Body Image & Crohn's - How do you cope?

[nogutsnoglory]

I wanted to see how other people felt about their own body image in the face of a disease that can drastically alter our bodies at any given time.

Whether its being too skinny and malnourished or gaining weight, moon face and acne from drugs like Prednisone. Or having a stoma & bag that becomes an extension to your body.

I am mostly okay with the way I look when I'm at a healthy weight, although like most people there are things I'd like to look different but we all can't be a 10. I get sad when I drop so much weight that my face is so skinny and pale or jaundice or my arms look like chicken bones.

This takes a toll on me mentally, I don't want to go out and be seen since I feel I look so diseased and of course I'm afraid to go on dates wondering if they think I will just collapse in front of them.

I feel like society focuses so heavily on what we look like and people are so judgmental. Also I feel that as straight men often objectify women, a lot of that occurs among gay men who are seeking perfect bodies. Maybe all men are pigs? I know I'm not one to judge based on appearance alone.

Right now I'm just trying to stuff my face with fattening foods even though I lack an appetite. I just want to have my face full out a bit.

How do you all manage the ups and downs of your looks with this illness?

 

[UnXmas]

I think I gave up caring about my looks a long time ago. I don't like being so thin, but mainly because everyone assumes I'm anorexic, which to many is simplified into being either just vain, or mentally unstable.

I feel pretty gross at times. It's hard not to when you've been having diarrhoea for hours, and may or may not have made it to the bathroom in time. I'm actually beginning to come round to the idea of an ostomy though, I think it will be an improvement on the loss of bowel control.

The facial hair growth from prednisone did not really do much for my self image either.

Sometimes I remind myself how gorgeous babies are - even babies in dirty nappies. Sounds a bit weird I know, but it does kind of say something, that people don't find babies disgusting. It's the values we attach to health and attractiveness that causes us to feel disgusted with ourselves.

The best thing I can do when I gross myself out is go and take a long shower, and pretend I can cleanse everything away.

But mostly I just want to feel physically comfortable and healthy. Compared to feeling so uncomfortable and sick all the time, looking too thin seems a minor thing for me to worry about.

nogutsnoglory: I'm sorry you're feeling so down about things now. I don't know much about gay men, but I think there must be some out there who will care about more than physical appearance, just as there are some straight men (and women). I get really confused about it too - if I love someone, I honestly don't care what they look like. It's not only the conventionally attractive who get loved. But then I wonder why, if that's true, why do I feel I'm disgusting sometimes?

 

[Cat-a-Tonic]

(I know this is in the LGBT subforum, so I hope it's okay if a straight ally like me answers the question too.)

I've always had a hard time with how I look, even before IBD came along. I think part of it is that I'm so introverted and socially awkward (to the point where I suspect I may have Asperger's) that sometimes I don't even really feel like I'm human. I look at other people and I cannot relate to them, I feel that I'm nothing like them. Sometimes it's odd when I look in the mirror and see that I'm human too, at least on the outside. I guess the outside doesn't fit the inside is the best way I can say it. I wouldn't be surprised at all to look in the mirror and see a green martian - somehow that would fit so much better.

And when IBD came along, that disconnect grew. I would feel like death on the inside, but when I looked in the mirror I saw a person who was pale and thin, but otherwise looked pretty normal. During flares, I'd get dressed for work in the morning and then I'd always ask my husband if I pass for human. He always said yes of course. Which I never believed - I just could not get past how feeling a certain way inside could not manifest itself visibly on the outside. Sometimes I felt like a total fraud. People would ask how I was and I'd smile and say fine, and they'd believe it. I wanted to grab them and ask how could they believe such a blatant lie? And stuff like that only further alienated me from the rest of the human race...

Now that I'm in remission, I think I'm feeling the most human I ever have. I work out a lot which makes me feel great. I'm healing my insides, which is my #1 goal when I work out, but I'm getting toned and looking better on the outside too. Which is flabbergasting in a whole new way when I look in the mirror - I actually kind of look like how I feel, which is pretty new for me. I'm feeling and looking stronger and healthier. I'm in a pretty good place, and I hope to stay here for awhile. I feel less disconnected than I ever have - I actually am feeling sort of healthy, and human, and for once the mirror reflects that.

