Crohns disease

Discussion in 'disABILITIES Community Board' started by dis2cruise, Dec 17, 2010.

  1. dis2cruise

    dis2cruise Long Island, NY

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    My dd (17) was just tested for this if she has it will she ever have a normal bowel movement again? I know her diet needs to change and she will be taking some meds for it. How does one get this...no one in our family ever had anything like this on either side of our family. So sad :sad2:
     
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  3. snorris49

    snorris49 DIS Veteran

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    Hi Cheryl. I was diagnosed with Crohn's disease about a year and 1/2 ago, so I hope that I can help with some of your questions. It sounds like your DD has been tested, but hasn't been officially diagnosed Crohn's yet? Are they also testing her for Celiac as well? When they tested me, they also tested for celiac, because they mimic each other very well and often occur in the same area of the intestines (crohn's is typically in the small intestine, though it can affect all parts of the intestine and colon).

    To be honest, Crohn's can be a drag sometimes. I have had to change my diet drastically (hard for a foodie too!), including removing gluten and dairy from my diet (turns out I'm also allergic to dairy). I also do not eat red meat very often, only occasionally a hamburger--never a steak. I eat fresh veggies in moderation, as a lot of salads and crunchy veggies and fruits can really cause tummy troubles. High fat items can also be bad.

    When I initially found out, I got hospitalized and was on liquid / soft food diet for 2 months and it took 6 + months before my tummy was really able to handle certain foods. It takes a while for the gut to start to heal.

    Every person is different with Crohn's so it's hard to give you exact answers. It will also depend on what kind of medication they put your DD on. I am on a quasi-steroid that targets the intestines.

    If you want to PM me, I can give you a lot more information about bowel issues, etc.

    Please keep us posted, and take one day at a time. You can live a normal life with Crohn's, it just takes some time and managing. Hang in there, and please let me know if I can help! :hug:
     
  4. debbiemomto4

    debbiemomto4 Mouseketeer

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    My DD that is 19 also has crohns. She was diagnosed at 16. She definitely had a difficult time in the beginning but slowly adjusted. She also does not eat many fresh fruit or vegetable. Anything with fiber hurts her stomach, milk and fried foods. She is managed on immuno-modulators - Pentasa and Imuran. She was on steroids in the very beginning for about a 6 months. She liked when they finally got her off those. Her medication does have to be watched. How is she doing? DD finally signed up with her college disability office they definitely can help.
     
  5. jlcw14

    jlcw14 Mouseketeer

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    Hi there!

    My DH was diagnosed with Crohn's on 12-29-94 - the day our first child was born. He was 23 at the time. Its been challenging for sure - he tried many different meds, some worked for a while then stopped; others didn't work at all. We have two children with autism, so that added stress didn't always help, lol! He was hospitalized several times and had three surgeries, but he also had fistulating Crohn's which is more problematic but also less common. The good news is that treatment for Crohn's has come a long way since he was diagnosed. He's been on remicade infusions for nine years now - he started at one week treatment intervals and has gradually went further apart. Now he goes every eight weeks for treatment. He's an RN and talks with many people who also have Crohn's, and he says that the quality of their condition is so much better now due to the improvement in treatments. He leads an active, happy life, with very few flares now. He's a competitive runner, a great Dad, and has a fulfilling career. Its not debilitated him, just challenged him. Best of luck to your DD!

    BTW - No one in DH's family ever had Crohn's either, but his family is laden with other autoimmune disorders....
     
  6. v.t.

    v.t. DIS Veteran

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    My DS11 had bleeding uclers in May. All the visual tests came back clear but the blood test indicates he has the markers for Crohns. Other than bleeding uclers (we think caused by cdiff infection) he has no symptoms. The dr. wants to put him on 6-MP. Does anyone have experience with that treatment?
    TIA!
     
  7. jlcw14

    jlcw14 Mouseketeer

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    Poor guy!! He's been through alot hasn't he? C-diff is tough; we actually question if my DH's Crohn's was triggered by salmonella.

    Crohn's can affect anywhere from your mouth, down to your anus. 6-mp (purinethol) is a drug that is frequently used in treating it. My DH has taken it in the past and the one thing I remember about it is that he had to have regular bloodwork because it can decrease your blood cell count (white and red and platelets) but usually this is temporary, and also because it can affect liver function.

    The one thing I'd like to try to comfort you about is the drug classes. Many of the drugs used to treat Crohn's are also used to treat rheumatoid arthritis or cancer. When I first discovered this, I panicked. I can only imagine how much more anxious I would have been if it were my child. It's just that these classes of drugs happen to have a good effect on Crohn's as well, don't let it alarm you. 6-mp is one of those drugs; it is also used to treat some cancers. It just happens to also work with Crohn's disease.

    I wish you and your family the best, and your son a quick return to health! It is a very manageable condition once the right meds are on board!
     
  8. v.t.

    v.t. DIS Veteran

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    Jenn,
    I sent you a PM.
    Thanks,Vicky
     
  9. NatashaDisneyCM

    NatashaDisneyCM DIS Veteran

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    This was something I had and never once picked up on it till I was diagnosed! I had ulceration's in my mouth and down my throat!
    It was not till I was found to have ulcerations in the distal part of my ilium and was not able to eat most or all foods and was hospitalized for it!
    I also cannot eat much in the way of fruits and veggies, and a hamburger once or twice a year.
    I dropped a ton of weigh due to this, I have to carry meds all over the place, like when I travel etc...
    but at least I know now how to work my food. (for the most part).
     
  10. bitohoney

    bitohoney DIS Veteran

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    I have ulcerative colitis which is very similar to Crohn's. I was diagnosed in 2008...my mother had it. I have been in remission for 2 years. :worship: I think what has helped me is exercise. I can eat anything I want right now. I also take probiotics and fish oil which help greatly.
     

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