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 shortly after being diagnosed 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.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
Awesome post! I think it is so waaaaay important to be informed about all the possibilities of UC…it is the lifetime gift that keeps giving and a full body roller-coaster experience!
In addition to knowing all about the possibilities of UC people should do the same for ALL meds-you should read the physician portion and “other potential/rare side effects”-I usually get those I’m what my doctor calls that 1% patient (Adam’s 3%}…traditional and alternative meds(yes alternative meds do have side effects)and you still have to be careful about mixing and matching and inform ALL your doctors of EVERYTHING you are taking!
As Adam said…be informed…KNOWLEDGE IS POWER…UC is (probably) a lifetime disease-IBD not ibS…so we’ll keep our fingers crossed for continued research and keep fighting the battles in the UC war! :-)
Good health all and thanks as always Adam!
Yo What up Shelly,
Full on agree.
Get your learn on.
Get your read on.
Get your freak on…whatever right:)
And your guitar rock on! :-)
…fighting the Grimm Reaper UC…damn…never fails…about 2 months…
My doctor told me about all these nasty problems that can come with having UC. I do have arthritis now, not happy about that. My eye doctor has warned me about eye problems and keeps a close watch out for those. I’m wondering since I had surgery, that I’m not free of these other diseases. It seems that I am not. So UC seems to be the disease that keeps on giving even if you take the colon out. My arthritis doctor wants to start me on Humira to help with the arthritis pain and joint destruction. I’m scared. It makes me cry to think about it. I like to, at least pretend, that I’m “normal” and having to deal with these other issues reminds me that I am not “normal”. Stupid UC! I wish UC never existed, or Crohns either or any other IBD. Sorry for being a downer, I’m just so bummed out about it all. Thanks for listening.
Whats up Karen,
Thanks for writing, and for sure it is tough. There’s a ton of others in the same boat, and although its not easy, life for sure could be worse.
But you got to do me a favor, next time you’re upset with UC, and not feeling good about the current situation, make sure to remember that you are NOT alone, and all the things you mentioned are common. Heck, I’ve one of my best friends who I’ve mentioned before here has arthritis and he takes Humira (and has had good results with it for several years now) and he doesn’t even have UC. I wish you and your fam the very best moving forward, and don’t you ever be sorry for feeling down. Better to let it out than hold it in. Take care, Adam
This post came at just the right time, Adam. I’ve recently developed hot, red, itchy, raised, rashy spots on my shins. I suspected it was something to do with UC…inflammation affecting other parts of my body, like the joint pain, but I never thought it would come out in my skin! IF that’s what it is. I’m self diagnosing here…but I think it’s time to take a trip to the GI. Never ending hell spiral! Keeping my chin up, at least trying to. Hugs to you over there, Karen!
Best to you ALL!
What up girl? Been wondering where you at!
Sorry to hear about the skin stuff, but yeah, roll over to the GI doc and maybe they’ll have some more thoughts. I remember getting some skin biopsies a ways back when my back was getting all crazy, but it was more related to humira side effects I/we/they believed, but for sure, skin stuff is a possiblity.
I hope whatever it is resolves soon, and great to hear from you. (It’s crazy to see a comment from someone like you with your picture, and then to be able to instantly remember your story)…more people here, add your pictures at http://www.gravitar.com (right Bev????:))
Right you are Adam!
Good info Adam!
i’ve definitely had some extra problems because of UC. my anemia is the worst and i haven’t been able to correct it since diagnosis. the joint pains are a given as well as the frozen joints.
i’d also like to warn UCer’s of ocular migraines. i had one in august this year and i thought i was going blind. it’s like a black and white spinning wheel that enters your vision and you can’t see around it. we had an ambulance come because we thought it was a stroke. turns out, ocular migraines can happen due to dehydration (in my case from diarrhea) and also a drug i was taking called Bentyl. they are not serious and don’t need medical attention, but it was the first time i had one and it was a terrifying experience.
here’s what it looks like:
That sure does sound scary, especially if its your first with that Ocular migraines. Glad you came out OK:)
Thanks for sharing that!
Sure there’s others who have gone through or may someday.
Thanks again for the additional info!
