Disordered Eating and Body Issues with IBD

For an outsider who doesn’t really know that much about Crohn’s Disease or ulcerative colitis, they might not understand how IBD impacts almost every facet of a person’s life. Eating, body image issues, and self-esteem problems are what I want to focus on now.

I have developed major eating issues (I typically refer to it as disordered eating) because of my ulcerative colitis. I also have self-esteem problems related to my constant weight fluctuations. My body image truly sucks. I have no idea what I “should” look like or weigh. I am trying to be real here, not negative, so that other people who are feeling this way might be able to take comfort in the fact that it is so far from just them.

I have never admitted this but when binge eating disorder started becoming more widely known and understood, it made me feel less alone. Seeing commercials for it so much kind of made me feel like “if someone who hasn’t had their entire digestive tract re-done can have problems with food, maybe I am not as crazy as I thought.”


I always thought healthy people just ate, went about their business, and never really gave it much thought. I did have girl-friends in high school who I know suffered with their weight, eating too much, eating too little, etc but I still for some reason felt like the odd one out.

Disordered eating, as I like to call it, is so common among patients with Crohn’s Disease or ulcerative colitis. It is only recently being talked about more openly because discussions of food and weight and low self-image are just too vulnerable for most people. Heck, it is an incredibly difficult thing for me to share and I honestly will only get into the nitty gritty details of what I go through with one other person in my life (who happens to also suffer from IBD.)

Picture this for a minute:

There are a lot of times when an IBD patient either cannot physically eat, or they don’t feel comfortable mentally ingesting something.

So, they do without food.

Until they come home, their body feels starved (because, well, it has been, through no fault of that person,) and craves nutrition.

Usually, when someone is so incredibly hungry, they don’t make themselves healthy meals; they reach for something quick and easy. And while those simple things can help with hunger, a person’s body is not getting the nutrients they really need…so their body craves more food. And a binge cycle can start.

There have been so many times when I was just eating the entire fridge and kitchen (things I barely even liked!) because my body just craved food.

There have also been times when I eat something I know is bad for my GI tract, so I figure I might as well make it a “bad eating” day. If I am going to suffer anyway, why not eat whatever I like and enjoy it since most days, I have to be much more restricted. Sometimes, my stomach is hurting as I am stuffing my face. It makes no sense but seriously…. that is how messed up my body/brain is when it comes to food because of this disease.

I was a competitive swimmer who loved eating, didn’t worry too much about weight even though I was a lot heavier/more muscular than other girls my age, and just loved being me. When ulcerative colitis came into my world and changed my body in ways I never thought possible, I don’t think my teenage brain knew how to handle it.

I also started to see that not eating meant less time running to the bathroom. And then with my ostomy, less food meant less chance of a leak. It also meant that I could focus on what was in front of me instead of constantly checking to make sure my bag wasn’t filling up, excusing myself to use the restroom, and just missing out on the day.

There are times when doctors convinced me to give up entire food groups, only then to find out that eliminating those foods made no difference. It always took me a while for my mind to feel safe eating certain things again.

I could go on and on and might write another article about this topic at some point but I just wanted to put this out there. Eating issues are extremely common in inflammatory bowel disease patients and the topic is not covered enough, in my opinion. Lack of resources and people sharing their personal stories led me to feel completely alone in this area of my life. I want to share this with others so they don’t have to feel how I felt for so long.

To anyone who is reading this and can relate in some way, please know that there is nothing wrong with you! Or, actually, the only thing wrong with you is the fact that you have a disease that you cannot control that also happens to impact every fiber of your being. It would be strange if your eating habits and/or the way you felt about yourself based on weight fluctuations from surgeries and medications, etc did not impact you.

