crohns and weight loss

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iamahilton
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/5/2017 7:14 AM (GMT -6)   
I've had Chrohn's since I was in my early thirties, in the 1980's, but went undiagnosed until Sept 2000 and then was discovered by accident. I have since had two bowel resections and have tried every new drug that has come along with no help. I had high hopes for Cimzia as it was made for crohns, but I was allergic to it. I am currently taking Lialda free through the Shire Cares patient assistance program but I haven't seen any real change after about three months.
Just over a year ago I started losing weight slowly but steadily. I didn't understand this as I weighed 180 about ten years ago and have had chronic diarrhea since 1993. I am now down to 120 from 138 and no matter how much I eat I am still losing. I am 64 and maybe I've got one more birthday before I disappear. One of my daughters has Celiac disease and she is trying to be gluten free. Please support crohns research if you can.
I have tried Remicade, Humera, Celexa, Imuran, methotrexate, Cimzia, Entocort and now Lialda with no help.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1462
   Posted 4/5/2017 9:23 PM (GMT -6)   
Where is your disease primarily located? Colon? Small intestine? Were your resections in the colon or small bowel or both?

Is your appetite and food intake still ok? Do you think the weight loss is due to malabsorption? Have you had an MR Enterography or capsule endoscopy to check the condition of your small intestine?

Have you been tested for celiac?

Have you tried Entyvio? Or Stelara? Those are two newer meds with much higher odds of working than Lialda, which is very unlikely to help much with Crohn's disease.

iamahilton
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/6/2017 1:13 PM (GMT -6)   
I had a small bowel followthrough in Dec and my small intestine shows lots of damage. Several strictures where the previous bowel resections were plus others. My appetite is still good and I eat pretty balanced meals. I'm sure it's malabsorption because solids go through my system very fast. My GI suggested I experiment with immodium and for a few days I thought it was going to make the difference, but then it settled down into half an immodium constipates me for 2 or 3 days then it's back to diarrhea several times a day. I can't have a capsule endoscopy because it would most likely get stuck. Some of the damaged sections I saw were maybe as big as my little finger which is about bone thin. My ring finger is a size 4 as I have a small frame. I was told that Entivia and Stelara are the same as Cimzia which gave me hives. I now weigh 118and was 120 about a week ago.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1462
   Posted 4/6/2017 2:41 PM (GMT -6)   
Cimzia is an anti-TNF medication like Remicade and Humira. Entyvio acts very differently, as does Stelara. Being allergic to cimzia doesn't mean you'll be allergic to either Entyvio or to Stelara.

iamahilton
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/6/2017 4:23 PM (GMT -6)   
I guess I was misinformed about the Cimzia. I will talk to my GI about the other meds. Thanks for your help.

Raydio
Regular Member


Date Joined May 2012
Total Posts : 94
   Posted 4/11/2017 10:32 PM (GMT -6)   
Have you had your iron levels checked? I went through that a few years ago. I got down to 125 lbs from 180, and started even losing my hair. I had a good appetite but was steadily losing my weight. Had all sorts of tests done and finally found out that I was severely anemic as well as my body was not processing foods. I was put on a regiment of iron and some strong vitamins and a couple other supplements. I managed to get back up to 180lbs in a couple years. I have lost weight recently and down to 165 but I have been having a heck of a flare up over the last few weeks and I am hoping that is all it is from.
Good luck.
46 years old with IBS/IBD, UC, GERD, Diverticulitis, High Anxiety/stress, depression, low iron Anemia and bleeding bowels, neck and back issues and have a phobia of using public bathrooms which makes having the tummy issues a bit harder. And thats on a good day.
Have 3 amazing kids and would like to be a regular dad and tired of letting my family down.
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