Overweight with Crohn's Disease?

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gus

Joined
Mar 8, 2011
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Hi all,
I was diagnosed in 1996 with Crohn's Disease. At my lowest weight I was 120lbs. I am 6ft and when looking back at photos I looked very unwell. Was on prednisone for many years my weight ballooned to 280lbs. Came off pred was working full time and walking up to 30 miles a week and hardly ate a thing still could not lose weight.

At the moment my meds are pred, Azathioprine, Sulfasazine,Adcal and cocodamol. I still weigh 250lbs and now because my arthritis and back problems are getting worse plus agoraphobia I do not get any exercise at all. Yes I know meds cause weight gain but I am only on 5mg of pred.

I get so annoyed when people comment "well you don't look unwell " or "are you sure you have crohns" "you must have a good appetite" GGRRRRRRRRR I just want to bash them.

I eat one meal a day and maybe a sandwich hardly a big appetite. I was just wondering if any of you were overweight with crohns and if people judge you in a different way. It really gets to me. I rarely leave the house anymore due to various issues.
 
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Hi welcome :)

I am sure there are people on here in your situation that can give you helpful words of comfort. I am not overweight I put back on some weight to be within my normal weight for my height 125 at 5' 6" but because I am not ridiculously skinny I did hear one person make a comment once. She told me that her friend who has crohns is only 100 lbs and that I look healthy. I looked at her and said, " I want to be healthy but you should think before you say something like that because I can mask my symptoms at times and looks can be deceiving. Just because I am not 100 lbs does not mean that I am well". She does not talk to me much after that but I do not care. Some people are just not knowledgeable when it comes to the world of crohns.
 
I am overweight but not quite that high and I dare anyone to make a comment!!! I also have been on pred on and off through the last 20 years. Age, and meds and not execising will cause excess weight. Best bet is to eat smaller meals more often during the day, better for crohns anyways. Welcome to the forum. :bigwave:
 
People will comment anyway. I am a skinny crohnie and have had the why don't you eat / do you have anorexia looks and comments. I think we all have to learn to 'forgive' these people their lack of understanding ( or ignorance depending on my mood!! :)) .
It's something I struggle with but am becoming more thick skinned- I am going to get a badge saying ' I didn't choose this, it chose me.I'll swap places with you if you like'
 
Hiya Gus
and welcome

Yeah I'm a fattie!
And ya know what? I don't care!
It means I'm absorbing my food and I have less diarrhea.
I was a walking talking zombie skeleton with dark eye circles and nearly bald about 16 months ago.
My weight will come off eventually (thanks Pred) there is a skinny gal under all that flab!
But in the meantime I'm eating well for the first time in years, being overweight is a small price to pay for feeling this good and in remission.
Oh, and what do I say to peeps who say I look well?
'I can lose this weight, but you'll always be ugly'
And that means inside and out.
Try not to let it get to you, concentrate on getting well
Good Luck
Joan xxx
 
Astra101 said:
Hiya Gus
and welcome

Yeah I'm a fattie!
And ya know what? I don't care!
It means I'm absorbing my food and I have less diarrhea.
I was a walking talking zombie skeleton with dark eye circles and nearly bald about 16 months ago.
My weight will come off eventually (thanks Pred) there is a skinny gal under all that flab!
But in the meantime I'm eating well for the first time in years, being overweight is a small price to pay for feeling this good and in remission.
Oh, and what do I say to peeps who say I look well?
'I can lose this weight, but you'll always be ugly'
And that means inside and out.Try not to let it get to you, concentrate on getting well
Good Luck
Joan xxx
Click to expand...



:rof: I have never had to use this line but...I have thought of it lol.
 
I have a variation of that line:

Yes, I am fat but I can lose the weight but you will always be stupid! :D
 
Ha ha ha, you guys have such a way with words. We should publish a 'guidebook of phrases' which we could refer to in all situations.
 
Thank you all for your kind words :hug:
Being oversensitive about my weight is a downfall but I am quite a sensitive person. I don't have much of an appetite and quite often have to force myself to eat. Then its straight in the loo. I cannot understand why I remain over weight when off the meds. The last comment I got which I quoted in my earlier post "you must have a good appetite" was from a nurse.