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Comments

View Comments (16)
  • Lisa
    12 months ago

    This is such an issue with me. I was diagnosed with crohns disease at the age of 35. At that time, I was overweight. (I was overweight starting in grade school and remained overweight up until 2 years ago. Yes, I was bullied in school and even after that.) Now at the age of 47, I am so skinny that some people do not even recognize me. I have been accused of using illegal drugs. I still have Family and Friends say to me, “please do not lose anymore weight”. They tell me to eat more. I do eat. I sometimes eat so much food I cannot move. Your article really hits home here! Thank you for writing it. This group is all that I have at this point. I have yet to “snap” at the next individual that comments to me I am too skinny because I respect the fact that they do not understand. God bless you all.

  • teachinturtle
    2 years ago

    Thank you so much for writing this article! I lost 100 lbs. in 8 months while my doctors were trying to diagnose me 3 years ago. Since my Crohn’s diagnosis & having bowel resection surgery 2 years ago, I have been mostly in remission. Initially, doctors told me I needed to gain some weight back. But I have gained 60 pounds because I always feel hungry. I feel like I have developed an unhealthy balance with food. Before surgery, I couldn’t eat anything without getting sick. Now, I can eat things I haven’t been able to eat in years. I feel like I’m stuck in a vicious cycle of trying to get my weight under control and staying in remission. I’m embarrassed to talk to anyone about my struggles. I just want to feel normal and maintain a healthy weight.

  • 3 years ago

    Hi,
    You are a courageous warrior for sharing these deep feelings about how your disease affects the way you feel about food. I do not have Crohn’s but live with bowel incontinence on a daily basis for the last 5 years and it has taken a toll on me and my health.

    I was feeling so alone and isolated to this issue. Twice I have been down to 100lbs. due to not wanting to eat because the ramifications were just not worth it to me. I have since been able to gain weight but everyday is a struggle. On top of the struggles I have had a hard time finding others that will talk about pooping problems and how it affects their life and what coping mechanisms anyone could offer to someone that is also living (existing) with the same types of issues. I signed up for this site because although I do not suffer from IBD, I somewhat know what it’s like. I have even tried a Sacral Nerve stimulator implant and had it removed because it just was so painful and not helping. I do have the option to get a Colostomy but it literally scares the poop out of me. I guess at some point I may go that route as I am just existing and not living right now. I have also fallen into to a deep depression and trying to get out of it now.

    Hugs to you and any others that suffer on a daily basis. It’s hard to open up and let others know what you are feeling but I am sure it lifts a weight off your shoulders to write about it and knowing you are not alone.

    Hugs

  • Kelly Dabel moderator
    3 years ago

    Thank you for your feedback Iva1969! So glad that this article resonated with you and reminded you that you are not alone in this. You are also not alone in the depression you mentioned. In addition to speaking with your doctor, this article may be helpful to you as chronic illness can have an intense impact on emotions: https://inflammatoryboweldisease.net/living-with-cd/mental-health/. Let us know how we can support you and if you have any questions. Thank you for being part of our community. Kelly Dabel, RD – InflammatoryBowelDisease.net Team

  • 3 years ago

    Great article, Kelly – it really IS difficult talking about an IBDer’s relationship with food… especially to those who know little about our disease.
    Along with so many other things from my pre-Crohn’s life, I miss “food” the way I used to know it. After [trying to] eliminate all the foods that irritate my IBD (via low residue diet], I have another whole list of foods I can’t eat because Crohn’s has taken my teeth, too. Yes, I have dentures, but after several years of many adjustments to make them fit properly, I still need to stick to soft foods.

    Also, despite our sky-rocketing health insurance premiums, nutritional counselling is not covered.

    As someone whose IBD has them tethered to their bathroom, yet cannot lose a single pound, I admit to having an awful body image. But it’s because I do know what my body should look like – or more accurately, what it should NOT look like: I see it every day.

