is every crohnie skinny but me?

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New Member

Date Joined Sep 2009
Total Posts : 15
   Posted 4/10/2010 9:56 PM (GMT -7)   
Hey. I have heard alot about people with Crohn's disease being really underweight but I just thought that maybe that was a misconception because I am not. Now I have been reading on here lately alot about people losing alot of weight or being small. Is anyone else overweight? I have always been slightly overweight and getting diagnosed with Crohns has not changed that. I could stand to lose a good 20 pounds. How come I don't lose weight? I would imagine it matters where the Crohns is located. I have Crohns Ileitus. What are your experiences with weight gain/loss?

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/10/2010 10:12 PM (GMT -7)   
It is not unheard of and there are some of us that crohns just change our metabolism that much...
Thought this might help you know that you are not alone.
It usually commonly delays dx, because doctors think oh they cannot have that they are not losing weight.
Or people also think that disease cannot be severe if you have gained weight.

Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 4/10/2010 11:17:13 PM (GMT-6)

Regular Member

Date Joined Jul 2008
Total Posts : 71
   Posted 4/10/2010 11:28 PM (GMT -7)   
Oh no I am very over weight. I always tell my husband I cannot see how I could be over weight as much as I visit the restroom.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 allergic to Asacol,    Colazal made Crohn's worse,      Prednisone 20mg X2 daily   (off Pred now) 
 Imuran 50mg X 2 daily,      Hyzaar 50-12.5,Toprol XL --  Hypertension
 Insulin   --   Diabetes,      vitamin...... 
First Remicade infusion 8-9-08
 Had allergic reaction on 5th infusion I took benadryl and got to finish.
 Went for 6th tratment even took benadryl before infusion still had reaction and had to stopped Remicade.

Regular Member

Date Joined Mar 2010
Total Posts : 42
   Posted 4/11/2010 1:32 AM (GMT -7)   
I am also overweight (by about 50lbs) and the doctors say i most likely have Crohn's Ileitus.
So i know how you feel, I still feel slightly confused because my doctor said that it is one of the biggest things in Crohn's yet i don't have any weight loss.

On Entocort regimen to help my diagnosis.

20yr old Male
2002-Diagnosed with GERD when I was 12.

Veteran Member

Date Joined Jan 2003
Total Posts : 6131
   Posted 4/11/2010 2:06 AM (GMT -7)   
me too. been over weight nearly all my life.. . been from 130 to 260... curently headin g down from 215-220 last thanksgiving to 188 now.. without trying and im on TPN and i eat from wake up till bed time. it really varies.. ive met some rail thin people in person and some that are obese .. oh and i think my crohns is classified as CROHNs OH MY GODDOUS.

Regular Member

Date Joined May 2005
Total Posts : 166
   Posted 4/11/2010 3:42 AM (GMT -7)   
I'm embarrassed to admit it but, Crohn's has given me sort of a weight obsession.  I was 148lbs when diagnosed and got down to 97lbs.  I looked like, and was, walking death.  I've been at 110 for the last couple of years now, and really liking size 0.  Now that my Crohn's is stabilized, I try to maintain this weight.  My dr wants me to gain but I act like I can't...not healthy I know.  I struggled with my weight since my teens and 148 was the most I had ever weighed.  I have the attitude that this disease has taken over my life and this is the one and only perk in having it.  I know, there are support groups for people with my mental illness!
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009

Veteran Member

Date Joined Feb 2009
Total Posts : 1883
   Posted 4/11/2010 6:25 AM (GMT -7)   
I am overweight as well. I have colitis (probably crohn's). Last year was horrible and I was going to the bathroom between 5-20 times a day and may have gained a pound or two b/c of my thyroid issues. Also, if I was very sedentary b/c I didn't feel good. I didn't have a weight problem until I got into my 40's had menopause, low thyroid hit. I've had IBS for a long time but maybe not IBD until the past few years but that is hard to say for sure. I don't understand how you can go to the bathroom that much and still not lose weight. However, mine wasn't really watery diarrhea.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid,claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)