I will be receiving treatment in the near future concerning the agoraphobia. At the moment I feel trapped not only in the house but this useless failing body. My young daughter often asks "can we go somewhere today dad" breaks my heart that I cannot take her out.Feels like I am ruining her life. Sorry for winging just feel pretty down at the moment.
 
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Don't worry about saying how you feel- that's what this forum is for. We can say what we are feeling, often something we don't want to do much with ours family and friends (though they probably don't mind!)
You aren't ruining your daughters life, you are still there for her and love her which is what matters more than anything.
Take one day at a time, don't fret too much about what ifs. I hope your treatment for both crohns and your agarophobia start working for you.
 
Aw Gus
In all seriousness, joking apart, how about you talk this thro with your GP?
I hope you get some relief with your phobia and some help if you're feeling depressed.
You know you can talk to us, don't suffer in silence, yeah?
Take care
xxx
 
Gus, You've captured my heart!!! Please vent here, but please, please discuss this with your doc. I've heard: "Wow, you'd think you'd be thin, you're in the b'room so much..." so many times that I want to...
Anyway, vent here, but find some professional help. I battled w/depression for years and only now that my girls are older do they tell me how sad they were when I was always in my room and never wanted to go anywhere. Now, I go everywhere, (always have a few spare undies/slacks with me) and know every bathroom on the East coast. Hang in there!!! Keep us posted! We're here for you Gus!
 
Before i went on prednisone i was 45kgs, 5ft 2 and when i went on it i went up to 65kgs and after nine months i came off it and its nearly been a year and i now weigh 55kgs, cant seem to leoose anymore weight
 
My weight went up a lot this year, and I have gotten a lot of mean comments. Frankly, I am surprised at peoples gall. I have been asked if I was pregnant again and again and it is very hurtful. My Dr even told me to lose 10 pounds, and I have gained weight since then! I weigh a little over 130 now at 5' 4", so far from over weight, but still, people have made it their business to tell me I look big. Honestly, I think I look quite good, but people can get to you even if you know they are wrong.

All I can say is that I know how you feel to some extent. It can be very hurtful when people make comments about appearance. I have decided that my husband thinks I look beautiful, and I feel a lot healthier than when I was skinny, so it is really no one else's business.

I really hope you find out why you are still gaining if you are eating so little. Perhaps their is something other than the Crohns going on?

I have heard so many Crohnies on her say that people have told them that they don't look like they have Crohns because they are not stick skinny. That is just ignorance. Crohns is different for each one of us. Just know that you are not alone.
 
It is so much more important to be healthy than to be "normal" weight. I think it's hard for non-sick people to realize/relate to this, but I see it a lot in the "sick" population as well, which is so sad. Just last night I had someone tell me the "silver lining" to me being so sick I was vomiting every time I ate was that I had lost weight. -_- Seriously, I would way rather be fat and have a healthy gut!

I am a big proponent of the "health at every size" movement. People who eat right and exercise but are overweight are healthier than people at "normal" weights who don't. I think it is really unfortunate that our culture equates thinness with health because that's not reality, and it causes a lot of people much undue mental distress and nobody needs more than they already have. We need to promote health and healthy living rather than just weight loss and thinness.

Ok I went off on quite a tangent there. Anyway welcome to the forum Gus. I hope you find some support here and don't feel so alone, because you're not.
 
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I'm about 6' and 225 pounds. I just cannot loose any weight, calorie deficets, low carb, etc. Just cannot loose weight. But I can run faster than I have ever been able to and have my mile time down to about 7 minutes, so confusing. Most people don't ask about why I'm so big and have Crohn's, the "death-stare" can be scary I guess. lol
 
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My 14 yr son has had diarrhea problems for over 2 years. He was always a very skinny kid until he got sick. He is growing like a weed and is chubby now. He does not over eat, but he is inactive. Most people cannot believe he is as sick as he is. I know the weight bothers him too.
 
@diesanduhr: I completely agree with you.

