Perhaps the Hardest Part of IBD is. . .

Elizabeth Roberts Health Guide
  • . . . that no two IBDers seem to have the same symptom patterns or react to treatment and/or medications the same way.

     

    As I always say, if given the choice, I'd choose not to have IBD. But, I do, and I have to say that after living with it for 16 years, the past 3 pretty successfully, it's frustrating that there isn't one firm set of symptoms nor one firm treatment protocol. 

     

    Over the years I've met, personally and virtually, hundreds and hundreds of IBDers and while I can find commonalities with them in some ways in other ways you would think that we have different diagnoses. My dad is actually the perfect example. I've mentioned him here before, and I'll risk boring you my mentioning him again. He's had UC since he was in his mid-20's. He's now in his mid-70's. He was very, very ill for the first years after his IBD Dx. But as a child growing up I didn't realize he was sick. As my gut problems began to kick in around high school I remember learning that he had gut issues to, but never realized to what extent.

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    Today, we both have the same illness - by name anyway - but we don't present the same in symptoms, nor in the food we can or can't eat, nor in how we treat our colitis. And I have to ask, is it truly physical or is it constitutional? Is my dad just a tougher guy than I am, who has decided he's going to eat what he wants, keep going no matter how tired he is or how many BM's he has?

     

    In the past 3 years I've been finding that diet is playing a large role in how my gut feels. I have gluten- and dairy-intolerance and find I feel better if I rarely eat grains, sugar, and nightshade vegetables. My dad on the other hand eats everything and anything he wants and seems to not be adversely affected. I say, seems, because 1. I don't live close enough to my dad to monitor him on a day-to-day basis now that I am aware of his illness; and 2. maybe he is being affected by food but just doesn't say anything and doesn't want to change the way he eats.

     

    I realize that not all migraine sufferers, or breast cancer patients, or MS patients have all the same symptoms either. But, from what I hear, people with IBD seem to have really far reaching symptom and treatment patterns and this just has to make it even harder for doctors to help treat us. What works for one of their patients just might not have any effect on another, or it could have an adverse effect.

     

    I guess this is turning into a bit of a ramble or maybe a rant. I am by no means worse off today than when I was first Dx'd 14 years ago. In fact, from a gut stand-point I am 98% improved - I have normal BM's, no cramps or blood, etc. But I do have all of these weird food intolerances that I never previously had experienced and if I don't eat a very specific diet that I cook for myself (and continue to take my UC medication) I do end up with symptoms. Many of my past doctors have told me that diet has no effect, positively or negatively, on the IBD, while others have told me that diet, in fact, will cure IBD. Then there is the case history of me and my dad - we're both feeling pretty well right now with one of us severely changing their diet and the other not changing it at all.  

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    So, what gives?

     

    Share your experience and let's see what works, or doesn't, for you.

Published On: August 31, 2012