Blood test positive for Crohn's via prometheus ibd serology panel

Regular Member

Date Joined Oct 2009
Total Posts : 157
   Posted 4/11/2010 6:59 AM (GMT -7)   
I am slightly overweight. However, I never was until I was on high dose steroids for over a year.
I just started seeing a doctor who asked what my lowest weight was, to which I responded 130, then he asked what I usually weighed before I got sick- 150...he looked at me in shock (because I weighed 185 in his office that day) and said "You weighed LESS before you got sick than you do now?!"
...then he immediately told me to start tapering my steroid. Finally!
But yeah, I've never been rail thin.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/11/2010 7:53 AM (GMT -7)   
I have litterly doubled my body weight with this disease. Went from 150 in the military, to my highest of 302.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

New Member

Date Joined Sep 2009
Total Posts : 15
   Posted 4/11/2010 9:19 AM (GMT -7)   
Okay! Glad to know that I am not the only one out there. When I was first diagnosed I was at my lowest weight ever in my life, and had been there for about a year. I had started exercising all the time though and watching what I ate before I even knew though, so I still like to think that was my own doing. BUT everyone looked at me like it was because I was "sick". Finally I stated to believe it and thought that at least there was one good side to Crohns. Now that I am overweight again I am almost kind of embarrassed with even Crohns can't stop her from overeating.... lol... I think for me it has more to do with that the junk food (chocolate, cookies, chips, white bread) doesn't hurt me as much as the healthy food (fruits, veggies, whole grains). Or maybe that's just an excuse for me.....
~diagnosed with what they say is "severe" Crohns Ileitus in September 2007 at age 29
~presently on 1000mg Pentasa/ day
~waiting to start Prednisone 40mg/day and Imuran 50mg/day....after I speak to my Dr.
~History of fistulae
~no surgeries, obstructions, complications, not even sure what a "flare" is...I feel healthy as a horse ( old, everweight horse) :-)
~Am I in denial or just very lucky?

Carla DeLoge
Regular Member

Date Joined Feb 2010
Total Posts : 76
   Posted 4/11/2010 9:30 AM (GMT -7)   
my whole family has been big people. When my disease became active at the age of 16 we didnt know what was wrong. I weighed 155lbs with in a year and a half i lost 50 pounds. I couldnt keep anything down. They did surgery and found out what i had. I lost 3 foot of my small intestine. Which i have crohns all through it. Any way when my crohns go into remission i will gain weight and get hefty. Or when it is active it can also depend on the meds im given. Now im 147lbs thats the heavest ive been in 7 years. I was in a size 1 and hated every minute of it. I like to have some weight. So i think everyone is diffrent. My father has it in the same places i do and he has apretty good size belly. But thats okay when we get sick the weight melts off. A combination of puking and not eating and going to the bathroom 20 times a day. hope this helps some.

Regular Member

Date Joined Nov 2007
Total Posts : 147
   Posted 4/11/2010 1:08 PM (GMT -7)   
I am overweight as well. Ironically, my first diagnosis was Celiac disease and the reason I went to the doctor in the first place was because of uncontrolled weight gain. I went from 115 to 135 in a matter of months and I could barely keep any food down. I was throwing up and having horrible D. A had a ton of vitamin deficiencies as well...yet I was gaining weight. I have had slow creep up the scale over the past 5 years and I am now at my heaviest at 160. I had been steady at 150 until the last round of steroids which packed 10lbs on me that do not want to come off. I also have PCOS which contributes to weight gain and inability to lose it. But one would think that if you are no keeping food down you would not keep gaining weight. I have a total complex about the issue since i was always relatively fit and now I look like I am letting myself go.

Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 4/11/2010 2:32 PM (GMT -7)   
I am 5 feet 8" and 138 lbs

When I got diagnosed in December 2008 I was 114 lbs.
Then I got pred and went to 158 lbs hehe had lots of appetite and felt like a million bucks, was very happy :)

I have lost 20 lbs since September 2009 it is just going with out me having to do anything. I am a little worried about that but we will see. If I go below 130 lbs I will have to do something.

