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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Crohns disease

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Crohns disease (Read 6581 times)

mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Crohns disease
Nov 30^th, 2011 at 1:09pm

You may rememeber that Kathleen was diagnosed with Celiac disease over the summer. She's been on a gluten free diet ever since and ehr numbers have come way down. But she's still had problems belly pain, diarhea and constipation,and blood in her stools. After a lot of tests she was just diagnosed with Crohns disease also. She's had a lot of pain with this so I'm hoping that the medication works. The Dr. put her on Asacol it's an anti inflammatory medication. We will be starting it today but I'm going to go online and check out what it is and what side affects it can have. Unless by any chance anyone here has ever taken this drug. It's usually used for colitis and crohns disease. I have to say now that enough is enough for my girl...
Mary grace

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momkaren Experienced Poster Offline I Love MM.com! Posts: 126	Re: Crohns disease Reply #1 - Nov 30^th, 2011 at 5:07pm Geez, I'd say that's enough for her too! Well, at least now (hopefully) she won't be in any more pain and the meds work.
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Crohns disease Reply #2 - Dec 1^st, 2011 at 9:38am Mary Grace - I'm so sorry to hear the struggles that Kathleen continues to go through. What a trooper she is! I wish I can offer advise...but I can really only offer well wishes. Hang in there! Sending hugs! -Shari
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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: Crohns disease
Reply #3 - Dec 4^th, 2011 at 1:39pm

I do hope the new medication will help with the pain she's having from the Crohns Disease. It may take a couple weeks the doc said but at least I see a light at the end of this tunnel. Thanks fr the well wishes, hugs, and support. kathleen really is a trooper and gets up and goes to school everyday and loves it. She comes hoem totally exhausted but has a great time at school.
Mary Grace

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: Crohns disease
Reply #4 - Dec 18^th, 2011 at 9:43am

It's been almost 3 weeks on the medication and I haven't seen any change in her belly issues. I'm still praying that the medication will work. I don't want to have to try a stronger medicaiton. She had a sinuse infection this past week so it was a really tough week for her. I did find a support group online for Crohns. As you all know those who have lived through it are the best experts. The biggest problem is that it is so individulaised different things work for didderent people so it's a lot of trial and error with meds and diet (shich is already restricted because of the celiac).
Mary Grace

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momkaren Experienced Poster Offline I Love MM.com! Posts: 126	Re: Crohns disease Reply #5 - Dec 24^th, 2011 at 1:31am I am so sorry to hear this, poor girl has had enough. Hoping you find the right meds for her soon. have a Merry Christmas and a Happy and Healthy New Year!
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Astrea

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Re: Crohns disease
Reply #6 - Dec 31^st, 2011 at 4:04pm

I was on Asacol for UC - ultimately my UC was not medically responsive and I had a j-pouch. That failed and I now have a perm ileostomy (which I love, love, love). Asacol made me worse. Sulfasalazine too. I never tried Remicade or the other immunosuppressives because surgery was a must for me. J-pouch won't be an option with a Chrons diagnosis so you may ultimately need to use the immunosuppressives. Please, please, please feel free to send me a private message. I know all too well how horrible IBD is and I hate to see kids go through it (I was 26 when dx).

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mg12061

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Re: Crohns disease
Reply #7 - Jan 3^rd, 2012 at 8:40pm

Thank you Astrea. I hope we can get a grasp on this soon. I called ehr GI Dr, back today and told him I haven't seen a big change yet and she's been taking it for 5 weeks. He scheduled her for another colonoscopy in 2 weeks. This way he can see for sure if there's been any change or if we need to use another medication, I think he mentioned a steriod. The last colonoscopy she had the prep didn't work completely hopefully I can get it to work better this time.
Mary Grace

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