Hi everyone, I have been reading the forums for about
6 months now. This is my first post.
I am 41 years old, and was diagnosed with moderate UC in my rectum and about
half way up my left side after a colonoscopy in October 14. My symptoms at the time were diarrhea, mild blood and mucous, and urgency. At the time, I didn’t really realize how bad the disease was. My GI gave me the option of trying as little as meds as possible and going up from there, or hitting it hard with meds and tapering down. I chose the first option. I was put on Lialda, 4 per day, but obviously it didn’t do much. In late November, I was put on Uceris, it didn’t do anything and actually maybe made things a little worse. Around Christmas time, I was put on Prednisone, a 5 week taper originally starting at 40mg. I did pretty good, but not great, until I got down to 10 mg, and all the symptoms returned in full force. At that point, my GI gave me the option of trying a longer time and slower taper from Prednisone, or go to Humira. I wanted to try the longer time on Prednisone, which started in Mid-April at 40mg. When I dropped to 30mg, I stayed there for about
a month and then dropped by 5mg, about
every week and a half. I was doing great. Had formed stools, no blood, was down to 1-3 movements per day, and would only have some urgency about
once every couple weeks. A week ago, I dropped to 5mg, and everything started coming back. Yesterday it got semi-bad again. Urgency, diarrhea, 8 or 9 movements the last couple days, and I can feel the swelling (if that makes sense), very little blood. Also, since before dx my formed stools have been flat, that went away a little bit when I was doing better, but is back now. Since dx, I have been on the 4 Lialda. Today, I popped back up to 10mg of Pred. So overall, I have been on two Pred. tapers spanning 7 and a half months. I tried probiotics (can’t remember what kind) back at the beginning, but they didn’t seem to do anything.
My diet: I cut out caffeine, sugar, breads, pasta, sauces, several different vegetables, all deep fried foods, and dairy (lactose intolerant so never ate much dairy anyway). I mostly eat fish, chicken, pork, potatoes, bananas, eggs (only dairy besides butter). My GI doesn’t put much weight into diet keeping me from going into remission as long as I am eating pretty healthy.
I have a lot of anxiety about
getting in the vehicle. I am a sales rep, so I drive all day, which makes it even worse. I know where every bathroom in my territory is and I usually leapfrog from account to account. Some of my accounts are in rural areas 15 – 20 min. drives from public restrooms and I get even worse anxiety when I have to go to them. I don’t usually go anywhere socially very often for fear of not being close to a restroom.
So, I have several questions and would like everyone’s opinion.
I know my GI is going to want me to go to Humira when I call him and tell him I have relapsed. I am hesitant to make the leap, side effects, fear of it not working either, etc… but I also want my life back. Should I be this hesitant about
it? If I go on the Humira, can I ever hope to come off? I would like to hear from those who are on it.
Also, those of you who take something for anxiety, does that get prescribed by your GI or do you go to another Dr. for that? Even when I am doing good, my anxiety about
getting in a situation where I might not be able to get to a bathroom is enough to usually keep me home.
I am going to try the VSL3 probiotic. Is there anything else I should try before making the jump to Humira?
Also, what would be the symptoms of c-diff that are different than UC? Late last week I did have a foul smell to my stool and gas.
Post Edited (kjohns) : 7/27/2015 12:52:04 PM (GMT-6)