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    Old 04-05-2004, 09:43 PM   #1
    Join Date: Sep 2003
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    cookie51 HB User

    I Would Like To Know If Anyone Out There Has Crohns Disease? My Niece Was Just Diagnoised With It, They Said About 3 Feet Of Her Bowel Was Effected, She Is So Sick All The Time, Also She Had To Get 3 Pints Of Blood Because Her Count Was So Low, And Tommorow She Has To Go Into The Hospital Because Her Count Is Really Low Again. Please If Anyone Has Any Answer That Could Help Her We Would Really Appiciate It. She Is Taking All The Meds. They Gave Her But Noting Is Helping.
    Thank You All Cookie

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    Old 04-06-2004, 03:40 PM   #2
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    Post Re: Help-crohns

    Hello Cookie,

    My husband has suffered from crohns for many years .. When he was 29 yrs old he had his first surgery to remove 18 inches of his intestines.. He has blockage again so he has to try some new med's soon and maybe more surgery..

    He's been on alot of bowel meds like Questran and Imodium for many many years... Also he takes Pentsasa for the crohns ..

    Plus he has uclers and has to take Prilosec..

    He has spells of pain and the sick feeling through out the year...

    Years ago they didnt have much for med's it took many years for them to come out with different kinds ..

    What med's do they have your Niece on ? Is she running to the bathroom alot or just in pain?

    Did they have to do any surgerys to remove any of the bad intestines ?

    How did things go for her when she went to the hospital ??

    Talk soon Lolly

    Old 04-06-2004, 09:18 PM   #3
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    cookie51 HB User
    Re: Help-crohns

    Hi Lolly
    Thank You So Much For Your Reply, We Want To Know As Much As Possible About This Terrible Problem. Right Now She Is In The Hospital, They Put Her In This Morning Because Her Count Is So Low They Are Giving Her 2 Pints Of Blood. She Keeps Losing Blood From Her Bowel. They Did The Colonoscopy And Said She Has 3 Feet Of Her Bowel Has The Crohns, She Has Lost So Much Weight, We Are So Scared, We Are Praying They Can So Someting To Help Her. She Is On So Many Meds. I Dont Know What They Are But I Think Some Are Antibiotics Other Then That I Dont Know. I Wonder If They Took Out That Part Of Her Bowel That Is Infected If That Would Help, And Even If They Did That Would It Come Back? We Are New To This And If We Can Get Some Insight In What We Are Dealing With, At Least We Would Be More Informed And Have More Questions To Ask And Take It From There. Once Again I Thank You For You Time, And Hope All Goes Well With Your Husband.
    Thank You Cookie

    Old 04-06-2004, 09:36 PM   #4
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    plymouth HB User
    Re: Help-crohns

    New Scientist magazine is reporting that a new treatment for Crohns will become available next month in Europe. The trials were conducted in the United States with a remission rate of 70%.

    Gastroenterologist Joel Weinstock of the University of Iowa invented the treatment, a drink containing whipworm eggs, called TSO, short for Trichuris suis ova, made by a German company called BioCure.

    Weinstock came up with the idea for the treatment after noticing that crohns is rare in third world countries where parasitic infections are common. He believes that crohns is the result of an immune system in overdrive for lack of an infection to keep it busy.

    If you prefer a dietary approach, Breaking The Vicious Cycle, Intestinal Health Through Diet by Elaine Gottschall B.A., M.SC

    Diet for Crohn's Disease, Ulcerative Colitis, Diverticulitis, Celiac Disease, Cystic Fibrosis and Chronic Diarrhea.

    The diet is strict, but it works.

    Old 04-06-2004, 10:47 PM   #5
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    Re: Help-crohns

    I thought Crohn's disease has alot to do with being inherited?? Please Correct me if this is not right?

    Old 04-06-2004, 11:57 PM   #6
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    Re: Help-crohns

    Hi Cookie,

    I was diagnosed with Crohn's a couple years ago and spent a week in the hospital although I didn't need surgery. I was very sick, lost a lot a lot of weight and I was in a lot of pain. However. I'm here to say there's light at the end of the tunnel. First off if she's been diagnosed you're doing great, that's half the battle. When I was in the hospital they put me on intravenous feeding because I was having trouble keeping food down. They also put me on strong steroid for the internal inflammation. I continued to take steroids for a few months and tapered off slowly. Since then I've been on 6MP which is an immune suppressant and I haven't had a bad flare since. They say the first time you get sick will always be the worse because you don't know the signs to watch out for. In the future she'll know she's flaring and can immediately see a doctor.

