Posted 3/29/2014 4:09 AM (GMT -5)
I started a flare within the past couple of weeks/months - hard to pinpoint because my doc thought it was ibs based on improved blood work. I had several isolated episodes of severe pain - sometimes upper left, sometimes upper right. This was a new symptom and before I started a low-FODMAP diet and I was having diarrhea 10-15 a day, usually with urgency.
When I saw my GI about a month ago, she ordered a capsule endoscopy and told me to start a low-FODMAP diet. While waiting for the book about the low-FODMAP diet to arrive, I came down with a severe cold and waited a bit to start until the cold cleared up. Two weeks ago (1 week after starting the diet), I had severe pain again - this time it was bad enough that I wanted to the ER, but couldn't walk due to pain, so I took 2 Percocet and fell asleep. When I woke up I was feeling better. This was on a Friday night, so I called my GI Monday am to see if she had ideas. She ordered a CT scan, which I had last Friday am at a private imaging center. That evening I had another bad attack of pain and went to the ER. The results from the morning CT scan wouldn't be available until Monday morning, so the ER repeated it with some lower type of contrast (I had oral barium in the morning and they couldn't use it again). The evening CT scan showed that my entire left colon was inflamed and that my spleen and liver were mildly enlarged. All blood work was normal. I have had bad reactions to steroids so I begged not to have them - the ER called my GI who agreed that I could stay off steroids, but they decided to start me on Cipro and Flagyl.
Over the weekend, I had several more episodes of bad pain. The pain was now moving around and I had pain in all 4 quadrants at various times. By Monday am the pain was more diffuse, but less intense - my GI started me on Uceris. She also had the results from the CT with barium contrast which showed inflammation of the small bowel and inflamed mysentery lymph nodes, but my spleen and liver were not enlarged. I asked whether I should continue with low-FODMAP since this was the only change before the more frequent started and my GI felt I should continue with it because I'm actually having much better bowel movements.
On Wednesday I had the capsule endoscopy and repeat blood work. Again, the capsule showed inflammation of the small bowel - while my GI was hesitant to say it was a Crohn's flare based on the CT scans, based on the capsule endoscopy she was confident it was Crohn's. The odd thing is that my inflammatory markers are actually down. However I do have elevated WBC and one liver enzyme is elevated. My GI thinks the liver enzyme may be due to the combination of methotrexate and antibiotics so she wants to repeat blood work again 1 week after I finish antibiotics (I'll get this done and see her on April 7).
For most of the last 2 weeks I haven't had much of an appetite, but it's starting to come back and I've eaten light, but "real" dinners the past few nights (i.e., some type of protein and either rice or potatoes (no skin). Wednesday and Thursday I had some pain after dinner, but it was tolerable. Friday night I was miserable (not sure why things keep Friday night). I started going to the kitchen to get pain medicine and just barely made it out of the bedroom before I couldn't walk and was in tears from the pain. I made it back to bed and my boyfriend brought me pain medicine. Two percocets knocked me out for four hours. The pain is better, but still in much more pain than the few days.
At this point it's becoming obvious that eating much more than toast and crackers isn't working for me. Normally I would make some soup, but I can't have garlic or onion on the low-FODMAP diet and the idea of chicken broth without either is completely unappealing. The low-FODMAP diet also knocks out things like ensure. Any ideas on what I can eat without aggravating the pain?