Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » How long after diagnosis (or symptoms started) before experiencing a fistula?

View Poll Results: How long after diagnosis (or symptoms) before developing any kind of fistula?
This was my first symptom / had one at diagnosis 12 23.53%
<2 years 10 19.61%
2-5 years 3 5.88%
5-10 years 4 7.84%
10-20 years 4 7.84%
>20 years 2 3.92%
Never had a fistula. 16 31.37%
Voters: 51. You may not vote on this poll

02-13-2013, 06:40 AM   #1
Senior Member
Lustforlife's Avatar
Join Date: Dec 2012
Location: Georgia
How long after diagnosis (or symptoms started) before experiencing a fistula?

I'm curious to see different people's experience with fistulae and if it seemed to happen quickly or gradually over time. And did you know what was happening at the time?
Dx Gastritis/GERD/maybe IBS - Jan. 2013
03-01-2013, 07:43 AM   #2
KWalker's Avatar
I'm sorry I don't have experience with fistulas but I have suffered with abscesses and those are relatively similar. Keep in mind everybody is different, but for me my abscess appeared one morning and then I ignored it and it slowly progressed over time. I don't know if fistulas are the same but the abscess didn't just get bad right away. It started small and not very painful and then the longer I left it the more it got worse. To give you some more details, and I shouldn't have done this, but I left mine for 3 years before I got surgery for it.

As far as how I was doing at that time, many people seem to just develop these kinds of things during times where they feel "normal" but many people also believe there is a link to developing fistulas/abscesses during flares. I don't know if I was flaring at the time but I definitely wasn't in remission.

I'm sure I'm not giving you enough information and I apologize for that but I'm going to tag Sailorluna here and I hope she can give you some more info.
Age 2 (1992)

Previous Meds:
Methotrexate (oral)
Methotrexate (injections)

Current Treatment:
200mg Simponi, Psyllium
03-01-2013, 08:30 AM   #3
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Join Date: May 2012
Location: Ontario

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Had fistulas for 7 years before diagnosis. It was 5 years before I had surgery because every surgeon I saw told me that no treatment was required.
03-01-2013, 01:02 PM   #4
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Dunbar's Avatar
Join Date: Jul 2010
Location: Prince George, British Columbia

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I had them apparently for years, anal scars were actually the final clue for diagnoses. I had assumed they were hemroids or some such thing, I'd use witch hazel, sitz, creams etc and they'd never occurred to me to stand on a mirror to see what was going on. But I must add that I had never had a bad flare until four years ago and then I had three fistula on the go at once. Everything seems to go to hell at the same time ,lucky me :/
Forgive everyone, everything
03-01-2013, 04:47 PM   #5
xX_LittleMissValentine_Xx's Avatar
Join Date: May 2009
Location: Reading, United Kingdom

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It was four years when we found them on an MRI scan, not sure how long they were there for.
Diagnosed with CD March 08 at 17
Currently on:


My blog:
03-01-2013, 06:43 PM   #6
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
My daughter was diagnosed on the operating table and by the description the surgeon gave there is no doubt in my mind that she had a fistula/s present.

My son was diagnosed with a fistula about 2.5 weeks after his Crohn's diagnosis. He was symptomatic of a psoas abscess and they then found a communicating fistula.

Mum of 2 kids with Crohn's.
03-02-2013, 03:44 PM   #7
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Join Date: Oct 2010
Location: Coon Rapids, Minnesota

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I have likely had Crohns since 1999 (not diagnosed until 2010) and believe my first fistula (recto-vag) showed up in 2003 after childbirth. The second one (peri-rectal) arrived in 2011.

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
03-05-2013, 06:16 AM   #8
Catherine's Avatar
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Sarah developed a fistula within 12 months of dx while appearing to be in clinical remission.
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-06-2013, 04:10 AM   #9
Bamafan94's Avatar
Join Date: Jan 2013
Location: Alabama

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I was diagnosed with a rectal fistula a year and a half after my Crohn's diagnosis. Excruciating is not a strong enough word to describe it. Imuran and Remicade kept it closed it, but the skin around it started to tear, and basically, I just got tired of knowing it was there and being afraid it would reopen. Had surgery to fix it in 2003. No more problems with it.
Was diagnosed in December 2012 with 4 tiny fistulas connecting my small intestine to my colon. I'm taking Remicade to try and close them. I'm only in a minor flare-up so I don't understand how I ended up with them. I have no pain at all from them. My GI says you don't have nerves in that area. I was not aware of that.
I have one more Remicade infusion in two weeks. I guess I'll see where I go from there. I really want to avoid surgery of course, so I hope they close up.

Current medications:
Imuran 150mg
Lialda 2.4gr
Levbid .375mg twice a day
03-06-2013, 04:50 AM   #10
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Join Date: Jan 2013
Location: Alabama

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Forgot to mention that the area where the fistulas are is a new patch of Crohn's. It developed a few inches from the original patch. I had no idea that had happened. I stay on my meds. This has completely blindsided me!
03-06-2013, 08:26 AM   #11
Senior Member
Join Date: Aug 2010
I had a perianal fistula when I was diagnosed. I had symptoms for about 7 months before I got my dx, and the fistula showed up after about 5 months. I also had fissures and an abscess, along with diarrhea and erythema nodosum.
03-09-2013, 02:21 AM   #12
Join Date: Feb 2011
Location: Launceston, Tasmania, Australia
I was diagnosed with crohns disease in 2003 and had my first fistula in 2007. I was very ill, fainting, vomiting, passing blood, fevers, canker sores in mouth and sores on legs. I thought I had an anal ulcer but it was a fistula and burst leaving me with a tear in the anus, It was very very painful and I could hardly walk. I had another last year, but this time it was worse and I was hospitalised and had emergency surgery using setons. I had them in for five months and was started on Infliximab and am healing gradually. Am really praying for a better answer than being on an immusuppressent drug. Has anybody heard of or experienced fecal implants?
03-09-2013, 04:50 AM   #13
Bamafan94's Avatar
Join Date: Jan 2013
Location: Alabama

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That all sounds horrible! My heart goes out to you. Hope you get better very soon!

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