The past year has been such a roller coaster for me.
Last July I was hospitalized for the first time due to a flare. Over the next 2 months I was hospitalized 3 more times due to not being correctly treated at first, and later due to tapering too quickly on pred.
I went from 155 lbs. to 130 lbs, and then shot up to 177 lbs. The pred. kept me out of the hospital, but I looked terrible, felt terrible, and became depressed. I got oral thrush, folliculitis, and c-diff between August and October.
I started Remicade last October and responded very well to it. I was able to come off pred., and I considered myself in remission since I had 0 UC symptoms. I began working out and bettering myself. By January of this year I had lost all the pred. weight, and began training to run my first 5K.
In March I noticed some blood returning in my stool. This terrified me, but my doctor just thought it was a small hiccup, and thought it would correct itself.
By May I was into a full flare symptom-wise, and eventually went to the ER near the end of the month. Back on pred. for me! I also lost a lot of energy, so no more 5k. I'm still running when I can though. Don't want to lose what progress I have made.
I'm on a much lower dosage of pred. this time, so hopefully the side effects won't be as bad. I had a flex sig. done which confirmed I am in an active flare (no surprise) with moderate to severe inflammation. I've been waiting for 3 weeks to get my Remicade antibodies test back because my doctor and I have been playing phone tag. We just can't seem to get in touch!
If it turns out I have built up antibodies to Remicade, I'm considering trying Simponi next. If anyone reading this has tried it, let me know your results. In the mean time, I've began taking Isatis Cooling supplements. It seems to be helping reduce my bleeding and number of BM's, but I don't think it's effective enough for me to go without pred. completely.
I'm hoping to get all this behind me because I've had to quit 2 jobs, and drop out of grad school due to this year long ordeal. If another biologic fails me, I will highly consider a colectomy if my doctor thinks it will solve everything. I'm only 24 and don't want to play this game with UC for the rest of my life.
Thanks for reading.