All: I get the "you look great" quite often too and at 5'2 and 106 lbs it makes me quite mad sometimes. Yes, admittedly, when dressed it doesn't look so bad but oh boy, I sometimes really hate Crohn's "side effect" of losing so much weight quickly at my age (50) and what is reflected in the mirror.
I, too, would rather be somewhat overweight and have healthy functioning guts and be able to eat everything without having to think about consequences.
On the other hand, people who make these comments don't see us at home, running frantically to the loo and be doubled over in pain, hardly able to function.

What happens to me most of the time is that newbies in the company always tell me that they are on a diet to lose weight and then I reply that I have Crohn's and that is why I am so thin and that I wish I wouldn't have this effin disease and could be on a weight loss diet too.
 
<--- fatty mcfatfat. When I first had symptoms ( terrible joint pain) I put on 30 lbs in about a month with no changes in diet or exercise. I couldnt get a doc to believe me. Since I've been on pred I've probably gained another 30. Im short and I hate it. I have D almost all the time and I can't begin to understand it.

Keep in mind that my dx keeps floating between cd/some type of connective tissue disease. Maybe I have both. Meh.
 
I gained 20lbs on prednisone, but I've lost 15... I had lost 5 lbs in hospital before going on Prednisone so I'm pretty much normal weight right now. I'd love to lose 10 or 15 though!!

To answer your question: I am at the top of a healthy BMI right now, so No, I'm not overweight.
 
I have struggled with my weight off an on for most of my adult life. When I flare-up with the CD, I can lose a lot of weight. I also put on weight easily. I would say that I'm built like, "Mother Earth," put the weight on like a typical woman. My first general doctor refused to believe that I had Crohn's because I was volumptuous. His words, not mine. The second doctor thought I was overweight and wasn't very nice about it. I didn't fit the emaciated image that he had in his mind. My third doctor says, that I'm just a little chubby, but that I need to take into account that I'm full-figured to begin with. Who or what do I believe?
 
Yup! Fatso here too. With all the package of comments from people. I have even had comments from OTHER crohnies asking me if I Had a confirmed diagnosis of crohns. If I had a Euro for everytime I hear "How can you have Crohns? You are not thin" I would be at least a millionaire now. I am 95kg and 1m-70cm tall. I lost 18 kilos when I was first diagnosed and got them all back within 18 months. I dont like being overweight nd I am afraid that if I need another surgery I may not make it. Still Its easier to put on weight (of course it is I cannot tolerate fiber at all) Than lose it.

Meh I am not in a good mood today
 
So far I have been told that if I am on pred I will not be able to lose weight. I have been told this by: 2 GIs, my surgeon, my GP and the dietician.

Pred has caused the face fattening, I've not actually gained any weight, but because of the pred I am unable to lose it. My maintaining dose is 10mg. Before my DX I was at around 300lbs and about 5'9. I've only lost weight during flares, I'm currently about 250. I've been told several times that I won't loose any weight until I'm off of the pred.
 
I am also overweight have been off of prednisone for 4 years not but I take asacol and azothioprine for my crohns. However i used to be skinny but am now 60 pounds overweight and i really don't eat alot. And I too have had people tell me they don't think the dr. knows what he is talking about when he tells me I have crohns.
 
Although having Crohn's for 20+ years and it going untreated most of that time, I have never been much underweight. When I have very bad flares (the go to the E.R. type) I have lost a lot weight in short periods of time. When the flares stop I gain the weight back. But somehow I never lost my pot gut. I found out why when I was diagnosed last year and CT scans showed the true shape of my guts. After surgery, the pot gut was gone.

Some people why I am not a walking skeleton. Not all crohnies have that issue. Prednisone also causes weight gain. I think it is absolutely possible to have Crohn's and be overweight.
 
I'm 6 foot and used to be 225 then I got Chrons and dropped 60 pounds and stayed like that for almost 9 years last year I hit 127#'s and now I'm putting it back almost 180 again. I can't believe the roller coaster and now i'm actually watching I don't eat to much because I think I can really pack on the pounds. Chrons reminds me of that movie thinner where the guy gets the gypsie curse. Anyone ever see it?
 
