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I can't figure out how come my Crohn's has always been mild to moderate and I developed a fistula

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Crohn's Disease
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Posted 2/8/2016 12:30 AM (GMT 0)
It's really perplexing for me. For 9 years, I didn't have a definite diagnosis of Crohn's. They were all suspicions as my scopes, CTs and MRIs were all clean. All what the biopsies showed was mild active disease; no characteristic of Crohn's was present. One biopsy showed chronic proctitis but didn't mention crohn's and another one mentioned mild ileitis and the rest mild active ileocolitis . How come this mild disease develops into a fistula? This disease never ceases to surprise me. Now it's acting violently and all my ordinary meds can't put it at bay. My GI told me to wait until Remicade start kicking in.
Posted 2/8/2016 12:50 AM (GMT 0)
Your symptoms never seemed "mild" to me. Unless they biopsy the right spot at the right time, it can be hard to accurately diagnose. And the progression of the disease is also unpredictable. Some people start with aggressive disease and it remains that way, others are always mild and others are all over the map. It probably isn't even useful to ponder, since you'll never find the answer;-)
Posted 2/8/2016 12:51 AM (GMT 0)
I had severe Crohn's colitis for years (as shown on scopes, not just me going by symptoms) and never developed a fistula. But I never had perianal disease, so maybe that's the difference between us. Didn't you have abscesses in the past? They often develop into fistulas.

In other words, I can't really answer your question. Crohn's is a weird disease. There are people who have permanent mild disease, but for the most part 'mild' Crohn's ends up being not so mild after all. Sooner or later most people with Crohn's do develop complications from it.
Posted 2/8/2016 1:47 AM (GMT 0)
I had mild disease too, but then I went almost 9 years med free.
Med free life always comes with price.
Mine was an abscess rupture and a fistula that remicade could barely affect.
My fistula will soon be 7 years old.
And yes, according to scopes, I have very mild to little signs of disease.
I still consider myself one of the lucky ones because aside from some fistula drainage, I have a very good quality of life.
Posted 2/8/2016 3:43 AM (GMT 0)
I guess every case is just different. I was dx over 10 years ago. I have a moderate to severe case as my recent colonoscopy states. Active disease all over the place. But I have ever only had rectal symptoms. Don't get me wrong, the rectal pain is extreme and unbearable! But, No D no C not even stomach pain normally. I pray that everything doesn't hit me all at once one day, but I know anything is possible with this dreadful disease especially when I can't tolerate a lot of the meds :-/
Posted 2/8/2016 12:33 PM (GMT 0)
I went 20+ years of limited care for my CD....I would definitely qualify as mild for the first 20 years post resection. Then I had my fistula. There are too many variables to say what made my fistula show up then....I expect the unexpected :-)
Posted 2/8/2016 8:11 PM (GMT 0)
I wasn't diagnosed when I got my fistula either. Tests weren't showing much (they wouldn't do a scope, they felt it was IBS). Even years after having my fistula fixed surgically they said my Crohn's was still mild. They felt it was mild after almost bleeding to death. Not so sure I agree with that. But it wasn't through-out my whole colon like it was a few years ago I guess.
Posted 2/9/2016 3:37 PM (GMT 0)
I developed fistulae while on medications and during what seemed to be quieter times of the disease, so it happens. Ileocolitis and ileitis are also terms used for Crohn's. The disease was once called regional ileitis.

I have to agree with BRelaxed - he's spot on. There's a percentage of Crohn's patients who develop fistulae, but I can't remember if it's around 15 or 25 percent. As far as I know I haven't developed any new fistulae since I had the lower third of my colon removed 15 years ago, which fits NCOT's hypothesis on perianal disease. But I didn't have the lower half of the rectum removed where I still have a fistula, though it's healed. 'Not sure what that means though.
Posted 2/9/2016 10:12 PM (GMT 0)
Have you ever had Prometheus labs done ? There are some genetic markers that can alert you to if you have the fistula forming type of crohns.
Posted 2/10/2016 2:24 AM (GMT 0)
What are the specific markers on the Prometheus test?
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