 

[Grant]

This is an interesting thread. For me its all about my disfigured belly. I'm a 34" waist, or @ least was. But now I can get into 32" waist jeans. Now I'm not a 32, but because my belly is so bulgy 32" jeans fit just below my waist. In the past I've been terribly skinny, painful to sit in a bath because the bones in my bottom were protruding so much. Arms like pipe cleaners etc. And sometimes a complexion like snow, so pale with dark bags under my eyes. But unbelievably even allowing for a fistula & possibly another stricture my weight is a steady 11 3/4 stone.
I'm not quite @ the point of having two sets of clothes for weight loss & weight gain however. :ylol:
Keep well everyone
Grant

 

[nogutsnoglory]

Everyone is more than welcome to pitch in gay or straight, we don't discriminate lol and plus we need our straight ally friends!

I can totally relate to not feeling human, I feel weak and sick like a walking dead man most of the time. People can see I'm skinny and pale but they don't know I feel like a lifeless vegetable ready to drop.

I also keep needing to change clothes, I have so many pants nothing ever fits usually they are too loose and when I gain a little weight the tighter ones don't fit. I try to buy the pants with an elastic band as they tend to give a little so they can be tight or push a little more if you gain weight.

Do any of you look for reassurance from people about your looks? I don't ask outright but try to get hints to see if people think I look good, ugly or sick. I guess I'm very insecure with the way I look mostly. Once in a while I look really good but the weird thing is the next day I can look like a dump truck hit me. I am also really sensitive about my age because of all the stress and fatigue people think I look older than I am and it really depresses me.

 

[Samboi]

Great thread NGNG.
In the past 2 years I have gone from Pred fatty to gaunt to now - regular. I have just put on 4 kilos - so have a chubby tummy again - but that will disappear quickly after my reversal in August.

The weight gain and drop has left me with weird wobbly neck skin - which has aged me terribly - it looks awful.

I also don't like the way my stoma scaffolding sticks out so much. It really protrudes. I am quiet self concious about this - and usually try and hide it under a sweater or a hoody. Hoodies are actually great for hiding the stoma bluge - but sometimes a hoody is too informal. I don;t tuck my shirts in at the moment - and this makes me feel a bit scruffy - which I don't like.

It is only recently that I have started getting my confidence back. I used to have quite a swagger in my step. The ileostomy wiped that smirk from my face very quickly.
I am in remission now - so I feel physically great and quite strong mentally. I am anxious about the reversal though as I fret about going backwards physically and emotionally. I am doing everything I can to prepare physically for the reversal - the biggest help has been yoga. It has actually been transformative.

I am excited about resuming dating properly once the reversal has happened. I'm not sure if you recall - but I was dating somebody - but it didn't work out. Now I am making friends with potential new partners - but don't plan on doing anything around intimacy until after the reversal.
I think lesbians are a lot more forgiving about appearance etc. Although having said that - my gay male friends - I'm not sure any of them would care about things like stomas etc. They just want to meet a nice guy.
And of course - there was a nurse who was interested in me who though having a stoma was dead sexy! She said she loved medical equipment! Now she is a very dear friend - but I know at the time - it really boosted my confidence.
There's a lid for every pot!
I'll be back in the hunt for mine in September or October I reckon!
I also reckon the scar on my tummy is going to be a drawcard for some ladies! Who would have though that! lol

Oh yes - and the clothes thing!
One friend told me I have to buy new jeans as all my jeans just hang off me these days. But I like 'em baggy!

Now I'm just rambling ........ lol

 

[zilla7777]

I figure when I was little I was always quite overweight, and was picked on it a lot. I dropped over 20kg before I was diagnosed with Crohn's which was over a third of my body weight, then was picked on for being scrawny! Society doesn't know what it wants, ahah. I can't even fit into my clothes from when I was 12 because they are too big!

It's quite strange and gives you a lot of insight with a disease like this, where you can experience both ends of the spectrum.

As samboi said, there is a lid for every pot! Scars tell a story, and your ability to be happy whilst being mentally and physically crushed by something like this makes it all the more admirable to the few people who know what you're dealing with.

 

[kiltubrid]

When I was really sick pre-diagnosis, I weighed 83 pounds. I was too malnourished for the doctors to even consider surgery. After I recovered and put on some weight, at a doctor's appointment, my doctor said, "Nice fat belly!" I can't tell you how important it was for me to hear him say that. I've had that nice fat belly ever since and am quite proud of it. Today when I see someone who is really thin, I feel such empathy because I assume they are as sick as I was.

 

[Lenatilde]

I have always had weight issues - usually too much... I have lost an extraordinary amount of weight over the last few weeks whilst I await diagnosis. I tried to high five my GP when I realized how much (I'm still overweight, mind) and he wasn't up for it.

