It’s currently 23:00 in the UK, live from my hospital bed, and I just need to vent to other people who understand.
I was diagnosed with Ulcerative Colitis in November 2010 (post colonoscopy and two months of symptoms). It finally came under control in May 2011 following a combination of Asacol, Prednisolone and Azathioprene. Unfortunately, maintaining with Azathioprene brought on neutrophenia. After finally coming off that, I had a lovely three months of normal life.
Unfortunately, those three months ended in September 2011 with an increase in my neutrophils (good) but the on-set of my current flare-up. My doc put me back on a hefty but reducing dose of prednisolone straight-away, but it didn’t do much other than temper the symptoms at a nice routine of 10-12 trips to the loo all day and all night. And, apply for funding approval for infliximab.
At my one month follow up, he decided to admit me to hospital because there was no change with the steroids, and no sleep for that long was taking it’s toll. I’ve been in hospital now for over two weeks, having had IV hydrocortisone, cyclosporin infusions and my first infusion of infliximab three days ago. So far, no constant trips to the toilet, but still lots of trapped air, mucus, no bowel movements and a whole lot of exhaustion and feeling down. Plus looking like a hairy chipmunk.
I’ve now been switched back to oral steroids, and told I can go home at the weekend if I don’t get worse. Problem is, I think tonight’s bloody mucus counts as worse. My flex sigmoidoscopy last week still showed severe inflammation, and not much improvement showed in the one from yesterday.
I suppose I just want someone to say that this might happen with the infliximab, and I should wait until I’ve had infusions two and three before seeing any kind of improvement. That and I’m stressed and cannot sleep because I think they might now say a) I need to go back on IV steroids for a few more days (but then will the same happen when I switch back to oral to go home?), or b) treatment-wise that’s all they can offer me, and the next best thing is surgery. My doc doesn’t want me back on azathioprene because it only maintains remission by killing off my white cells, which isn’t ideal for life.
Although I’m a fully independent 26-year old woman who never took a days sick for the colitis until I came into hospital, this is my first ever stay in hospital and I just want to go home to my Mummy, preferably with no blood.
Maybe I’m just cranky from nearly two months of no sleep and steroid mood-imbalances and making a big deal out of nothing, but any words of wisdom?
Submitted by “AP” in the COLITIS VENTING AREA