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Anyone suffering from Crohn's disease?

Discussion in 'Gastrointestinal and Urinary' started by Nielk, Oct 27, 2010.

  1. ellie


    After a year here I am, yes I have cfs and crohn's ileitis. I understand how awful it is to cope with a crohns flare up, surgery etc with cfs co running, how on recovery from one disease of crohns the second cfs keeps you inbed, and how misunderstood and frustrated you become due to no one understanding you, yes you are also the first person I have talked to with both diseases do get in touch sally @msrh.freeserve.co.uk
  2. Nielk


    Hi ellie,

    Welcome to the forum.
    I'm so sorry that you are suffering from both of these illnesses.

    I was wondering if there was a connection between the two.
    One thing I know is that staying on a gluten free and dairy free diet has helped me.

    At this point, I'm not taking any medications for Crohn's because I haven't had a flare up for a while but I was on
    prednisone for many years.
    I wonder if being on steroids for such a long time didn't mess up my immune system and thereby I acquired CFS.

    Did you have any surgeries?
    How are you feeling now?
    Are you suffering from both at the same time? I can't imagine going through that.

    Please let me know how you are doing.

  3. *GG*

    *GG* senior member

    Concord, NH
    Anyone tried LDN for Crohns?

  4. Mya Symons

    Mya Symons Mya Symons

    I am also wondering how many people with CFS also have Chron's? How about diverticulitis? I am still getting over a post-operative pelvic infection after a hysterectomy. However, now they are telling me my sigmoid colon was very swollen and inflamed before the surgery. I had a colonoscopy to rule out perforation or ulcerative colitis-which were ruled out. My colon is still very swollen, but it is not the inside lining. Chron's would explaing alot. I had really bad pains and digestive problems in my early twenties that seemed to go away (or at least get milder) for awhile and just recently came back full force. I've been looking up information on Chron's on the internet, however, there doesn't seem to be a clear diagnostic test. It seems like you have to have several noticeable flare ups before it is diagnosed. Does anyone know an easier way to get a diagnosis such as a blood test? Also, I am assuming if I had an infection from diverticulitis or some noticeable pockets in my intestines from diverticulitis, the gastroenterologist would have told me. But, you all know doctors--maybe not. I think I'll be ordering my records.

    P.S. The doctor told me to take Align and saccharomyces boulardi to keep the bad bacteria from overgrowing while I'm on antibiotics and, he says, it also helps with IBS. Has anyone else ever tried these and have they worked well. I just started taking them and they do seem to help a bit so far.
  5. Nielk


    In the 70's when I was diagnosed with Crohn's, I had to take tests that involved swallowing barium and then they take a series of x-rays as it goes down the digestive system.They also did a barium enema. By studying the x-rays, they were able to see inflammation in my Ilium. Today, they can see it through an endoscopy exam and even take a biopsy from the area to
    make a definite diagnosis. If you do have Crohn's (which I hope you don't), the doctors will probably put you on a cortisone regiment as well as other medications.

    All the best, Nielk
  6. richvank

    richvank Senior Member

    Effective nonprescription treatments for Crohn's disease and ulcerative colitis

    Hi, all.

    As unbelievable as this may seem, a former coworker of mine, Dr. David Gregg, discovered inexpensive effective nonprescription treatments for Crohn's disease and ulcerative colitis several years ago. I know they work, because I personally knew two of the first people who were helped by them (one of them being my late father-in-law who got relief from Crohn's after suffering from it for over 20 years). Dave's website is www.krysalis.net He tried to encourage gastroenterologists to try these
    treatments, but they were not interested.

    Briefly, the treatments are DMSO (dimethylsulfoxide), melatonin, the Specific Carbohydrate Diet (SCD) developed by the late Elaine Gotschall, and pig duodenum powder. I don't think the last one is still available, at least in the U.S. but the others are doable. Dave found that at least one of these treatments would help every case of these disorders that he encountered.

    I encourage you to read the emails posted on his site from people who tried these treatments. The testimonials there are for real, and some are very dramatic. Dave doesn't make any money from these treatments. He used to sell the pig duodenum powder, but has retired from supplement sales, and I don't think anyone else has picked that up.

    I hope this is helpful. Crohn's and ulcerative colitis are horrible diseases.

    Best regards,

  7. Nielk


    Hi Rich,

    A big thank you for referring this information. I sounds amazing!
    I wish I knew about this before I poisoned my body with prednisone and Azulfadine for 15 years.

    It's also interesting to note that he found subdivisions of Crohn's patients. Meaning that not all people suffering from this illness have the same cause and depending on the cause, he found supplements to help them.

    I would imagine that CFS patients are similarly affected by different cause and thus need different treatments to
    make them better.

    Thanks again,
  8. fibrodude84

    fibrodude84 Senior Member

    I have very severe crohns disease which is why my CFS was dismissed for so long. I think a number of people with Crohn's may have CFS or fibro and are just getting it blamed on the crohns or colitis. The inflammatory bowel disease (IBD) drugs all carry added fatigue generally. The immunosuppressive meds make us tired and more susceptible to infections. It's interesting that some are using crohns meds for CFS but I don't think it will work for the vast majority.

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