Community Forum

Sometimes I feel like I'm the only person with Crohns that is overweight.  Most people I have met have the opposite issue.

I was diagnosed at 45 and during the last 5 years have been hospitalized numerous times and had resection surgery 2 years ago.  I blame part of the weight gain on prednisone, part of it on quitting smoling and the rest on what I call me comfort foolds which for me are starches and carbohyrdates.  There are so many times I can't eat frest veggies or fruit.

So here I sit back in flare again...just got out of the hospital (but I did lose about 10) from not being able to eat.  But now I'm on prednisone and fearing more of a weight gain.  I have an appt at the hospital with a Dietician and am hoping she can help me.

Does anyone else have this problem ?  I need to lose about 35 lbs to be in my BMI for my age and height.

Thanks

 Reply posted for penguin.

I'm happy to read all the replies and know I'm not alone in the weight battle. I found out I had Crohn's last year.  I originally lost about 20 pounds then after all the medication and treatments I put on about 30 pounds.  I too get the looks from the nurses and others that can't believe I have Crohn's and weigh what I do.  The last time I went to see my GI the nurse gave me a class schedule for an over weight health class.  Talk about being depressed.

Crohn's is like a rollercoaster one day your up and the next your down.  I go in on the 30th of Sept for surgery to have 3 blockages removed.  I'm hoping it will help with the pain and get me off of some of the medication. 

I wish you all the best.  And know you are not alone.

 Reply posted for nana.

 Hi,

           My name is Maryann. I'm new to this site. I am 45, and have had crohn's disease since I was 19. Weight has always been an issue for me. When I was first diagnosed, I had lost an exceptional amount of weight. After a while, I gradually gained weight back. I was sort of heavy before I got sick. Later, I have been known to flip flop back and fourth with gaining. ( more than losing.) Now, I am about 20lbs over weight. Of course, I feel like I can weigh more than the doctor says because I'm older and my frame is not small. I'm 5 foot four and I weigh about 164. According to a chart in a prevention book, I should weigh 157, which is a lot better than 145. Diet is hard to manage with crohn's. Eating much fiber is not good, so it is hard to stay full. I have a sprint master and I excersize everyday on my sprint master for 30 minutes. I agree, weight is very hard to maintain with this disease. I'm hoping I can meet friends on this web site. I hate having crohns. You would think after all the years that I've had it, I'd be use to it, but it is a disease that just won't go away.

 Reply posted for nana.

I am so glad to see that I am not the only one with this problem!  I was diagnosed 2 yrs ago at 44 in the emergency room and had to have surgery because I was completely blocked.  But the weight gain was and is the worst for me.  I just lost 100 lbs and now have gained 50 of it back.  My stomach swells when I eat so that makes it worse and I get even more depressed.  I tried hard and long to get the weight off after my children and terrible 1st marriage which I got through, met a wonderful man, and continued my life, then BAM, down with this disease.  My boyfriend, now husband at that time was and is my wonderful support.  He doesn't care that I have gained the weight but I do.  I have been terribly depressed but am finding help in this site and talking and listening to others here.  Now if I can find a GI that knows what they are doing and gives a crap about what I am telling him, then maybe I can also find a MD that will do the same because the ones that I have been to shouldn't have a license!!
As far as coping, I have my moments.  I currently do not take any of the meds that they gave me at the beginning which were Asacol, predizone and prilasec.  I do however drink 2 glasses of fresh made fruit juice and take probotics, 60 billion a day.  These seem to help most of the time, until I get stressed, then watch out!!  You think that I would lose the weight with all of the diarhea that I have, but nope.
Thanks for the listening and helping and I wish everyone the best of luck.

 Reply posted for nana.

Hi Nana,

Not to worry I promise.  You aren't alone girl.  I was diagnosed with Crohn's at age 29 and have been struggling with it for 8 years now.  I was heavy when I was diagnosed and I am still heavy today.  It really does affect everyone differently.  I have lots of problems with diarrhea and not so much nausea.  It is the opposite for others and they can't hold anything down either way.  I have been on steroids from time to time. 
They calm down the Crohn's symptoms plus cause me to feel hungrier than I usually am.  I am about 50 lbs overweight but I don't worry so much about my weight since Crohn's.  If I can get a few months in a row without "issues" then I am so-so thankful.  I eat what I can and pray that it doesn't bother me.  Count your flair-up free days as all good and keep movin girl.

 Reply posted for nana.

you're not alone ive had crohn's since i was 17 and im 42 now and ive been over weight all my life @ one time when i had my colon resection the weight actually saved my life the dr told my paretns that from the amount of intestines and colon he took out a skinny person wouldnt of made it and told them to leave me alone ,so  i know how you feel because everybody i meet w/crohn's is very small .now dont get me wrong i wish i could loose weight because of the joint pain and pain in my stomach im going to start water aroebics and really watching what i eat , as far as food when ever and whatever i eats hurts but ive discovered fennel tea ,pepermint capsuls, and miralax and they really work but now im dealing with the joint pain cant take pian pills because they constipate me and make my tummy hurt  also im suffering from fistuals near my vagianl area as well as my anal but im about to take remecaid for the second time i hope it works because this is really getting to me

 Reply posted for crohnsinOH.

