ischemic colitis- anyone ever experience this?
#370905 - 02/18/14 10:25 PM
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First some background...
I was diagnosed with IBS in high school. At the time I was severely affected...my stomach hurt so much I used to spend entire classes standing up, and I would regularly call my mother at lunchtime and ask her to bring Pepto to school. My college years were much the same and my doctors were unhelpful, to say the least.
At some point I purchased Eating for IBS, but was unwilling to so radically alter my diet. Then I had a very unfortunate incident involving a wedding and an emergency stop in the woods on the way home...and I decided I would do whatever it took to avoid another episode. I've been following the diet laid out in Eating for IBS for many years, and it has basically solved about 90% of my problems.
It seems like my biggest trigger food is whole grain. I know the diet says to eat whole grain after the stomach is cushioned with soluble fiber, but I can't even do that. In fact, I've had two incidents where eating whole grain landed me in the hospital. Both times I attempted to eat whole grain for its health benefits, and both times involved whole grain cereal bars (eating one daily for about a week). The first time the problem was severe constipation...almost an intestinal blockage. The second was last year and was full blown ischemic colitis. My intestines were so inflamed the blood supply was cut off. I was hospitalized for three days on a liquid diet and morphine. The pain was the worst I've ever felt, and I only narrowly avoided surgery.
So my question...the doctor insists the whole grain did not lead to the inflammation, but he can't explain what DID. I don't EVER want to experience that again, and it seems to me that if both times I've eaten whole grain ended in a hospital trip, then whole grain just might be the issue. But I also know that inflammation of that magnitude is not part of IBS, and I know I don't have 'standard' colitis. Has any IBS sufferer here experienced something like this?
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I am so sorry for what you have gone through.
Have you been tested for inflammatory bowel diseases and celiac?
I have not heard of IBS leading to ischemic colitis unless someone was taking the drug Lotronex for IBS diarrhea. That was one of the side effects that led to the drug being pulled off the market.
I would certainly avoid whole grain cereal bars, and see if you can find specific commonalities with those bars. What type of whole grain? Other ingredients that may have been problematic?
How do you do with brown rice, polenta, quinoa, oatmeal? It's not that uncommon for people with IBS to be unable to tolerate wheat bran but to do much better with other whole grains.
There is a huge red flag here, in that IBS by definition does not have inflammation. So the colitis you experienced is not IBS, and would point to something else going on.
Trust your body - if you think you can't eat something, even if you don't have a logical reason why, don't eat it. Odds are there is a good reason, it just hasn't become apparent yet, so listen to your gut above all else.
XXOO
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Thank you for responding! I was tested for IBD and other inflammatory conditions when I initially started having stomach pain and other symptoms (and all tests were negative.)
The scary thing is that ischemic colitis is a disease of the elderly, with the vast majority of cases occurring in people over the age of 70. I'm in my early 30s. Other risk factors are things like obesity and illness...I'm normal weight and felt perfectly fine that week before suddenly being in agony. So I don't fit the patient profile and don't have any risk factors, and my doctor seems completely uninterested in figuring out WHY this happened. Not knowing why it happened makes me feel like I can't do anything to help stop it from happening again.
At this point, I'm really afraid to try any whole grains. The bars I ate were Kasha brand, and so had quite a mix of various grains. I've eaten oatmeal in the past without problems, but then I've also never eaten it daily.So I'm worried that I'm not getting any insoluble fiber in my diet, but I'm too scared to try working them back.
On a side note...the doctor suggested I start supplementing Vitamin D and B12. With Vitamin D deficiency, they suggest taking quite a large dose at first, so I tried that for a few days and had the worst flare-up of IBS I've had in years. I was careful to choose a brand without anything like artificial sugars, as I know they trigger me. Are vitamins a common trigger for IBS?
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Oh, wow, I just realized you're THE Heather. I'm afraid I have to gush at you just a little. Eating for IBS really did make a HUGE difference in my quality of life. There was a point where I was calling out of work or coming in late almost daily because my stomach hurt so much. Or, even worse, I would get stuck in the bathroom at work and delay everyone else from being able to go home. It was embarrassing and most of all, hideously painful. My employer even commented over how drastically my attendance improved once I started the IBS diet. It's been decades now since I ate greasy fast food, drank a glass of milk, had caffeine, or drank anything carbonated (all my biggest triggers), and I can honestly say I don't miss any of it, and I would much rather have the bliss of NOT being in agony every day.
On a side note, my gastro doctor had me on various medications for stomach spasms that never helped, and that was about ALL he ever did. He did suggest fiber, but without any information on what kinds to buy or avoid. I had a recheck with him about six months after I started the IBS diet. I basically just told him I was feeling so much better that I wouldn't be seeing him again unless things changed, and his jaw literally dropped. He was flat astonished that my IBS was so much improved...in his words, IBS patients don't get better! He asked what had changed, so I gave him my copy of Eating for IBS...hopefully for the sake of his other patients, he learned a little something!
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Vitamins and IBS
Big rule for D and B would be to take with food, never on an empty stomach.
You can get soluble and insoluble fiber from fruits, veggies, beans, nuts. Doesn't have to be from grains. 
Best,
H
--------------------
Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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