Eating disorders and crohns

[eclaires]

Hi, I am a newbie to this site so please excuse my 1st post being a really personal one. Having said that I have recently had to learn how to discuss my most personal habits wiv all and sundry so I guess anything goes!
But I wondered if anyone could help me?
After suffering from 'IBS' for the past 15 yrs I was diagnosed wiv crohns a couple of months ago. I refused steroid treatment for several reasons but mainly because I have suffered from an eating disorder in the past and although at the mo I am in control of it I knew it would just cause more probs if I had to take a drug that wud make me put on weight. Have recently had my 2nd infusion of infliximab and am gradually starting to feel better (which feels a little wierd in itself after so long) but I've also started to put on weight. It's prob only because I'm finally able to absorb the food I'm eating but I'm getting really really anxious about it! I know it's stupid as I'm finally starting to get 'well' again but I am starting to just want to lose weight again.
I just wondered if anyone else had ever had these two conflicting feelings before and could help at all? Before I got really poorly I used to run loads, marathons but have not been able to for over a yr now. Just starting to feel a little scared don't wanna go down the poorly road or the other one but don't know how to manage the two?

 

[dreamintwilight]

Hi eclaires! Welcome to the forum

I don't have any personal experience with eating disorders, but hope you can find the info and support you are looking for on here. Glad to hear you are feeling better on the Remicade!

Perhaps there will be others on here who could provide more insight. Here's my two bits: Maybe you could talk with a professional who specializes in body image? Were you officially diagnosed with an eating disorder or know you've had issues with eating and weight? If it's the latter, a professional would be able to help you sort through those anxious feelings. Maybe they would be able to recommend a local group of women who have struggled with eating disorders.

I think the fact that you are aware you are getting better and it's natural to put on a little more weight is a good thing Wish I could be of more help.

 

[CrohnsHobo]

Weight and food are some of the most frustrating things for me with this disease. For example since Xmas I have put on 25 lbs. Luckily I was down below 150 at the start of this.

I personally though wouldn't let the weight fluctuations stop me from taking meds to feel better. I sure have a much higher quality of life now compared to six months ago, even though I feel like a little piggy.

Just need to eat right, and get back to exercise to balance the pred weight.

 

[MapleLeafGirl]

I'm pretty new too, but from what I see, you don't have to worry about being personal here!! I have never suffered from an eating disorder, but I can sympathize with the conflicting emotions of being happy you're finally putting on weight, but then being a little worried about it too. When I finished my last bout of prednisone I was 10 pounds above my "normal" weight, then I had a bad few days and quickly lost 5 pounds. I've decided to stop worrying about weight and just worry about feeling good. Just try and focus on that and if that doesn't help, it never hurts to talk to a professional about it. The last thing you want to do is stress yourself out because that just makes everything worse.

 

[dreamintwilight]

Oh, I was going to suggest perhaps if your doc insists you be on steroids try Entocort over Pred. It's less likely to give you moon face like pred often does because it's non-sytemic. You may gain some weight naturally, but maybe it won't seem so noticeable without the moon face. I also didn't get "munchies" like I hear a lot of people talk about while on Pred. Just a thought if you get to the point where you need something extra and need to reconsider steroids

Oh and the reason I asked if you were officially diagnosed with a clinical eating disorder is because I understand the conflicting feelings of body image are more serious than a typical person's annoyance with weight. So, it's easy to say to focus on getting healthy, but if you are struggling with legitimate body issues a professional would be able to help you specifically with ways to counteract those patterns of thinking

Not to devalue what Chris or Maple are saying But it's more involved, I think, for people with disorders and body image issues.

 

[eclaires]

Hey all thanks for the welcome and all ur comments yes unfortunately have been bulimic in the past and when I finally overcame that have had several episodes of starving although thankfully never became so underweight as to be clinically anorexic. Have seen counsellors in the past which have helped me stop but now it's harder as I feel I'm outta control again. My sane mind knows it's ridiculous and I need to at least put on the weight I've lost since I've been poorly it's just hard accepting that!

 

[eclaires]

Also I do worry my messed up eating have caused this, is it just all my fault?

 

[PeninsulaLil]

Getting Crohn's is no one's 'fault'. It's a disease with unknown cause and most likely a combination of environment, heredity, microbes and luck of the draw. I agree with Marisa; this is one where I wouldn't try to go it alone, but would get some expert help. Eating disorders are nothing to fool around with. IMHO it's not a matter of being 'in control' of it. Like Crohn's it's a disease and the best one can do is accept the diagnosis and do the things that make it better. I have had eating problems in the past and lost a friend to anorexia so I know how insidious it can be.

Glad you found this forum! Great people on here to support you no matter what!

Lilly

 

[dreamintwilight]

It's absolutely not your fault! Stuff happens and it's not always great unfortunately. But it's okay to feel bummed out by out. It's a natural coping mechanism and hey, Crohn's sucks!

