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  • Need Someone who knows about Crohns Disease

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    Old 04-24-2003, 05:00 PM   #1
    N2golf
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    Post Need Someone who knows about Crohns Disease

    I need some info on Crohns. Is it fatel? What are the symptoms? I read about it from Mayo clinic's site, but, the symptoms mimick other thing as well, so I thought I would ask someone who is in the medical field or someone who has it. I was told that if you have rectal bleeding with Crohns, you'll know it! It'll be in the toilet, on the toilet paper and in the BM...is that true? I was also told that you bleed often with Crohns...is that true? Do you have nausea, fatigue, fever, dizziness, lightheadedness???? I'm trying to differentciate the symptoms between Crohns and IBS, IBD, and even Colon cancer. They all have SOOO much similarites. Thanks for your response!!!

     
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    Old 04-24-2003, 05:29 PM   #2
    AA21
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    It's only fatal in the most serious cases which is very very rare these days. As for the blood, you don't even have to have rectal bleeding with Crohn's. It depends on what part of your bowel is affected. If you do get rectal bleeding, there is no certain amount that you have to have. If you get mucus in the stools, a fever, diarrhea or loose stools, then these could be signs. Some people with Crohn's don't even get these, they might just have perianal disease with a fissure or fistula.

    The only way to be certain that you have the disease is by getting an upper GI and a colonoscopy. A lot of diseases or conditions can mimic it.

     
    Old 04-24-2003, 05:32 PM   #3
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    Also you can get nausea, and feel light-headed, and tired. A lot of people with Crohn's feel tired because they are anemic from losing so much blood, and from not having nutrients absorbed in their intestines. However, once again, this occurs with many other illnesses.

     
    Old 05-01-2003, 05:03 PM   #4
    tattooedmonkey
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    I have Crohn's disease, a pretty serious case, and it is not fun. I bleed alot, horrible pain in the abdominal area, always weak, dizzy, tired, nausea every time I eat, you name it. My bowel is stricturing and my illeum is ulcerated. Probably won't get any better. Between prednisone and pain meds I keep it under control and can lead a half way normal life. Without them, my life can really suck!! Surgery is inevitable once the bowel scars more, but I'm trying to put it off as long as possible. With treatment, it can be controlled, but doctors are mystified by it. Often they push medicines on you that are extremely expensive that have side effects worse than the Crohn's. Getting it diagnosed is hard enough, have to have the colonoscopies, endoscopies, etc to make sure that is what you have. Hope this kind of lays it out... peace.
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    Old 05-02-2003, 06:55 AM   #5
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    TatooedMonkey,

    Has your gastroenterologist ever suggested Imuran or 6MP for your Crohn's disease? They are immune modulators that work specifically on the T-cells in the intestines.

    I take it you have CD in the colon as well as the small intestine? Or just in the colon and the cecum/ileoceca valve area?

    It sounds like you are steroid depenedent and the immune modulators are the ONLY hope for getting you off the steroids.

    If you read this yet today 02 May there may be time yet for you to check the archives at the Crohn's & Colitis Foundation of America Ask the Specialist forum. Today is its last day. Yesterday was the last day you could post a question and today the Forum is shceduled to be GONE for good. It was still up and accessible at 7 AM today.

    Good luck and God bless!

     
    Old 05-02-2003, 06:56 AM   #6
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    Sorry. [url="http://www.ccfa.org"]http://www.ccfa.org[/url]

    Look to left
    Click on Ask the Specialist

     
    Old 05-02-2003, 10:01 AM   #7
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    Hi N2Golf
    I have been diagnosed with Crohn's since November. I am lucky though because I have a very mild case with only the last 6 inches of my small intestines affected so far. I am also 11 weeks pregnant right now. I have only had one flare up this past summer and it took them about 6 months to diagnose what I had. I have been on Asacol, 3 pills/3times/day since November and everything has been fine. The website mentioned above is great for getting information about Crohn's. You can also do some great searches about all of the different IBD out there and then you can compare the symptoms to try to pin point what you have. Good Luck and if you have any questions that I can help you with please do not be afraid to ask. I am constantly reading up on this disease since lucky us it does not ever go away.

    Good Luck

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    Old 05-02-2003, 02:11 PM   #8
    N2golf
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    Lissie,

    Can you tell me what symptoms that you have when you have a flare up? How did the doctors diagnose you with Crohns? Is this something that you can live with, without treatment as long as you can tolorate it?

     
    Old 05-02-2003, 09:54 PM   #9
    Ladybug214
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    Hi! I have had Crohns for 11 years. I was diagnosed when I was 18 years old. It took the doctors a year to figure out what was wrong with me. It was only after an emergency surgery (appendix) that they found I had Crohns. I have been on everything possible, and had two surgeries. One removed part of my small and large intestine and the other to remove scar tissue. I was in remission for 5 years until 2003. We thought at first that it was just another flair up, but after a colonoscopy showed I had reaccurent disease. It is mainly in the small intestine. Right now I am on Imuran, Pentasa, Cipro, Flagyl and Darvocet for pain. I dont know what sucks more the pain I have or all the medications I have to take. I take 30 pills a day. The doc said that if I am not any better in a few weeks we will try Remicaid.
    I am married, have a little boy and hold a full time job. You can have a normal life with this disease but it takes a lot of work and a really great doctor.
    Hang in there and keep your head up! If you have any questions I will do my best to help out! Best Wishes for a pain free day to all!!! One day at a time!

