Community Forum

I was diagnosed last summer after almost a year of tests to figure it out.Endoscopy didn't show sores in stomach but blood test came back positive and the sores began to show up in mouth.They are contstant along with the stomach pain and usual reaction to food I shouldn't eat but don't know it.Dr.has told me to avoid any food I later have reaction to but problem is that some days I can tolerate cheese and other days can't; similar with other foods.Some foods I know to avoid. Started on 6MP but like I just read, continual nausea. I have to work so after a few weeks stopped it and stayed on Pentasa. But suggested dose of 3,000 mg daily gives severe abdominal pain. I'm considering Remicade, which my rheumatologist has suggested.I also have fibromyalgia, pretty severe some days and am a vegetarian. Just a mess!! Anyone have any suggestions?

 Reply posted for marilyn60.

You can find the rice protein powder at Whole Foods.  I buy it online at vitacost.com because it's cheaper and I can buy it in bulk for a flat $4.99 shipping fee.  I also use spirutein soy protein powders (also from vitacost.com).  With the rice protein powder, I mix it with almond milk (I buy it at Trader Joe's).  Spirutein tastes good just with water.

As for functional medicine doctors, check out ultrawellnesscenter.com.  I think that there is a list of functional medicine doctors on the site.

 Reply posted for christina.

Christina,
Thank you so much for a couple of suggestions; if I could just get this to where it only flares and isn't constant, I think I would feel better. Did you find this shake at a whole food store? I will check into a functional doctor and see if I can get some help.

 Reply posted for marilyn60.

I was finally diagnosed in 2002.  After quickly running up the ladder on drugs (prednisone, asacol, 6mp, methotrexate), I ran out of options because I will never take prednisone again and am not a good candidate for remicade, etc.  So diet was my only option.  When I finally got out of the hospital (after a two month stay), I ate strictly vegetable and fruit baby food in jars and baby cereal.  Then I started reading all about diet and disease and decided to become vegan.  When I do have flares, I usually switch to a liquid diet for a few weeks (rice protein shakes and cream of wheat, cream of rice).  I also went to visit a doctor who practices functional medicine and he suggested that I try a shake called UltraInflammx, which is supposed to reduce inflammation.  So far so good; my doctors are amazed at my progress.  I also take alot of supplements that help reduce inflammation (tumeric, primrose oil).  I learned alot by reading the China Study, and books by Mark Hyman.  I hope that this info helps you.

 Reply posted for CJC.

Thanks for the info; I haven't tried bananas although did try applesauce a couple of times, but couldn't tolerate it. The only veggies I can reasonably have are steamed carrots, green beans and sometimes mashed potatoes. Since I am a vegetarian, you can imagine my menu is severely limited! I can have pasta and the harder cheeses as you mentioned. Even the veggie meats on most days hurt and peanut butter makes me nauseated, so my main concern is nutrition. Have you consulted a nutritionist? I'm thinking of doing so this week. You mentioned "flare ups". I'm assuming that the goal is to get this to that stage, but mine has been constant since I was diagnosed.

 Reply posted for marilyn60.

Diagnosed late 2003/early 2004; and I also received the "if you eat it and it hurts, don't eat it anymore" advice.  One of the problems is that foods affect all of us differently, and "safe" foods can sometimes become "unsafe" at any given time.  Frustrating!  What works for me especially in a flare-up:  eating small amounts whenever I feel I can handle it (soft bananas, small amounts of applesauce, crackers/bit of hard cheese).  Small meals always have white rice with some chicken (baked with skin on, but skin taken off before eating), fish, or lamb, and/or heavily steamed vegetables since can't handle any real fiber.  No raw vegetables -- lots of pain going through the intestine!  I also avoid the flowers, like broccoli.  And I don't take any meds without something in my belly - like the banana or applesauce - to avoid nausea.  Once I'm feeling better, I slowly increase the amount I eat at a regular mealtime -- if I don't eat between meals, I find a regular meal pushes everything through too fast and I end up with frequent bathroom trips.

Hang in there.  :)