Hi. I am 41 years old and was diagnosed with Chron’s at age 20. Recently, my colonoscopy showed I have also developed ulcerative colitis, so now I am dealing with both.
Crohn’s and Colitis Story:
I have tried every pill available for treatment with horrible side effects. I am now on my 5th Remicade treatment. My recent blood work shows that my blood level has dropped again. I have a follow up appointment in 2 weeks, if it has dropped again, then its time for another blood transfusion (this will be the 3rd time this year). If the Remicade does not work, my doc is pretty much at a loss as to where to go from here. I REFUSE to have surgery!!!!! My body has already proved that it does not heal well, so NO SURGERY. I will die in one piece, thank you very much!! I am currently on Remicade, calcium pills, iron pills and a multivitamin.
I have recently developed a deep cough that I am told is a side effect of the Remicade.
I have pretty much had it with doctors!! Does any of this sound familiar to anyone else? I know we all have different symptoms, different side effects and different levels of pain tolerance, but does anyone have any suggestions for me. I am so frustrated at this point. I am doing everything the doctors are telling me to do and I am still getting bad news about my blood levels. I am trying very hard to stay positive and not give up, but it’s getting harder and harder. I am told that my condition will get worse with age. My job is being so patient with me, but my biggest concern is losing my job. I have a family to support! I am lucky to have an amazing husband and to amazing daughters, but I hate feeling sick all the time and not being able to do things with them. My girls are teens and they always help around the house, but I feel like less of a mom and it’s so painful. I feel for my husband too. He has to be patient with me and see me in pain all the time. It sucks!
Where I’d like to be in 1 year:
I would love to get this under control and live a “normal” life. I want to be active with my kids and enjoy them while I can. They are getting older and I don’t want to lose these years with them. I want to enjoy life with my husband!
I have tried everything out there available for Crohns and Colitis. I felt the best on Prednisone, but it gave me a kidney stone, which led to a gallbladder attack and I had to have my gallbladder removed. I have had bad reactions to everything on the list! Remicade makes me feel ALMOST as good as the steroids, but now I have the most annoying cough. UGH!!
written by “Frustrated”
submitted in the colitis venting area