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happymomhappywife

2y ago

Newbie with Gastroduodenal Crohn's disease seeking advice on medication

Newbie here! I was diagnosed with Gastroduodenal Crohn's disease after having half my stomach removed and three inches of small intestine. I was near death. I had an obstruction and was so sick for so long. I was misdiagnosed years ago. My new gastro had me on apriso and I had to stop it. My sister has Crohn's as well. I go in tomorrow for blood work and Thursday to the gastro. I'm hoping he puts me on a new med. Any advise on what med he may put me on first. I'm down to 100lbs and can't gain any weight.

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afrie

2y ago

Hi ! I was first diagnosed with severe Crohn’s in 2011. I’m grateful that I’ve been in full remission for 4 years now. Acknowledging that every person is different and each of our bodies are different and therefore likely respond to food and medications differently, here’s what I’ll say: Aside from medication — which I’ll share at the bottom — changing your diet and what you put in you body is the first and best and easiest thing you can do to help yourself. Change your diet. Don’t go on diet, but change what you put in your body. Nutrition has probably been the most powerful thing I’ve changed that’s helped me. I eliminated “inflammatory” foods — all dairy (there are plenty of alternatives now!), acidic foods, super spicy foods, and even things like kale (too densely packed to digest) and tomatoes (acidic) and eggplant (nightshades). I also minimize gluten. I stick to chicken, eggs, fish, turkey, vegetables, salads, fruits, nuts, rice etc. And I drink a ton of water. No soda or sugary drinks. Ever. And I stopped alcohol intake for a year while I was getting better. Now I drink socially. If you take care of what you put in your body, you’re helping your body heal. But you need to find out what food triggers inflammation for you. The above is a good place to start for most folks with IBD. Once you start getting better and/or hopefully get into remission, you can slowly start re-introducing things (if you want). As for medications, I’ve been on Remicade, Humira, Stelara and now I’m on Entyvio. Remicade didn’t do anything for me. Humira and Stelara were amazing and very effective. Entyvio is the “gold standard” drug for IBD, which I’m now on even though I’m in remission, but Humira and Stelara have shown to be very effective. Every body is different, but I would talk to your doctor about Humira and Stelara. And change your approach to nutrition! Hope this helps, even if just a little. Wishing you good health and a path to recovery and remission ❤️
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Tom1991

2y ago

Hey - it sounds like you've been through a lot... Why did you have to stop the Apriso? I've had a good experience with the new biologic drug Remicade, which are used for more severe states like what it sounds like you're having.
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GoPackGo

2y ago

I recommend scd yogurt. Also consider joining 'breaking the viscious cycle scd community' on Facebook. Great recipes for weight gain.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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