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.)
Hi there! My name is Angie. I am 34, happily married and have 3 young children. I suffer from severe UC and have many “extraintestinal manifestations” related to my IBD.