My Thoughts on Diet and IBD

There are so many different opinions going around about the impact diet has on a person’s inflammatory bowel disease. I am not sure if I am in the minority, but I get the feeling based on my interactions with fellow IBDers that I might be.

I love talking about these types of things because I know we are all adults and able to listen to one another’s opinions without judgement. Agreeing to disagree is fine. We have all gone through such different experiences as a Crohn’s or ulcerative colitis patient so it would only be natural for us to have varying opinions about such a sensitive topic.

Food: Does it really play a role in the health of an inflammatory bowel disease patient?

The following is ONLY my opinion. I assume you know by now I am not a doctor and I do respect other opinions as well.

Based on my personal experiences and the experiences of others who I am close with, I honestly don’t think diet makes a huge difference. I am not advocating eating junk all day long. I think like any person, eating as balanced as possible is the best way to go. If you are lacking in certain nutrients, I believe it is crucial to stay on top of that as well. Patients should eat what makes them feel well. And as long as they aren’t clinically malnourished, then there is no reason to have IBD specific diets and all the other things out there about diet in relationship to IBD. All that does is make the public think that there IS a diet that all Crohn’s and ulcerative colitis patients should follow and if they don’t and they are still suffering, it is somehow their fault for not making the necessary “lifestyle choices.”

Btw, I always love all the books and articles that say “Nutrition Guide for IBD, Crohn’s disease, Ulcerative Colitis, Celiacs, Leaky Gut Syndrome and IBS”…. ah okay. I had no idea we all followed the same nutritional guidelines as others with completely different disorders/diseases. I am overflowing with confidence now about this diet! Ha.

Anyway, back to a more serious note.

I wish to God that I truly believed that diet played a role. All I wanted the first two years following my diagnosis was to be able to treat my ulcerative colitis with the Specific Carbohydrate Diet, probiotics, fish oil and some other things including aloe vera juice. It tasted disgusting but if it was able to heal my intestines without medication or surgery then who cares about the taste or how many natural supplements/diet alterations I had to go through. If I was feeling well and was able to keep my chronic illness at bay without doing anything drastic (and while probably improving my overall health at the same time), then my family and I would have been the happiest people in the world.

But I probably wouldn’t have a blog if that was the case. Or at least, not this type of blog :)

I wanted so badly to believe that I had some control over my disease. I wanted my flare ups or surgery complications to be the result of something I did or did not do because then at least there would be a reason. Things happening randomly to my body is something that has always been very difficult for me to handle. If I was able to manage my ulcerative colitis with diet, lifestyle changes, supplements, etc then I would feel even more empowered. Even more in control of my life and my body.

But to my dismay, nothing I ate or didn’t eat made any difference whatsoever. Nothing I did or didn’t do mattered. When I had my colon, I had “safe foods” that I was mentally okay with (when things weren’t too too bad) but if I was in a bad flare up then water was going to cause me to be in extreme agony. And then my years with a Jpouch, kock pouch and ostomy were filled with me thinking (because I was told) that I was “just like everyone else” and should just be out and enjoying things other people do. “Don’t worry about this stuff so much” a doctor said to me.

However, worry sets in when you eat a small salad while you are out to dinner with a friend and because the lettuce doesn’t digest, it causes the bag to leak all over the place. Worry sets in when you have a few bites of something you love while out and within a few hours, are in absolute agony and know the ER is inevitable. (I could go on and on here as I am sure you know…) But point being. HOW CAN WE NOT WORRY ABOUT THESE THINGS? Especially if they have caused so much physical pain, hospitalizations (thus feeling violated) along with the mental anguish in all of this.

The way I see it, after all I have been through, I would be a fool to risk eating anything that has been negative for me in the past, or that makes living with an ostomy more difficult. I do sometimes make exceptions with the latter and eat things that I know will make the output thick (aka more annoying) but nothing that I know is a serious problem. For other patients who haven’t had the same experiences I have, I fully understand wanting to enjoy certain foods.