I've had people tell me how great I'm looking - "you've lost so much weight!" - but I feel like absolute rubbish with a swirly darkness in my whole abdomen.

I also had to cut all my hair off because it was falling out and blocking up the drains - not to mention making me look like a baldy. My husband did a great job, but I'm a bit scared about going back to work. I don't want them to feel sorry for me.

Hmm... I shall stop moaning now!
Happiness to all.
xLT

 

[purdueCrohns]

I tell myself that if someone is going to look down on me because of my Crohn's body, they aren't worth my time anyways. To heck with what other people think.

 

[UnXmas]

I also keep needing to change clothes, I have so many pants nothing ever fits usually they are too loose and when I gain a little weight the tighter ones don't fit. I try to buy the pants with an elastic band as they tend to give a little so they can be tight or push a little more if you gain weight.

I have two "magic" belts. The magic belts are elasticated and really do fit any size. If I lose weight I don't have to go and buy smaller sized clothes because I can wear the belt with my larger clothes and it keeps my trousers up. And then when my stomach gets bloated, the belt just stretches to accommodate and keeps me comfortable. I got them from New Look, but quite a few years ago, I'm not sure how easy it would be to find more.

I feel like absolute rubbish with a swirly darkness in my whole abdomen.

That's such a great phrase! It somehow captures the way my abdomen feels too.

 

[Cat-a-Tonic]

I second the belt idea - I invested in a variety of cute belts when I was really ill and losing weight, because it was cheaper and easier to buy belts than to buy new pants. I didn't want a whole 2nd wardrobe either but it's no problem to have some belts. Mine aren't elastic but they still work well - for bad bloat days, I just make the belt slightly looser.

Also, if you feel like you can pull off a slightly hipster/retro/geeky look, suspenders work well too. My husband works in a costume shop where they sell a lot of steampunk type stuff, and he's gotten into the habit of wearing suspenders to work because they're cool for his line of work but not overly geeky. My hubby is *not* into fashion at all (I bought him 2 pairs of athletic shorts for when he goes to the gym, one pair black and one gray - but he won't wear the gray ones because apparently gray is too flashy ). So for someone like my hubby to wear suspenders, that makes me think they're becoming a mainstream-acceptable accessory.

 

[nogutsnoglory]

Where can you buy the magic belt retail or is it only available online? I found the main website but don't see anything about elasticity and only about its magnetic therapy for pain management. Maybe I'm not finding the same magic belt you are talking about?

I definitely think I can benefit from an elastic belt because my weight keeps fluctuating. I also recommend some of the Levi's 511 jeans because a few of them are elastic making it perfect for us skinny people who keep dropping and then gaining a little.

 

[kel]

After I was diagnosed I was extremely skinny, and I thought I was stuck that way for life. A year later, I had my first surgery and changed my attitude. I started lifting weights at the gym, gained about 80lbs, and I've never looked back. I had never been in a gym before that.

 

[zilla7777]

That's awesome Kel! I agree, the gym is amazing. I still look got called a twig the other day, but I don't care because I know I've gained 15 pounds from the help of Modulen and the Gym! Ahah. I'll get there eventually.

Having a flare can be very demoralising though, there are times when you won't even be able to eat enough food to sustain weight, let alone gain it.

Congratulations though! :dance:

 

[plaidknitter]

I'm at a decent weight now but have been underweight and it is not a good feeling or look! I can't stand the feel of belts or pressure on my stomach when I'm bloated (which is often!), so I tend to wear things extremely low rise and that are soft and stretchy or elastic waist or draw string. I think women have it a bit easier on that front since there are more options for skirts and leggings that are elastic waist. I've been trying not to wear yoga pants out of the house as much, but those are comfortable and fit despite weight fluctuations.

When I'm flaring I just feel too gross to even think about people thinking if I'm attractive or not.

I've recently started to do some low impact exercise, and I was surprised at what a big difference it made. I was really out of shape even though I'm thin. It has been nice to not look and feel quite so weak!

 

[IJP]

I would love to say it doesn't bother me and that I am old enough not to worry, but ... being tall and very thin does make me self conscious. The worst of course is the inevitable "you are so lucky ..." statements.

twitter:- _IJP_

 

[aschei]

I've been skinny since I was a kid, so the prospect of gaining weight and getting better is actually kind of scary for me. Sad that I think that weight gain=bad.
My partner is excited for me to eventually be something substantial to hug, though.

