Well I had my appointment at the University of Utah on Thursday. It went really well and I am feeling a lot better about things. We met with a nurse practitioner who spent probably an hour with us. She had all my records that Dr. Smith had faxed her. We talked about a lot of things. She said that about 40% of j-pouches fail, so that it's actually not that uncommon to be having so much trouble. She said some people end up going back to an ostomy eventually, but she said there are lots of things we haven't tried and that we are way off from that. She also said that she's not so sure that pouchitis is my main problem. Because of where my pain is located a lot of the time, something else could be going on. We are going to do a bunch of tests. I didn't do them there because of insurance purposes (they are not in my network, plus if I do it at St. Luke's I get a 25% employee discount). First she ordered a blood test for Celiac's disease. (I'm crossing my fingers it's not that). She said about 10% of people with irritable bowel diseases get Celiac. She also ordered some kind of breath test that detects bacterial overgrowth in the small intestine. When she felt my stomach she said she could tell there was inflammation there. Then on Friday she called me and said she's had a chance to look over my records more and wants me to do a HIDA scan (to check the gallbladder) and a couple other lab tests. She said it might feel like she's "throwing the kitchen sink at me" but I think it's good we're doing all this. She threw out a couple other things too like doing a pill camera to see everything, but I think we are just going to start with these other things first.
We also talked about a lot of different medications we can try. She's having me try a different probiotic than the one I take now called VSL #3. I've thought about trying it before and once Dr. Smith even gave me a prescription for it, but I didn't fill it because he didn't write it for the double strength dose, which is what the insurance pays for, and I never asked him about it again. There is actually strong research that it helps pouchitis. She gave me a different antibiotic to try and another medicine that's similar to one I already take but supposed to be better. We also talked about doing a low dose of an antibiotic (like Cipro) all the time, Entocort (a steroid like Prednisone but it's not absorbed so doesn't have all the side effects-I took it a long time ago before I had surgery), and she talked a lot about Remicaide. Remicaide is a drug that's only available in an IV, you get it about every 6 weeks. It's used a lot for Crohn's disease and Rheumatoid Arthritis. Dr. Smith has debated using it too but I think he was saving it as a last resort. She was kind of surprised I hadn't ever tried it. She also said it might be good for me because of the arthritis, we could kill two birds with one stone. But I think she wanted some of these tests back before we decided anything else.
A couple weeks ago I also did that blood test that Dr. Smith let me do for free. It didn't really show much except that I might be worse in 30 years...haha. He said that everything looked pretty normal though. The NP looked at it and said that that test is usually for Crohn's disease and usually there's a test they do before that to check for Crohn's disease (unfortunately sometimes people are diagnosed with Ulcerative Colitis when they really have Crohn's). So she is also checking into that to see if that got done or if we need to do that one too.
I had been taking 80 mg of prednisone, then 60, and started taking 40 that day. She told me to stay at 40 for now until we find out some things. She said she doesn't use prednisone very much anymore because there are so many other options that work and aren't as bad for you, so hopefully some of this other stuff will help and I can get off it soon. I'm tired of my poofy face and not sleeping well. :( All in all I think we are on the right track and I feel a lot less frustrated and hopeful!
Old Car
New Car!
