Inflamed and Untamed

Obviously I am no doctor, but a cool advantage that I have that most doctors who treat IBD don’t have, is that I get to talk to thousands of patients who have Crohn’s disease or ulcerative colitis because of my blog and the community I have created, and those patients are more comfortable telling me personal issues that they may not be able to open up about with their doctors. Neato right?! 

Because of that, you let me into your lives with IBD and share with me things that you have sometimes been afraid to share with anyone. With the safety of hiding behind our computer screens we laugh and we cry together and we all feel better and then…I am left with the wheel in my head spinning like it is this morning as I sit here and drink my coffee and write this blog. There seems to be a lot of unspoken eating disorders lurking in our community and not many people talk about it. Let’s digest this shall we? 

So food. We all need it to survive yes? (Here is where I pretend you all just nodded your head in agreement and said “yes” too).

But what happens when you have a disease that attacks your digestive system creating bleeding open wounds (ulcers) and damaging inflammation anywhere from your mouth, esophagus, stomach, small intestine, or large intestine (or just your large intestine if you have UC), or any number of those places combined?

This disease causes terrible pain, and sometimes that pain occurs during or after you eat. So then maybe you decide not to eat as much…or not at all.

This disease sometimes causes your body to not absorb nutrition properly resulting in dramatic weight loss. 

Because of this disease you may have to stop eating all together and be fed intraveniously. 

Certain drugs used to treat this disease can cause serious weight gain. 

Symptoms of these diseases are usually embarrassing (like diarrhea) and you may try to control them by eating at specific times. 

Certain foods may not be tolerated and you wind up in a cycle of eating only your “safe” foods. 

You see where I am going with this? Our disease and it’s treatments have a lot to do with our digestive systems, our weight, and often what we put into our bodies.  I’m not talking about eating disorders here that fit nicely into the boxes of the more well known eating disorders such as anorexia or bulimia. I’m saying that there IS disordered eating going on in the Crohn’s disease and ulcerative colitis community. How could there not be?  I know this because I read emails and messages almost every week that back me up here. Think about it…

Restrictive eating for example. If you find that you can only eat certain foods without feeling miserable then you are going to stick to those foods right? But there are some of us who become so focused on our “safe foods” that it disrupts our thoughts and interferes with daily life. It can become so bad that you are only eating those foods every single day and you are cancelling plans and constantly fearing food or places where they will serve food because you won’t be able to eat “your food”. Or perhaps you start restricting your food because of the pain that IBD causes. You find that not eating as much helps, but soon you are caught in a cycle of restriction that gets worse and worse. Or maybe you find that you experience diarrhea so many minutes or hours after you eat so you start to plan your eating schedule around your life. Perhaps you decide not to eat dinner because you are going out later, and so on.

Weight loss and weight gain because of the disease itself or it’s treatments may also spark disordered eating or a disordered body image. What happens when you gain a ton of weight because of steroids and you are so freaked out that you restrict your food so much to lose that weight that it sparks an eating disorder? And then there is the whole “but you don’t look sick” thing. A number of you have told me that you keep your weight low because people do not believe you are sick unless you look sick. Oh! And having a disease alone can cause disordered eating. A lot of times eating disorders are not about the food or about weight but about controlling something or coping with trauma. If you ask me, having Crohn’s disease or ulcerative colitis can be pretty traumatic at times and you often feel out of control. 

So in conclusion it’s no wonder there are eating disorders lurking in our community but they are often not talked about. A lot of the symptoms and treatments have so much to do with our digestive systems. This blog only touches the surface on eating disorders and how complicated they can be. I should state that this blog was written by me (who is not a doctor) and is backed only by my experience as a patient and as a health activist who gets to talk to other patients. If you think you may have an eating disorder please seek help. If you need help finding that help, let me know. 

-Sara