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  • May have Crohn's

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    Old 09-08-2004, 11:11 AM   #1
    NodiGoiterGirl
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    May have Crohn's

    Hey everybody,
    I know I don't come here as often as I should, and it seems when I do it's just to wine. So here goes.....
    First off, I feel like a hypocondriac. I know most of us have felt that way. I feel like I'm always sick and that people are starting to look at me like I'm just lazy. That really makes me angry. I went through the whole hashimoto's thing, had my thyroid removed. I felt good for a while except for horrible headaches. I had my wisdom teeth removed and the headaches went away. Then three months ago I started with the stomach problems. Took me six weeks just to get into the Gastro, not uncommon I know but still.
    My half brother on father's side has Crohn's just diagnosed this year, and my aunt on the same side has had colon cancer. I have a second cousin on my Mom's side with Crohn's also. My Mom even thinks dad had some bowel disorder come to think of it. I keep remembering times when my stomach just didn't feel right, the most recent two years ago on a trip to Florida. It started the same way as this time. I went to the Doc said I had discomfort on my left side and he promptly told me I didn't have anything over there and said it must just be a virus. I was so mad. So I dealt with the discomfort and all that until it just went away. Now it's back but has been a lot worse. I have been on different antacids with Nexium doing the best for me. Still I have days where my stomach is just messed up and I have to call into work, like today. I work with a bunch of guys that I think are getting tired of me being sick all the time. I have all the tests this month starting with abdominal CT scan on Friday followed by endoscopy and colonoscopy later this month. Hope it's just an ulcer from taking Ibuprofen for my back problems a while back. Yes one more problem. I know I don't have it that bad, and that I should be tougher, but today I'm just down. And that's the way it is.
    Thanks for listening,
    I appreciate these boards.

    Nodi

     
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    Old 09-08-2004, 11:30 AM   #2
    Gopherhead
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    Re: May have Crohn's

    Sorry to hear you're having such a rough run of it, Nodi. My husband has Chron's so we know a little about it in my family. It could be that you do have it, the tests should confrim. Have you had any bloodwork done? There are a few simple tests that could also aid in diagnosing this - Chrons is an autoimmune diseas, just like Hashi's is and they do travel in families.

    I know from personal experience that avoidance of certain foods can make a difference in how you feel. My husband was very sick when first diagnosed over 10 years ago (6'3" and 145 lbs). A few years ago his meds stopped working and he started feeling sick again - they were talking about putting him back on prednisone (steroids). About that time I started eating very differently; I cut out all refined carbs (white flour and white sugar in particular)... He decided to join me and much to our astonishment within 4 days of not eating these foods his symptoms went away. He has been symptom (and medication) free since 2001, just by not eating wheat (wheat is what triggers it for him; he can eat all the other stuff he wants [and often does ] but wheat sets him off big time). His specialist was floored, but we were not - my mother has rheumatoid arthritis (also an auto immune disease) and when she stays away from wheat and night shades she is 90% symptom free as well.

    There exists a link between autoimmune disease and leaky gut syndrom (LGS). LGS is most often the result of excessive consumption of, yep, you guessed it, wheat. You might feel a lot better while waiting for your diagnosis if you avoided wheat - it's worth a shot.

    Nat
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    Old 09-08-2004, 01:21 PM   #3
    NodiGoiterGirl
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    Re: May have Crohn's

    I never really ate a lot of wheat. Doctor told me to eat wheat so I went to the store last night and got wheat bagels, wheat bread, wheat crackers. Geesh. I will see how it affects me and if it is not good I will not eat it.
    I am changing my diet to lowfat highfiber, hopefully it won't be too difficult. I haven't had a cigarette since Saturday so if I can do that, I can change my diet
    I know it will be okay, it's just another learning process.
    Thanks!
    Nodi

     
    Old 09-08-2004, 05:38 PM   #4
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    Re: May have Crohn's

    Oh Nodi.... {{{{hugs}}}} to you, my dear. You've given hope to so many folks here.... Don't you give another thought to your need for a kind word today.
    I know two young people with Crohn's, and they've both been in remission for a long, long time... Doing quite well, in fact.
    I hope you don't have it, but if you do... try not to despair. Feel better soon... and good luck giving up smoking!