CrohnsInOH - what meds are you on? 

I was put on prednisone, but only for a week, and my appetite has increased a little, but because I know firsthand that this is one of the side effects from this drug, I am retraining my mind that when I get that urge to go and munch, not to.  I usually will get some water -I found flavored water with no sugar and full of vitamins - and it seems to take the edge off.  But if your stomach is telling you it is hungry, then find a non-trigger, low fat snack (whatever you may be able to eat).  It is hard, when our body is programming our brains to want to eat and consciously knowing this and the norm is to follow instinct.  But retraining the old tapes in our head is a very difficult thing to do and can be done.  Alot of practice. 

I actually put weight on when I was in remission and glad I had that extra baggage now that my diet is cut in half and alot of liquids only.  My concern on this, and I am going to discuss it with my MD and GI doc when I see them, is the fact that putting weight on, taking it off in flare mode and then back on, etc., etc., is very damaging to the heart and at what point should I be concerned.

 Reply posted for nana.

Hello, you are definitely not alone and I am happy to hear I am not either.  I was thinking the same thing.  When I had my resection I was hospitalized for about a month and lost about 40lbs, another 10lbs after I was released.  Then once they reversed the colostomy the weight started coming on and hasn't stopped.  It is just another frustrating part of all of these diseases.  I feel your pain.   God Bless Gigi

 Reply posted for nana.

Nana,

was wondering how things are going your way. Hope you are feeling better and how's the weight? I'm heading back to Weight Watchers this coming Sat. I believe it will be the 11th of July. Need to lose about 40 pounds (recently gained with this round of flare ups). I don't know about you. Is there anyone out there who gains weight with a flare up? I get so tired and worn out that I just eat anything and then sleep because of exhaustion I gain weight. Does anyone else do that? I'm not the normal Crohn's patient. I've never lost a pound with this disease.

 Reply posted for lesardh.

When reading your situation I felt like I was looking into a mirror. You are definitely not alone. After beginning a hefty dosage of Prednisone I gained 40lbs in a month! After that I put on another 40 over a three year period. And it's not like I eat three fast food meals a day/week for that matter, I eat healthy with the occasional slip up and still just recently I was able to lose 30lbs due to a slight decrease in Prednisone. It's amazing what tapering 3mg's did! Doctors, friends, family, all question my commitment to being healthy. I even had my GI tell me that the steroids are killing me. Really? Who put me on them, in the first place? Hello? I get very frustrated until I read a similar story like yours which helps me reclaim some sanity. I am never happy to hear of someone else struggling with issues, it is just a litle more reassuring that it isn't my fault. Thank you for sharing.

 Reply posted for nana.

Oh wow!  I thought I was the only one too!  I had been relatively thin most of my life until this last flare.  I was just diagnosed with hypothyroidism.  i was feeling really fatigued before the hormone therapy (still low but have to increase slowly).  I knew something was off when I witnessed from the couch (the only place I could lay down and somewhat supervise my children) my two year old and four year old taking cups full of water into their bedroom, dumping them on the carpet and stomping on it and I thought to myself,  "I just don't even care."  under normal circumstances, they wouldn't have had the oppertunity for such shinannigans. 
I have gained a significant amount of weight too, that just won't come off.  I am really very frustrated with the way I look.  I did find that the comfort waist jeans from land's end catalog are great since I am distended still.
--vaudry

 Reply posted for nana.

Oh, thank goodness!  It is such a comfort knowing that I am not the only Crohn's pt with weight issues.  I was always a little overweight but after being put on steroids, I gained more than 40 lbs in just a very short time.  Since then, I have not been able to get it off.  I am now over  200 lbs and when I diet it takes me almost two months just to loose 5 lbs.  I stick to the diets to a T until I don't see results.  After about 3 months I give up completely.  I catch all kinds of static from people saying thinks like, "well, you must not be doing it right" or "your not exercising enough", etc.  And they don't believe me when I say that I truly am sticking to the diet and following all the rules.  Frustrating!!!    Also, when people find out that I have Crohn's disease they think that it must not be too bad since I am fat.  And I have even had Drs say things like, "Are you sure you have Crohn's because people with Crohn's usually cannot keep weight on?"   I want to say, "No, I am not sure I have Crohn's.  I just went through the colonoscopies and cat scan, etc for the fun of it!"  I hope that I can someday get my body to a point where it will let go of the weight and I can get back to a comfortable size!

 Reply posted for lovinyou719.

