Hi, wanted to jump in here with my experience with Remi. I was in a TREMENDOUS flare when they started me on remi. I was in the hospital for twelve days, so malnourished I was on TPN for four, going about 30 times a day, almost ALL blood. My entire colon was so inflamed they didn't even scope half way for fear of perforating it. I noticed a difference within one day of my first infusion. I left the hospital six days later and was down to less than 10 almost formed bm's with much less bleeding then. After my second infusion a week or so later I didn't notice much blood at all and was down to 5 or less bm's per day. I had a total of three infusions and then I got my first menses cycle since I had become sick. All my bloody bm issues started up all over again. At that point I was having some side effects from the remi including, very stiff achy joints, significant hair loss, petechaie rash, facial rash, and vision changes. I decided that the affects I was having were too bad to warrant any more infusions.
I have kept a food diary for about four months now and I have tried cutting out sugar and carbs and different things I've read about, even strict scd for a month or so. I have found absolutely no correllation with my diet, my issues all revolve around my female cycle. Actually, the past two weeks I have ate everything under the sun and have been the best I have been in a very long time. At one point I stopped the bc pill for about five months thinking that may help but now restarted it.
I read about a local study on LDN (low dose naltrexone) at Penn State Hershey and looked into that but was afraid I would end up with the placebo and couldn't take that chance. My family doc prescribed it for me and I added a few supplements. I have been on ldn full dose for about seven weeks now and am doing extremely well. I feel really good on it and other than the first week or so I sleep better than ever. LDN, JUST LIKE ANY OTHER DRUG, DOES NOT WORK FOR EVERYONE.
The first study at PSH showed two-thirds go into total remission, I am hoping I am in that two-thirds. I am currently taking a daily probiotic, omega 3, down to 5mg pred, digestive enzymes with meals, and an herbal supplement called intestinal soother. I currently average 2 bm's with very little noticeable blood. I'm keeping my fingers crossed for next week when I get my P again.
This is just another option I thought you may want to considder before resorting to surgery.
Good luck in whatever you decide.