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Anyone else with Crohn's or Ulcerative Colitis?

Discussion in 'Gastrointestinal and Urinary' started by fibrodude84, Jul 24, 2014.

  1. fibrodude84

    fibrodude84 Senior Member

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    I suffer with severe crohns disease which also causes fatigue and it's why doctors dismiss my fatigue as a symptom of crohns even though it's so severe I know it's CFS or fibro. Rheumatologist says fibro but my main symptom is deadening weakness.

    Anyways, anyone else with Inflammatory Bowel Disease (crohns or UC)?
  2. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I have IBS-C which came out of nowhere in 2010. I do not have FM. I don't think it has anything to do with my fatigue level since I am having some success with antivirals and immune modulators.

    BTW, Rheumos. don't know how to treat ME/CFS IMO. You're better off trying to find someone to help with that.
  3. fibrodude84

    fibrodude84 Senior Member

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    Irritable bowel syndrome is not the same as inflammatory bowel disease. IBS is uncomfortable and distressing but it doesn't cause structural damage like IBD which involves very serious medications, surgery and puts you at risk for many complications.

    I'm not looking to downplay IBS but people often confuse them and they are totally different.
  4. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Consider me educated
  5. fibrodude84

    fibrodude84 Senior Member

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    Yeah, it's a bit frustrating for many of us who have IBD but I don't blame people for not knowing. Like ME/CFS/Fibro it's all lack of education and these are all serious conditions where the body is out of whack.

    I agree with you on rheumys not really getting CFS. I think I will need to pay hundreds and goto someone who does because I can't take this anymore.
  6. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Also blame it on serious brain fog and my ability to read or comprehend worse than usual today.

    I see an NP who I pay out of my pocket. It's worth it for me since there is no one in my plan who has a clue.
  7. barbc56

    barbc56 Senior Member

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    My best friend since childhood developed ulcerative colitus in her teens. She was very ill and almost died several times. At age thirty, all symptoms cleared and other than having an illiostomy was fine.

    Unfortunately, her liver enzymes were elevated for a year before it turned out she had developed primary sclerosing cholangitis and at the same time cholangiocinoma and died five months later. Her doctors never mentioned this and before she died she asked others to spread the word to those with ulcerative colititis to have frequent liver enzymes checked. If I rememer correctly PSC is also associated with Crones and other serious digestive disordered.

    I don't know if her chances would have been better had they found this earlier. It might have prolonged her life but it's a very agressive cancer.

    I am posting this information in loving memory of LD.

    Barb
  8. fibrodude84

    fibrodude84 Senior Member

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    I'm so sorry to hear about your friend. That's kind of you to spread the word. Sadly many of the immunosuppressors are heavily toxic on the body and the liver and you are right its critical to monitor that.
    barbc56 likes this.
  9. Enigmatic

    Enigmatic

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    I have Ulcerative Colitis. First visited me in the mid 90's then went away until 2011/2012 when I was hit again a few times in succession.

    Had been in remission for a couple of years now and made lots of changes in my diet and life that should have improved my chances of it not returning again. Unfortunately, it has appeared again in the last couple of weeks just as everything else seemed to be improving following the @Freddd protocol.

    Hoping this latest bout is somehow part of a healing process.
    Nielk likes this.
  10. DeGenesis

    DeGenesis Senior Member

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    Do antibiotics temporary relief any of your IBD symptoms? Some people think SIBO is a cause of both IBS and, eventually down the road, IBD. I don't know myself but it would be interesting to hear people's experience with antibiotics.

    I don't have IBD, rather very bad chronic acid reflux and IBS-C. Now chephalexin cured me for the 7 days I was taking it. Well it was a big improvement. Amoxicillin did nothing.
  11. Enigmatic

    Enigmatic

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    Hi @DeGenesis,

    I've had a number of antibiotics over the years. I can't remember the name of them all but the side effects were generally as bad or worse than some of the symptoms I was experiencing. Prednisone was commonly prescribed and I ended up on very high doses of this with little benefit.

    During the incident a few years back I just had enough of all the side effects and stopped all the medications and tried to do stuff with my diet and lifestyle and the symptoms went away. I made a decision last year that I want to avoid prescription medicine/antibiotics as much as possible as the side effects are often worse than the benefits as they kill good bacteria and contribute to leaky gut.

    I've had a couple of people mention it could be the need for more Methyl Folate plus I'm also wondering whether the Creon digestive enzymes I've been prescribed may also be having some impact on me now too.
    DeGenesis likes this.
  12. DeGenesis

    DeGenesis Senior Member

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    Thanks for addressing me directly @Enigmatic. I don't have IBD, as I've said, but I have pretty bad chronic acid reflux and I got OK results with SCD, but the smoothies kept getting me! Then a friend told me that a lot of people with gut issues have fructose malapsorption, so I switched to Fast Tract, which works a bit better.

    I hope you remit soon. I'm sure you will and I'll make way for people in the know. Cheers, I'm rooting for you!
    Enigmatic likes this.
  13. fibrodude84

    fibrodude84 Senior Member

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    Antibiotics can be used to treat extra manifestations in crohns like infections but generally antibiotics can aggravate crohns by altering the gut flora.
  14. Enigmatic

    Enigmatic

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    @fibrodude84 I've been very fortunate to be off any and all antibiotics since Oct/Nov last year. Have done a lot of work on my diet and healed leaky gut.
  15. Forbin

    Forbin Forbin

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    This was posted at the Microbiome Discovery Project's facebook page yesterday. It's part of the text from Dr. Hanson's Study IACFS/ME poster abstracts: "Altered Gut Microbiome in ME/CFS Patients"

    https://www.facebook.com/microbediscovery/posts/705332726202431


    This is interesting to me because my mother had chronic ulcerative colitis most of her adult life. A few years after I came down with ME/CFS, I too was diagnosed with CUC. However, after only a month on Azulfidine, my "CUC" mysteriously vanished and another doctor told me that I had been a misdiagnosed. He suggested that my symptoms had been caused by "Montezuma's Revenge," but I had not been much out of the house, let alone out of the country. Also, my intestinal symptoms actually began only a few months after I got ME and they had become progressively worse in the intervening 3 years. Whatever I'd had, it was clearly not an acute and transitory infection.

    Back then, my mother also related to me how she had been in a kind of inexplicable "fog" in her early 30's. She never connected this to her CUC diagnosis which was made around the same time. I truly wonder if she had been experiencing the kind of "brain fog" than ME/CFS patients experience. For her, this "fog" eventually lifted, but she had CUC for the remainder of her life.

    Anyway, it is certainly interesting to see Dr. Hanson's research finding in ME/CFS patients micorbiome alterations previously seen in inflammatory bowel diseases. This seems like an awfully important finding.
    Last edited: Aug 27, 2014
    Enigmatic likes this.
  16. kangaSue

    kangaSue

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    Just come across something called Site Specific Immunomodulators that may be of interest to those with Crohn's and U.C. Check out http://www.qubiologics.com for details of clinical trials into what they are calling a vaccine for Crohn's using a killed bacterial preparation based on a single species known to commonly infect the human colon, i.e. gut specific.
    Enigmatic likes this.

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