isn't bad if you prepare ahead what you can have. The prescribed drink I had was "stronger" (not sure what word to describe the difference) than those who had the Miralax and Gatorade combination. It was called SuPrep Bowel Prep. My doctor used this because it was fully gluten free and I had learned about 3 months previously I had celiac disease. Not to mention he said it clears you out to the point you could "eat off the colon" it's so clean which allows them to really investigate.
As for my fissure, my doctor knew about it and said not to worry. The tube is tiny for one. The prep itself I handled preparing with what I had read online -- wipes, vaseline, etc. It did not make it worse at all. Also given the fact I was dealing with a chronic non healing fissure I couldn't see the point of hoping it would heal (it hadn't and I had waited) before doing the colonoscopy. I knew the sooner I knew what was going on with my body, the sooner I would be closer to answers and treatment. If in the small chance it is Crohn's, it's so important to start treatment. Delaying it will do WAY more damage permanently than even there is some irritation to the fissure.
The thing to remember is it is a MUCH simpler procedure than we all make it out to be in our heads. I wish I had listened more to others saying that than my inner panic voice.
As for the turn out? I did have inflammation spotted in my colon but many biopsies can back normal and the inflammation did not look like Crohn's or UC. My fissure healed shockingly after 4 full months of being gluten free for celiac disease. So I was healed 1 month after the colonoscopy. I had 2 chronic fissures over the course of 2 years and both were considered deep by the CRS and 1 CRS wanted to operate. My chronic fissures and my simple fistula were linked to my body's autoimmune response with celiac. Very uncommon but I'll be seeing doctors at Columbia's Celiac Center to submit this experience so more information will become available.
Long story sorry for that. But I hope that helps. :)
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