No sign of IBD when in remission?

[JessicaLeigh]

Hello everyone, I haven't posted on here in a while, but I have a question about IBD going undetected when in remission.

Everyone thought I had crohn's disease based on my symptoms and clear signs of inflammation. I had stricturing, resulting in painful bowel movements, abdominal pain, difficulty passing bowel movements, thin stools, and rectal bleeding whenever the stools weren't thin. I had elevated CRP an ESR. I took some prednisone for an upper-respiratory infection and my BMs were AMAZING! Better than ever before. So easy to pass, no pain, a good width, etc.

I went to see a new GI, but by the time of the appointment, I hadn't bled in weeks. My bowels were still kind of off, but there were no more fissures or bleeding. I just had a colonoscopy done, and everything looked normal. No signs of inflammation or damage. This is consistent with my ease of bowel movements lately. I just had a gigantic stool, maybe 3 inches in diameter with no pain at all. VERY different from what I was experiencing in January and February.

My question is: is it possible that I really do have some sort of IBD, but am now in remission? Can there be no signs of IBD when in remission?

I refuse to believe that what I experienced was just IBS. I had very clear signs of inflammation, and I just don't see how I was imagining it all. Not only that, but I have very bad health problems, and ALL of them could be accounted for by IBD extra intestinal manifestations. I already have one autoimmune disease.

 

[Tesscorm]

My son has been diagnosed with crohns. Prior to diagnosis his symptoms were diarrhea, weight loss, loss of appetite, fevers, night sweats, canker sores, anemia, heart burn, nausea, back ache, low HGB, elevated CRP and ESR (plus other lab indications). Colonoscopy showed some inflammation in his duodenum and colon but mostly in his TI region. MRE also showed a bit of stricturing.

His first treatment, exclusive enteral nutrition, pushed him into clniical remission - no outward symptoms but MREs continued to show TI inflammation, slight stricture, improvement in CRP, ESR but still elevated and some improvement in HGB but still just below normal. He also would have sporadic days when he felt 'off' - some diarrhea, some back ache, some discomfort with a fissure.

He started remicade last February and I would now consider him in complete (biochemical) remission (will do colonoscopy again in a few months to confirm) - all symptoms are gone and bloodwork is all within normal ranges. Last MRE showed stricture is gone. He will periodically have the odd symptom but I'm beginning to believe they are no more crohns related than if I were to have the odd day of nausea or a sore back after some sports activity.

In short, he really has no signs of crohns right now.

 

[Tesscorm]

However, I do want to add... crohns flares can come and go, however, I believe, after a time, damage can be done if no treatment is given.

While my son was in clinical remission (was on supplement enteral nutrition as his only treatment), he did have virtually no symptoms yet inflammation was continuing to simmer and would eventually have done some damage.

If you do feel that you have IBD and not IBS, I would request that you continue to be monitored. A fecal calprotectin test (stool test) is an easy non-invasive test that can give an indication of intestinal inflammation (IBS will not cause inflammation).

 

[JessicaLeigh]

Right now there are no signs of inflammation according to the colonoscopy, and my symptoms and BMs coincide with that. I am just afraid that now I am going to be written off as an IBS patient, and not monitored correctly. I still think that IBD is a possibility because of my previous symptoms. I believe that in January and February I was in some sort of inflammatory flare up, but am now in remission, hence the normal colonoscopy. I just don't know if IBD can go completely undetected during remission. Of course after many years of having it, there will be damage and scarring, but what about someone who has only experienced a few flares? January-February was the first CLEAR inflammatory episode, but I've had less severe episodes since I was a child.

 

[theOcean]

I think it's totally possible to have IBD but have no signs of it in remission. Mine was very severe and is a case of fistulizing Crohn's and runs in my family, but I've been in remission since last October/November. When I had a colonoscopy in February, my GI said my colon had healed so well that it looked like I didn't have any IBD at all. But I still do, obviously, and still take medication for it to keep me in remission.

 

[JessicaLeigh]

I think it's totally possible to have IBD but have no signs of it in remission. Mine was very severe and is a case of fistulizing Crohn's and runs in my family, but I've been in remission since last October/November. When I had a colonoscopy in February, my GI said my colon had healed so well that it looked like I didn't have any IBD at all. But I still do, obviously, and still take medication for it to keep me in remission.

It's so great that you're in remission. This post made me feel a lot better. Sometimes I'm afraid that I'm reaching for explanations because I want a real diagnosis. I feel more confident in bringing it up to my doctor now. I just refuse to believe that I never had inflammation because of one normal colonoscopy. This diagnosis thing is a lot harder than I anticipated!

 

[Jmrogers4]

When my son was in remission scopes were clean and showed only clean, healthy pink tissue. When he flared several months later it was a different story and inflammation was clearly present. The GI stated after the clean scopes he would have not been able to tell that he had Crohn's if he didn't know better.

 

[theOcean]

It's so great that you're in remission. This post made me feel a lot better. Sometimes I'm afraid that I'm reaching for explanations because I want a real diagnosis. I feel more confident in bringing it up to my doctor now. I just refuse to believe that I never had inflammation because of one normal colonoscopy. This diagnosis thing is a lot harder than I anticipated!

But that's exactly why a diagnosis is so important! When it comes to your health you really have to try as hard as possible to push for things if you feel people aren't listening. That's what dealing with Crohn's and having to take care of myself has taught me. No one knows your body better than you do. The next time that you do get inflamed, it might be a good idea to request a colonoscopy with biopsies to confirm the diagnosis.