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06-10-2013, 10:30 AM   #1
723crossroads
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Chubbie with Crohn's or Colitis??? Vent here.

I am sick and tired of people looking at you like you are lying when you tell them you have an IBD because you are not pencil thin like some. It doesn't mean we don't have IBD!!! I know a friend that has only 6 inches of intestine left and she weighs at least 175 lbs. She said through her worst times, she still never loses weight, which is good, right? Better than being sick from being too thin! Please share your thoughts and stories on this subject!!! Thanks!
06-10-2013, 01:21 PM   #2
mish2575
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I was up to 160 on my 5'2" frame.

With diet i've gotten back down to 135. . . Now if i can just start exercising more regularly. I'm lucky in that i'm, basically, in remission and have the energy to do so.
06-10-2013, 09:41 PM   #3
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I'm much heavier now than I ever had been before diagnosis.
I always seem to be gaining weight even when trying to lose it lol shouldn't complain I lost a huge amount of weight in the beginning and hated very second of sitting on my bony behind.
06-10-2013, 10:10 PM   #4
723crossroads
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Not to mention the steroids they put us on. I gained from that and the drugs for essential tremor and fibro med too. I give up!
06-11-2013, 02:24 AM   #5
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Great post. I have always been fat during my 20+ years of living with Crohns....was up to 300 lbs at one time...I have had the looks and judgment not only from peers but a GI doc who directly stated to me that I could not be flaring or have active disease because of my of my weight.
He was new to me.... I moved....we are not working together any longer....if he read my records he would have seen that at my worst I was up in the high 200's. while it is most common to be thin....it is not a diagnostic factor. Some of my weight gain has been from medication, some from quitting smoking and the rest is me and my challenges around food. I don't drink, smoke, do drugs...great will power for those but food has been my challenge. I use it for joy and sadness .... That's a whole other topic....lol.
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Undiagnosed for 20 years; diagnosed with IBS
Crohn's Disease diagnosed in 2007
Ileocecal resection surgery 2008.
Currently in remission
Recently diagnosed with moderate to severe cognitive
Impairment and atrophy in Hippocampus and both Parietal lobes in brain

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Cymbalta
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Protonix
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OxyContin
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Medical marijuana



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06-11-2013, 03:47 AM   #6
Droopy Drawers
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My weight fluctuates like a yoyo

It's no unusual for me to drop 60 pounds or more only to have it come right back

My middle looks like it needs to be ironed

I'm still not properly diagnosed & hoping to see Gastro #4
06-11-2013, 11:45 AM   #7
LindaS
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My weight has gone up and down. I was overweight when I started getting sick in my late teens, and got down to being underweight before I got it under control. Then it goes up and down. I have a hard time losing weight (unless I'm sick) because eating fruits and veggies make me sick even if I'm in remission. The worst obstruction came about 5 months after a "clean" colonoscopy. I had been trying to lose 20 pounds and was eating "healthy". I ended up in the hospital with a very painful obstruction that came close to requiring surgery before it resolved and flared for months after that. So I don't eat "healthy" any more.

Now I just don't get too worried about my weight, as when I get sick, it falls off, and when I am well it just jumps right back on.
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06-11-2013, 11:58 AM   #8
mish2575
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My weight has gone up and down. I was overweight when I started getting sick in my late teens, and got down to being underweight before I got it under control. Then it goes up and down. I have a hard time losing weight (unless I'm sick) because eating fruits and veggies make me sick even if I'm in remission. The worst obstruction came about 5 months after a "clean" colonoscopy. I had been trying to lose 20 pounds and was eating "healthy". I ended up in the hospital with a very painful obstruction that came close to requiring surgery before it resolved and flared for months after that. So I don't eat "healthy" any more.

