Hey, I'm currently seeking a 2nd opinion due to wasting my time on my previous consultant who said he didn't know what else to do with me. They have referred me on a specialist who I have been seeing since January this year.
I have still got the Proctitis, and it has neither progressed or got worse in recent months but is better than when I was first diagnosed 2 years ago. However I have hardly had a break from it in all this time, and bled most days for the past 18 months. I have basically no life anymore, I'm completely exhausted most of the time and haven't worked full time since January '09.
I've been told I have 2 options at this point - Infliximab/Remicade which has the obvious side affects I would rather not have to go through. Or to take part in a hospital study called 'Sacral Nerve Stimulation'. WHich is using electrical pulses to stimulate the nerves in the lower part of the bowel. Its been used worldwide to treat incontinence but not as yet in IBD, hence why this study is happening. Apparantely it is recreating what the nicotine does to you when you smoke (the idea being that smoking helps the symptoms of IBD.) It would involve several flexi sigs to check progress, and a wire to be placed in the base of my spine and attached to a box on my back for 6 weeks. I would be under the care of the study for 20 weeks in total. But for the first 6 weeks I cannot try any other medications so they can see whether the study is having any effect or not. Side effects of it are pain at the implant site, infection, numbness at the stimulator/wound site, technical problems, wire displacement, undesirable sensations.
Anyone taken part in a study before? Or had Infliximab? I just don't know what to do.