Earlier today, I noticed that a longtime writer of the website named Angie, posted a story where she mentioned some eye problems she’s dealing with. And she wanted to know if this type of thing could be related to her ulcerative colitis. And of course there’s a never ending list of website information if you do a google search on that topic, so instead, I went straight to the trusty website “PUBMED” (read my post on that if you haven’t already- here) and did a bit of research. As it turns out there is a long list of Extraintestinal Manifestations that are very well documented with regards to inflammatory bowel disease. Some you may have already experienced, or may in the future. It’s definitely worth the 20 minutes of your time to get up to speed on.
What Are Extraintestinal Manifestations (EIMS)
It’s a big long scary set of words, but what the heck are they right? Well, a very basic definition of extraintestinal manifestations is when other organ systems besides the intestines are adversely affected by inflammatory bowel disease such as… Ulcerative Colitis. One example that has commonly reported by users of iHaveUC is the super uncomfortable joint pains. According to one of the studies that I reviewed (“Extraintestinal manifestations of inflammatory bowel disease: Do they influence treatment and outcome?“), it is believed that between 5-20% of patients experience this exact joint pain extraintestinal manifestation. YIKES RIGHT? Well, I am sure that for quite a few of you, this you’re nodding your head because you are sitting right in that group. Don’t feel alone, I’m right there with you on that one, I for sure made that survey.
But joint pains are not the only common EIMS. There are several others that you may not be aware of, or might want to know about. Our skin, the stuff I remember being told in school is our most important shield which protects our entire body. Well, there are several extraintestinal manifestations that affect our outer layer. Two of these EIMS are called “Erythema nodosum” and “pyoderma gangrenosum“. In a different EIM study published in March of 2007, it was reported that between 3-12% of IBD patients will come down with this sort of thing along their journey of life. And after looking at the pictures, like the one to the left, I am positive I’ve had some of those marks on the back sides of my legs in the past as well. There are some different medical treatments that are well documented in the studies I’ve listed so far, and there are undoubtedly even more natural or holistic treatments that exist if you do some more searching on the specific topics. (Hey readers, if you have some effective treatment ideas for this, let them be known below!)
Now comes time for the eyes. Those things you’re looking out of. The sense that Dr. John Medina (author of Brain Rules, my all time favorite neurology book)feels trumps all others. So back to Angie’s story, the inspiration for this posting, yes indeed, there are what the medical folks say: “Ocular Manifestations” as well. What was interesting to read in one of the studies, is that approximately 3% of IBD patients may come down with these types of EIMS. And even more interesting was how one particular study mentioned that the eye manifestations are more common in Ulcerative Colitis patients compared to Crohn’s Disease folks. So Angie, you are for sure not alone, there are probably tens of thousands of people around the world who are going through or who have been through similar symptoms to what you described earlier. The itching, vision changes, and tearing up was all mentioned in the study.
So What’s Next
Like all of the stories and topics that we discuss here on iHaveUC, none of this is meant to freak anyone out. Or get anybody depressed and worried about the future. The future is, and will always be what you make of it. I myself am not one to sit at home and bang my head against the wall (although I do use this freaking computer thing way more than my roommate wife Michaela) just because I’m living with UC. And I sure as hell hope all of you who read this website live out all of your dreams. Now on the other hand, let’s be real, there is a ton of great information that we all can read up on, and get educated with. And if the time comes and we are worried that something is getting out of wack with regards to our body’s…there may just be some comforting news/studies explaining that we’re not alone. And not feeling alone is usually worth more than a Power Ball Jackpot when you have UC. I can’t tell you how happy I was to learn that the nasty skin issues I dealt with from my previous Humira use was not unique to just me.
Take care everyone. You’re definitely not alone, no matter how crazy you’re feeling and no matter how uncommon your EIM’s may be. And Angie, I’m hoping your eyes start feeling better really soon. Until next time, keep up the good fight with your UC,
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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