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Crohn's Disease
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Posted 9/15/2009 1:58 PM (GMT 0)
I was diagnosed with Crohn's 2 years ago. I weighed 190 lbs. At the time the disease was in the illeum. I have been on Pentasa, Imuran, prednisone, cimzia, remicade, flagyl and Tysabri. My doctor is switching me to Methotrexate and Humira next. I just had a scope and from what I was to understand my illeum is okay now and the disease is moderate to severe in the descending colon. I was put back on steroids two weeks ago because the pain, discomfort and bathroom trips were out of control. Did I mention I have a fistula 2" above my anus that has been there since february. been on antibiotics 3 times since...right now it "under control"...but its still there. I'm down to 135lbs as of today. I can't eat....well, I can, I just know what puts me in pain. I started looking into the Specific Carb Diet....it seems to mesh up with the things I know I can eat. The problem is that I'm starting to get scared about my weight. I know diets high in protein lower your appetite unless you put serious time into lifting. I have NO strength to do light physical activities let alone lifting. I need to find something in the world of non-dairy/non carbs that is super high in calories to pack on the weight. For all those out there who hate being over weight....being underweight is hellish scary. Every chance I get I'll grab a huge spoon full of Peanut Butter....right now thats all I found that I can eat that has super low carbs and high calories....I was also thinking about soy ice cream and peanut butter to make shakes. Does anyone know which meats have the highest calories in them? Ham?

 

Posted 9/15/2009 3:03 PM (GMT 0)
Hi..I also am affected in my illeum colon and rectal area...same fistula..as you describe..i have had mine for about nine years now...and taken some of the same medications...i am assuming you are a..guy? not sure..but..the weight you are at..might be considered thin for a guy..but its still a healthy weight..you just need to make sure..that you keep eating..and don't stop...you should maybe think about drinking ensure..or a protein shake...you should eats things like..bacon, eggs, the meats hightest in fat..are pork and red meat...so fatty cuts of hamburger...pork chops....ham...if milk doesn't bother you...then you should drink that as well..because protein is important...i don't know if the scd diet will help you...crohn's wise..but lots of people say..it helped them to lose weight..so that might not be the right option for you...if you can foods like cheese, crackers, breads, pasta..carbs will also make you gain weight as well...soy ice cream and peanut butter sounds..good..just remember protein...and don't skip meals...have you ever tried an antispasmodic medication? That has really helped alot..i would have spasms in my colon..when i take this medicine..it calms it down...and it does stop me from going to the bathroom so much...it takes only like an hour to kick in..its amazing stuff..i think sometimes our colon..just wants to keep sending stuff out...we need to relax the colon and give ourselves a break! Also you can go to a place like GNC they have some serious weight gainer protein shakes...that really work...my husband used those to gain weight..he went from 190 to 254..hope this helps you out..take care! Hopefully Humira will help..but remember please ask about the antispasmodic med...its worth a try...right!:)
Posted 9/15/2009 4:42 PM (GMT 0)
Hi J-man, and welcome to the forum!

I'm in the same boat as far as being underweight and it is scary. I would like enough weight gain to buffer any flare I might have in the future.

If you can handle them, avocados and bananas are good for calories. I can only eat so many of them before I get sick of them. Papaya is another good one. I can get away with a little hard cheese (hard cheddars) but usually have to steer away from all other dairy, including yogurt of any kind.

Protein drinks are okay for some, but I can't handle them. They either have dairy or soy and I don't do well with either.

Maybe make smoothies with rice milk and add fruits and a little olive oil. Almond milk contains soy...rice milk doesn't.

Scrambled eggs with avocado and a little grated hard cheese in it is yummy as well.

I also try to find rice crackers or chips that don't have gluten. Then I load them up with different nut butters.

Hope these few suggestions are helpful. It is hard to gain if you are giving up all the stuff that is carby, starchy, sweet or tastes good.

The healthier diets tend to make one lose weight, especially initially. Good luck and let us know how you are doing as you go along.
Posted 9/16/2009 12:01 AM (GMT 0)
What about drinking the Ensure product to maintain/gain weight?  This is what my doc put my daughter on when she was losing. And I'm pretty sure it's lactose free.

Seriously consider the SCD.  I think it may really really help you. If you cook, you can get creative and start making your own yogurt. I believe the lactose is removed from the product somehow in the fermentation process.  Maybe use Half n Half or cream to make yours so the fat content is high?? Eat lots of it... you can only benefit from adding some serious amounts of beneficial bacteria to your body. 

Posted 9/16/2009 8:02 PM (GMT 0)
Starches are not allowed the SCD, but many people find that they can tolerate rice after they have been OK for a while. There are so many individual differences that it is impossible to say that you can or cannot have certain foods - the SCD is a guide and you have to test new foods to see that you can handle them. The foods to avoid on the list are there for a reason, but often you can have a bit if you are stable. There is some risk and repeated use of restricted foods will likely provoke a reaction. For instance, if you are gluten intolerant and have not eaten any gluten for a couple of years, you can eat a bit without an immediate reaction. Testing for gluten intolerance requires that you eat gluten for several days before the test to develop the reaction. One other thing that you may run across is - there is a reaction to drastic changes in diet that causes D and gas, so you may experience that if you change your diet too fast.

As for calories, I use tons of SCD legal mayo as well as almond butter. I also make a satay sauce using almond butter. I find that I eat more than I used to and still I have lost weight - but I don't exercise other than household jobs (installing a fence now - slowly). My weight seems to be stabilizing at a reasonable level.
Posted 9/17/2009 4:33 AM (GMT 0)
Another thought...look into products for people who've undergone chemo/radiation treatments. There are a lot of products that may be able to conform to what you need. My father in law just finished his last rounds, but had similar situations with needing to increase mass...his doctor suggested benecalorie and some other (though I cannot recall the name at this point). Anyways, there is a lot of literature and ways to increase weight...I hope this helps...
Take care
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