Eating Disorders and Body Image Issues brought on by Crohn's

During my most recent flare, I lost a lot of weight. I went from 117 lbs to 95 lbs, and I am 5'1 tall. I am blessed to be feeling better now. I am no longer feeling ill, and I am grateful for this beyond belief. However, I suddenly have body image issues. I am mad at myself for having these issues, but I just can't seem to help it.

Prior to crohn's, I never worried about my weight at all. During my flare, I wasn't happy to be skinny - I felt frail and longed to be healthy again. But for some reason, as I now gain back my weight (I've gained about ten lbs since flaring) I suddenly feel large, and I feel guilty, in some weird sense, for gaining weight quickly. Maybe this is because I got used to myself at a new, small weight - I saw my body a different way, and that became my new normal... I don't know. But I just keep on blaming myself for every pound I put on, and I feel gluttonous for eating normally. I feel like I must have an abnormally huge appetite, because suddenly I enjoy food again and eat at least 1600 calories a day. I feel guilty for eating normally... for eating three meals... I am constantly trying to diet. All the while, I am really ashamed of my behavior and my fixation on my weight. After all, I am healthy again. Shouldn't I be grateful? What is with this? Never before have I ever felt heavy for being at a normal weight.

I am wondering if anyone else has gone through anything similar. My crohn's weight loss has surely altered my body image, and I really want to snap out of this. I am worried that this fixation may progress into an eating disorder, and I will likely seek psychological help.

Also, can you guys tell me if it is indeed normally to rapidly gain weight back after you're done flaring? I am blaming myself for my weight gain, and I could definitely use a reminder that this gain is indeed normal...


Thanks so much for your time. I am sorry to post about something as shallow and vain as weight gain when many of you are suffering so profoundly right now.


Love and best wishes,
M

thank you so much for your response, and for sharing so much of yourself. I never realized the pressure that jockeys go through to maintain a low weight. That sounds so rough. I hope that you are doing better now. Try not to be so hard on yourself, if you can help it! The disease puts us through so much already - the last thing we need is to beat ourselves up more! :) Thank you for your feedback, and for validating that it IS normal to put on weight and to be hungry. The logical part of me knows that, but the more I can hear it from others, the better. Thank you.

I have struggled with the weight issue on the opposite end of the spectrum. I've been quite sick yet I cannot lose the weight I gained during my last pregnancy. I want to blame the prednisone I was on all during it. When I first flared 2 years ago I lost 15 lbs in a matter of weeks, I was happy with that as bad as it sounds (but given the circumstances I was in it was the only thing I enjoyed, seeing my weight back down to normal). The only upside to this disease is that I keep telling myself if I get even worse in my flare I'll probably lose weight. Not the best mindset I know and I'm working on fixing that way of thinking, gotta have some leeway with weight afterall. I've lost some weight, but I would like to lose more, because I am overweight. I am 165 and 5'5". My belly still looks like it's pregnant, from all the bloating and I now have the added side flab. I am very consciencious of my looks. In highschool and before I was dx I was 120-130. I tried the anorexic lifestyle in high school (dumb I know) but I loved food too much and couldn't do it. Now I still kinda live it, but not really by choice, I don't have that anorexic mindset where I think "I'm fat, if I don't eat than I'll get thin" instead it's "I don't feel well so I won't eat" Make sense? Anyways, I think it's fairly common to have these issues.

Thanks for posting this topic and thanks all for sharing. 

This is an issue that I have struggled with since my diagnosis at age 11.  At that point I'd already reached my full height - 5'8" (I come from a tall family) and I weighed about 90 pounds.  I ate and ate, but never kept any weight on.  Once I was diagnosed with Crohn's the first thing the doctor said was, "well, now we can finally get some weight on you!!" and I was terrified!  All the girls in my class told me I was so lucky to be thin, and I thought that was the only reason they liked me.  I was also so scared of getting a big moon-y face from the prednisone.  My GI doc said that limiting my salt intake might help with the moon face, so I became obsessed with all the sodium in food and started measuring all my portions and working out for 3-4 hours every night (my dad had a home gym in the basement and I would sneak down while my parent's watched TV.)  One of the GI nurses noticed that I was gaining weight, but not as much as they would have liked and she asked me about it.  I confessed about the exercising and measuring the food.  It was a huge burden off my shoulders to have the secret out and to get positive support (I went to a therapist for a short while at that point.)