Now I just don't get too worried about my weight, as when I get sick, it falls off, and when I am well it just jumps right back on.
I am not a big fruit/veggie either either. I found that Weight Watchers is the best because it gives you lots of options for foods you do like/can tolorate. . . it helps you monitor your moderation. Even if you follow it for 6 months, it helps you out in the long term because you are just more aware of the points of foods.
06-11-2013, 12:03 PM   #9
LindaS
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I am not a big fruit/veggie either either. I found that Weight Watchers is the best because it gives you lots of options for foods you do like/can tolorate. . . it helps you monitor your moderation. Even if you follow it for 6 months, it helps you out in the long term because you are just more aware of the points of foods.
I tried Weight Watchers once. The emphasis on high fiber food was impossible for me to follow, since I can't eat foods high in fiber without extreme pain. Now I just try to eat as balanced as I can without getting sick, and don't worry about my weight.
06-11-2013, 12:06 PM   #10
mish2575
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I agree. I was discouraged by not getting extra fiber points. They have a new program though that doesnt really focus on fiber. I also did it online so i didnt have to go to meetings.
06-12-2013, 10:45 AM   #11
darster
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I was average weight when I was diagnosed. Frequent stays at the hospital with obstructions and multiple surgeries left me skeletal. Then, periods on steroids helped me to gain over 60lbs. Over the years, I have referred to it as my 'reserves'. If I get sick, now I have something to fall back on, sort of. Having Crohn's for over 20 years has given me some perspective, but people can be so ignorant.
06-12-2013, 06:08 PM   #12
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I find this whole process discouraging. I was not a heavy person until I reached mid 20's...initially, I gained weight when I stopped smoking cigarettes...this was prior to my diagnosis....did the yo yo thing and my weight really didn't start escalating until I started with my meds for Crohns...I, too, have had multiple surgeries....menopause and now I am 250 lbs. I am discouraged...I don't eat much...can and will eat the wrong foods...it is my go to thing...toughest bad habit to break for me.
My biggest annoyance that I can think of though was the doc I mentioned earlier who told me I couldn't be flaring cause I haven't lost any weight. I was floored...truly offensive and narrow minded. I was never one to lose a lot of weight....not a good diagnostic factor for me.
So...thanks for writing...we must keep our chins up and be a support to our fellow Crohnies.....
06-12-2013, 06:16 PM   #13
lblair
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I'm 5'2 and 198!!!! I still eat when I have a sick stomach because that is what I have been doing for the last 20 years!!!!!! I think that if I didnt I might be a skinny as a pencil!!

When I told my Mom I had Crohn's she said you do the people I know are super skinny thanks Mom I told her that everyone is differnt!!!!!!!

Im currently on 40mg of Predisone so not losing any thing any time soon!!!!

Lisa
06-12-2013, 06:47 PM   #14
xmdmom
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A recent poster found that of 75 outpatients with Crohn's, "49% of the patients had a BMI >25, (33% overweight, 16% obese). Of the patients with an increased BMI, 10% were taking corticosteroids at the time of measurement. " Doctors need to recognize that elevated BMI is now common in Crohn's.
Gut 2013;62:A22 doi:10.1136/gutjnl-2013-305143.51
06-12-2013, 10:45 PM   #15
723crossroads
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I was average weight when I was diagnosed. Frequent stays at the hospital with obstructions and multiple surgeries left me skeletal. Then, periods on steroids helped me to gain over 60lbs. Over the years, I have referred to it as my 'reserves'. If I get sick, now I have something to fall back on, sort of. Having Crohn's for over 20 years has given me some perspective, but people can be so ignorant.
I have something to fall back on too, my arse!!!!
06-13-2013, 06:34 AM   #16
darster
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Lol!

