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If I Have Crohn's, Why Am I So Overweight?

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Posted 9/14/2009 9:30 PM (GMT 0)

MMMNAVY said...
I actually gain weight during a flare, and I wake up every 2-3 hours because of hunger pains. I was not overweight (granted I have never been skinny) until I was severely injuried and got very ill. In fact I was a military officer who had run over 30 marathons. But I think that severe of an injury flipped a metabolism switch for me (there was a point in time that I was being feed by IV and it was about 1200-1500 cals a day and I was steadly gaining on it). I think whatever may trigger this disease may flip that switch for a small amount of those of us with this hoarder metabolism (kinda like PV was saying).

I also have a couple of other health issues such as thyriod crashed about 3 years after being dx, even though I felt it sooner. I have explored baratric surgery, and might do the lap band if I could ever get my crohns in remission. But I am not going to do any surgery until I can get my crohns in remission, because I know it takes me at least a year to recover from major surgery and that having autoimmune issues can make it much more risky. (I have always taken longer to heal then others I know, but usually I heal pretty well.)
Plus I have horrendous bone pain that other then my fractures have not been able to explain, and of course lupus. I think those issues infringe upon my ablility to move, and especially exercise.

I am about six feet tall (I have also lost some height, so I have some spinal compression and other bone issues going on) so I think our BMI's would be about the same. (At my heaviest I was 302 lbs., but I have gone into a semi-remission if semi-remission is only going about 12-15 times a day and that has helped some with my weight loss.) But I have to admit if I could exercise more then what I can now it would make a huge difference.
Is that a problem for you? Is exercising too painful?

Yes it is a problem for me, but it's the vicious circle...lack of exercise due to pain, weight gain due to lack of exercise....and so it goes on...but like you my thyroid started to fail, I became peri-menopausal, my gallbladder became inflamed, and I got gout in my big toe and then had a flare-up all in the space of a few months...the pain from the proctitis/crohn's was horrendous...I still think it was all connected....I just can't find a doctor to put it all together.

Hope you feel better soon

(((hugs)))
Posted 9/14/2009 9:38 PM (GMT 0)

lamb61 said...
I'm 48 yr old female and have been overwieight all my life to some degree. Currently I'm 5'7" and 207 lbs. The only time I've successfully lost weight is during a really bad flare. Exercise only seems to aggrevate my disease -- from my "neo"illeum up through my esophagus.

I have to agree with the "hoarder" metabolism theory, I think my body stores fat "just in case".

I am so interested in this "hoarder" metabolism theory but I can't find any information on it...can anyone give me any info on it please?

Do you take any PPI's for the upper gastric problem that you have?

((((hugs)))
Posted 9/14/2009 9:41 PM (GMT 0)
Well I have the CT tomorrow...but unfortunately I won't get the results there and then as the CT is going to be performed by a radiologist...they might tell me if there is a stricture or similar.

(((hugs)))
Posted 9/14/2009 11:29 PM (GMT 0)
Unfortunately there is no academic journal research on it. It is just something that has been tossed around when my GI brought forth my case study at a reseach conference, because there is a rare few of us that this happens to. If you are heck bent on having the surgery, then if it was me I would do something that could be simply reversed like the lap band.
Posted 9/15/2009 10:33 AM (GMT 0)
Snowcrystal, Yes I do take 40 mg of Nexium daily. Some days it works others it doesn't, so on those days I add an OTC like Tagamet which helps some. Mostly watching my diet helps with the upper symptoms more than anything else. As far as my metabolism, it seems like my thyroid gets VERY efficient when inflamation is present.

The CT isn't bad, it's realtively quick and painless. Good luck!
Posted 9/15/2009 12:09 PM (GMT 0)
snowcrystal..i am glad my post helped you...i hope you know that you are not alone....take care.....
Posted 9/15/2009 4:30 PM (GMT 0)
I too am overweight by 50-60 pounds. I gainned 50 pounds after starting to take my crohns medications including endocort. I was told that it woldn't put weight on me, but who knows. My family doctor told me that it was because I was feeling better. He soon retracted that statement.
Posted 9/15/2009 6:00 PM (GMT 0)
Hi everyone

Thank you for adding to this thread and helping me to understand that I am not the only one that has Crohn's and is overweight...We all seem to have a similarities one way or the other.

