Hi, my name is Emma. I have ulcerative colitis (left-sided) and was diagnosed in December 2014 after a colonoscopy. I initially thought I’d be able to pop a few pills and get back to normal life, but unfortunately that’s not turned out to be the case. But, I am positive about getting healed with the right combination of drugs and diet. I live in South London.
Some more about me:
I am/was really active before coming down with the disease. My main pleasures: cycling, yoga, bouldering, traveling, cooking/healthy eating… I’ve had to (hopefully temporarily) give some of the active stuff up while I get on top of this thing. Fortunately, I’m also a big fan of sleeping, which I’m doing plenty of at the moment!
Night sweats, mouth ulcers/swollen tongue, mucus/blood, diarrhea, urgency, fatigue/anemia, episcleritis (aka the evil eye), aches and pains. When I’m tanked up on Pred, I manage to keep on top of things, but as soon as I start to lower the dose, it all comes rushing back. I’m down to 10mg at the moment and getting to work in the morning is something of an ordeal (lots of jumping off the bus to find the nearest loo…)
Just About Keeping Sane
My current medication isn’t working (Mezavant and Predisnolone.) The Pred is keeping me in one piece in the sense that I “look great”, as everyone likes to tell me, but isn’t getting me into remission. Meanwhile, my blood markers are getting increasingly worse. I basically have red warning exclamation marks next to every blood result at the moment!
The consultant is moving me onto Azathioprine, but I’m also due to do (hopefully just three months of) a biologic to kickstart me into remission.
I had the preparatory blood tests for the Azathioprine yesterday. They took nine vials and reduced me to a quivering wreck. I’m not great with veins + needles.
That being the case, I was hoping to get a bit advice about which biologic to choose. They’ve said I can have remsima/infliximab or humira/adliminab, or possibly entiyvo.
I’ll be honest, I’m completely freaked out by the idea of the infusion route. I just don’t know if I can sit there with a cannula in my arm for two hours, but I have read that remsima/entiyvo may be more effective than humira.
It’s not ideal, but I think I would cope better with the humira injections emotionally/psychologically. I had to give myself belly injections (with clexane) when was on crutches recently, as my platelet levels were so high. It wasn’t great, but at least it was over quickly. On the downside, I don’t have a lot of spare flab on me to inject into, although the Pred has helped a little in that regard!
Anyway, I’d be really grateful for people’s views – especially from those who share my phobia. Is it possible to get over it!?
Otherwise, I’m just carrying on as best I can. I work freelance, so am lucky that I can work from home three days a week. This is great in the sense of avoiding the stress/possibility of accidents, and I can take naps when needed, but I’m worried about turning into a recluse if things don’t get better soon!
My family/friends have been great, but they don’t really understand. if I’m honest. I looked terrible on diagnosis, but “normal” now, so I guess it’s logical that they would assume that I am better… Hopefully, I will be though when I start on the new meds :)
Mezavant – two tablets daily
Predisnolone – started on 30mg, then tapering down. Currently on my third course.
written by Emma J
submitted in the colitis venting area