Last edited by darster; 06-13-2013 at 06:34 AM. Reason: cap error
06-13-2013, 06:42 AM   #17
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I have something to fall back on too, my arse!!!!
This made me laugh thank you for starting this thread.
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06-13-2013, 03:02 PM   #18
723crossroads
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Quite welcome loveys! Nothing like a bunch of chubs to get the laughter rollin aye??Love ya all!
06-16-2013, 03:06 AM   #19
SandyUte
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I'm not the one in my little family with an IBD, but I'm putting in my two cents anyway. My hubs, Doug, is heavier than I have ever seen him, a result of not being able to eat the "healthy" things. He's terrified of anything green (fiber) and craves it at the same time. Yes, when at his sickest (an almost complete obstruction) he lost weight, 30 lbs in about a month, but since high fiber is not a choice, meat, carbs and cheese (not lactose intolerant) fill up a lot of his diet. Not exactly condusive to a thin body. Also, in spite of a 6'3" frame, I think his metabolism was shot years before they diagnosed him and he still eats like a bird and gains weight.
Even if speaking from purely my perspective and if I weren't familiar with crohn's, I can tell you that a lot of medications and health issues can make a person gain weight. my first foster child (a male) went from a very skinny 130 lbs 15 year old up to almost 200 lbs due to medication, then ended up diabetic also. Myself, although not the same as an IBD, I have IBS and have a hard time with fiber also, and even during the days I make a lot of trips to the bathroom and my tummy hurts, I'm an emotional eater and will eat more. Plus, anyone who has a chronic illness and is tired all the time knows how hard it is to get out and move (exercise) when not feeling well.
I just had to say.
I understand.
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06-16-2013, 03:59 AM   #20
sickinlk
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ive always struggled with weight. since my teen ive been overweight. im about 180 now but ive gone up to over 200lbs and at my lowest ive been 154lbs. im 5ft 6" and big boned so I can carry it.
since dx im finding it so hard to know what to eat. I eat really healthily for all my meals and exercise regularly but the weight just sticks. I shouldn't be eating fibre fruits veg and salads but I do. im scared how much weight id put on if I went low residue. I tried last year while I was on pred and I gained 10 lbs. im still trying to loose it.
ju
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06-17-2013, 09:56 AM   #21
723crossroads
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Thank God for big bones!!!AY?
06-17-2013, 04:25 PM   #22
sickinlk
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Thank God for big bones!!!AY?
lol, never heard anyone call themselves small boned.

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06-17-2013, 09:01 PM   #23
LindaS
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lol, never heard anyone call themselves small boned.

ju
I wouldn't call myself small boned, but I would call myself hollow boned (thanks to the predisone and osteopena as a result)
06-17-2013, 09:38 PM   #24
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have you tried to cut simple carbs and sugars. That helps tremendously and is also better for your overall health
06-17-2013, 11:22 PM   #25
723crossroads
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I have cut carbs as much as possible. I dont use sugar and I try to not eat much bread or noodles. But when you are broke, it's kind of difficult.
06-17-2013, 11:47 PM   #26
SandyUte
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I'm diabetic and still eat sugar. I'm just a baaadddd girl. Doug, would you pass the fruit loops? ( sugar is my drug of choice.)
06-18-2013, 05:52 AM   #27
lizbeth
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I'm not the one in my little family with an IBD, but I'm putting in my two cents anyway. My hubs, Doug, is heavier than I have ever seen him, a result of not being able to eat the "healthy" things. He's terrified of anything green (fiber) and craves it at the same time. Yes, when at his sickest (an almost complete obstruction) he lost weight, 30 lbs in about a month, but since high fiber is not a choice, meat, carbs and cheese (not lactose intolerant) fill up a lot of his diet. Not exactly condusive to a thin body. Also, in spite of a 6'3" frame, I think his metabolism was shot years before they diagnosed him and he still eats like a bird and gains weight.
Even if speaking from purely my perspective and if I weren't familiar with crohn's, I can tell you that a lot of medications and health issues can make a person gain weight. my first foster child (a male) went from a very skinny 130 lbs 15 year old up to almost 200 lbs due to medication, then ended up diabetic also. Myself, although not the same as an IBD, I have IBS and have a hard time with fiber also, and even during the days I make a lot of trips to the bathroom and my tummy hurts, I'm an emotional eater and will eat more. Plus, anyone who has a chronic illness and is tired all the time knows how hard it is to get out and move (exercise) when not feeling well.
I just had to say.
I understand.
I'm heavier now than I've ever been and the weight just keeps coming. I put it down to not being able to eat the healthy diet I used to enjoy and it worries me a lot cos of my diabetes management, it's so difficult to balance it with crohns. I used to exercise everyday but since being diagnosed in Dec I just don't have the energy to anymore, so I'm getting fatter and grumpier all the time lol.
06-18-2013, 06:50 AM   #28
lsgs
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I feel your pain! I've been on pred for a year and look awful.

People give me that really patronising 'you're looking so well' when they see me. I don't call moon face and a beard looking well!!!

My weight literally fluctuates by stones at a time. I am never the same size for too long. I have clothes in every size, haha.
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06-18-2013, 11:06 AM   #29
lizbeth
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Yeah!! I have my FAT clothes and then my FATTER clothes!! Lol. Never did do the skinny thing .
06-18-2013, 11:33 AM   #30
LindaS
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I have my "regular" clothes, my flaring clothes and my predisone clothes!
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