Hi, I am new here. I had UC for 8 years and it went from controllable with Lialda to short term disability and then they were going to put me on Remicade. I really didn't want to be on immune suppressants because I always seemed to be sick with a cold. I opted for the J-pouch. I lost about 45 pounds and asked the doctor if it was enough, and she said it would help to lose another 15. So I lost 60 pounds and luckily my gifted surgeon was able to knock out 2 steps.
My first surgery was Nov 2015 and I woke up with a temporary ileostomy. After battling a bad kidney/bladder infection, I healed up again and put back some weight (I lost 30 lbs due to E.coli), I opted to do the take down in July 2016. Before and after each surgery I worked out and ate pretty good; high protein diet for the most part. I'm going to skip over the nightmare of the complications, like my small intestine not waking up both times and the catheter stuff.
So I had a J-pouch, and then diarrhea. I was in the hospital 19 days the last time. My veins were dried up like a prune but they discharged me right when I could walk again. I started to improve and taking the imodium gels helped.
I noticed that I couldn't eat anything I wanted eventually. I would get gas and go to the bathroom much more. The GI doctor suggested a low FODMAP diet and I started to figure out what I couldn't eat. Mostly the same stuff that I couldn't eat before the surgery.
The things that seem to trigger gas/bloating/belching and then increased motility seems to be starches and carbs that are not readily absorbed by the stomach. It seems that they are processed in the small intestine and the bacteria eat them, creating byproducts that irritate the small intestine. My doctor put me on Cipro/Flagyl and the symptoms seemed to abate almost immediately. It improved for awhile.
Then again, as soon as I ate carbs, the symptoms slowly seemed to get worse. My GI doctor decided to do an endoscopy and afterwards told me that my J-pouch was "angry". She wanted to do rifaximin but my insurance wouldn't cover it (I just switched) and put me on cipro/flagyl again. As long as I stick to my high protein diet with minimal carbs, I seem to do better.
My doctor also told me to do VSL#3, so I bit the bullet and bought some. I've always taken some probiotics, mostly bifidum, but this was a bit different. It was like oxiclean and it cleared me out almost immediately. The cipro/flagyl kind of constipates me, so I think maybe it was an ok thing. I have noticed increased gas, so the doctor told me to take only one pill a day until I finish the medicine.
Does this get better with time or am I always going to have to be really careful about what I eat? I've got no tolerance for milk, corn, cheese, potatoes (starches), and a whole bunch of staple foods. I can eat chicken, beef, lamb, steamed rice, green beans, and white bread without too much trouble. I just worry about the discipline I have because I love sweets and in particular: cookies. I crave the carbs and it really sucks that I can't really enjoy a candybar because I am going to be bloated and sick for hours afterwards.