Flash forward to my last big flare up 6 years ago - I weighed a pretty healthy 140 at the time and was feeling good - when all of a sudden I was hit with a huge flare.  I was on disability for over a month and threw up almost everything I ate.  By the time I was approved for, and on, Remicade, I weighed about 115.  Once I started on the Remicade, I started gaining weight, but it was slow going and took about a year before I got to 130, which is where my weight has pretty much stayed. 

There are some days when I still feel big.  I'll weigh myself and think, hmmm, if I got down to 120 this might look better, or that might be slimmer.  I always feel a bit defensive when doctor's mention a weight change, or make a comment about it - good or bad.  I feel awful about that.  I KNOW that my weight is healthy, but I've been on a very restricted diet for the past year and think, why haven't I lost more weight?  At the same time thinking, that's crazy!  You need the extra weight in case you get sick.  I feel like it is petty of me sometimes, there are so many other problems I could have - and that others have - why is my weight an issue?  But it is hard when people comment about your weight and seem to expect you to look a certain way. 

Sorry for the long ramble, I just couldn't stop on that one!  I really just wanted to say that you are not alone and that you should not feel guilty about gaining the weight.  It is totally normal - and healthy - to gain weight back rapidly after a flare.  Your body knows you need it right now and it is good to keep some extra pounds on to be healthy - and just in case you do have another flare.  Give yourself more time to recover and get 100% better and then there is always time after that to go to the gym or worry about calories.  And despite my ramble above, I do feel that way and have not been counting any calories or restricting myself this holiday season!!  Plus - I never get to decide where the weight comes off of - and a decrease in weight usually equals a decrease in chest size for me - and I don't have much to spare!

I think it is common for people with crohn's to feel this way. Between the disease which can make us lose weight and steriods/other meds that make us gain weight, it's hard to know what "normal" is for our own bodies and it's easy to develop an unhealthy relationship with food. When our lives seem to revolve around our digestive systems...well yeah. We are going to get a little food obsessed or weight obsessed. It's hard. I would say keep an open line of communication about this with your Dr so they know what is going on with you and can keep an eye on any disordered behaviors that might start to pop up.

Yeah, I can relate to this subject.

I'm 5'0" and was never naturally thin. I put on a lot of weight when I was about 11. My mum euphemistically described it as 'puppy fat'. Nope, I simply ate too much of the wrong type of foods and virtually nothing healthy. At 19 I joined Weight Watchers and managed to lose most of my excess weight, but I never became thin. At 25 I was diagnosed with Crohn's. Symptoms were mild; lost no weight in the first few years. Then the disease worsened and I began losing weight - not dramatically in some huge flare-up, but gradually over a period of, I dunno, 2-3 years. The point is I wasn't trying to lose weight. I didn't go on any diets or cut out any foods. Yet between the diarrhoea and the fevers, I guess my body started finding it more difficult to hold onto food.

I estimate I lost somewhere between 2-3 stone (28 - 42lb). Since 2009 my weight has held fairly steady at the 90lb mark - sometimes been a bit under, sometimes a bit over. And yet I've got an issue with putting weight back on: the thought of getting to 7 stone (98lb) makes me unhappy, even though for all of my adult life I was between 8 and 9 stone and happy with that. At the moment I'm 'protected' from putting weight back on by simply being unable to eat very much. If I eat the same amount as 'normal' people do I feel like a pig who has grossly overeaten. It's partly physical: eating too much at any one meal, or too much throughout the day, has the effect of making me feel uncomfortably full, distended, etc. for hours on end. So even if I haven't eaten that much in terms of calories, both physically and mentally I feel like I have done.

To be honest, I don't know what I'd do if my Crohn's went into remission overnight and I could eat again without any digestive symptoms. A part of me thinks "yaaaay! Non-stop eating ahoy!", while another part of me is scared of piling on the pounds rapidly.

In a nutshell: I don't think I have an eating disorder, but having Crohn's and losing this much weight unintentionally has, I am certain, brought me closer to the brink of having one than I ever would have done otherwise. I like the taste of food too much.

