Crohn's and Eating Disorders

[gadgetninjette91]

I am a fairly new Crohn's diagnosis and I have struggled with anorexic and bulimic behaviors for the last ten years. The Crohn's has made me lose about 40 pounds and I know that it is very unhealthy and I need to gain a little bit of weight but the weight loss has been bringing about thoughts of needing to do whatever it takes to stay skinny. I have terrible body image issues from being in very serious ballet lessons as a young teen and I have also been overweight at times and I don't want to ever be overweight again (which I'm not sure is even really an issue given that I can't nearly eat the way I used to quantity-wise without horrible pain) but I am having horrible thoughts and very strong negative thoughts about my body image. I have no desire to act on my old behaviors but I am looking for someone who also has trouble with body image and who can help me put things into a better perspective and focus on what's healthy rather than what all the magazines say I should look like. Any other crohnies who have struggled with eating disorders?

 

[Cat-a-Tonic]

I've been there although I was fortunate to have a big period of time in between my eating disorder and when IBD came along. From about ages 16-19, I dealt with anorexia (never bulimia - I am extremely averse to vomiting). At 16, I was so thin to begin with (122 lbs at 5'8" which was underweight already) but I had a bit of cellulite and my mother called me "disgusting", which horrified me to the point that I started starving myself and hating myself and feeling like I really was disgusting. I kept myself between 105 and 108 lbs - any more and I felt like I was a hippo and would starve myself for days, any less and I'd start to become noticeably skeletal and would get afraid that someone would notice and make me get professional help. At 19, I had a good friend who helped give me perspective and I started to heal from the damaging thoughts and behaviors around that time. Sadly, my friend suddenly passed away in a house fire when we were both 19, but thankfully that didn't impede my recovery (if anything, it made me want to get well to honor his memory).

IBD came into my life just before I turned 30, so there was about a decade in between the ED and IBD where I was reasonably physically & mentally healthy. I'm fortunately well enough in my thought patterns that I recognize now that too thin = sick and healthy weight = okay. If anything, my thought patterns are now basically reversed from when I had an eating disorder. The first year I had IBD, I was so so sick and miserable and was losing weight out of control. Looking back on photos of myself at that time, I can recognize that I was too thin and looked very ill (I got down to 115 lbs and my thighs looked like toothpicks). After that first year, I went on steroids and gained a bunch of weight but felt so good, that I've come to associate weight gain with health and weight loss with illness. I'm currently at about 145 lbs thanks to steroids and I'd like to lose about 10 lbs as my healthy weight is about 135. But, I'm okay - I'm not going to starve myself or do anything drastic to lose those 10 lbs. I can do it the healthy way, or I also recognize that I'd be just fine staying at this weight. I'm not overweight, I'm not fat, I'm not disgusting. I'm okay!

So, even if you do gain weight due to steroids or whatever other cause - please recognize that it's okay. If you're very ill and losing weight, you probably do need to gain a bit to get to a healthy weight. You're not gross, you're not fat, and it's okay to gain weight. And those models in magazines are photoshopped like crazy (my father-in-law works at a printing press and he regularly sees the pre-photoshopped pictures, he said there are stretch marks and blemishes and they slim people down considerably and do all sorts of crazy cosmetic fixes in photoshop - nobody looks like those models, not even the models themselves, I promise). Having flaws is okay, gaining weight is okay, being okay with yourself is important and totally possible. It took me a long time to learn that.

 

[gadgetninjette91]

My weight is in the double digits for the first time since before I hit puberty and I know how bad it is, it's very hard when our media pushes the standard not necessarily for the way we look but all of this talk about how obesity is on the rise and is the number one threat in America. Doesn't account for those of us who need to gain weight, though I'm still technically in the "normal" range for my height of 5'1" (but I'm at the far lower end of "normal" and will be underweight if I lose any more). I used to take psychiatric meds (Risperdal and Zyprexa) that made me blow up like a balloon and was endlessly teased for it because I used to be quite thin. Thankfully I didn't really need those drugs so I was able to go off them and I returned to what were then my normal proportions. But you're absolutely right that I need to be focused more on what's healthy for me rather than a photoshopped image of some woman in a bikini. My doctors have been hesitant to put me on prednisone because of what it does to me mentally but any meds that cause any kind of weight gain have always put me off. But rationally I know I shouldn't be afraid to gain at least a few pounds. And more likely than not, if it's caused by any kind of meds, I'll probably just swallow my pride (or whatever you want to call it at this point) and keep my head up knowing I'm doing what I have to to take care of myself. But I'm glad I'm not the only one with body image issues, still, I'm sorry you've had to go through that struggle as well.

 

[Cat-a-Tonic]

Would Entocort be an option for you rather than pred? I've been on both - I was only ever on pred for very short periods of time, but it made me HUNGRY and gave me crazy manic energy. On Entocort, it's a milder med and I felt much more balanced - I had an appetite but didn't need to eat everything on earth, and it gave me enough energy to feel like a normal human. I did gain weight on Entocort, but not a ton. Last year I was on Entocort from Feb - October, and I gained I think 2 lbs total while on it and another couple lbs after I tapered off of it. Gaining 4ish lbs total in like 8 months is not too bad. (I gained the rest of my extra 10 lbs from steroid suppositories - I recently had bleeding internal hemorrhoids, so I was put on hydrocortisone suppositories, and I tend to gain about 1 lb per week on those). So yeah, Entocort may make you regain some weight that your body needs in order to be a healthy weight, but it shouldn't make you gain much more than that at least in my experience.

 

[gadgetninjette91]

Thanks, I have a few meds to ask my doctor about, I'll add Entocort to the list. 2-4 pounds is nothing, I probably need that and then some, as long as it doesn't have too many side effects that could adversely affect me negatively. Glad I was able to get some perspective from someone else who has been there. Thank you for the support!

 

[Cat-a-Tonic]

The main side effect I got from Entocort was headaches, and my understanding is that most people don't get headaches from it. It's mild as it's largely not systemic (my GI explained to me that a little bit of it does get into the bloodstream so it's a little bit systemic, but on the whole it's topical - it has a special coating that releases in the TI and colon - and most of it does not get into the bloodstream). I just noticed in your signature that you have Crohn's in the jejunum in addition to the ileum, so Entocort may not be the best option for you after all as it will pass through the jejunum and part of the ileum before it releases the medicine from the capsule. Something to ask your doctor about, at any rate. Good luck!

 

[gadgetninjette91]

Ah, thanks for letting me know. It's definitely hard having a less common presentation because thus far my doctors haven't really known what to do with me except put me on a ton of Pentasa that doesn't work as much as I'd like it to. My doc said to just "be patient" and come back in six months but I moved back in with my mom so I'm going to see a new doctor soon, hopefully within the next week. I don't know why this is all I'm taking seeing as it's only approved for UC which makes me think it does little to nothing up higher.

 

[Cat-a-Tonic]

Pentasa does work on the small intestine (with a caveat) - it also has a special coating that releases higher up than Entocort does, so it works on basically the full length of the small intestine. It's only approved for UC because it's topical. Crohn's can affect the entire thickness of the bowel, but UC only affects the first or "top" layer, not the entire thickness. Since mesalamine drugs like Pentasa only work on the top layer, and not the entire thickness, there is some dubiousness as to whether it should even be prescribed for Crohn's, as it wouldn't really do anything for the other layers of bowel which may also be inflamed. Long story short, it likely won't induce remission but it may give you some relief.

I'm glad you're seeing another doctor soon. Hopefully your new doc has better ideas for you than just Pentasa. Good luck!