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I have a question that I am hoping someone can help me answer.  I had my first surgery for my Crohn's disease last May.  I had a bowel resection and they took out 2 feet of my intestine.  I already had "small bowel syndrome" to start with and now I have even less.  When I had my surgery, I weighed about 100lbs and I am 4'8" tall.  Since my surgery, I have been on 10 mg of Prednisone and 4ml of methotrexate, Xyfaxan, Folic Acid and now Cimzia.  The problem is that I am constantly gaining weight.  It seems that no matter what I eat, I gain weight.  I am up to about 125 lbs, which doesn't seem like much, but it is when you are as little as I am. The heavier I get, the harder it is on my Rheumatoid Arthritis and Fibromyalgia.  Has anyone else had this problem?  Has anyone found a weight loss program that works even while you are taking medications?  I have bounced around so much in the weight issue since my diagnosis 5 years ago.  I have been as small as 85 lbs all the way to 200 (on Prednisone).  Any help or advice would be greatly appreciated. Thanks so much!!!!

 Reply posted for bgmgirl.

I have been on prednisone for two months and have gained 20 pounds.  I use to be a small person but I feel huge and have the horrible moon face.  I am eating a bit more but I have always been able to each whatever I wanted and not gain a pound.  The doctor assured me I will lose the weight when I get off the prednisone so I decided to go buy some "fat" clothes.  I am going to keep two wardrobes because I know I will be on and off these drugs for a long time. 

 Reply posted for bgmgirl.

I'm a little new at this, but let's see if I can help.  I was very recently diagnosed with Crohn's (May 30 to be exact).  Since then, I've been on Prednisone everyday (50mg down to the 5mg today).  I've gained almost 15 lbs since, not including the 10 lbs that I made up from losing during the beginning of my flare-up.  However, I've finally started to plateau (I think I might have lost a couple lbs this week). 

There's a couple of things I'm doing.  I eat smaller meals much more often.  Before a meal, I try to drinnk at least half a bottle of water and the rest before my plate is cleared.  My snacks have changed to boiled eggs, bananas, and natural fruit popsicles.  I'm lucky enough to work at home, so I've switched my regular office chair for an oversized aerobic ball.  When I park at college, I try to find the furthest open spot. 

It gets rough as I only get my caffine from chocolate and sodas.  I hate not being able to have coffee anymore.  That's something I'm still trying to even out.  Any suggestions?

 Reply posted for bgmgirl.

Hello. I have had CD for 18 years and I am now on Remicaide. I have gained weight and my  doctor have been on my case about being 10 pounds over wieight. I work out every day. I sill seem to gain weight. Like overnight or something. I do think the medicine have a lot to do with it, but stress have a lot to do with things also. With the CD life is abnormal for me and stresses me a lot, so I pray on this because only the Lord can deal with this one. I have always been underweight but now I have to work out EVERYDAY. GOOD LUCK.

 Reply posted for bgmgirl.

Hi there,

I really relate to this topic. I mentioned this in another thread but it seems that since I started Remicade, I have been gaining weight. Although I have severe UC I never seemed to lose significant weight and at this point really need to lose weight.  Whenever I ask my doctor about my concern regarding the weight gain he assures me this is not b/c of Remicade.  I am not sure what to believe but I feel like I am in a vicious cycle of weight gain, anxiety b/c  of it and then flare up.  Right now I am trying to limit carbs and exercise and hope it works.  I really need to lose 20 lbs.  I have to keep hopeful and it helps to hear from others.

--J

 Reply posted for bgmgirl.

I know the feeling. I was diagnosed 4 years ago and didnt have any weight gain problems till I started Remicade last fall. Ive gained 30 lbs over the winter when I usually lose 10-15 because of my work schedule. Now my schedule has slowed down a little and Ive had more time to prepare decent meals. I have lost a little weight, about 10 pounds, Im not where I want to be but Im hoping to get there. I used to have weight problems till about 10 years ago and I do not want to go back there again. If its any help, Ive tried lately to limit carbs. I know we cant avoid them altogether, sometimes I feel like carbs are the only thing I can eat without the pain that comes after mostly everything else. I used to be a salad person and thats a huge no-no for me. Try getting some exercise when you can. Its helped me and Ive never been an exercise nut. I try to walk every day and that seems to help my spirit and makes me feel like Im accomplishing something good. I also have been drinking more water and that seems to help as well.Ive been lucky so far and havent had surgery. I have been hospitlaized a couple times for flare ups the most recent being 9 months ago. I started on Remicade after that. I wish there was an easier way to lose weight and have a normal life but Im feeling good when I dont eat what I shouldnt. I eat mostly at home, I hardly ever eat out because menus remind me of all the things I cant have. I hope this helps. If I could be any more help just drop me a line

 Reply posted for bgmgirl.