I have gained quite a bit of weight in the year and a half that I've had Crohn's and also heard the rude comments. I know that agoraphobia is very hard and it's really brave of you to tackle it. Remember to go easy on yourself and celebrate the small steps. I think that dealing with a chronic disease can add to our overall anxiety level. I used to love public speaking, but I get nervous now when I have to make a speech before a large crowd. I have two speeches next month and I'm dreading it. Nothing has changed about me except this darn disease, but it just seems to make me more vulnerable in so many ways.
 
I've gained 30 pounds in two years from almost constant prednisone use. I've been on Weight Watchers and lost 12, but I'm having a flare so prednisone here I come!

I've had plenty of ignorant people make comments about it. I believe it has nothing to do with whether I gain or lose weight, I think it's just that they are rude. For some reason people get uncomfortable with disease or whatever and say the first thing that pops into their head.
 
I was 6'2 260 pounds in June of 2009 when I became sick. In January of this year I was at my lowest and sickest at 155 pounds. I've put on close to 8 pounds since. Crohn's and the Anemia that it caused has kicked my butt. It's not a diet I would wish on my worse enemy.

I was an "XXL" guy. Now I wear "L". I dream of the day I reach 200 pounds again.
 
I can so relate!! I am so tired of people saying "are you sure you have Crohn's" or "aren't Crohn's people skinny" Too bad ignorance is bliss....lol
I too am frustrated with being overweight and not eating, and having diarrhea all the time...I do not eat much, even when not flared. I have been eating mush for almost three months and am still the same weight. I was on IV pred for a week and oral for days....will I ever be skinny? Probably not. Will people always assume I am not sick? Probably!!:ylol:
 
Good luck with everything Gus.

There is a world out there mate, do your best thats all you can do. One thing about your weight it is really not that bad, i am 6' 4" and 155kg's and i feel every ounce.

When my body allows me to exercise properly then i will manage to get it off. Not by going mad but by gradual training and exercise, and as good a diet as i can tolerate.

Chin up mate

Bruscar
 
I've learned to brush off the ignorance and blatant stupidity. I would have loved to see the reaction if anyone, including his doctor/surgeon, had told my grandfather that he couldn't have Crohn's because he was overweight. He was a tall, big, burly fisherman. He was actually bigger than all of his sons, height and weight. He had CD VERY bad. His intestines had the ulcerations all over. My father claims that he must have thrown-up every other day, or at least several times a week, because he couldn't handle many foods. He worked hard and loved food, so he didn't consider food elimination to be an option. I guess back in the 1950s and 60s in backwoods Alaska, not much was known about Crohn's anyway. He ended up needing a total colostomy in the late 1970s. His surgeon was surprised that he lived because he was old, very sick, and so much of his intestine was diseased. He pulled through the procedure, and his doctor claims that it was because he had been overweight to begin with. If he didn't have the extra weight his doctor said, he might not have made it. I know the operations and colostomy bags were much different in the 1970s and 80s. He lost weight after his surgery, but he didn't become emaciated looking. I guess the point I'm trying to make is, he was big, burly, and healthy looking, even when he was at the height of being quite sick. It is so ignorant to assume that people of all sizes cannot be affected by inflammatory bowel disease.
 
I'm a bit tubby atm! My weight yo-yos with crohn's. Just before I was diagnosed I'd lost a LOT of weight cos there was a time when everything triggered it and so I lived off water and soup for months. Then I was diagnosed in sept, started pentasa and was able to eat again.... I was so pleased I over compensated and over ate and piled the weight on and went from UK size 8 to size 12..... I'm now flaring again (worse than ever but early days yet, only day 6) and I can't eat and already I can see the weight just falling off me.....

At least I'll fit into my ball gown for the graduation ball in June, although I prob wont be able to eat the 3 course meal! I think overall I'd rather be a bit tubby and feel well then be thin but know it's cos I'm so ill!
 
I am 5'8" and I weigh A LOT! I have always been a bit overweight but since I was diagnosed and was started on the pred I put on about 55 pounds and I havent been able to lose it since. I have tried so many different things and even weight watchers but I just cannot get this weight off. I do tend to lose some when I start to be ill because I cant eat at all then, but as soon as I get back on track I put it straight back on.