I called to find out when i would see the GI and his secretary first told me that he wont need to see me...I said that can't be right...she would not give me the biopsy result either but later after she had a word with him she let it slip that the consultant GI said he will need to see me as my bariatric surgeon will not be able to control my Crohn's...I said to her, Oh so the biopsy does show Crohn's, and she said oh you never heard that did you?...I have an appointment on the 12th October after this of mix up

I had my CT today...I have 4 war wounds as they could not find a decent vein...they kept going through the veins...apparently I have thin flat veins...a shame my body doesn't follow suit...lol...One of the punctures has swollen up and is very painful....but they got there in the end.

Anyway...thank yall once again...

Snowxxx

Just like you guys said the Iodine they injected me with does make you feel like you've pee'd yourself...very weird...I got the metallic taste in my mouth way afterwards...unfortunately they would not give me any idea of what they saw as the results have to go back to the consultant GI...I'm not due to see him until the 12th October.

I think it's a long time to wait for the results...if they found anything sinister do you think they would call me in earlier?...I hate the wait...and I'm a little scared to be honest.
Posted 9/15/2009 10:21 PM (GMT 0)
hello,
I thought I should add to this discussion, as my Crohn's is in the colon, and i find it impossible to keep my weight up. At the moment I weigh only 34kg :(
Posted 9/16/2009 1:56 PM (GMT 0)

Hi Snow Crystal

You asked me where in the Uk I live, sorry for dealy have been away for a few days. I live in East Yorkshire, I am lucky enough to have a great consultant - who i can usually get into see at short notice. I have met a number of other overweight crohnies on my visits to have Infliximab,.

Posted 9/16/2009 2:45 PM (GMT 0)

littlemissmuffet said...
Hi Snow Crystal

You asked me where in the Uk I live, sorry for dealy have been away for a few days. I live in East Yorkshire, I am lucky enough to have a great consultant - who i can usually get into see at short notice. I have met a number of other overweight crohnies on my visits to have Infliximab,.

Hi again

Hope you had a nice time...

I am in London...so popping round for a cuppa would be a bit difficult then?...lol...only joking.

I'm glad you have a good consultant...mine is supposed to be very good too but I have not met him yet...have to see him on the 12th October...but I'm hoping that the results from yesterdays CT will be faxed to my GP.

It is funny how all the research shows that there are only about 6% of Crohn's sufferers being very overweight...It has to do with it being in the large intestine that it does not make you mal-absorb....But I think there are far more people that are overweight with Crohn's than the data shows...

My friend with Crohn's who had the full gastric bypass has it in the small intestine, she did say that she lost a lot of weight with her first flare but not after that.

I still don't know if my bariatric surgeon will give me the bypass or the sleeve or nothing at all...but I just spoke to a surgeon who will do a full bypass if Crohn's is in remission.

Wish I could be sure...

(((hugs)))
Posted 9/16/2009 6:30 PM (GMT 0)
I have Crohn's and I am overweight.  When I had the pill cam done, they found Crohn's in my small intestine and in my large when I had the Colonoscopy done.  I was on prednisone for about a year and gained about 20 lbs.  I have lost that--been off the pred since about Feb or March--and I am back at the weight I was to start with.  I am about 50 lbs overweight, give or take. 

 

Posted 9/16/2009 6:56 PM (GMT 0)
I spoke to NACC today (National Association for Crohn's and Colitis) who told me they have many members with Crohn's who are very overweight....She said that this is why so many people go undiagnosed for too long...doctors just can't see that a person is suffering with an IBD when the patient is not losing loads of weight...she did say that this has come up on their news papers...if I receive it 'll post it's findings.

snow xx
Posted 9/23/2009 6:47 AM (GMT 0)
I am a 44 year old male and have been obese all my life and have had chronically loose stools and abdominal pain all my life. I was diagnosed with coeliac disease 8 years ago and Crohn’s disease last December.

I asked my doctor why am I so huge, when I have two disorders that result in malabsorption. I hated his answer but it was very good. He asked if I was very strict on the Gluten Free diet, I said I am. He said then if I was tested now there would be no evidence of Coeliac Disease. Regarding the Crohn’s generally there is just a small section of the digestive tract that is not functioning; the rest of the system is working fine.

This is the part I hated he asked if I ate for comfort when down or depressed. I said yes. He then asked if I had abdominal pain did I find that eating seemed to settle my stomach. I said yes. The doctor said that some people with these pains just do not feel like eating in these circumstances. I only got diagnosed because I was completely blocked and could not eat without bringing it back up and was unable to pass any waste.

I won’t get started on the prednisone talk other than I am bigger than I have ever been and feel like an overly emotional crazy irrational fat ****** with a moon face.

don't knw if you can relate to it but thats why I'm such a porker.
Posted 9/23/2009 8:11 AM (GMT 0)
It shows that one size just doesn't fit all.

