Should I get screened for Crohn's before fistula surgery?

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Should I get screened for Crohn's before fistula surgery?

Postby Rex2120 » 25 Jan 2016, 21:49

I am a 27 y/o male about to get surgery for a fistula diagnosed a couple of months ago. I have a history of intestinal problems going back to 2008 (gas, cramps, diarrhea). Doctor said I either had IBS, Crohn's or ulcerative colitis. I didn't have insurance at the time so I stopped trying to get a diagnosis as soon as they wanted to do a $1,600 colonoscopy. I had problems on and off for a few more years after that, and actually had significant long-term improvement after a soft diagnosis of IBS and a prescription for Bentyl.

In mid-2013 I started having intense pain with BMs, soon followed by bleeding on the TP and in the toilet bowl. I self-diagnosed hemorrhoids and started treating with Preparation H. A couple months later, seeing no improvement, I went to a family doctor and was diagnosed with an anal fissure. I got a prescription for lidocaine, which didn't really help. Miralax was my savior during this period, keeping pain and bleeding to a minimum. About a year ago, during what I thought was a remission from my fissure, I started to have anla swelling, stinging and small amounts of yellowish discharge from the anus during the day. My family doctor couldn't see anything that looked abnormal but suggested I save up for the $350 initial appointment with a CRS.

I finally landed a job with health insurance a few months ago and promptly went to a CRS, who after a (very) brief exam diagnosed me with a fistula. He gave me a quick explanation of what a fistula is, handed me some pamphlets and said we could do surgery next week. He also suggested I get checked out for my intestinal issues as well after we get the fistula taken care of (I have had some diarrhea and cramping issues on and off since September). He said he also might use a tool to "stretch" the anal cavity, a procedure that is supposed to relax the area and allow the fissure to heal.

Now, fortunately I didn't have enough sick time accrued to take a week off for surgery so I didn't rush in to getting cut open. Looking up some other stories, it seems like Crohn's patients have a hard time recovering from fistula surgery. I even read one story of a guy who didn't get a diagnosis until after his surgery and was left with a "keyhole deformity," which sounds horrible.

So, my question is (especially for anyone who has had both Crohn's and a fistula), should I delay my surgery until I can get a colonoscopy and tests for Crohn's? Or am I going to have to get the surgery eventually anyway and might as well not prolong my suffering? I've thought about asking my surgeon, but I can imagine he'd rather I take the "give the surgeon money now" option. Any help is appreciated!
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Re: Should I get screened for Crohn's before fistula surgery

Postby Manitourose » 27 Jan 2016, 16:46

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!
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Re: Should I get screened for Crohn's before fistula surgery

Postby Rex2120 » 27 Jan 2016, 20:07

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!


Thanks for the reply Manitourose! You really have no idea how good it feels to talk to someone about this. I will review those links thoroughly - thanks!

My fissure is exactly at 12 o'clock, and the surgeon said the fistula is offset a little to the right of the fissure (about 1 o'clock judging by the sketch he drew on the pamphlet) and is likely the result of a "secondary infection" from the fissure. So I suppose that's a good sign in terms of Crohn's.

He did not get into details about simple, complex, etc. and did not mention a seton. He did say what I'm experiencing is common, adding if I get it done on a Friday I should be back to work on Monday... So maybe that means he thinks it's simple?? He didn't use any kind of scope or imaging technique -- just a visual examination. I will call back and ask tomorrow, though.

Thanks again for the input - I set up an appointment with my family doctor for Monday to be seen by a specialist. Today was a really bad day for my bowel problems so I suppose the sooner the better on that front. Are there any known issues with getting a colonoscopy while having an active fissure and fistula?

On a related note, has anyone had success treating both a fissure and fistula at the same time? My fistula actually doesn't cause much pain most of the time, but the fissure is a living hell. Last year was great and I thought the fissure was healed after continued use of the Miralax, but when my digestive issues came back I had to stop use and the fissure ripped back open. Or does the fistula surgery seem to help the fissure as well? (I know both of the surgeries involve basically cutting into the sphincter muscle). Thanks for your input!
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Re: Should I get screened for Crohn's before fistula surgery

Postby Malcolm8888 » 11 Feb 2016, 03:16

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?
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Re: Should I get screened for Crohn's before fistula surgery

Postby Rex2120 » 24 May 2016, 09:02

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?

Hi Malcolm, no I have not gone in for surgery nor have I got screened for Crohns. I'm really bad about putting stuff like this off as you can tell.