At the moment I'm of the opinion that I couldnt give a stuff what people think, but every now and again I hate the way I look and it really gets me down. I dont eat excessively but I could exercise more, but I just cannot get rid of this wobbliness!!
 
Have you thought about having your thyroid tested? My mum has Ulcerative colitis and found out a few years ago that she also has an under active thyroid. If it's under active your metabolism is slowed down and you'd keep weight on even if you weren't eating much. Bit of a shot in the dark but it's easy to be tested :)
xxx
 
Hey! I am overweight, I'm now about 100kg plus or minus a few kg. I know exactly how you feel. I have NEVER been skinny (well skinniest was in 2004 at 76kg). Ive had two very rude GIs who have said degrading things to me because of my weight (one even told me he can't help me with crohns unless I lose weight and get a neatly BMI?! Wtf?) Honestly, in my view it's better being overweight, as there's a lot of fluctuation room! I dont think anyone i knew actuAlly knew HOW serious my crohns was until i told them i have to have my large bowel and part of my small bowel removed, and have a permanent ostomy bag! if I were you I would try not to let the stupid things people say get to you. It's hard but try and think of yourself better and love yourself. Those people just don't understand and probably won't unless they live with you or get sick themselves. Don't let being overweight make you feel any less of a person. :) be happy!

X
 
I totally agree! You look fantastic, Charlotte! Those rotten doctors! My doctor was quick to point out my weight was well. I can relate.
 
I understand... Completely!

gus said:
Thank you all for your kind words :hug:
Being oversensitive about my weight is a downfall but I am quite a sensitive person. I don't have much of an appetite and quite often have to force myself to eat. Then its straight in the loo. I cannot understand why I remain over weight when off the meds. The last comment I got which I quoted in my earlier post "you must have a good appetite" was from a nurse.

I will be receiving treatment in the near future concerning the agoraphobia. At the moment I feel trapped not only in the house but this useless failing body. My young daughter often asks "can we go somewhere today dad" breaks my heart that I cannot take her out.Feels like I am ruining her life. Sorry for winging just feel pretty down at the moment.
Click to expand...

Hey! First off, don't feel down about when your daughter ask to go somewhere, she understands or will understand more than you think. My mom had 5 strokes, bacterial meningitis, was blind and had pneumonia when I was a young girl and I didn't understand/like it at first when she couldn't do things but I love her and value her even more now! So please don't feel bad. Daughters don't want their parents to feel bad... EVER. We really love them. To this day, I value and love my mother just because through all she has been through she still loves me and does what she can. So please don't ever feel down when you are doing your best! WE EITHER ALREADY UNDERSTAND OR WE WILL UNDERSTAND WHEN WE ARE OLDER!

Also, I understand what you mean about being overweight. I have always been bigger but in the last 5 years I have picked up so many pounds because I was always tired. My doctor didn't even suspect Crohn's because I was gaining weight. So now, I am diagnosed and been put on Prednisone which made me gain MORE weight. So yeah, I have been in a piss poor mood around people who can control their weight. I guess it is something that I just need to get over.
 
I am a fat Crohnie and I HATE it! I was skinny all my life until the stupid prednisone. Then to make matters worse, I went on Depo Provera after I had my daughter and it made me gain 50 pounds in less than 3 months once I quite breast feeding. Yes, that is right - 50 pounds. And I weighed less when I left the hospital than when I got pregnant with her. Between that and the Pred over the years, my metabolism has changed and now I even have to cope with Diabetes. It isn't fair, but I guess that is the price I pay for still being here. My Crohn's is in my large intestine, so I don't have absorption issues. I get all the comments like why aren't you skinny?, etc., too.

Before I was diagnosed, I was the skinniest person in my family - literally. All my life I ate tons of food and didn't gain much weight. Until I went on prednisone. My sister swears I must have had Crohn's much of my life (I was treated for ulcers at at 7) and that is the reason I was so skinny. I wish I could lose weight, but have issues with lots of fibers, so it is hard to eat "healthy". It can be a no win situation. But, I am sitll alive, and I remind myself of that every once in a while...

I know how you feel and sympathize with you - all of you that are overweight and sick, too.
 

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