I'm interested in the Coeliac part of your disease....It would not surprise me if there is an aspect of this that affects me.

I am going to make a new thread about it but...after finding ulcers and inflammation inside my large bowel that looked like Crohns but acts like uc, the diagnosis is unspecified again...

Snow xx
Posted 9/23/2009 6:13 PM (GMT 0)
I too am an overweight crohnie. Probably why my doctors and I kept thinking my "D" was caused from IBS instead of Crohn's. I might have lived with it since I was in my late teens. I didn't find out it was Crohn's until I was 46 and had to have an emergency resection due to a fistula to my bladder. I lost 50 lbs in the next 8 months using exercise and dieting but I've been stuck at 200lbs for the last 2 years.

I eat extremely healthy because of diabetes and usually take in around 1200 cals a day but still can't lose weight. The hourding theory sounds plausible to me.
Posted 10/6/2009 7:52 PM (GMT 0)
Ugh, Stevede I hear ya on the moon face. I have it right now- plus the acne and its so awful even looking in the mirror.

When I was diagnosed with Crohn's 11 years ago I weighed 118lbs at 5'10" It was insane how skinny and grey and sunken I looked. Not good. I gained with the use of steriods and maintained about a 140-150lbs range thereafter.

I had flares 3-4 times a year (mostly requiring hospitalization). Then I got pregnant in 2004 and started gaining weight. My crohns was slowly going into remission! In 2006 I had a flare and was weight 200lbs. Didn't lose any weight. Then in 2008 I flared again and weight 218lbs.

Now I'm sitting back down at 203lbs (was 230lbs in March of this year) and in a major flare. Actually typing from the hospital and facing my first surgery in 11 years of crohns.

I thought I was alone as the only overweight person with crohns! Course it wasn't always this way. And to be honest, while I dont like my appearance much as a fat person, its much better than the fear of becomming a skeleton each time I flare.
Posted 10/6/2009 10:13 PM (GMT 0)
Well I still don't believe I have Crohn's disease...I just can't believe it...I just don't seem to fit...but the doctor will explain next Monday.

Snow xxx
Posted 10/6/2009 10:18 PM (GMT 0)
I also have crohns disease but after 8 years they finally diagnose it and by then I had it is both large and small. well my weight fluctuates quite a bit. sometimes i weigh rightat the recommended for my height and sometimes I am over , sometimes it is not the text symptoms
Posted 10/6/2009 10:26 PM (GMT 0)
I understood it all when they said it was Colitis...but I still can't my head around having Crohn's...It's all indeterminate because the biopsies did not show up like Crohn's but the inflammation and the ulcers look do look like Crohn's.

My biggest fear though is that if I had to have the Steroid treatment right now my weight would become dangerous levels.

Snow xxx
Posted 10/7/2009 6:48 AM (GMT 0)
I am the same way, its nuts. sometimes I wish I had skinny crohn's (that's what I call it) instead of whatever is wrong with my system that keeps the fat on and any attempt to eat well (veggies, multigrain etc) causes it to get worse. This is the worst flare up I've had next to the one where i finally got diagnosed.

My weight was always slightly higher than normal but after the prednizone and then the entcort it escalated. The only time I lost weight was when I had pnemonia and I still gained back more than what I had.

Never thought to ask my GI about it though...I am so ashamed of how big I am. My hb lost 50 pounds after exercising and such and I was trying to tag along, but would end up exhausted and sick during it, I gave up.

I'm on Humira now, but its not making me better and I'm super bloated...but I"m not "starving" all the time like when I was on prednizone and Entcourt. My crohns is located in the illeum itself, but is now affecting the small bowel, where its closing up (might need surgery soon I've been told - if this Humira doesn't work).

I always thought it was weird that the friends I had were tiny with crohn's and I was so big...I've had crohn's for 13 years now...and looking at possibly my first surgery.

I am 5'5 and weigh 215....it goes up and down...

Post Edited (nbsunshine) : 10/7/2009 12:53:46 AM (GMT-6)

Posted 10/7/2009 7:55 AM (GMT 0)

truerockynorth said...
Ugh, Stevede I hear ya on the moon face. I have it right now- plus the acne and its so awful even looking in the mirror.

When I was diagnosed with Crohn's 11 years ago I weighed 118lbs at 5'10" It was insane how skinny and grey and sunken I looked. Not good. I gained with the use of steriods and maintained about a 140-150lbs range thereafter.

I had flares 3-4 times a year (mostly requiring hospitalization). Then I got pregnant in 2004 and started gaining weight. My crohns was slowly going into remission! In 2006 I had a flare and was weight 200lbs. Didn't lose any weight. Then in 2008 I flared again and weight 218lbs.

