One lesson I’ve learned about IBD is that our symptoms can often be very misleading, and they sometimes don’t correlate with what’s actually going on in our gut. This can pose several problems as a patient and for the GI treating us.

If We Don’t Have Symptoms and Our Gut Is Inflamed.

When this happens, we’re often treated as if our illness isn’t “that bad” by family, friends or coworkers. Worse still is that we may be underestimating the amount of damaged being done to our body if there aren’t any obvious symptoms to suggest otherwise. This is especially common if you’re taking pain killers, using over-the-counter anti-diarrheal medication or even using something like medicinal marijuana. If you can’t feel pain or don’t have a true measure of your bowel movement frequency, things may seem fine on the outside.

I was in remission once, and it happened close to when I had my colon removed. “How is that even possible? Isn’t remission a good thing?” Sure, remission is our primary goal (since there is no cure yet), but the definition of remission can vary wildly! What does remission mean to you? If remission means being symptom-free, then that’s fine, but if you still have active inflammation, ulceration and poor lab results, is that enough? Is that true remission? I went into remission for a brief time in 2013 during a clinical drug I participated in, according to the scoring system used to evaluate my progress (called the CDAI or Crohn’s Disease Activity Index). My nurse would ask questions about my symptoms, bowel movement frequency, then take a few data points on my blood test and do some math to add up the score. At the start of my trial, my CDAI was over 450, which indicates severe disease activity, but after going on Prednisone, that score dropped to under 150, which would indicate remission. So why did I end up with an ostomy??

The problem with using only CDAI is that it doesn’t tell you what’s going on inside the gut. Fortunately, the clinical trial involved colonoscopies too, so my GI was able to see what kind of damage was present, and he found that my insides were MORE damaged after 6 months of treatment than before! So while my scores indicated that I was in remission, I certainly wasn’t in remission! Unfortunately, because Prednisone does a great job of masking symptoms (and causing new ones unrelated to IBD!), it’s hard to really know how well your IBD is being managed until you get tested, scoped, analyzed and biopsied. Like steroid therapy, taking pain killers can sometimes mask your true symptoms too, so how we feel (or don’t feel), can create a false sense of well-being.

If We Do Have Symptoms and Our Gut Is Not Inflamed.

On the opposite side of the spectrum is when we feel like absolute shit, yet our doctors can’t find anything physically wrong with us. This can be extremely frustrating, and we are often not taken seriously by our doctors; we also become much harder to treat when we “don’t look sick“. This scenario happens more often when we experience extraintestinal manifestations.

Beginning in early 2014, my joint pains came back for the first time since my ileostomy surgery (Aug 2013), and there was nothing that could be identified to explain what was going on: my joints weren’t swollen, my inflammatory markers were normal and there was no inflammation in my small intestine (confirmed through an ileoscopy). Because there was nothing visibly wrong, I didn’t have many options but to wait it out (it took nearly a year before they went away!)

Obviously, if your GI knows that you’ve got symptoms, yet doesn’t see active disease anywhere, it’ll take more effort and experimentation to treat you. This leads to further frustration and anxiety, and sometimes results in a referral to a mental health professional (yes, many of us are told that it’s all in our head!).

What to Do about This?

There isn’t an easy solution to this, but it’s important to always keep your doctor informed of any changes to your symptoms or bowel habits. If you are taking pain killers (especially narcotic pain killers), steroids or use cannabis (marijuana), know that they can mask symptoms of your illness, and you’ll want to have lab work and internal diagnostics done more often. You may not need to be scoped every two months, but you can ask about fecal testing that can be fairly reliable in measuring gut inflammation (called a fecal calprotectin test) or have your inflammatory markers tested more often.

If you find that you “don’t look sick” enough, and your illness is being downplayed, it might be opportunity to educate those around you on what living with an invisible illness can be like. I’ve written specifically about this topic in THIS post.

QUESTION: Have your symptoms ever been out of sync with your gut? How did you handle it?