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2011-12-07 4:00 PM

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Master
2277
2000100100252525
Lake Norman, NC
Subject: Anyone here battle with Crohn's Disease?

So my poor wife's colonoscopy this morning shows a high probability of Crohn's Disease.  There are some more tests and the biopsies to confirm it but the Gastrointerologist is pretty certain.  Not the news she wanted to hear, but at least we have some information.  It's been weeks of agony for her.

If you have Crohn's, could you PM me with either advice or some links to some helpful web sites?  We're in the beginning of all this and school is now in session for us.

Thanks!



2011-12-07 4:13 PM
in reply to: #3930180

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Champion
10668
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Tacoma, Washington
Subject: RE: Anyone here battle with Crohn's Disease?

Not Crohn's, but I've got a 15 year history of ulcerative colitis. There was a thread just a few weeks ago asking about this...

In any case, for me it was a matter of figuring out my triggers, and getting my meds ironed out to where I can deal on a daily basis. I had LONG courses of prednisone, because I'd have a flare-up every time I tried to taper off per the "normal" course. I'm rid of pred for about 5 years now, but I'm on an immuno-suppressive that has to be monitored for toxicity (periodic blood draws).

It can be managed and dealt with, so don't get discouraged. And it does take a lot of understanding on the part of others. Be supportive -- it's not something they can control all the time.

2011-12-07 6:32 PM
in reply to: #3930180

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Master
2621
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Almaden Valley, San Jose, California
Subject: RE: Anyone here battle with Crohn's Disease?
Sent you a PM - probably longer than you wanted!  My daughter has Crohn's.  Not a fun dx, but better than not knowing!!
2011-12-07 6:37 PM
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2011-12-08 12:09 AM
in reply to: #3930180

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5001002525
Victoria
Subject: RE: Anyone here battle with Crohn's Disease?

I have it,

 

it's a real pain in the butt sometimes.



Edited by ubersteiny 2011-12-08 12:15 AM
2011-12-08 12:14 AM
in reply to: #3930180

Extreme Veteran
655
5001002525
Victoria
Subject: RE: Anyone here battle with Crohn's Disease?

But in all seriousness it has it's ups and downs.

Diet is crucial to keep an eye on. I've gotten used to it, but it sucks feeling like you have to pass gas 24/7 and never knowing when you actually need to go or not. It's embarrassing when you're a full time student and your part time job is in a social setting. 

Ask the doctor about a medication called Asacol. If you're consistent with it it really helps.



2011-12-08 12:20 AM
in reply to: #3930180

Master
2621
2000500100
Almaden Valley, San Jose, California
Subject: RE: Anyone here battle with Crohn's Disease?

but it's a corticosteroid, topical, I think.  Maybe not the best first step.

 

2011-12-08 11:46 AM
in reply to: #3930583

Extreme Veteran
655
5001002525
Victoria
Subject: RE: Anyone here battle with Crohn's Disease?
velcromom - 2011-12-07 10:20 PM

but it's a corticosteroid, topical, I think.  Maybe not the best first step.

 

Asacol??

It's an orally administered anti-inflammatory pill. Nothing really major about it.

2011-12-08 1:58 PM
in reply to: #3931199

Master
2621
2000500100
Almaden Valley, San Jose, California
Subject: RE: Anyone here battle with Crohn's Disease?
ubersteiny - 2011-12-08 9:46 AM
velcromom - 2011-12-07 10:20 PM

but it's a corticosteroid, topical, I think.  Maybe not the best first step.

 

Asacol??

It's an orally administered anti-inflammatory pill. Nothing really major about it.

You're right, I think it's one of the ASA-5 pills (like Pentasa).  Some of them have other forms of deleivery, and they do have risks, although not as many as the corticosteroids or the biologics.

2011-12-08 2:51 PM
in reply to: #3930180

Champion
10668
500050005001002525
Tacoma, Washington
Subject: RE: Anyone here battle with Crohn's Disease?
I use Colazal (I forget the actual chemical name). It's in the sulfasalazine. Also take Imuran, which is the immuno-suppressive.
2011-12-08 3:21 PM
in reply to: #3930180

Master
2277
2000100100252525
Lake Norman, NC
Subject: RE: Anyone here battle with Crohn's Disease?

Thanks all!  I'm keeping up with your discussion.

 



2011-12-08 10:04 PM
in reply to: #3931503

Extreme Veteran
655
5001002525
Victoria
Subject: RE: Anyone here battle with Crohn's Disease?
velcromom - 2011-12-08 11:58 AM
ubersteiny - 2011-12-08 9:46 AM
velcromom - 2011-12-07 10:20 PM

but it's a corticosteroid, topical, I think.  Maybe not the best first step.

 

Asacol??

It's an orally administered anti-inflammatory pill. Nothing really major about it.

You're right, I think it's one of the ASA-5 pills (like Pentasa).  Some of them have other forms of deleivery, and they do have risks, although not as many as the corticosteroids or the biologics.

Yes, I used to be on Pentasa, wasn't very effective on me. Now my Asacol is starting to lose it's effectiveness and it's not reducing my flare up so I'm actually going to my Gastro next Tuesday and we're going to discuss alternatives.

2011-12-09 8:59 AM
in reply to: #3930180

Master
2621
2000500100
Almaden Valley, San Jose, California
Subject: RE: Anyone here battle with Crohn's Disease?
Another resource is Crohn's & Colitis Foundation.  www.ccfa.org  Great resource.  Do you have a definitive diagnosis yet?
2011-12-09 9:41 AM
in reply to: #3932327

Master
2277
2000100100252525
Lake Norman, NC
Subject: RE: Anyone here battle with Crohn's Disease?

velcromom - 2011-12-09 9:59 AM Another resource is Crohn's & Colitis Foundation.  www.ccfa.org  Great resource.  Do you have a definitive diagnosis yet?

We hope to get the biopsy results back today and get the definitive word.

 

2011-12-14 5:26 PM
in reply to: #3930180

Master
2621
2000500100
Almaden Valley, San Jose, California
Subject: RE: Anyone here battle with Crohn's Disease?
Is no news good news?  hoping so!
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