Editor’s note: In the third part of the series “Crohn’s Disease Questions,” Mary Horsley discusses food and other suggestions and comments she gets about Crohn’s Disease and IBD. Read part one and part two of the series.

With chronic illness comes questions and suggestions of how to manage your IBD, from family members, friends, acquaintances and sometimes even strangers. Food questions or suggestions come from outsiders to our disease, from people trying to figure out their limitations, gain ideas about their disease, understand others’ suffering, or find how patients manage and live with IBD. Sometimes they are meant with genuine care or understanding; other times with hidden agendas or dismissal.

Sometimes, questions or suggestions are valid, other times, off the wall. I have heard everything from no-gluten to my mascara possibly causing issues … in my bowel?!

Food questions: The food questions and suggestions come a dime a dozen. With each basic Crohn’s question that comes my way, I usually get double the number of food questions and concerns. With a little research, one can find that all sufferers are different, and we cannot expect the one management plan with food or diet to work for all.

What can you eat? Is it just an allergy? Is it from gluten or is it your diet? Should you be eating this food or can you eat or drink that? Why don’t you eat more? Eat less? How can you eat that food, but not this food? Can’t you just splurge for once?

Suggestions: Have you tried (fill in the blank)? Sadly, I have had plenty of these suggestions, many of them irresponsible ones. People try to profit with multi-level marketing schemes, preying on those who are desperate to find relief.

Have you tried this food? Have you tried that food? Fish oil? Supplement suggestions? Have you changed your diet? More fiber? Less gluten, carbs, spices, etc.? Have you changed your workout or tried to work out? Have you tried not having stress? Can’t you just take aspirin? Have you tried losing or gaining weight? 

Now, some of these are not terrible questions or disingenuous suggestions and I never want to come off as dismissive. But I find there is a major difference in the questions “What can you eat?” and “Can splurge for once?” Sometimes, these questions can come off as dismissive, as if we have not tried to do everything possible to feel better, dismissive of the journey we have been on thus far and sometimes dismissive of us knowing our own bodies. Sometimes a salad is not the healthiest option and things like aspirin or NSAIDs can cause or further inner damage. Sometimes things (like the mascara question) are completely unrelated to the subject of IBD. And have you tried not stressing? You only stress more.

If there is an online article about IBD, I probably have looked at and created pins on Pinterest for it. If there was anything that I know hurts me for certain, I avoid it. I haven’t eaten hot sauce but once or twice this year and I love the stuff so much I could drink it.

I have made changes. I have done the research, as I am sure most of you have, and in three years you can learn a lot about IBD and your body limitations. Sometimes the suggestions are just an “in” to sell these pyramid scheme products, and I think that is never okay.

If you want to ask how I am doing, that would be great. If you want to know how my last infusion or doctors appointment went, that would be great. If you want to know anything about IBD that I can help you with, that is great. All I ask is think about what you’re asking and how it can be perceived. Do not judge us for our journeys, and I ask that you care more than offering up blame for our lifestyles and diets.

I do like to reiterate that IBD patients see a number of doctors and specialists. IBD patients go through a number of blood tests and invasive scopes, biopsies, X-rays, and trips to the ER due to pain, and they know their bodies pretty well after years of fighting it. These years of battling and the disease itself are not cured by calming down, and it is so much more than a “pooping disease.”

Crohn’s and IBD are autoimmune diseases that have an unknown cause. They don’t just happen because of a patient’s lack of care or through lifestyle choices. We did not cause this. We did not ask for this. And we certainly don’t look forward to feeling as bad as we do or suffering from all of the terrible symptoms we have.

For me, It Could Be Worse.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.