Crohn's Disease Forum » Diet, Fitness, and Supplements » I can't stop losing weight...

07-28-2012, 03:35 AM   #1
Squadinho's Avatar
Join Date: Oct 2010
Location: Cardiff, United Kingdom

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I can't stop losing weight...

This doesn't sound like a problem to some people, but its starting to become a problem for me.

I was diagnosed with CD just over two years ago. I initially lost 6 stone during my initial flares. At my lowest I was hovering above the 10 stone mark. After I started infliximab I went into remission for about 12 months and my weight went up to between 11 and half stone to between 12 stone and I was maintaining that.

Then I had some troubles with my liver. All my meds were stopped, started flaring and was put back on pred. Eventually I was given the all clear to start back on infliximab but I wasn't truly under control. I was flaring in between infusions, which never used to happen, so they've put me on methotrexate.

Since my last infusion I've lost 2kg, and the time before I've lost roughly 5kg (had been flaring for 2 weeks or so).

The thing is, I would actually say I'm eating more now than I have done for a long while, but weight is just coming off. Its got to the point now where people are commenting on me, and my girlfriend is now getting uncomfortable with it, and I'm even noticing now that I'm getting a bony look about me.

I'm gonna be referred to a dietician if I lose more weight by my next infusion, but that is 8 weeks away. I don't want to get any worse by then, and I can't get a GP's appt. for another 2 weeks.

Just looking for some advice, really.
Diagnosed July 2010

Crohn's disease in the Jujenum, Terminal Ilium, Caecum, Sigmoid, Descending, Transverse and Ascending Colon.

Current Meds
Remicade / Infliximab Infusions

Past Meds
Azathioprine 150mg
Calcium + D3 Supplement
07-29-2012, 08:51 PM   #2
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hugh's Avatar
Join Date: Oct 2011

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We're all different, but this is what worked for me.
I dropped from 66 to 55 kg (while eating 5 meals a day plus snacks), lots of blood and pus, felt really bad........

I always thought my diet was healty,
Organic fruit and veg, organic grains, grass fed meat, but i'd still enjoy sugar ang sweet baking (organic croissants, organic cake, organic bread, organic lentils, and one espresso a day.
I stopped eating anything but lamb, rice, avocado and lemon for about six weeks.
Bleeding stopped within one week and weight slowly crept up.
I tried SCD and went backwards (yogurt - really bad for me) so i went paleo.
Back up to 65kg with no exercise. (i will get onto that one someday )

I believe my initial diet worked because-
-no sugar,
-no gluten (and almost no grain,
-no vegetable oils,
-no processed foods,
-no legumes
-no coffee

or some combination of the above!!!
'Liberation can only be gained by practice, never by discussion'
SN Goenka
08-03-2012, 05:25 PM   #3
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Join Date: Dec 2011
Location: New Jersey

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I had this problem as well, I dropped from 140 pounds, which is my normal, athletic fit self, to under 112 pounds in less then 3 months while being diagnosed with crohns. My doctor really pushed Ensure nutritional drinks, basically telling me to drink as many as I could in a day, at that point I really tried to shy away from IV/nasogastric nutrition. Luckily, with the addition of Pentasa and Pednisone the first round, I was able to bounce back and gain my weight back, plus a few extra pounds. I went up to over 160 due to prednisone, and had to stop it for it stopped working, and I was having terrible side effects. I'm losing weight again, and once again my doctor says that until we figure out a medication program that works, supplement as much as possible with ensure, and try to eat when you can.

It's a pretty nasty place to be in, but hopefully everything gets straightened out!
Original Dx: April 2011

Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)

Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira
08-03-2012, 10:16 PM   #4
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Thermo's Avatar
Join Date: Jul 2012
Location: NorCal, California
I have had this issue my entire life, there is really no fail proof plan but as Niki said drinking Ensure's helps greatly. Try to eat multiple times throughout the day and be eating at all times. Add as much butter and other condiments onto your food as possible. For example on my toast I add butter, almond butter and honey. Think of it the same as an overweight person counting carbs and calories you want to do the opposite and increase your calorie intake to at least 4k a day. Just make sure you are still exercising as it is still possible to get a belly and be skinny at the same time, you don't want to add too much weight too quick. The little choices add up over time.
Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.
08-04-2012, 02:01 AM   #5
Join Date: Apr 2012
That sounds too bad. But I think mostly everyone else's suggestions covered what I have. I would like to add a few things though. I would also say to drink a lot of protein shakes and fruit juices, especially when you're not feeling well. Though I guess this goes with the Ensure thing. And maybe you can use substitute your usual foods with high-fat alternatives as well. Good luck!
07-22-2013, 05:45 AM   #6
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Scottskillz's Avatar
Join Date: Jul 2013
Location: atherton, California
drink gainers, eat when you aren't hunger which is just a mindset and you get into a technique of eating and rinsing with water. I don't endorse or not endorse this idea, but smoking marijuana will increase your appetite as well. I'll go through period's where as soon as I eat it goes right through me, but that's okay because I'll just eat more and more and more, and refuse to drop weight.

If you don't get the typical as I call "crohn's pains" that can be triggered by your diet, just try eating whatever you want and as much as you can. High cal meals at fast food or casual diners and shakes, eat pasta and keep your caloric intake up

Crohn's Disease Forum » Diet, Fitness, and Supplements » I can't stop losing weight...
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