IBD stands for Inflammatory Bowel Disease, yet a large percentage of us with IBD (estimated to be upwards of 40%) experience extraintestinal manifestations (symptoms outside of our gut). These symptoms can sometimes be as hard to deal with as the abdominal symptoms of IBD; for some, they’re even worse.
Since I frequent so many IBD forums, I often get to read about the experiences of newly diagnosed people, but one thing that struck me as odd was how many “veteran’s” with IBD had no idea that they could even have extraintestinal manifestations. Hopefully, this post will shed some light on the topic.
I’ve experienced extraintestinal manifestations (and still do) for a good part of my illness, and while my gut shows no signs of inflammation, my body is certainly still affected.
Here are some of the issues I’ve had through my journey; Many were present only during an active flare:
- Joint pains, ranging from mild to severe
- Muscle soreness and tenderness
- Eye inflammation, called episcleritis (looks like this (WARNING: GRAPHIC))
- Mouth sores
- Back spasms (these became incredibly severe)
- Very sore pads of feet
- Burning in the mouth when eating certain foods (Ketchup, for example, would taste like extremely hot sauce)
Of course, there are many more of these symptoms that anyone with IBD can experience, and sometimes they happen in places you’d never expect. An example of this can be seen in a recent news report of a 10-year old boy who experienced ear problems and was eventually diagnosed with Crohn’s disease (Read about it HERE). The interesting part about extraintestinal manifestations is that they are often present without any symptoms in the gut, which can create much confusion for both patients and GI’s alike. Treating these symptoms can also be a challenge, since something as simple as taking NSAID’s for joint pains is a NO NO for people with IBD.
Having these problems can make living with IBD far more difficult, especially when those around you believe that everything is fine and dandy when you’re in remission or don’t have excruciating abdominal pain or 20+ bowel movements a day. It’s often really painful just to stand up or get out of bed when I have these joint pains. Just the other day, my daughter and I were at the movies and my knees felt like they were on fire. It was so uncomfortable that I almost had to walk out of the theater just to get some relief. Even now I find sitting or laying down to be quite bothersome and I often have to stand up just to trade one pain for another.
If you’re having these symptoms, don’t feel as if you’re alone. There are thousands of other’s who are writing about their experience on numerous blogs and. IBD forums. Don’t be afraid to join the conversation and exchange ideas about what’s helped you. And make sure that your GI knows about these symptoms so they can help to treat them.
Of you’re interested in reading more about the wide range of extraintestinal manifestations, have a look at this article in the journal Gastroenterology & Hepatology HERE
Do you have any extraintestinal manifestations? How have you been managing them?