Yo Adam! You da man!! What a great article! Thanks so much for the info and support. To be completely honest, I called my pcp at home yesterday morn (I think I woke her up! Oops!) and told her what was going on…my 7 yr old son did tell me that a kid in his 2nd grade class had pink eye last week so I chalked it up as being that..not knowing for certain however. My pcp prescribed me some antibiotic eye drops to use over this next week…the eyes are better since writing the post a few nights ago. They are still burning, itchy, watery and a bit red though. I’ve always had dry, itchy eyes, especially when allergies kick in but lately the redness has been bad. I started the drops yesterday morn so ill let you all know what’s up as the week progresses. If it is pink eye, or another viral or bacterial infection, I’m sure it hit me hard because of my jacked up immune system being all out of whack. I deal with tongue ulcerations, severe joint swelling and pain, strange blood blisters that hurt like a mother, other ulcer-like sores on my fingers and toes, swollen, red and hot soft tissue (tendons and ligaments), irregular heart beats, night sweats, etc. the list is endless. Every day is uncertain. All of my doctors, past and present, say that it’s all related to my IBD! I’m so sick of it all, yet, so used to it! It sucks but that’s life and I have more important things to worry about…like my husband and kids. Don’t get me wrong, when it hits me, it hits hard…I cannot remember the last time I had a “normal” bm, without blood or mucus…and I know my health is important but without thinking of my family, I would just be depressed and feel sorry for myself, like I used to do. Any-who, thanks again for the love, and I’ll keep ya’ll posted. Until next time, keep your heads up and hope your health stays decent.
What up Angie!
Great to hear from you and I’m hoping the eye stuff gets better quick for you!
Thanks for being cool with me writing a story and throwing your name in (you brought up a super important topic/theme that we don’t rap about as much as we could here:)
Ciaos for nows,
Wow….I thought I was the only person who got ocular migraines. This has been going on for YEARS now (probably 20 or more). I was like you….the first one I got…I freaked out. I remember leaving work and going to my Opthalmologist. I still get them to this day. Sometimes, both eyes are affected. I will get it in the one eye and then shortly thereafter I get it in the other eye. My episodes last 15-20 minutes (each eye). I have to admit….it is still a little scary when I get them. I have been to a specialist and he said that ocular migraines USUALLY don’t pose a problem. He said that if they last more than 20 minutes, then there is a problem. So each time I get them, I start praying that they don’t last longer than 20 minutes. Good luck Joanna and don’t be too alarmed with this. Like I said….it has been YEARS since I have gotten ocular migraines. BTW, I was diagnosed with UC last October (2011) but I truly believe I have had IBS for many years. So this problem just may be related to UC.
it definitely freaked me out, too!! i have seen sparkles in my eyes since i was diagnosed- i usually call them fireworks, but the ocular migraine was so different. mine probably lasted 20-30 minutes and it was hard for me to see because i wear glasses. i remember by the time i got on the ambulance, it was already over but i figured i should get it checked out anyway. the doctor looked at my eyes and said they looked fine- no inflammation. i guess it’s just one of the UC side effects we are stuck with.
Yeah….another thing we have to live with. UC wasn’t bad enough. I remember being at a festival when I got an episode. I was very nervous but it went away after a while. We just have to learn to relax when we get an episode. I usually lay down. close my eyes and just wait until it’s over. Knock on wood….I haven’t had any episodes in a while. At one point, I got an episode a couple of months apart. I contacted my Opthalmologist that time and he checked my eyes. Everyone was A-okay. THANK GOD!! I wonder if there are any other UC’ers out there with this problem.
Adam, if you read this post, did you ever hear of this being related to UC????
I haven’t heard of that yet, but who knows, you could do some searching on PubMed, and maybe come up with some interesting stuff/studies. Might be worth a crack.
Thanks Adam….I will take a look!
I don’t want to scare anyone but I think it is important to share our experiences. My daughter was diagnosed in 2010 (17 at the time) with UC and has had a rough time getting it under control. She is prednisone dependent and has tried all of the big guns including Remicade. She was hospitalized for two weeks and ended up with vasculitis in her left eye. Most doctors she has seen think it was a reaction to Remicade while a couple have said they believe it is just the nature autoimmune disease to happen in two’s. She has had two eye surgeries and a detached retina. She is now legally blind with very blurred tunnel vision in that eye. She was on a chemotherapy infusion for 4 months for the vasculitis which seemed to have controlled the colitis as well but it is too toxic to use for too long. She was put on Azathioprine at 100mg once per day and still was not able to wean off the prednisone until we recently took her to see a wonderful doctor at the Mayo Clinic in Minnesota. The doctor discovered that she has been under medicated because they have been dosing her by her weight. Not everyone metabolizes the medication the same and her blood tests showed that she needs a much higher dose. She is now taking 200mg. The doctor also split the dose to 100mg in the morning and 100mg at night – she said that too can help. She is now down to 11mg of prednisone and no blood for 5 days!!! Yeah! Anyone taking Azathioprine (Mercaptepurine, Imuran) should talk to their doctors and make sure they are in a therapeutic range. It is a simple blood test to see how you are metabolizing the medication but I think there is only one lab (Prometheus Laboratory) in the country that processes the test so your doctor will have to send it there and insurance doesn’t always pay for it. My daughter only had it done when she was first put on the drug to make sure she “could” metabolize it but not later again to get her into the therapeutic range. If you are not in that range it won’t work!
Best wishes to all…my heart is with you!