Skip to content

“Extraintestional Manifestations”

Hello fellow colitis people. Quick update on me…still flarin’ big time…veered away from SCD for a little while seeing I was just getting more ill and losing a ton of weight. I had to…but I have the intention of going back if and when I ever heal up. I’ll give it another whirl if that ever happens! Still on prednisone (can’t seem to get off that crap!), sulfasalazine, mesalamine enemas, vit D, folic acid, and methotrexate (beginning week 5 of that potent stuff but haven’t noticed any changes other then losing hair!)  I’ve talked about my weird joint/muscle/tendon/ligament pains, extreme swelling, warmth and redness in previous posts but I was wondering if anyone experiences any of my other weird ailments…mainly, tongue sores/ulcerations/lesions, “geographic tongue” (there are large patches all over my tongue, sometimes smooth looking (no taste buds present) and at other times, I have patches that  appear very red and as if the taste buds are torn apart, like my tongue is chopped up, I don’t know any other way of describing it), swollen, stiff, red and very painful bumps on my fingers, most of which begin on or around my joints;  I occasionally get them between my finger joints in just the soft tissue areas. Sometimes they look like red blisters, sometimes with white around the edges, sometimes just red. The bumps usually hurt very bad and swell, within hours I notice a dark purple spot deep under the skin that becomes more pronounced and within 24 hours I usually have what looks like a bad (and very painful) bruise beneath my risen skin. Within 36-48 hours it usually turns into an ulcer and the skin eventually breaks. I can’t seem to find photos online of anything like it but the dermatologist I saw last year during my hospitalization said it was similar to vasculitis and related to the UC.

Does anyone else get these dreaded “manifestations”?  Because of my steroids and I’m guessing the methotrexate, they are not healing well and usually end up infected. I have a bad one on the pad of my index finger right now, talk about painful!  I My fingers also get very stiff and swollen at times for no appearant reason.  This causes great pain as well. Sometimes the bottom of my feet feel like I’m walking on rocks barefoot. A bruised sensation but no bruises are present. I’m still not convinced that this is all UC related, despite my doctor’s diagnosis. I am constantly searching the Internet for other explanations. Something is just not settling with me…I feel as if something else is going on. Maybe if another person with UC tells me that they experience one or a few the same symptoms I will have an easier time accepting UC as the explanation!  (I’ve included a picture of a finger bump. Note: this is a large one…not all are this big but despite size, they hurt immensely. You can also see the inflammation on my index finger in this picture. I take photos of everything, doctors cannot fully understand the severity of these manifestations without seeing the photos of them at their worst.)

21 thoughts on ““Extraintestional Manifestations””

  1. Angie,
    I’m sorry to hear about your flare and the wierd other manifestations you’re having. I haven’t heard about those type of lesions before, but I did read a study that might help you heal them faster. I read a study about diabetic lesions (often super-hard to heal b/c low circulation), where the researchers used active aloe gel on the ulcers. The ulcers treated with aloe healed faster, and patients with ulcers that previously wouldn’t heal, began to heal. You’d probably have to apply the aloe (make sure it’s stabilized and active, call the company) 3-4 x/day.

  2. I hate to say it but the symptoms you describe appear to me to be an extremely bad case of the herpes simplex virus and the picture shown only goes to confirm my belief. I hope I’m wrong and please forgive me if I am but I think you should seek medical advice as soon as possible. Do not burst any blisters you may get as you will only risk spreading the condition to other parts of your body and also risk infecting others, more likely someone close to you. The condition is nothing to be ashamed of, many people suffer from its awful affects but many don’t even realise they have it until placed under stress and the condition shows itself. Like I say I hope I’m wrong but you should really get it checked out.

  3. Angie

    Thanks for the suggestion Tony, but I have been tested and it is negative for any type of herpes virus. I have a very extensive team of doctors (gastroenterologists, rheumatologists and dermatologists) at my hospital who work together during my diagnosis and treatment. I have been tested for everything under the sun and all tests are conclusive with UC type manifestations. My biopsies of the sites have also proved to be related to vasculitis, the type which sometimes presents itself with UC and Crohns. My skin/tissue/joints around the lesions usually swell, turn red, warm and hurt tremendously also. It is some sort of auto immune response according to the doctors. I was just hoping by posting, maybe someone else out there could relate.

    1. Hi Angie,

      I have UC and IBD. I’ve heard of UC having symptoms like the ones you explained. I get flare ups, but not as often. All I can tell you is that I’m on Balsalazide Disodium. I don’t know if diet helps, but I have definitely incorporated Bananas, Manderins, Almond milk, and kale, in my everyday diet (I eat these EVERYDAY) and my alcohol intake has decreased big time. A lot of the times lesions occur, because we have a low vitamin intake.

  4. Angie

    By the way…they are not real blisters…there is no bubbled skin. Just a hard bump. There is also no liquid inside once it ulcerates or breaks open. It doesn’t even bleed.

    1. I’m pleased to hear herpes has been discounted as a cause. Hopefully your doctors will soon diagnose what it is and find a way of relieving your suffering.