I did go to the GI doc last week and he said to rule out Crohns they'll have to do a colonoscopy. This has me real worried as I don't want the scope irritating the area, making my fissure worse or God forbid irritating the infection at the fistula site. Has anyone else here undergone a colonoscopy with a fistula/fissure? How did it turn out?
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Re: Should I get screened for Crohn's before fistula surgery

Postby Manitourose » 24 May 2016, 10:08

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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Re: Should I get screened for Crohn's before fistula surgery

Postby Rex2120 » 29 May 2016, 03:26

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. :)


Hi Manitourose, thanks for sharing your story! I think I'm finally coming to terms with the fact I probably need to get the colonoscopy done before surgery, partly thanks to your story. While I'm now pretty confident my fissure won't be worsened by the scope, I still have concerns about maybe a hidden abscess being somewhere in there getting irritated/broken. Also I'm worried about the prep worsening the infection at the fistula site (I've heard it causes lots of diarrhea) and even worse, breaking open the fissure and causing lots of bleeding (I had occasionally startling amounts of blood before the fissure healed a bit this year). Guess I need to be a big boy and call the doctor's office and ask them about all these things directly. I'll be sure to report back what I learn. Thanks again!!!
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Re: Should I get screened for Crohn's before fistula surgery

Postby Manitourose » 30 May 2016, 09:48

Don't stress yourself too much regarding the fistula. They perform these all the time on individuals with fistulas. I had my surgery first as I stated above but only because of time constraints, I was doing clinicals 9 days after surgery. However, when you have the fistula surgery they clean out the fistula tract during the procedure. Also your fistula tract is already prone to infection (as it likely began due to a small one) and our bodies are very good at dealing with fecal matter down there. I recall asking the doctor if I waited 6 months for the surgery how likely was it to worsen and he stated that in 6 months like the likelihood of it become more complex was low. The chances of a hidden abscess getting broken during the prep is fairly equal to your everyday bm's. Once the prep kicks in after a 1st semi-normal bm, it is more like peeing from that area. Not to be gross. :) Although you stay close to the bathroom for a few hours once you take the prep, I found it to be less traumatizing down there than a difficult bm or an experience with a stomach bug. The prep is also made up of a lot of saline solution which keeps the area down there fairly clean. At the same time, the solution is mixed with whatever they use and I didn't experience any burning sensation. But because it is like peeing as I stated (or at least my experience) you don't experience tons of stress in the anal canal. The bm's progressively become less stool and instead a yellow clear color that demonstrates the colon is cleaned.
No problem! Hang in there, just know it isn't too bad... the worry is worse! The doctors also experience this often so have no fear of checking in with the nurses with your questions, they are there to help. :)
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Re: Should I get screened for Crohn's before fistula surgery

Postby Cporosus1 » 12 Jul 2016, 21:46

Hey just saw your post. If you have a history of digestive issues and a fistula then you should get a colonoscopy WITH biopsies to conclusively rule Crohn's out (while a colonoscopy if often enough alone, biopsies are the only way to 100% know for sure, particularly if you are not having active inflammation). But, fear not, despite what you might read people (not doctors, just regular people) say online, perianal abscesses/fistulas are 90% of the time not associated with any underlying disease....5% of the time its diabeters, AIDS or something else, while the other 5% is Crohn's disease. The reason it is so heavily associated with Crohn's is that a very high percentage of people with Crohn's will develop perianal disease (abscesses, fistulas, skin tags, etc.), but it still represents a small minority of people who actually get abscesses in fistulas. Perianal problems more often occur for any number of other reasons. In my family (virtually everyone on my mother's side) suffers from hemorrhoids and skin tags (I've had a skin-tag since I was 10, due to a hemorrhoid) and my uncle and I both had perianal abscess and fistula....his was 10 years ago and mine was 2 years ago. We both healed fully in the same amount of time (3 months from fistulotomy lay-open) and we both have experienced no new symptoms. In short, just trying to give you some reassurance from what the actual peer-reviewed studies say, as opposed to the fear-mongering you might get on some Crohn's websites. I remember I went to one after I had my abscess and they had me convinced that I must have Crohn's since I had an abscess. I was freaking out and went through a severe panic attack....only to be told by 3 different experts in perianal disease that it was ridiculous and that perianal abscesses were very common and only a small number are Crohn's. Further more, all scientific studies list the rate of Crohn's in perianal abscess is 5%.
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Re: Should I get screened for Crohn's before fistula surgery

Postby Rex2120 » 28 Aug 2016, 22:46

Hey everybody, sorry for the long wait before an update but a lot has been happening since! Long story short, the procedure was nothing to be afraid of. The prep was not nearly as painful as I feared and the procedure didn't make my fissures or fistula any worse (in fact I've been doing much better the past couple of months). The colonoscopy revealed some erosion in my terminal ilium and an endoscopy revealed a duodenal ulcer. A few weeks later they had me swallow a PillCam and found, as my doctor put it, an "impressive amount" of ulceration in my small bowel. A few blood tests later and I find myself with a Crohn's diagnosis.

Gotta say it's not the answer I wanted, but I am very glad to have gotten over my fears and gotten the procedure done. I am now getting treatment for this disease and I have a much better, more complete picture of my medical situation that me and my doctors can consider before I go under the knife for any kind of fistula surgery. In fact I am meeting with the GI tomorrow to discuss that very topic, among others.

Thanks so much for the encouragement here, everybody. You guys really helped me gain the courage to follow through with the colonoscopy and now as I result I am getting the treatment I need. It really was an incredibly easy procedure. The hard part now is getting my Crohn's in remission, which I'm hoping will help the fistula and fissure as well. This damn duodenal ulcer has been killing me over the past couple of months and I'm hoping whatever pill they put me on next will finally calm my stomach down a bit. Thanks again, and peace and good vibes!
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