    The only way to completely remove crohn's is to take out all of your bowels and use an external poop bag. Instead, doctors tend to take small portions at a time and since your intestines are veryyyyyyyyy long, a couple feet doesn't make much difference. So surgery isn't a bad thing.

    Since she's young it will be good to give her a lot of emotional support. You can tell her there are a lot of worse things in this world to have than Crohn's and you start to realize everyone has some type of chronic disease, mental or physical. Some people suffer from chronic bad attitudes and there's no cure for that either. It's just something you live with, like some people have to live with going bald, losing their teeth or bad skin. She has to live with a little bowel disorder and you get used to spotting bathrooms. It becomes a talent She'll get through this and enjoy life all the more.

    Old 04-07-2004, 07:59 AM   #7
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    Re: Help-crohns


    Yes, we been told crohns you get from inherited but we dont know of any one in my husbands family that has or had it ..

    But, we are worried our daughter or grandchildren will get it ..

    From what i understand if a person is blocked they will do surgery to remove the bad intestines...

    Some people may be left with one of them bags my husband had wanted one with his 1st surgery 20 years ago i said you are crazy to want one ..
    Thank god he didnt get it ..

    hes had 20 good years of not having to repeat surgery thank god ..
    But, yes he gets spells lots of times thru out the year sick feeling, and cramps that pass in time and ect and ect..

    He can be on the toilet alot also.. thats why he takes so much meds for the bowels..

    When we didnt know at first what was wrong he was bleeding really badly also and they couldnt figure where it was coming from..Plus, he was on the toilet alot too ... And he lost alot of weight also..

    Like i said before they sort of acted like they didnt know much about crohns yet.. he was in hosp for 2 wks and he lost count of the 1st week he has no clue what even happened to him ...

    Cookie does your neice use the bathroom alot also?? Has she ever tryed any of the bowel meds to slow it down ??

    But, then they got to stop that bleeding on her ...

    Now, my husband is about blocked again so we are to try some new meds if that dont help heal the area i guess surgery again to remove the bad area..

    Shorter you go more bowel problems you seem to have ..

    My husbands stomach is so hugh hes so bloated cause of the blockage ...

    Seems to be lots of stuff on the internet that will help you understand about crohns also..

    Cookie I hope they can help your neice soon ...

    Take Care

    Prayers are with you all ..


    Old 04-07-2004, 03:00 PM   #8
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    cookie51 HB User
    Re: Help-crohns

    Update On Niece,
    First I Want To Thank All For Your Response To My Nieces Problem.
    She Had A Cat Scan Today, And Yesterday She Had The 2 Pints Of Blood. She Loses The Blood In Her Bowel, She Is Really Sick In The Morning, As The Day Goes By She Gets A Little Better. I Just Read There May Be A Pill Coming Out Soon That Helps With Crohns, God I Hope That Is True, There Must Be So Many People Suffering From This, I Pray They Find A Cure. Any Thoughts Or Ideas That Would Help Lead Us In The Right Direction In Getting Her Help Is Greatly Appreciated. I Want To Thank Everyone Who Has Written And Given Advice , I Think The Best Way Is To Talk To People Who Have Gone Thru This To Help With Help And Direction And Any Kind Of Relieve She Can Get.
    My Prayers To All Cookie

    Old 04-14-2004, 09:28 AM   #9
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    haylee31 HB User
    Re: Help-crohns

    I do not know alot about crohns but my best friend has

    had it for 23 years. She is put in the hospital 1 or 2 times

    a year do to flare ups. I know she has had { alot } of her

    intestine and polyps removed over the years. I wish your

    neice the best of luck. Haylee

    Old 04-14-2004, 10:41 AM   #10
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    Re: Help-crohns

    I also have crohns diagnosed 3 years ago. I'm on imuran and asacol to try to keep it under control. Sometimes the meds work, sometimes they don't. I tend to end up in the hospital on average once or twice every year. As for crohns being inherited, it is not actually inherited but is known to occur in families. Too me that would mean it is inherited but the doctors say no, thats not what it means. I had to have a colostomy temporarily (the bag) while a fistula healed and I would never go that route permanently!! The bag won't permanently cure crohns anyway. It can occur anywhere from your mouth to your anus. Good luck with your niece and let us know how she is doing.
    Crohn's disease, scoliosis, chronic myofascial pain, migraines, Osteoporosis, Trigeminal Neuralgia.

    Old 04-14-2004, 12:05 PM   #11
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    cookie51 HB User
    Re: Help-crohns

    Tham\nks for updates on people with crohns, my niece did get 2 pints of blood last week, they put her on a new pill for abdomin pain, and she seems alittle better. Will update on her progress. Thanks again all cookie

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