CD

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I was diagnosed as CD four years before, now i am getting an enteral nutrition for a month, i am not sure of the effects. Does anyone here get the same experences of enteral nurtiton? Does it work?

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  • Posted

    Hi Emma

    I've had CD for over twenty years and have mainly used Modulen IBD liquid diet to manage the disease. Basically means absolutely no solid foods and only hot or cold water to drink for a minimum of eight weeks at a time. It's really tough but over time I've adjusted to using it every eighteen months or so. If this is similar to what you'll be doing with the enteral feed I'm happy to share my experiences if you think it might help

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    • Posted

      Hi  IndieHannah

      Thanks a lot for sharing your experiences with me. My doctor advised me to nasal feeding nutritions for at least three months ,which we call enteral nutrition.now I am doing it for a month and there are two months to go. It seems you are handling well with CD. What is Modulen IBD liquid diet? Can you offer more details about this diet if you have free time? Thanks! 

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    • Posted

      Hi Emma

      I've only done the enteral feed once just before major surgery and I was in hospital. The Modulen IBD diet is a powdered formula that you mix with water and flavouring. It's like baby formula I guess. It completely replaces food and it has a naturally occurring anti-inflammatory component too. It gives my bowel a complete rest and allows any inflammation to subside and my bowel to heal. It also means I get a dietician to help and support me through it. Particularly on reintroducing solid foods. It's at this point I get to find out if there are any trigger foods causing problems.

      It's difficult, not as easy as steroids, but it's far cleaner and the only side effects are the mental and emotional ones of not being able to drink and eat normally. It's almost impossible to socialise when on this diet... Have to carry chilled liquid food wherever you go..... Can make toilet visits even more urgent..... But when it works, toilet needs disappear as the food is completely absorbed with no waste!!

      As I said before, I have managed my disease almost completely with the use of this formula as I responded so badly to all other treatments. I have had three resections over the years and now have nutritional problems from short bowel syndrome, but I manage ok.

      Can I ask why the enteral feed, do you have CD in the mouth area ??

      I hope you're coping with it ok, sounds really tough.

      X

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    • Posted

      Hi IndieHannah

      I can't imagine how you went through the twenty years of CD.you are strong-minded!

      My mouth is ok,I'm taking enteral nutrition for induction of remission and three months without mormal diet may let my intestines have a rest .two months later I'll revisit my doctor for further colonoscopy.if the nutrition works I may avoid a surgery. If not i have to take it.

      Your recent diet share some similarities with mine. The difference is you can drink it while I only consume mine through nasal feeding .

      Hoping everything is ok with you! Many thanks!

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    • Posted

      Good luck Emma, I really hope it works for you. It's a shame you can't do the same one as me as at least you get to drink your food.

      But if you do have to have surgery try not to worry too much. It's part of the Crohn's thing and usually works well. It takes time to adjust to the requirements of this illness but providing you have the right support and a positive attitude you'll get through anything.

      I wish you the very best. If you ever need to chat please get in touch.

      Take care x

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    • Posted

      Hi Indiehannah

      Your encouragement means much to me. Now I'm in hospital. after checking my CT the doctor suggested me take a surgery. I will try and hope for the best.

      Wish we could live a painless life.Wish you happy!

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