Now I'm sitting back down at 203lbs (was 230lbs in March of this year) and in a major flare. Actually typing from the hospital and facing my first surgery in 11 years of crohns.

I thought I was alone as the only overweight person with crohns! Course it wasn't always this way. And to be honest, while I dont like my appearance much as a fat person, its much better than the fear of becomming a skeleton each time I flare.

Hey, Just re-read your post....so sorry I missed the bit that said you are in hospital right now...........
So please accept my best get well wishes and a super speedy recovery.

Snow xxx
Posted 3/2/2010 4:42 PM (GMT 0)
Hi all - I'm reviving this thread after reading through it because I'm in the same boat...

I have Crohn's terminal ileitis, and was very sick when I was first diagnosed at age 19. I've never been skinny a day in my life, but soon after my diagnosis, I dropped a lot of weight very quickly... when I entered the hospital with a perfed bowel six months after my diagnosis, I weighed about 125 pounds (I'm 5' 5") - the thinnest I've ever been.

Now, 10 years later, I'm in a severe flare again, but I'm not having the same symptoms I had with my first flare. No abdominal pain this time around, but 7-12 trips to the bathroom a day. But now I weigh 270 pounds! And I can't wrap my head around how to eat for weight loss and Crohn's health at the same time... it seems like the two diets (low-residue vs. whole-grain/low-fat) almost completely contradict each other. Very frustrating! I actually love eating traditionally healthy foods - lots of fruits and vegetables, whole-grain carbs, lean meats and cheeses, etc. But they don't sit well with my disease.

After months of frustration over this, I finally broke down and made an appointment with a local nutritionist to try to sort things out. I meet with her on Thursday, and I'm hopeful she can help me - she said she's had several patients in the same boat of having Crohn's and being obese. I'm also hoping she can help me boost my energy, since that seems to be half the battle - I enjoy working out and staying fit (even completed a half-marathon a few years ago!), but the disease (and my various medications) leave me so fatigued now that even a 30-minute walk seems harder than climbing Mt. Everest...

By the way, I'm beyond shocked that the GI practice that my doctor is part of (15+ doctors) doesn't have a nutritionist on staff, or at least a list of nutritionists they could recommend to patients. They treat diseases of the digestive system, and you can't tell me that adjusting one's diet can't help treat those diseases...

Has anyone else sought the advice of a nutritionist to help alleviate Crohn's symptoms and/or lose weight?

(Thanks for reading my long and rambling post! smilewinkgrin )

Posted 3/2/2010 6:21 PM (GMT 0)
hi M&M,

I use to be very thin until i got sick. I was not officially diagnosed until recently but i have suffered for years and told it was IBS, then colitis, then crohn's then lupus and then crohn's lol. very frustrating. Like i said i was really thin until i started getting D all the time and then i started putting weight on (so quickly i got stretch marks) I didn't get it cause i didn't do anything differently other than i was getting sick all the time and you would think i would lose weight. Then over the years i had 3 kids i went in and out of remission but never any major flares until after my 3rd child then i got very ill i went into remission again and lost a bunch of weight was good for a bit and flared again. I have since been off work for over 2 years can only control the D with high doses of pred (over 50 mg to as much as 100 mg) i have been on and off pred for the 2 years (mostly on) and have gained over 90lbs. I am off pred now and have since lost 16 lbs but i am very sick again. I have started remicade few weeks ago and praying this works. I completely understand what you are saying i cannot eat the foods for diets they make me sick (some out the same way they went in) and ya i do lose weight but send me into a major flare. I did go see dietician but she didn't really have alot of answers for me and i didn't find it helped she wasn't really knowledgeable about crohn's. I was thinking about looking into finding another nutritionist out there that specializes in crohn's. I asked my Gi before but he doesn't believe that diet really has anything to do with "curing crohn's" so they do not have dieticians they work with.

It's funny cause the dietician is always telling me i do not eat enough lol. I weigh 255 (im 6'). I just say do i look like im starving???? I really belive that hoarding metabolism thing cause i have always said mine doesn't exist its like i got sick and mine shut off. I barely eat and i gain. Im sick contstantly and i gain in just doesn't add up.
Posted 3/2/2010 6:25 PM (GMT 0)
oh and as far as being over weight only with crohn's in large intestine. I am overweight and my crohn's is in my small intestine, mouth and throat. I malabsorb my food all the time. I am vit d and B12 def. I can drop 20lbs quickly and gain it back the next week. My colon is perfectly healthy colonoscopies are normal (except at TI) so that theory doesn't hold up.
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