Since going into remission, I've found I can eat foods I couldn't before.  Now, because of the issues with my joints/knees and recent surgery and not being able to do alot of what I did before, my comfort is eating.  I eat when I'm not hungry.  I think mine is due to the painkillers.  Didn't have this issue before taking them. 

Lumpy Crohn's patients.........I can see the headlines now.    We come in all shapes and sizes so know you are not alone and love ya just the way you are. 

 Reply posted for nana.

I'm glad you wrote this because now I know i'm not the only one. I was just diagnosed with Crohn's in Jan. Since then I've been on predizone and gained 50 lbs. During my flare I lost about 50 lbs and looked like a skeleton but now i've gained all of it back and then some. I can't even look in the mirror at myself cause I hate the way I look. I used to have a flat stomach. I was not the skinniest but I wasn't too overweight. Now I don't fit into any of my clothes and I find myself running to my comfort foods because I get depressed on how fat I feel and look. I'm hoping once I'm off the steriods that I will return to my old self. But in reality I don't see it happening. Also since I've gained so much weight I've isolated myself because I'm embarrassed of what I look like. I feel like everyone will just think i'm this fat girl so now i've basically lost all my friends. I want to loose the weight but since my new diagnosis I've been scared to do things like work out because alot of everyday activities cause stomach pains. So know you're not alone. I feel the SAME way you do! Goodluck!

 Reply posted for nana.

No, you're not the only one. I had my first surgery in 1989, and I remember weighing 213 lbs, and when in went in for the pre-op, the nurse said "you don't look like a normal Crohn's patient", I replied, "yep, if I've got the disease, can I at least have the weight loss". I've dealt with my weight all my life.  Now, I look back and wonder how much of it is because of the way I feel, when I'm in remission, I excerise, diet, better frame of mind, upbeat...I was 29 when I first found out, thus, the surgery 6 months later. I must of had Crohn's I would say since my early teens to be that bad after finding out. The narrowing of my colon was so bad, they was afraid of blockage. My weight issues started around 13, off and on. Seems like the depression, up and down, started then too. Any help for you? I had lost weight 2 years ago, got to my goal with Weight Watchers. Now, since my recent flare up of about 1 year, I'm up 30 pounds.....go figure.

 Reply posted for nana.

hey....I was dignosed with crohns at 54yrs. I lost about 20 lbs that year....but now that I'm in remission I seem to still want to eat everything and am starting to get "lumpy" around my middle.  I crave sweets more than ever...sometimes I think it was nicer losing the weight with the flare...all I'm on is Remicade every 6 weeks. 

 But thats been causing me to have multiple infections and now after having 2 pap tests since last summer I'm looking at severe problems.  Not sure of this is a side effect from the Remicade.   

Has anyone had GYN  problems being on Remicade ? I started Remicade in June 09.  I've just beed refered out for a second opinion....

Hopefully its not serious!

 Reply posted for nana.

Hello. I am 23 years old and was just diagnosed with Crohns. I am not over weight but I have been eating more than i normally do and I am gaining weight. I thought I was the only person with Crohns that was gaining weight and not loosing it. I use to go to the gym and eat healthy but now I dont want to go to the gym because I don't know if I am going to have to go to the bathroom and all I eat is carbs because with Crohns there is really nothing healthy you can eat. It's not easy and I can some what relate to your issue. The only advice I can give you which someone gave me was to read a book call "stop the vicious cycle" which tells you the type of foods that are good for you that you can eat. Also you can look at going to see a nutritionist. Good Luck.

 Reply posted for grannygrump71.

Thanks alot for the replies....I appreciate it.  It's so nice to know you're not the only one out there.

I did well today...I was actually feeling well enough to do some exercise and some gardening outside yesterday.

Thanks for the support.

 Reply posted for nana.

No Nana,  you aren't the only one who is over weight.  I've had Crohn's for at least 25 yrs according to the blood work & records.  It took me many years to find a great GI.

    I'd lost 30 lbs with a 2 month flare & needed to lose 15 more.  He said no, if you have another flare you'll need some weight to lose.  Then told me to stick with breads, rice & pastas ... boy did they put back on the 30 lbs plus some.  I'm very nervous & eat to often.  With arthritis being so bad at 71 yrs of age, it's really hard for me to work it off.

    This is a great site & many folks do care & understand.  I hope you find a great diet you like & can stick to it.   We do pray for each other too.   grannygrump71     

 Reply posted for nana.

i always say i must be the only person who is overweight with crohn's too! so i guess we're not alone. :o)

i have always struggled with weight issues a bit, but being on steroids for 3 years definitely made it worse. now off the steroids, i find it hard to lose those 20-30 pounds i would like to lose. i also am a carb maniac (which, when looking at the scd diet, makes me worry that i'm making myself worse with all the carbs). i joined a gym, but i've been tired lately and haven't gone.

don't have any suggestions for you, but wanted you to know you aren't alone!