  • Kelly Dabel moderator
    3 years ago

    I hear you IBDebi. Thank you for sharing with us here. Sorry to hear about your struggle with food and weight, you are not alone here. I hope that our community is helpful and encouraging to you. We’re here to support you. Let us know any questions you have and please stop by anytime you need a listening ear or to vent. Kelly Dabel, RD – InflammatoryBowelDisease.net Team

  • 3 years ago

    This is so true! My weight has fluctuated so much. I am 44 and was dx with Crohns when I was 19. There are times when I didn’t eat a thing and lost so much weight because I was afraid to eat. Since surgery last year, I binge on food because I avoid eating when I’m out. My food choices aren’t always the healthiest, but when I choose to eat healthy, I suffer the consequences.

  • Kelly Dabel moderator
    3 years ago

    Hi there sjb91, Thank you for sharing your experiences, many here can relate. You are not alone. Each person really has to find what foods they can tolerate. What works for one may not work for another. In addition to ongoing discussion with your doctor, these articles may be interesting to you, if you haven’t already seen them, Eating Tips and Strategies: https://inflammatoryboweldisease.net/living-with-cd/eating-tips-and-strategies/ and My Unhealthy Diet: https://inflammatoryboweldisease.net/nutrition/my-unhealthy-diet-with-uc/. We’re glad you’re here! Please let us know any questions you have, we’re here to support you. Kelly Dabel, RD – InflammatoryBowelDisease.net Team

  • 3 years ago

    My daughter is having a horrible time if it. She stopped eating due to pain and depression. She has gotten some inpatient help but now is part of an outpatient program for eating disorders. It is really hard to want to eat when you know it causes pain. She has had j pouch surgery and has adhesions which do not allow for easy movement of her insides. They are reintroducing food but it is so hard. Anyone else have pain from eating? How to resolve?

  • Kelly Dabel moderator
    3 years ago

    Hello wcoasttigger, So sorry to hear your daughter is having a horrible time with this. You sound like a great support to her and I’m glad to hear she is getting the help she deserves. In addition to speaking with her doctors and Registered Dietitians, these articles on pain with Crohns may be helpful, Abdominal Pain: https://inflammatoryboweldisease.net/symptoms/abdominal-pain-and-cramps/ and Symptom Management: https://inflammatoryboweldisease.net/treatment/symptom-management/. I can say that she is not alone in having pain from eating, many here in our community can relate. Unfortunately, there is no one answer for everyone. Each person is different and responds to foods differently. It’s really a matter of patience and trial and error. Sending positive thoughts that your daughter, along with her medical team, will find what works for her on her road to better health. Please stop by anytime for info and support, we’re here for you both! Kelly Dabel, RD – InflammatoryBowelDisease.net Team

  • 3 years ago

    Marisa, Thank you so much for sharing your personal experiences. I am 45, was dx at 17 with CD, became an RD and still suffered terribly with an eating disorder throughout my 20s due to fear of food, need for control, body image distortion, binging and purging, starving, etc…
    I have just started sharing my journey and your article has further empowered me to do so. I was so lost, lonely, isolated and confusion – i would like to help others who are experiencing this. Best,
    Alissa

  • Kelly Dabel moderator
    3 years ago

    Hi Alissa, Thank YOU for sharing as well. It’s wonderful that you are now ready to share your story with others. Many here in our community can relate and I’m sure will be encouraged by your words. Thank you for being here! Kelly Dabel, RD – InflammatoryBowelDisease.net Team

  • 3 years ago

    I am so thankful to have come across this. Thank you for writing and sharing!

  • Kelly Dabel moderator
    3 years ago

    So glad this resonated with you catcow. Thank you for being part of our community! Kelly Dabel – RheumatoidArthritis.net Team

  • 3 years ago

    Wow. Great post. I feel like you perfectly explained what I have been struggling to articulate for years!

  • Kelly Dabel moderator
    3 years ago

    So glad this article touched you Katethegreat. We’re glad you’re here and hope that this and other articles here give you some tools for sharing with others. Thanks for your comment! Kelly Dabel – RheumatoidArthritis.net Team

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