I have always been rather normal in my eyes but most say I am skinny.
25 year old female from Iceland.
Diagnosed with : Endometriosis march 2007, Anxiety disorder august 2007, CD/UC they don't know witch October 2008, Autoimmune Hepatitis in July 2009
Medication - Humira, Asacol, Librax, Cipralex and Cerazette.

My wonderful dogs :) ~ ~

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 4/11/2010 4:52 PM (GMT -7)   
As you can see lots of us are overweight. I've been from 170 lbs to 232 lbs. At 6'5". I'm now on the way down again at 205 lbs. One good thing about being heavy is you have lots of room to lose weight if it starts to happen. I say that because the way I lose weight is I can't eat without going into bad pain. Due to the pain I may not eat solids for 2 days and then only 1 meal a day for a week or two to get my system to calm down. Repeat this over 2-3 months and you'll lose weight! I try my best not to lose it to fast and when I can eat I try it put weight on but if things don't calm down I'll continue to lose weight until a surgury or prednisone will start me up the scale again. So from my point of veiw when I was 232lbs I felt secure knowing it would take some time to lose if it started. Now I'm worried as I've used most of my weight loss already and don't want another surgury or to be on the devils drug yet again.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 4/11/2010 5:21 PM (GMT -7)   
I'm overweight. And I'd be lying if I didn't admit I often wish the other end was one of my "symptoms."
I lost weight at every flare until the last one. I don't ever get diarrhea so it wasn't due to that - it was because the pain was so bad, I couldn't eat. My current GI takes pain seriously and had me taking Vicodin as needed. So this time, when I flared badly, I took a Vicodin before every meal and ate mostly pain free right up until my surgery.
My biggest struggle has been losing weight since I couldn't eat veggies/fruit/salad. I do better on processed foods, which of course are bad for you. I'm a couple months post-resection and am trying to make up for all those foods I wasn't able to eat prior but fear my damage will get back to a point where I can't eat it again.
I'm overweight because I love food and don't have enough self control.

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 4/11/2010 8:08 PM (GMT -7)   
I'm 215 pounds and I'm a 5'4 female. So you're def not the only one overweight.  The smallest I've ever been was 172 pounds and that was during a flare and a 3 week hospital stay without food.  I can't blame anyone/thing but myself for being overweight though. I just love food.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.

Regular Member

Date Joined Oct 2008
Total Posts : 114
   Posted 4/12/2010 2:04 PM (GMT -7)   
I have always been on the heavy side. Before I had my flare in 2008, I was at 225 pounds. Doesn't sound that bad until you figure in that I'm only 5'7" tall. By January, 2009, I weighed 135 (90 pound weight loss in 9 months). Since I had my 2 resection surgeries in November 2008, I have gotten back up to about 215-220 pounds. I think it is a struggle for some of us to not gain weight while others have to struggle to keep from losing any more weight.
Diagnosed with Crohn's in July 2005. 2 Bowel Resections in 2008.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 100 mg/day (Blood Pressure), Remicade IV every 8 weeks, Omeprazole CR 40 mg/day, Lomotil BID, Immodium BID, Cholestyramine 2 grams daily

New Member

Date Joined Apr 2010
Total Posts : 2
   Posted 4/14/2010 6:06 PM (GMT -7)   
well im definitely not underweight. i've been on the prednisone for like basically all year because we don't know whats happening inside my body right now so i'm like 145 pounds and im only 12 so you're not alone

Veteran Member

Date Joined Feb 2009
Total Posts : 1883
   Posted 4/14/2010 7:34 PM (GMT -7)   
Wow, what amazing stories about crohn's and weight issues. I can totally relate to Veebo. I have no idea how you can be sick to your stomach, not eat and still gain weight!! It isn't fair. I know a lot of women use diet pills they get from the doctor but I just don't feel these are safe and have way too many health issues to try it. However, I guess the people who lose weight must get really weak and face more complications, right? I keep thinking they must be sicker in some way than those of us who are overweight but I see many who have written here have had surgeries and a pretty bad time with it. It's one for the books!
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel

Regular Member

Date Joined Jul 2009
Total Posts : 417
   Posted 4/14/2010 10:04 PM (GMT -7)   
oh good I've been meaning to ask this question! In High School (4 yrs ago) I weighed 120, then before I became pregnant the first time 148, after that pregnancy I was 160, then i was dx with colitis and lost 30 lbs in a matter of weeks, then became pregnant the 2nd time and ballooned! (I was on 20 mg pred for a yr) and blew up to 180, 9 months later. Currently I am 168 and have problems going back down to my 'healthy weight' of 130 (not too thin so I don't have any wiggle room if I get really sick). almost everyone I know thinks I don't really have crohns because i'm not thin as a twig. I barely eat anything and have troubles moving so I dont exercise much. but I'm glad I'm not the only one that is a bit overweight. *phew*
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008
Possible Rheumatoid Arthritis

Medication: Pentasa 6x daily, Imuran 50 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 4/15/2010 5:13 AM (GMT -7)   
So I have always been overweight.  When I was a kid growng up, I always wore Husky size.  Then I got sick and lost it all.  First time in my life I was skinny.  Went skinny throughout college and then BAM!!!  It came back.  I am 5"8 and weigh about 240, in other words, Obese.
I find it so hard to lose weight for so many reasons, mainly I love food.  Also, I don't know what to eat to lose weight, because all the good things to lose weight are bad for me (high fiber, whole grains,etc.)  I am seeing a nutritionist in 2 weeks so maybe that will help. are definitely not alone.  There are a lot of big Crohnies out there.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily, Loperamide HCL - 2mg every other day

What A Life
Regular Member

Date Joined Mar 2010
Total Posts : 116
   Posted 4/15/2010 5:50 AM (GMT -7)   
I have gained and lost weight twice now... I was husky in high school; then my senior year I got sick and lost weight in the matter of months..... Tapping the scales at only 118 pounds as a senior boy in high school. Gained a little weight when I went to college and got my crohns under control. Eventually, getting a desk-job at the state for 3 years and being comfortable with eating any foods while I was on remicade caused me to balloon. Last year I weighed 235, which was the heaviest I had ever been. I had a flare about 10 months ago and lost some weight cause I just didn't eat. I saw the weight-loss and "felt it" as well. It felt good and I started eating a bit healthier and watching my portion sizes. At the same time, I began working out... After not working out for years, the weight came off fairly quickly. I'm down to 170 now and I'm going to try and maintain this weight the rest of my life.

Unfortunately, working out has come to a halt as I injured my ankle pretty badly a week or so ago; and I also think I have an oncoming flare. :-(
28 Y/O Male DXed Crohns in 2000.
Fistulotomy/Fistulectomy 2001
Been on many meds including Remicade.
Asacol and Pentasa on a when-needed basis as of recent
Current regimen: Diet and Exercise.

Regular Member

Date Joined Mar 2010
Total Posts : 23
   Posted 4/15/2010 10:54 AM (GMT -7)   
Veebo said...
I am overweight as well. Ironically, my first diagnosis was Celiac disease and the reason I went to the doctor in the first place was because of uncontrolled weight gain.
My first of many wrong diagnosis was celiac disease. I was only 11 and weighed 50 pounds. I couldnt eat anything. I was skinny my whole life untill this year:( I was in the hospital in January and high doses of steroids led me to gain 25 pounds. Im now off the steroids but guess what? No weight loss yet!

Regular Member

Date Joined May 2009
Total Posts : 177
   Posted 4/15/2010 10:56 AM (GMT -7)   
I could stand to lose 25 pounds myself, and it doesn't have anything to do with steroids. Ugh.

Regular Member

Date Joined May 2009
Total Posts : 177
   Posted 4/15/2010 10:57 AM (GMT -7)   
I did lose about 30 pounds when I first started getting sick and had my surgery. I looked great and appreciated it more once I started feeling better after my surgery. Kept it off til I got pregnant with my daughter. The weight struggle is back since I had her though.
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