     
    Old 05-05-2003, 08:18 AM   #10
    Lissie2414
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    Hi N2Golf
    The symptoms that I had was severe diarhea and after I ate anything I had severe cramping about 2 hours afterwards. It happened when I was digesting my food. Once the food it the small intestines then I was in complete agony. I lost about 25 lbs in 3 weeks too and I am not a big person so that was not good. My anemia which I have had for years and been borderline with got worse and was very bad. I had a high sedementation rate which meant that there was a swollen infected part in my body but they just did not know where. I think that if I had not been trying to get pregnant that I would have just lived with it and not been diagnosed for years since it is not that bad with me. But because of my trying to conceive I wanted to make sure I was perfectly healthy and I stopped trying until I was diagnosed and told it was OK to start again. I do think that the longer you go without treatment the worse it will get. I am on the mildest med and I have never had to take the steroids at all. They say that as long as I am careful with what I eat and take my meds that I should be able to control my disease and keep it in check. I do need to have a colonoscopy at some point but that will not be until after I deliver. They want to see if any part of my colon is affected as well. At this point they do not think so. I have not had another episode since this summer but those months of not knowing and all of those tests were awful. If I were you I would try to find out right away because the sooner you find out the easier it is to live and deal with it. If there is anything else just let me know. I will love to help you. A good doctor also helps.

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    Old 05-05-2003, 04:04 PM   #11
    N2golf
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    It sounds as if though Crohn's is diet related and therefore, I would love to find a Naturopathic Dr. who could help. I certainly don't live in agony (knock on wood)The thing that confuses me the most, is that the radiologist said that there was "uncertain small bowel wall thickening in the left quadrant" Other than that, I have more IBS symptoms than anything. I don't know, I think if I do have it, it may be so mild that they can't tell or see it. I certainly don't want to keep going through test after test. It sounds like a good Naturopathic Dr. would really do me some good.....finding one is going to be a challenge!

     
    Old 05-05-2003, 04:09 PM   #12
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    You know, the strange thing is, when I got an xray from the regular Dr. He said that I had an inflamed muscle and put me on anti-inflamitories. The radiologist said, that there is a possible small bowel thickening in the "upper" left quadrant. Same place as the muscle inflammation. Now, if Dr's can't tell the difference in something that elementary on an xray, it doesn't give me much faith in them for much else. I'm SO FRUSTRATED!

     
    Old 05-13-2003, 12:50 PM   #13
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    I recommend that everyone here look into a probiotic product called Primal Defense. It is easily available online or at any Vitamin Shoppe. The founder of the company had serious Crohn's and was healed through diet changes and the product he helped develop. You can do a search and read his story!!!

    I take Primal Defense myself for yeast/candida and have been helped tremendously by it. - Al


    [This message has been edited by moderator4 (edited 05-17-2003).]

     
    Old 05-16-2003, 07:33 PM   #14
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    mY MOTHER HAS HAD THIS DISEASE SINCE I WAS 5 YEARS OLD. I AM 42 NOW. I INTRODUCE HER TO THIS SITE. I KNOW SHE HAS WRTTEN TO SOME PEOPLE. I'M SURE WHAT HER NAME IS ON THIS SITE. HER REAL NAME IS SHIRLEY.
    I E-MAIL HER THIS PAGE.
    VICKY

     
    Old 05-23-2003, 03:05 PM   #15
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    The causes of IBD is not actually known right now, the two major ones within IBD is Crohns and Ulcerative Colitis, and of those two, Crohns is the nasty one. There is no cure for either. Although (my understanding anyways ) Technically, In Ulcerative colitis, removing the damaged part of the large colon, is considered a cure. UC only effects the large colon.
    But the damaged part has to be really damaged.
    For Crohns, I know that there has been a medical experiment that is still possible on going, that a doctor introduced small, hard to see with the naked eye, worms and/or parasites, To treat at least the symptoms of Crohns, one test patient was doing quite well and has suffered little to no symptoms from her Crohns.
    3rd world countries have the least amount of problems with IBD's because our intestines are rather more sterile then theirs are, this doesn't mean u get to go drink sewage water or swallow earth worms..
    And even though the patient, who swallows the uhhh worms, are in protective capsules, the thought alone would make most people gag.
    Diet and stress cause havoc with IBD's, but do not actually cause the diseases. It appears that people seem to tolerate Pentasa the best drug wise. But @250mg each and the fact you have to take 8-16 a day, makes it really difficult places them in a pill box, for each 7 day week. There is one issue I will mention, and it isn't to get anyone's hopes down, I was (still am actually) being treated for Ulcerative Colitis with Pentasa, at the time I couldn't seem to tolerate anything else, the second year when I went in to remission, and the doctor decided to pull me off of pentasa, after a month, I was in agony, so the doctor put me back on.. by the end of the second year, issues started coming up again.. by the first quarter on this year (2003) My problems began all over again, 3 weeks ago I had my third colonoscopy, the UC had returned. My doctor said my stress I have been having in the last 6 or 7 month may have brought it back on. The only problems were, I haven't had any stress in the last 6 or 7 months and I was on the pentasa when the UC became active again. I tried asacol, only to be left deathly ill after taking it, and Now I am placed on Colazal. You take 3 a day. As for side effects, worse than the asacol, mainly nausea, nasty headaches and something has messed my frequency of BM's..
    With all that is going on in your colon and no matter how bleak things seem, try to think positive.. negativity doesn't help u, and people tend not to want to associate with you when you are. The medications prescribed can put a lot of patients in remission.. so never give up no matter how bleak issues might appear to u, and though I realize this is going to sound odd, but try to remember no matter how bad off you are, there is always someone worse off than you are.
    (btw, for people who need to have a colonoscopy, preparation is worse than the actual test itself..and yes, they do give u drugs..If you find yourself nervous the day before, ask the doctor if there is anything you can have to make it easier to deal with it. But it's really not that bad. )
    (ok, no one throw rotten tomatoes at me please.)

     
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