I would love to be able to eat a healthier diet. Read this post to learn a little more about me in the food/health department:

A Vegetarian Who Can’t Eat Veggies..HUH??

I don’t think my brain would allow a fork full of vegetables in my mouth, let alone make them a staple in my diet.

I think making sure you aren’t deficient in any nutrient, trying to get enough protein which fosters healing, and maybe taking some supplements/vitamins is really all you can do when you have a severe case of Crohn’s disease or ulcerative colitis. Mild is a different story. I do, unfortunately, believe that diet, while always a good thing to keep in mind, doesn’t truly help an IBD patient in any significant way.

  • carly carter

    So many sentences in this post have rolled out of my mouth lately. (In sobbing form, you understand)
    There is no magic recipe. Period. That’s the reality. That’s how it is.
    And of course it changes… randomly.
    No wonder we all deal with extreme worry and anxiety.
    Tough stuff this IBD.

  • Rach

    Thank you for posting this. For me i try and eat well when i can. I understand good nutrition and dont feel that dietary modifications have been of any help to me and my disease.
    I find a referral to a dietician or discussions about diets happen when they are at a loss of what to do next. I find it incredibly frustrating, humiliating and a waste of mine and their time. I’m sure these modifications work for some people and its great when they do. Just doesnt work for me!

  • Paula Sanders

    My sister came to this understanding years ago. She fought herself for years until, one, so started dating her husband (a cool guy who knows how to be relaxed about things) and two, she lost her colon. It took me longer to come to this understanding. Now, I eat what I want, for the most part, excluding gluten. There are some things my j-pouch doesn’t like but for the most part, I eat what I like. I had Indian food tonight, mild but still, wow. There was a time I could not or would not do that.

  • Aimee Walters

    I’m so glad to see I’m not alone in my thoughts. I feel like I’ve tried it all. Honestly the only thing that has ever made a difference (for the worse!!) is tea. I don’t think my dr believes me, but that’s ok.

  • jcrohnie715

    I can relate to where you are coming from especially in the sense that using the word “diet” and books with “IBD Diet” gives off the wrong impression that a simple change in diet will drastically change IBD and gives off the impression to the under educated that maybe if those with IBD changed the way we eat we would “be better” or “feel better” all the time. I also agree that there is no magical formula or diet that works for everyone. However, I do think diet plays a role in how we feel. I know for me specifically there are certain foods I just will not eat because it causes me extreme pain. As you have noted that there are certain foods that you will not eat either. In my opinion, we all do make those modifications to our diet indicating that diet does play a role because we can’t eat whatever we want (but wouldn’t that be nice tho).

    With that said tho, I would agree your severity of the disease also plays a role in how diet affects you and you brought up that point in your last paragraph.

    I also think that there are a lot of different diets out there worth looking into. I feel with Crohn’s or Colitis you can never have enough tools to try and manage these diseases. With that said, I am not saying following any one diet to it’s entirety but knowing your body and trying things that you know may work for you or trying foods you may not have thought of. At the same time being skeptical of “fade” diets.

    I hope my though process makes sense! I love reading your blog and following your involvement in the Crohn’s and colitis community!

    • Marisa Lauren

      It does make perfect sense! There is so much at play with this disease. The diet that makes of feel best is the one that is right for you. Thank you so much for taking the time to read my blog and comment:) xoxoxo

  • http://www, david

    Hey Marisa. First of all, I wanted to say well done for taking the time to write your blog. The more info and opnions out there the better.

    In reference to diet: after 18 years with UC I’ve learnt that you are correct. In essence, IBD is such an individual disease, it’s impossible that there is one approach that will work for all – you only need to look at the forums and groups to see that every single IBD case is different.

    The best diet tool, for those who are lucky enough to be able to use it, is trial and error of our own situation. I am currently taking specific supplements and I am also juicing specific fruit and veg to see it it will help my situation. At the very least, outside of UC, I know it will benefit my general health which for me, makes it worth trying.

    Keep up the good work :)

    • Marisa Lauren

      Thank you so much for the kind words! It’s unfortunate diet doesn’t help many of us :/