When you find the answer to your question you could make a million my dear!  I have asked my GI for the past 16 years what to do to lose weight while on steroids ....... he laughs and says the same thing!  If I knew that I would be a millionaire! 

I had my first surgery for Crohn's about 16 years ago.  While in the hospital they put me on 60 mg of prednisone, Immuran and 8 Asacol a day.  I gained a pound a day the 5 days I was there.  I was a normal weight of about 150 and 5' 7 1/2" and wore a size 12 to 14.  One year later I had gained 65 pounds and wore a size 20 to 22. 

I have been off and on of steroids for years.  Been on Remicade, blah blah blah ...... we all know the routine. I have tons of clothes. I have the skinny (well, not skinny but the NORMAL size wardrobe) and the fat wardrobe.  Right now I'm in the fat wardrobe of 18 to 20 cause I had a huge flare up last summer on June 2nd and have had 5 of them during this past school year ( I am a teacher.)  I have been on prednisone most of this year.  AND I don't know about you but about the ONLY things that don't make me have the "trots"  are breads and potatoes, green beans, crackers, etc......... Hard to lose weight on that...... "-)  But ya know, I'd rather be chunky and healthy than skinny and sick!  I have decided that God has given me this cross to bear and for me it has become a ministry. Whenever someone is diagnosed with Crohn's (and some of my junior high students have been) ...... I am the first person the parents call.  I can go and talk to them and assure them that life can be OK!

I thank God that most of the time I can "function" ...... this week hasn't been great, but there have been worse...... Hang in there!    DJ

 Reply posted for bgmgirl.

im in the same boat as you.  i was diagnosed with severe uc shortly after labor day of 2007 and at that time i weighed roughly 200-210 at 6 feet tall.  once i was diagnosed and i was put on prednisone for a few months, during that time my weight shot up to 257 ilbs.  its been tough on my self esteem because i have never been like this before in my life and it seemingly came out of nowhere, kind of feels like I've been wronged somehow.  Anyways, I guess the best we can do is try to cope and not let this get to us too much because if it does, its only going to drag us down.

hang in there....

 Reply posted for JenB2004.

Thanks for your response.  I knew that I wasn't the only one out there.  I have been on prednisone before and so I knew that would put the weight on again.  The puffy face too.  We are probably twins  When I look at pictures over the past 5 years, I look so different every year.  Last summer, I weighed 98 lbs, but the summer before I was 170.  I guess I will have to find a "happy" medium.  I feel I am active though because I am chasing after 2 kids and working a full time job where I am always running around helping people all over the building.  Then, I sit down and eat 3 or 4 peanut butter crackers and I can feel the pounds going on.

I guess I should just listen to my husband and friends when they say at least you are not skin and bones anymore.  You look like a normal person.  Well, I hope that you get some relief too.  Maybe we could stay in touch and bouce ideas off of each other some time.  Thanks for responding to me

Becky

 Reply posted for bgmgirl.

Hi.  This topic hits home to me.  I was diagnosed last July when I was hospitalized for a total of 17 days due to an abscess that was drained.  I, too, have always weighed about 105 lbs. (I'm 5'4") since highschool.  Because I was on a clear liquid diet, I was 95 lbs. when I left the hospital last August.  The TPN and budesonide helped me to gain the weight back plus some (got up to 119).  Then I had a flare in March and lost 8.5 lbs in a week.  Which took me back down to 111.  I was then put on prednisone for the first time.  I'm off of that now but am put back on budesonide again.  I'm now up to 128 lbs. which is the heaviest I've ever weighed in my life.  My family and friends all tell me I look so healthy.  But like you, the difference of the new 18 lbs. from my pre-diagnosis usual weight is a huge difference to me.  All the weight has gone to my gut and my butt.  My clothes don't fit at all and even new ones that I bought this winter don't fit my waist now.  I wonder if it's normal weight gain, water weight gain, menstrual weight gain, steroid weight gain???   Especially for being petite, you might also know my frustration when I say I hate that my gut sticks out further than my chest.  I feel like I have the oddest looking profile. I knew I'd gain weight since I'm actually absorbing nutrients and calories now but I didn't expect to get this out of shape.  I also can't stand my puffy face from the steroids.  When I smile in the mirror, it doesn't look like me anymore; I get pretty upset about that at times.

I haven't tried exercising, which could be one of the reasons I've gained weight (I used to run around waitressing and I still teach dance).  I was really interested in the Fluidity Bar exercise system until I saw that it was $200+.  I think I'm going to pull my bike out soon or visit my personal trainer sister, Pam, at her gym more often

Take care,
Jen