There is nothing wrong with going back to your counselors again to get some extra support, especially if you weren't diagnosed with Crohn's back then. More and more counselors are trained these days to help people with comorbidity (people who suffer from 2 or more chronic illnesses). they will be able to specifically help you now that you are dealing with two separate issues that potentially conflict.

Staying at a healthy weight is SO important for Crohnies because we're already absorbing things improperly. It wouldn't be fun if you had to endure other health-related problems because you were having troubles with your diet too.

 

[Astra]

Hi eclaires
and welcome

concur with everything, can't add any more than that, only to say I know how hard that must of been waiting 15 years for a dx, and the old IBS tag!
And, none of this is your fault, hope you find some inner peace, and start to feel better soon.
Glad you found us
lotsa luv
Joan xx

 

[krs2]

I know a lot of what you feel. I dont have an eating disorder, but like a lot of young people (im a 20 yr old guy) im self conscious about the way I look. I went from losing a lot of weight and being a twig with no fat / no muscle (pre-treatment), to gaining weight, muscle, everything (steriods), and then now to just gaining weight, and not having any energy to work out (6mp). I can definitely look down at my abdomen and see atleast 7-10 lbs that werent there last summer. My doctor would tell me he'd rather see me fat and out of shape than skinny, but it's just hard thinking about the pants that were too big 6 months ago are now too small.

 

[Jennifer]

I've had many friends with eating disorders and the one thing that really helps is to talk about it via friends or MAINLY counseling. Even if you aren't giving into the disorder now, seeing a therapist on a regular basis helps keep you in control rather than turning to them when you're out of control. It's similar to drug addiction in a way where many seek treatment, get better, stop treatment and then relapse. Just because you aren't purging now doesn't mean that everything is better and that you're cured. You need to treat this as the illness it is and continue with treatment. Same with crohns, just cause you don't have symptoms doesn't mean its gone away. Both your physical and mental health are important so get the treatment you need for your crohns and continue with counseling for the eating disorder. Talk with your doctor about your concerns with the medication they want to put you on and maybe they can help ease your mind a little.

 

[Jer's Girl]

Welcome to the forum. You have already gotten some great advice here it looks like. This site is full of caring people who are willing to use their words to help in any way that they can.

I know just how you feel. I suffered from eating disorders for seven years, and even though it has been years since I have had any of those destructive behaviors, I still have to be careful where my head goes when i lose or gain weight.

I have also from time to time wondered if some of the damage that I did to my body all of those years ago helped to add to my Crohns symptoms but I haven't seen any evidence of that from any one else on this site so I have to believe that the one has nothing to do with the other. The main problem that I had when I had my disorders was how easy it was for me to continue my behaviors without anyone noticing because everyone knew that the Crohn's made me lose weight so no one suspected I was starving myself or anything else.

I think that I used my eating disorders as a way of finding control in an uncontrollable life. I couldn't control this disease or my home life for example, but I could control my weight.

Good luck to you and I hope that you find relief form both of your diseases soon. Personally I know that my life has improved 100 percent since I got well from the eating disorders.

 

[NatalieMT]

I was diagnosed with anorexia many years ago now, among other things. The Crohn's has been an issue for me in the fact that I feel like crap, eating in my head will make my symptoms worse so I'm actually more compelled not to. I do like to always be losing weight although the point comes when if I carry on I will die.

Having been on pred and with currently being on Entocort I haven't gained any weight at all, infact the opposite really. I wouldn't necessarily let the fear of weight gain put you off taking the medications you need. Especially after 15 years of suffering since being misdiagnosed.

I know you have said you've been to therapy in the past and that helped you, would it be something you'd consider trying again now when you need that extra support? I currently attend therapy and it's actually been a lot better than even I thought it might be, it's been a big help just being able to get all my feelings out. It's a slow process, I'm not going to cure 7 years of me behaving this way overnight, but I do know now atleast that there is hope for the future.

 

[dreamintwilight]

Thanks for posting, Natalie It's good to know there is someone who knows what eclaires is going through. I found your post to be very positive and supportive. We have awesome members on this forum!

 

[eclaires]

Hi, thanks so much for all your support, I know it's hard for all of us but am so glad to finally have found somewhere I can ask all those 'un-askable' questions to xxx

 

[Lisab]

Hi eclaires.
Just so you know that you're not alone, I've come across articles on the web talking about the connection between Crohns and eating disorders. I recommend that you search for them just so you don't feel alone in this.
I myself haven't had a diagnosed eating disorder, but I would say I've been a borderline case from time to time in the past. What's come up for me with Crohns , is that I tend to lose quite a bit of weight (which surprisingly, sometimes upsets me cause I feel my body has changed too severely). However, when I'm put on the steroids, I become famished--and am constantly hungery. I put on weight fast, and then I feel....hmmm...heavy.
But here's what I've learned,
A. By the time I need the steroids, I've lost weight and my body hasn't kept much in. Therefore,

B. - I really need to eat the vast amounts of food I do eat when I'm on the steroids. My body is really missing nutrition, and so it's really a good thing to get that food in. And,

C. in the end, when the flareup is over, and I'm off steroids, my body weight is back to normal.....I always lose weight, gain weight, but in the end I'm back to where I started. I hope this helps you in some small way.