 

[nogutsnoglory]

This topic totally came up for me today and right now I feel pretty awful. I went to the supermarket and right now even a task like that is a bit daunting. I need to prep myself by wearing a diaper, drinking Gatorade to ensure hydration and wearing bundled clothing since I'm freezing all the time from my chills even though its a hot summer day.

I didn't think going to the supermarket would make my self esteem plummet and make me self conscious about the way I look. I was very weak which is not unusual for me and coupled with my whole body being in pain I looked a bit like a hunchback walking next to my mom. When I pushed the cart I would lean over on it for support. I am very pale and skinny right now. I felt like people my age in their 20's were looking at me weirdly. I think 3 workers were even talking about me. Maybe I'm being paranoid? I really think I was getting some looks and maybe people were thinking what's wrong with that guy.

I feel pretty sad right now. I really had such awesome plans for the summer but instead I'm spending them in hospitals and doctors offices or on my couch. I'm insecure about my looks and now I'm thinking to myself I must look so sick and weak that I have become a spectacle.

Part of me doesn't give a rats ass, I don't know these people and I am sick so I can't hide the truth. But the other part is winning and it just makes me depressed that I can't look, feel and be healthy. I'm a kind person but I feel bitter and I feel disillusioned. Thanks for letting me rant.

 

[xxjemmamxx]

I'm not really sure what else to add...I know it sucks and there's not really a way to get around it as people are judgemental and nosy by nature. I'm really sorry that you're not very well right now I hope you feel better for ranting at least! It's a topic that frustrates me too.

X

 

[nogutsnoglory]

It's true people are judgmental but by their judgement it forces you to judge yourself and question if they are right. It just sucks all the people my age look so happy and healthy and I can barely make a trip to the grocery store. The whole thing just sucks on so many levels.

 

[DJW]

Great topic. Wish I could have read it back in my teen years. Unfortunately nothing has change for me in this area.

 

[UnXmas]

This topic totally came up for me today and right now I feel pretty awful. I went to the supermarket and right now even a task like that is a bit daunting. I need to prep myself by wearing a diaper, drinking Gatorade to ensure hydration and wearing bundled clothing since I'm freezing all the time from my chills even though its a hot summer day.

I didn't think going to the supermarket would make my self esteem plummet and make me self conscious about the way I look. I was very weak which is not unusual for me and coupled with my whole body being in pain I looked a bit like a hunchback walking next to my mom. When I pushed the cart I would lean over on it for support. I am very pale and skinny right now. I felt like people my age in their 20's were looking at me weirdly. I think 3 workers were even talking about me. Maybe I'm being paranoid? I really think I was getting some looks and maybe people were thinking what's wrong with that guy.

I feel pretty sad right now. I really had such awesome plans for the summer but instead I'm spending them in hospitals and doctors offices or on my couch. I'm insecure about my looks and now I'm thinking to myself I must look so sick and weak that I have become a spectacle.

Part of me doesn't give a rats ass, I don't know these people and I am sick so I can't hide the truth. But the other part is winning and it just makes me depressed that I can't look, feel and be healthy. I'm a kind person but I feel bitter and I feel disillusioned. Thanks for letting me rant.

I know that feeling of being a "spectacle". The other day I was paranoid that people would think I have cancer, because not only am I skeletal, but I was wearing a head scarf to keep the sun off. I'm not sure exactly why that bothered me. It bothers me that people think I'm anorexic because (whether accurately or not) they often equate that with craziness and vanity, but I think the sudden worry that I looked like I had cancer was more to do with all the accusations I've had from doctors over the years that I'm faking or exaggerating sickness to get sympathy. So I understand the frustration of wanting to just look healthy and normal .

The ironic thing that struck me reading your post is that I've read a lot online of the difficulties have from suffering from "invisible" illnesses. I think I've even seen some of that on this forum. People hate that they look healthy because it means no one believes how sick they feel.

I guess we just can't win? Or maybe it's that "the grass is always greener".

 

[SolisSpirit]

My biggest problem is my face thinning. I see a little in my hands too, but my face is really noticable. I struggle with it too because I don't hear a lot of other people say they have that problem. I would rather lose weight in my legs or somoething else than the one thing everyone looks at...

 

[nogutsnoglory]

I have a very thin face now too and that's the most noticeable part of the body. It is a clear sign that we are sick and its upsetting to not only have to look at it ourselves but also present to the world that way. We can't really do anything except try to treat the illness and get more calories in to bulk up our bodies.