Hi everyone, I am new to this site and need some advice from all you more experienced people!
I am 19 years old and was diagnosed with ulcerative colitis (pancolitis) in August of 2011. In a more recent colonoscopy they found giant cells in my stomach and duodenum of my small intestine which made them think there was a possibility of crohns disease-so they changed my diagnosis to indeterminate colitis. I have taken many medications over the years, and the only one that I have responded to has been the prednisone. I am super anxious to get off the prednisode but my symptoms always come back. Here's a list of meds I have tried:
Lialda, bentyl, 6mp, cipro, flagyl, uceris, canasa, cortofoam, rifaximin, remicade, VSL #3 DS, Prilosec, immodium, entocort, methotrexate, and humira.
Currently I am on 17. 5 mg of prednisone (tapered from 60) as well as humira, methotrexate, and a bunch of supplements. I started getting cramping and my bowel movements started becoming more frequent and looser when I got to 20 mg of prednisone and currently I have pretty constant mild cramping and periods of more intense pain and I am going 7-10x a day with some urgency and loose stools. I am not having any blood as of now, but that usually accompanies the pain and bathroom trips. Even at my worst I never went more than 10-12x a day, but with blood and cramping and urgency and have never really been completely off of steroids since my diagnosis in 2011.
I want to get off the humira and methotrexate because I have been on them for a long long time, and since my symptoms are back again I do not think they are doing anything, but my doc is hesitant to take me off of them.
I have talked to a surgeon and am seriously considering the j pouch surgery as an option, but the fact that they have labeled me as indeterminate with the possibility looming of crohns makes me more hesitant to get the surgery. I don't know if I should continue trying meds and dealing with the constant prednisone ups and downs, but I am almost out of medications to try. There is the new drug-vedolizumab- that may be coming out soon, but then I wonder if I really want to try and wait for this possibility of a new drug that may or may not work..or if I should just do the surgery despite the possibility of crohns.
I plan on getting another colonoscopy soon before I make any final decisions, but I still have to wonder why they saw those giant cells and what it could mean. There is also the possibility of complications after surgery, which has its own list of pros and cons.
I just hope someone has some advice, and maybe a fresh outlook to help me gain some clarity here! The constant confusion and back and forth is driving me nuts! Has anyone had a similar experience or does anyone have any advice on what they would do??