 

[Mrjono]

Hi eclaires. I'm new to this forum and your post is one of the reasons why I became a member. I know exactly how you feel. I too have an eating disorder because of pressure on how to look. Being a 22 year old single male, there is a lot of pressure in society on how to present yourself. I still kind of do have an eating disorder but I am trying to control it for my own health's sake. At 22 year old my weight dropped too 7 and a half stone, this was after I had been diagnosed and discharged from hospital and obviously my specialist and dietician were worried and was going to resort to tube feeding me.

What really put things into perspective for me to overcome an eating disorder and put on a little weight whilst having crohns, etc was that I'd rather put on a couple of kilo's and have people say "Oh you have put on a little weight, but you look better for it." rather than "You look dreadful and having that tube up your nose to feed you isn't attractive".

Also remind yourself that your weight is going to be up and down. I once lost 6 pound over night by eating a burger. As long as you look healthy and your in no pain then that's all that matters. Hope this helps a little.

 

[Guest]

hi eclaires & welcome to the forum

yes - i know about this mental battle with eating/needing to eat/weight gain etc.. i went down to 5stone at my worse point many years ago, and although i know i looked like a walking skeleton, i have to admit there was a definite high to being so thin.. knowing that wherever i went, i was the thinnest person there. it kinda messed up my previously ok body image thing, and when i naturally put on weight through getting healthy, i did grieve for that other underweight me, and i know i have the tendency to think like an anorexic.

this feeling is still with me to this day - i worry far too much about my weight, but the good thing is i have learned to ignore those worries to a certain extent and appreciate being healthier instead.

like yourself, i used to do a lot of exercising, but lack of stamina due to Crohn's gradually made me decrease it until basically i was doing nothing.. now i have a wii fit, and i'm trying to do a little every day, and do more walking than i was. that - plus avoiding naughty foods - is getting me back to feeling better about my body.

i think it's all about putting things into perspective, and realising the priorities.. once you've had an eating disorder, it's so hard to change your view of food and weight back to 'normal', but as long as you recognise this and are prepared to put logic and your health before everything else, you'll be fine.

 

[Regular Joe]

Hi eclaires,

This is an interesting topic to me. Like someone else mentioned they didn't gain weight on steroids, prednisone. I don't have an eating disorder either, and when i was put on Lyrica for migraines, that is supposed to have the same side effect as pred - you gain weight. It didn't happen with me, in fact I lost weight. I've been on Entocort, and it hasn't increased my appetite or anything. I don't know how I'd react to pred though.

What is interesting to me is that "control" seems to be a factor in everyone here who has an eating disorder. I totally understand "control" problems although I don't have one with eating. But I do have "control" issues with alcoholism. Trying to control life and "manipulate" things to my liking was the main reason I drank alcoholically.

So let me throw out an idea for those with eating disorders that I learned in treating my drinking disorder. You only have to overcome your eating disorder for 24 hours, not the rest of your life. It also works with Crohn's disease. We call it "One Day at a Time". For me when I learned to contain my drinking disorder and everything associated with it, to the time frame of 24 hours (while I was awake/conscious), the need to "control" everything pretty much went away. Of course, joining a support group and attending those support group meetings regularly, has helped me to overcome the problem for the past 12 years.

(ps - I seem to have a spelling disorder too!)

 

[eclaires]

Thank you all so much it's more reassuring than you realise to know I'm not alone. I agree with the 'one day at a time' philosophy! Just need to start to use it now! Am just struggling with the head vs heart battle... When everyone says it's good I'm putting on weight coz I'm starting to feel and look better all I seem to want to do is challenge my recovery and go on that diet which for me will be ultimatly more destructive I know! Gonna go see my GP Tuesday, even if she can't help I need to warn someone in 'authority' where my heads going while I still can, before it gets to the secretive stage again. Thank you so much everyone... Wish me luck!

 

[fromthegut]

Hi.. thanks for sharing. I have an eating disorder ( medical term). I am considered morbidly obese. Food has been my issue since I was very young. Thanks to Regular Joe for sharing the One Day At A time saying. I have also heard "one meal at a time". My greatest battle has been with food. Well maybe I should say my "current" battle. It definately has to do with control and lots and lots of fear.
My disease has been intensely triggered by family and friend illnesses and death this past eyar. Lots of out of control things. Also I am certain many more people have eating disorders than care to admit. They jsut call it somethign else. It doesn't ehalp that so many sites suggest food as a way to ehalth for Crohns. Yet.. no medical professional I have met with confirm this. It is whatever works for you.
Take what you like and leave the rest.

 

[Betty Dural]

I have an eating disorder and UC. Read my thread; there is a long one that explains in detail, along with shorter ones, if you don't have time.

Let me know if you think we can help each other,
Betty