PS: Your rapid weight gain is normal, physiologically speaking. When the body is suddenly and dramatically deprived of food for a while, it goes into starvation mode. It perceives that it isn't getting enough food to sustain itself, so it lowers its metabolism and starts burning muscle, instead of fat, for fuel. You need less calories to keep on going during this time. The flip side is that, as soon as you begin eating normally again, the body will be in a major rush to store incoming foods as fat. This piling on the pounds doesn't last for ever, fortunately. So don't feel bad! You're certainly not overeating at 1600 calories a day, no matter how much it may feel like it. You also probably look better for those extra 10lb. I think most women look better at a normal weight than a skinny one.

1 stone = 14lb, just to clear it up once and for all <_<

Thank you all so much for sharing your personal experiences with me. I have honestly read everyone's reply at least twice - I am just trying to soak up your advice, your stories, and your words. It seems a lot of us are in the same boat when it comes to the emotional baggage (and body image baggage) brought on by Crohn's. I am trying to take all of your advice to heart - to see my weight gain as essential and healthy, and to not feel guilty for it. I hope that all of us can learn to do that. Thank you all so much for your kind words. You have inspired me! I love all the responses I am getting and I hope I get even more, because this support system is just amazing.

Post Edited (Mareve) : 11/30/2010 9:11:20 PM (GMT-7)

Thanks for asking this! I've really wondered about this the entire time since my diagnosis...I've been up and down my whole life. I can honestly say I've weighed from 212 pounds - 112 pounds and everywhere in between and it's left my body image slightly messed up. Just personal history - overweight in middle/high school, went on a diet lost ~60 pounds, got sick with Crohn's, lost another 40 pounds and got downright skeletal prior to my finalized diagnosis. I'm 5'6 so it's definately not a good spot to be...

When I went on Pred after diagnosis, I gained 30pounds in a month. I've always felt HUGE since then. Looking in a mirror when I wasn't expecting it was jarring. I didn't recognize myself for weeks. Finally, I evened out at a healthy weight for my height and manage to get myself to being a pound or 2 overweight so I could have some extra weight to carry around with my Crohn's...which is good, as I've lost ~10 pounds since March without trying and eating everything I can get my hands on...

I wear a size 10, but I always pick up larger sizes thinking that's what I should fit into first. I identify with plus-size women and I've felt like a plus-sized woman ever since the rapid weight gain with the Pred. Which is fine because I love my body as it is. :)

I lived with a roommate who was anorexic (active and later recovered) for about 4 years in grad school and I found that she would do the same things; thinking she was overweight and buying larger clothing sizes only to find out they weren't the right size. It's always felt weird to me to think that we both have very, very different diseases but it's changed our own perceptions of our bodies.

Though I have to admit that since this most recent flare I've been much, much more attune (not quite to the level of someone with ED) to find out what's in my food so I know what's in it. So I know if something bothers me, I can figure out the food and then cut it from my diet.

Sorry for the long post...just to answer your questions. It's NORMAL to gain weight rapidly after a flare. Your body wants all the nutrients it can get. 1600 calories a day is just enough to be healthy so you might want to eat a little more? Dieting is not good at your height/weight because its very possible to get sick for a week and drop 5 pounds without even thinking about it. It's good to have at least a few pounds of cushion...

mtgman, tooth, and bigbetty - thank you so much for reaching out to me. I am so touched, and I will definitely keep your wisdom in mind.

All the best to you.

While I have not experienced huge weight loss with the colitis that I had (it was not crohn's colitis) I did have a body image problem earlier in my life. I would diet and exercise in my teens through my 20's to stay thin. It was a huge issue for me. When I got into my late 30's, got divorced, got into therapy and on anti depressants, the body image issues went away!!!! Now I am quite plump and would love to lose some weight but I accept my body type. I am happy to be past all that. I really think it was a control issue, OCD or anxiety that drove me to stay thin and I NEVER appreciated what I had. I always thought I looked fat when I was quite thin. I didn't weigh 100 until I was in my 30's. It was interesting reading all the posts. I don't think it is the crohn's causing the eating disorder, I think it perhaps is triggering some issues you already had. I hope you can get some relief and help soon. You need to be healthy and focus on good nutrition, not being a certain size.

Huh? Whats going on NCOT? Did I miss something?

@Nanners - Yes, you must have done <_<.

I see the poster has been deleted entirely now, but earlier on his post was still there but edited out. He was promising "life-changing information" to all those who emailed him. Sadly, I don't remember the email address, so my life will have to remain unchanged :p