     
    Old 09-08-2004, 06:56 PM   #5
    hyperone
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    Re: May have Crohn's

    I was diagnosed with Crrohns approximately 20 years ago after my appendix was removed during surgery for endometriosis. It was removed as a precautionary measure since the enometriosis caused severe pain and they wouldn't confuse this pain with appendicitis. Well my pathology report came back that it was enteritis and with some follow up tests they determined I had Crohns. This didn't surprise me since my mom and grandmom had it. The good news is that I have been in remission most of the past 20 years. Occasionally, I will have flare ups but they are more like irritable bowel than inflammatory! The bad news is since I have had other autoimmune illnesses like graves, etc. diagnosed. I hope you do not have Crohns, but maybe irritable bowel which is more easily treated. Crohns can be treated with steroids or a drug called asulphadine (sp?). It is not a pleasant illness, but with appropriate treatment and a good doctor many people do well. A good diet may help. Until you are officially diagnosed I wouldn't sweat it though. Good LUCK!

     
    Old 11-10-2004, 07:56 PM   #6
    dallas222888
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    Re: May have Crohn's

    Trial Drug Looks Promising for Crohn's
    November 10, 2004 04:02:36 PM PST , HealthDay

    By Ed Edelson
    HealthDay Reporter

    WEDNESDAY, Nov. 10 (HealthDayNews) -- A genetically engineered antibody that blocks an immune system molecule has produced promising results in its first use against Crohn's disease, researchers report.
    The antibody targets interleukin-12, whose proper purpose is defending against infection. In Crohn's disease, a flawed response to bacterial infection causes painful bowel inflammation; an as yet unidentified genetic factor makes the system go wrong, setting off a chain of molecular events that results in inflammation.

    Although the study was designed only to test the safety of giving the anti-interleukin-12 treatment to human patients, "it was really gratifying to see that you could show a significant response" in the form of reduced symptoms, said study author Dr. Peter J. Mannon, head of the clinical inflammatory bowel diseases research unit at the National Institute of Allergy and Infectious Diseases. The report appears in the Nov. 11 issue of the New England Journal of Medicine.

    Crohn's disease is one of two conditions that cause chronic inflammation of the intestinal tract and which together affect about 1 million Americans. The other is ulcerative colitis, which usually attacks the large intestine; Crohn's disease generally attacks the small intestine.

    Research has indicated that the attack in both diseases is due to an improper response by immune system cells, which release excess amounts of cytokines, molecules that attack the intestinal cells and cause inflammation. One cytokine-blocking antibody, infliximab (brand name Remicade), which prevents production of a cytokine called tumor necrosis factor alpha, has been approved for treatment of Crohn's disease. It has been found to be only partially effective.

    "We can think about inflammation as a chain reaction," Mannon said. Tumor necrosis factor alpha comes into action toward the end of the chain, he said, and "if we can intervene early in that process, we might have more benefit."

    Interleukin-12 acts "higher in the inflammatory pathway," and blocking it can be more effective than blocking tumor necrosis factor, said Dr. Lloyd Mayer, chairman of the immunobiology center at Mount Sinai School of Medicine in New York, which participated in the trial.

    The study included 79 patients with Crohn's disease. Some got seven weekly injections of 3 milligrams of the antibody per kilogram of body weight, some got injections of 1 milligram of the antibody per kilogram of body weight, and others got an inactive substance.

    More than 70 percent of the patients who got the higher doses of the antibody experienced remissions, the researchers reported. Blood tests showed decreased production of interleukin-12 and other cytokines, such as tumor necrosis factor alpha, in those patients. There were no significant side effects.

    The study is just a starting point, Mannon said, because the small number of participants makes it difficult to assess the lasting value of the treatment.

    "There may be a powerful underlying effect," he said. "That needs to be tested in a larger study."

    More information

    Learn more about Crohn's disease from the National Digestive Diseases Clearinghouse.

     
    Old 11-11-2004, 10:26 AM   #7
    NodiGoiterGirl
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    Re: May have Crohn's

    Thanks for the info,
    After all my colon tests they found that I have a spastic colon, so IBS. my stomach was swollen and my colon was swollen, but apparently the gastro didn't think this was due to crohns since the biopsies of the polyps were normal. He said the swelling was probably due to the colonoscopy prep I had to do.
    The IBS may be aggravated by a pelvic mass that they found during my CT scan in September. First the CT scan said fluid filled, Now the ultrasound and transvaginal ultrasound show a complex pelvic mass the possibly involves the ovaries. I have an MRI on the 19th, my birthday.
    I'm worried because it was suspicious in the first place becuase I'm on birth control and shouldn't be getting cysts.
    Thanks again
    Nodi

     
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