      1. I agree with Tony, I sure hope they can figure out what is causing all this Angie. Please please keep us posted if you have any breakthroughs with this. Really the closest I am to what you are talking about and through the photos is my psoriasis that happened all of a sudden about 7 months after my colonoscopy/diagnosis of UC, and it was/is the typical psoriasis but not like what you documented. BEST OF LUCK TO YOU on getting past this stuff, Adam

  5. Did they check for Behcet’s syndrome? I have the tongue sores too, been to the oral surgeon and got no answers, recently the “sore” or hard spot split open, it hurts. I a thankfully not in a flare.

  6. I have the same bumps on my skin. They are very painful and even with meds, they do not seem to go away. I have been getting these bumps for years now. A biopsy confirmed vasculitis, but the docs don’t seem to know what it is connected to. It might be a manifestation of lupus or have to do with my thyroid problems. Either way, it is autoimmune, but it is hard to find any relief! It is very rare for vasulitis to manifest in this way (doc says its usually on lower extremities).

  7. I feel your extraintestinal pain here. Over the past couple months I’ve noticed tiny, red itchy bumps on my skin inside my wrists, ankles, pointer finger, and now, weirdly, the side of my nose. Mostly they itch. I mistook them for spider bites at first but now I think I know better.

    I haven’t been officially diagnosed yet, but I have UC in my family. I show more symptoms of Crohn’s than US. My first autoimmune symptom was joint pain that started in my wrists and spread, however I suppose it started in my teens with vague abdominal pain. Now I’ve got dry eyes and photosensitivity as well.

    Such an adventure! I wish you luck with everything. I’m only on Plaquenil for meds but my father, who had UC, used to have bottles and bottles. Hoping for the best.

  8. Has anyone experienced severe migraines and headaches that pierce from the brain stem and up into the skull? I was on 1 a day but stopped because of the sickening headaches. The headaches have stopped since I stopped taking it.

  9. MY DR. GAVE ME ATARAX . VISTERILL and i take like a fourth of one every three days. a whole one makes me sleepy., but if i dont take one and something excites me in any way i break out all over. this has come after a sugery and i have developed an allergy to latex. and their is latex in every thing.

  10. Sorry you are having a flair up, they suck. But i too have been noticing some of the same simptoms. Small red bumps on my fingers and now my tongue swells. But this usually happens when I am comming off the prednisone regiments. When I first got the small red bumps on my fingers I freaked and called my doctor. He told me I dont know I think you you are having an environmental allergic reation. Its always nice when they dont know. I am sorry your symtoms are a little worse than mine though.

  11. Hi, I read that you have colitis. I also had the exact same issue. I think, and I can’t be sure, but my problem ended by me eating three to four salad leaves every morning. The greener the better. I eat at least one salad leaf every morning now.

    I came across this post because I also strangely have something on my finger that resembles your problem. Not sure why. In any case… try what I SAY!

  12. Gulli

    Have this same issue. Was freaking out about it too!!! Mine are on my thighs, arms and buttocks. Dermatologist sad it was breakouts and eczema.. She had me on a steroid cream, vinager baths and keflex…didnt really help…. then back to colon daoc…he says its normal to have with EC….but wanted to have dermatologist to biopsy.
    Still have to go back to both Docs. 3-4 month flair…UUUUGGGGHHHHH.

  13. hi , i have those little painful boo boos that pop up on the joints of my fingers , have 2 of them at the moment . extreme soreness inside my nostrils most of the time ,that i cant even rub my nose . also pain on spots of tongue ,sometimes the pain is so terrible . i believe that they are all from this lovely disease UC . glad to see im not the only one . good luck to all <3

  14. Wow… How glad I am to have found your post!!!! I am so relieved that I am not the only one going through this, even if it doesn’t help any of us get over all these complications!
    I have a load of these at the moment and am going to my consultant tomorrow who will hopefully sort out my treatment and meds for that and my UC, as was diagnosed three months ago but am not yet on any meds (!!!!).
    I have a particularly bad ‘ulcer’ style one of these on the end of my left finger. It is particularly sore and I am unable to do anything with my finger because of it. As they also appear on other areas of my hand, I am finding I can’t bend my fingers or grip and can I ly use the fingertips. It is severely affecting my ability to do a multitude of things and am only thankful that it is currently the summer holidays and I don’t have to have time off of work because of this at present (I am a teacher).

    In your experiences, how long does it take for these to go away?
    Thanks again and hope you are all feeling healthy! Xx

  15. Hi! This is not erythema nodosum or pyoderma gangrenosum? Sorry if those are obvious dx that have already been ruled out by the docs. I had skin problems on and off for years, never knowing it was related to the IBD.


  16. Alexis N

    Hi, I know this is a very late reply. I have similar lesions on my feet primarily, which during a particularly bad flare was diagnosed by a dermatologist as a leukocytoclastic small vessel vasculitis, which is documented with UC. Strong steroid cream or ointment can help them heal faster, although in my experience they continue to pop up for no clear reason. I have lots of pictures of mine, although I don’t see an option to post any on here… They follow roughly the same cycle, although once they rupture they take forever to heal! I too have erythema nodosum, including some nodules on the bottoms of my feet (hence the sensation of waking on rocks). I also have the migratory arthritis which affects elbows, fingers, collarbones (sternoclavicular joints), etc. I had recurrent episcleritis last year. My bowel disease is under great control, interestingly. I’m a couple weeks into a ketogenic diet, as there’s some new studies in kiddos which showed great promise in treating UC. Good luck, hope things are better now!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.