Where did my Crohn's go?

[Mesopotamian]

Hello All, and let me start by wishing you the best in your life and in fighting your Crohn's and any other illness.

Let me jump to the story,

I was diagnosed with Crohn's back in 2010 (I was 24-25 at that time) after a colonoscopy that followed years of rectal bleeding, pain, fever that comes and goes, and all symptoms you would expect in an immune system disorder-not to mention I also have psoriasis-. The Colonoscopy showed colitis -inflammation- in multiple areas of the rectum, the colon, large intestines, end of small intestines and possibly, as the doctor though, the small intestines would have been involved as well. Also there were numerous polyps in all these areas. The doctor's diagnosis at that time was Crohn's.

I still remember his words when he said "you should know that this disease only gets worse and you will end up needing multiple surgeries" He prescribed me a medication that I never took as I was in denial. Never went back to a doctor about it until july, 2015 when I had another colonoscopy that I didn't follow up with because of insurance issue, however, the diagnosis was still Crohn's, this time only of the small intestines, and the bleeding continued.

It wasn't until 1 month or so ago when I had a colonoscopy that showed no colitis whatsoever or even scaring of the intestines, and that the entire intestines were completely clear of any sign of an abnormality. It has been another month now and I see no blood in stool, no pain, no nothing.

The doctor was talking about spontaneous remission since I took no medications - apart from 2 weeks of Pentasa a long time ago- . However, wouldn't there be any signs in the intestines that Crohn's was at least there? scars? anything of such nature considering that I had Crohn's for years?

Was it a misdiagnosis in the first place? as I'm holding the two colonoscopy reports in my hand I wonder how did this come to be? Should I take any medication to stop it from coming back?, Do I expect the disease to attack again? and most importantly, Shouldn't have grown instead of just vanishing?

Thank you all in advance.

 

[ronroush7]

Welcome. I would expect it to come back. I would find another doctor and tell him everything. Get his opinion.

 

[Mesopotamian]

Welcome. I would expect it to come back. I would find another doctor and tell him everything. Get his opinion.

HI there,
My understanding of Crohns is that the disease progresses with time and that the damage it does is irreversible. Please correct me if I'm wrong.

 

[ronroush7]

From time to time, you can go into remission. Mine has been mostly in the small bowel but in the last few years has also gone over in the colon.

 

[Mesopotamian]

From time to time, you can go into remission. Mine has been mostly in the small bowel but in the last few years has also gone over in the colon.

I totally understand what a remission is, however, what I don't understand is that within 6 years of the initial diagnosis I expected things to only get worse, not to find out that there's absolutely nothing wrong. Don't get me wrong as I'm grateful that the latter is the case, but my curious mind bugs me with how and why?

 

[ronroush7]

I don't know. Maybe it has something to with diet .

 

[Mesopotamian]

I don't know. Maybe it has something to with diet .

I smoked 1 pack a day since I was 16 and now I,m 31. My diet is nothing but healthy - fast food, processed food you name it-. I drink beer occasionally and never exercise.

 

[Layla]

I went from having pan-colitis with talk of surgery to remove the colon due to the severity of the disease to being medication and almost symptom free for many years. Scopes in those years showed no damage at all, so yes it's entirely possible.

Unfortunately the symptoms slowly returned and it now turns out to be Crohn's instead. Due to the unchecked simmering inflammation, which was thought to be IBS because the colon looked fine, I developed strictures in the small bowel that had to be removed and am now on maintenance medication to hopefully stop that from happening again.

There is no "standard" path for the disease to take, it's different for everyone. You may be lucky and remain in remission for years to come or you may not.
I would recommend to keep monitoring the situation actively both with blood tests and scopes to make sure you don't have simmering inflammation and for the rest cross your fingers and hope you stay well.