Infliximab or hospital study?

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.

I have never heard of or taken part in any kind of study like the nerve one you mentioned. It sounds fascinating, but I am not sure I would be willing to do it!! But given the state it sounds like you are in, maybe it is worth a shot. I would want a lot of information about the side effects and potential ramifications of it though.

I am currently on Remicade, and previously was in a trial for Humira, which is another similar TNF blocker. I have only had 2 infusions of the Remicade, but haven't had any major problems from it. I am noticing a bit of hair loss, which I think is from that, but thankfully I have a lot of hair so it hasn't become a problem yet. I know there are a lot of other potential risks from these meds, but I was on the Humira for almost 2 years without really any side effects. And I was closely monitored. That doesn't guarantee something won't crop up later in my life that can be attributed to these drugs, but for now they have given me my life back. Just remember that once you make the commitment to use Remicade, if you stop taking it, it will no longer be an option for you. I am committed to being on it until it doesn't work for me anymore because I know if I stop, I will build up antibodies and it won't work again. I am ok with that, but it is definitely something you have to consider.

Good luck making your decision, and I hope you can find some relief soon.

I would go with remicade. Being a chiropractic and knowing the complexity of those nerves down there, I just don't think I would do anything to disrupt that area.

I don't think I'd like my nerves messed with, either, and I have trouble seeing how that would help UC. Yeah, sometimes we have trouble with incontinence, but I don't see how that could help with inflammation. I'd like to see results from an animal study that shows some promise before agreeing to do it.