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Thread: Any UC/Crohns sufferers out there?

  1. #11
    Platinum Member Blue68's Avatar
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    Hi marie. No I haven't had any surgery. Just medication so far. I am back on steroids at the moment. After that I will take care to manage my medication better and see where that takes me. I have read up on the surgical procedures and how it improves the quality of life.

    How long was your husband suffering before they offered him surgery?

  2. #12
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    Originally Posted by Blue68
    Hi marie. No I haven't had any surgery. Just medication so far. I am back on steroids at the moment. After that I will take care to manage my medication better and see where that takes me. I have read up on the surgical procedures and how it improves the quality of life.

    How long was your husband suffering before they offered him surgery?
    He was diagnosed at 16, and had the surgery at 21. The surgery itself was extremely hard. It was a two part procedure where they removed most of his large intestine. He had to have a colostomy bag for three months, and once he healed internally they did the second part of the procedure. I wasn't with him during this but he said it was the worst 3 months of his life with the bag, however he's glad he did it because he no longer suffers with the pain. He's also off ALL medicine, which is something he's pretty proud of because he relied so much on it for so long. He eats whatever he wants, but has to take a lot of vitamins since he no longer has his large intestine. Once in a awhile, he has inflammation where they will prescribe him an antibiotic for. Other than that, his life is pretty normal. Might be something to think and discuss with your doctor if it gets to a point where it's unbearable.

  3. #13
    Platinum Member journeynow's Avatar
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    You might be interested in the book "Anti-Inflammatory Diet in 21: 100 Recipes, 5 Ingredients, and 3 Weeks to Fight Inflammation". The author, Sondi Bruner, has Crohn's. I have a different auto-immune condition of chronic inflammation, and I know it and Crohn's are sometimes treated with the same meds and alternative treatments. I gave up wheat years ago and that made a significant difference. Now, I've been following the diet outlined in this book for 4 weeks and it has definitely reduced inflammation and improved my energy level and mood, and I plan to continue on it. It took a week for me to get used to the diet change and giving up some of my standard foods. The recipes are simple (5 ingredients) and there is variety and novelty, which help the process. I think over time I may stick with this diet because of the overall improvement. It took time to feel the improvement though.

    Here is a link to the book on Amazon:

  4. #14
    Platinum Member Blue68's Avatar
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    Originally Posted by marie0906
    He was diagnosed at 16, and had the surgery at 21. The surgery itself was extremely hard. It was a two part procedure where they removed most of his large intestine. He had to have a colostomy bag for three months, and once he healed internally they did the second part of the procedure. I wasn't with him during this but he said it was the worst 3 months of his life with the bag, however he's glad he did it because he no longer suffers with the pain. He's also off ALL medicine, which is something he's pretty proud of because he relied so much on it for so long. He eats whatever he wants, but has to take a lot of vitamins since he no longer has his large intestine. Once in a awhile, he has inflammation where they will prescribe him an antibiotic for. Other than that, his life is pretty normal. Might be something to think and discuss with your doctor if it gets to a point where it's unbearable.
    I am really happy that the surgery worked out for your husband. It's certainly encouraging to hear too. I have largely been in remission since first being diagnosed so coping with it on this scale is new to me. I'm hoping that I will be able to get it under control again to that extent but if not then it is something I will discuss with my doctor. I'm assuming that surgery is the last resort however.

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  6. #15
    Platinum Member Blue68's Avatar
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    Thank you so much journeynow. I'm in the UK and it's not available until June so I've pre-ordered a copy. I definitely think I need to take more notice of the foods I'm eating whilst I'm flaring. If it helps then I am prepared to change my diet permanently - flare up or no flare up.

  7. #16
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    I'd recommend advice from Dr John Bergman on youtube - fantastic guy:


  8. #17
    Platinum Member Blue68's Avatar
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    Thank you so much Purusha. I've skipped through it as it's quite late but it seems really informative so I'm going to make some time to watch it all.

  9. #18
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    No worries Blue - this guy is amazing and has effectively replaced my doctor, he knows his stuff inside and out and his info has sorted some ongoing health problems for me, everything he says makes complete sense so I hope it's useful!

  10. #19
    Platinum Member faraday's Avatar
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    I got about 3 minutes into that video before my eyes started rolling lol. That guy is sketchy.

    Please don't listen to chiropractors (and especially not from YouTube lol) for any medical advice other than having your back looked at (and even then the science doesn't really have enough confirmed evidence to support chiros for back alignment either)...they aren't real doctors. They don't study for years specializing in these fields...They're peddling pseudoscience. I mean, at the end of the video that guy was taking about how a patients Crohn's disease was caused by hip misalignment...wt.h?!? Lol.

    Skip the "gurus", stick with licensed MDs. Seriously. People like that will make you sicker.

  11. #20
    Platinum Member Blue68's Avatar
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    Hi, thanks faraday. I'm just hoping to find as much information on helping to get the inflammation under control and how to stay in remission once the inflammation (or flare up) is under control. With UC this information is all still rather vague. I'm willing to listen to anything that offers information on dealing with UC but I think this can be done quickly, effectively and straight to the point so I won't buy into any sales pitches.

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