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Recent content by aypues

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    Night sweats

    I had night sweats during flares, and also if I was becoming more noticeably anemic...that was one of my indicators along with headaches and ringing in the ears.
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    Crohn’s in small bowel

    I have sb crohn’s too. Suffered with it far too long. Just had a partial laparoscopic surgery to remove 48cm. Should have done it 10yrs ago!! Had 15 strictures and was constantly bleeding. So glad it’s out! I am a total believer in surgery now. I had one 20 yrs ago that was far worse to recover...
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    ? about what to buy for after sergery.

    Reporting back. Surgery went well, was disappointingly delayed a day after full nerve block and all prepped on Tues bc of some prior highly complicated cases. It went down Weds early evening. They ended up taking out 48cm instead of the 20cm which we were anticipating. Quite a bit worse than the...
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    ? about what to buy for after sergery.

    I'm going for surgery on Tuesday. They're going to take out about 10-12" of my mid ileum, and possibly some strictureplasties on other smaller sections too. I've been drinking the immunonutrition shakes 3x/day, and have the pre surgery drinks for the day before and the day of surgery. Getting...
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    Kind of Feel Like Dying

    Did you try wellbutrin? It is not sedating and works great, for me anyway. Some weak data showing it can help IBD too. I would seek out another opinion with an IBD specialist (not just a GI generalist). I’m not sure what area you’re in but US News just released their top GI hospitals and GI...
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    Pain, Fatigue no Loose Stools :-/

    This. You need to be on something even after surgery. Preferably immediately. Your immune system dysfunction doesn't just turn off bc of the operation. The recurrence of Crohn's is much lower in people treated with a biologic after surgery.
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    Another Stricture

    Intermittent pain, chronic anemia/blood loss, general malaise. No full-on blockages thank god, but the lumen is down to 9mm so that would account for the pain.
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    Another Stricture

    For a short one like that they might do a strictureplasty. I have a 20cm mid ileum stricture that is coming out in August, we think (waiting on a date). Not looking forward to it but hoping it helps!
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    Antidepressants

    I’ve been on Wellbutrin (aka the Wells) SR for about 20 years. I’ve found the full dose of 300mg was what has worked best for me. I tried the XL once daily formulation but it gave me a headache at 300mgs - 150 was no problem. I’ve tried varying doses. I couldn’t function without, I become not...
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    Tests

    I am on a 4 week schedule for Remicade and labs are done every time. Cbc, liver panel, and now iron studies since i’m bleeding constantly (slowly).
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    Exhaustion from Entyvio, Iron supplementation, post-Prednisone taper or Adrenal issues?

    Yes. 100% better. Oral iron is for the birds. I actually don’t wait anymore until my HGB declines significantly. We monitor ferritin now, the body’s iron stores.
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    Best IBD Centre in US--Your Recommendation for Young Adults

    UCSD. so happy I live in town and have the best right here. My doctor, Brigid Boland, trained under Sandborn...they all did there at UCSD's IBD center. You can see him once but thereafter you deal with a NP, so didn't want that and prefer a female doctor anyway.
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    Turmeric / Curcumin

    Curcumin was definitely bad for me. I was having constant pain on it and had to discontinue before a double balloon procedure and felt immediately better off it!!
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    Curcumin

    Who is using Curcumin for their IBD? I’ve been taking a fairly low dose, only 500mg/day. But in researching more it looks like the therapeutic dose is quadruple that amount, 2g/day. https://www.karger.com/Article/FullText/336720 I’m running out of medical options and have now been thinking...
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    Soy protein isolate

    Does anyone take soy protein? I saw this study and decided to try it: https://www.sciencedaily.com/releases/2017/04/170426130331.htm I was immediately better, like within 24 hrs! Been on it 4 days now and things have calmed way down. I use NOW Sports unflavored Soy protein isolate, blended with...
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