Hi, my name is Samantha and I have been diagnosed with Crohn's disease for about two years now. I am currently in a severe flare up, as I have been for the last 5-6 years. I have taken prednisone, imuran/entocort, pentasa, maybe more, and most recently I was administered remicade. I need a bowel resection on 11cm of my terminal ileum. I graduated college last May, and have been working in the food service industry since. I majored in Sociology and Women's Studies, and I have had trouble finding work in the non-profit field in this economy. I am also really scared of working somewhere other than a restaurant because my symptoms are so bad. When I am especially sick in the restaurant world I can just get my shift covered. Because of my current job situation I do not health insurance. When I was diagnosed with Crohn’s I was dropped from my father’s plan. In Colorado state law states that you can be on parents insurance until you are 25 if you meet certain criteria. I met those criteria. However, once I was diagnosed, his insurance dropped me because they are based out of another state and did not recognize Colorado laws.
Needless to say now, I am from Colorado. Born and raised. I have never lived anywhere else; however I have done some traveling. I’ve traveled some of Europe, and I climbed Mt. Kilimanjaro in Africa, as well as traveled through Africa. I used to ski, swim, hike, run, etc. And with all of that personal introduction out of the way, I will share my remicade experience. Please feel free to read, however, it is lengthy. Be warned!
And my remicade fiasco... After my third infusion, about a week before my fourth infusion (December 31, 2009) I noticed a rash forming on my palms. I asked my doctor about it, and was told to have my scheduled infusion. Within two weeks of that infusion I had psoriasis covering my entire body. It started with my palms and bottom of my feet, presented as large open lesions on my arms, legs, trunk, groin, literally all over my body (in between my fingers and toes). It then started on my scalp. I have large scales all over my head and am experiencing some pretty major hair loss. I saw my doctor about a week into the outbreak, was tested for some STDs and pretty much sent on my way.
Two weeks later I was told I could not work anymore because of how I looked, despite the fact that the only thing you could see was my hands (I work in a restaurant), and was calling my doctor's office every half an hour. I finally ended up in the emergency room, was treated as a burn victim would be, because no one could diagnose me. I was wrapped in Vaseline soaked bandages, given an antibiotic (because the remicade made me high risk for infection and I had open sores all over my body) prescribed a pain killer and sent on my way, without a diagnosis.
Two days later I was finally seen by the dermatologist that my doctor had referred me too over two weeks prior. He diagnosed me on the spot as anti tnf-x drug induced psoriasis, printed out a study for my doctor (there have been 18 other cases reported in people with IBD and remicade, 120 reported cases overall), prescribed me three topical steroids and sent me on my way. (He was actually rather rude, like I was an idiot for not being able to recognize what was on my body, which every doctor in my GI clinic and every doctor working an ER were unable to diagnose as well...)
The next doctor's appointment had every doctor in to see me/examine me again. (I don't actually mind, I think the doctors should be able to recognize this, even if it is really really rare.) Some pictures were taken, (I have been taking my own through this whole process) and I was prescribed prednisone. I recently went back to work, after a two week absence. I am starting to control some symptoms with topical steroids (like my palms) while others (like my scalp) are only getting worse. I am out close to fifteen hundred dollars in doctor’s appointments, prescriptions, and missed work. Needless to say, I will not be taking remicade again. The doctors think it was a class drug reaction, which permanently rules out humira as well. I am actually close to quitting medicine in general. My quality of life was better when I just had Crohns. Now I have severe psoriasis as well, along with the no health insurance or money. I literally didn’t leave my apartment in over a week. I live alone.
If you read the whole rant, I am very impressed. I would like any company I can get; any shared experience, any diet recommendations, or general chitchat. I didn’t go into details about the insurance woes (when I had insurance, that is), the multiple invasive procedures, the frustration at been told over and over that nothing was wrong with me while my body attacked itself, (both with the Crohn’s symptoms and the psoriasis), the vacations ruined, the relationships lost, the humiliation. I would love to discuss any and all of those things with anyone that is interested, however I chose to focus on the remicade because it’s the most current. And because it’s made me sad. And I am even more disabled now than I was in the first place. And because my quality of life is really really low right now, and although I have supportive and loving friends and family, unless you have this disease, it’s very hard to understand. Thank you for reading. I am here for any conversations there may be. Nothing is off limits.