Re: OT-SCD, Relatives and CD

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I wouldn't worry about it. Genetic??? You know it's something like 35% of cases have a family member (close OR distant) someplace that has the same disease or similar. That leaves 65% of people with this disease having ZERO family anywhere with the disease. Common sense would tell you it's not.I think it all depends on how comfortable you are about it. Personally I would tell them, brag about how i'm taking a proactive approach to healing myself instead of nodding my head yes at what people tell me to do to "save" my intestines. It's really up to you. If that happened to me they would know already because i'm a fan of ucvlog on facebook Wouldn't take a genius to put 2 and 2 together.-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: list@...; BTVC-SCD From: texdebl@...Date: Thu, 25 Mar 2010 18:44:22 -0500Subject: OT-SCD, Relatives and CD

I was recently 'found' by a much younger cousin on FB. She lives in a nother state, What are the 'rules' as far as telling a relative about cd or uc or celiac in case it is genetic? As far as I know, I'm the only one with this dx even though some of the elders had very similar symptoms over the years.

I guess the one concern is she sent me an invite to a weight loss group ;-). Acai berry or something crazy. I don't think she's even overweight.

Thanks for any input. I doubt I'll mention it but would you?

Debbie 40 cd

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> Actually I don't brag about it since most say food has nothing to do > with it and I've been banned from a couple o' places for talking 'diet' along  > with a few others.>> On FB, I have the 'taking steps for IBD' on my profile but that could be > for a relative, friend or someone you really care about--not necessarily  > you. I always assume someone knows someone with breast cancer, not that they've  > had it.>> So you don't think it's genetic?>> I just wanted feedback, not a big deal.>> Debbie thx!The tendency to get a particular IBD, or IBDs in general is genetic. But that doesn't mean there's necessarily a lot of people -- or even two people -- in a family that will both have Crohn's, UC or whatever. The tendency to alcoholism also runs in families; and various cancers. The former runs in my husband's family; the latter in mine. But neither of us suffer from either condition; nor do the great majority of our respective family members. There's also hypertrophic cardiomyopathy on my father's side of the family (a serious heart condition). I have great genes, as you can tell. :-)  I've never thought of that sort of genetic weakness as something not to talk about with an extended family member. On the other hand I, in fact, do have a brother who has an IBD related to Crohn's, and I myself have Crohn's, and our other brother had IBS; and I have various cousins and a niece who have degrees of digestive problems (it's a very big family). It wouldn't occur to me to keep that information from an family member who didn't know that. The information doesn't mean they'll also get the disease, of course. But it does forewarn them. With my brother with the Crohn's-related disease I've found it's helpful to compare symptoms, treatment, and to encourage each other. Only I can't for love nor money get him to go on the SCD. He'd rather suffer and eat what he wants!  His choice, though not a very smart choice. (I can say that because he's my brother!) n Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

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>> I think "IBD" is a very broad classification for things nobody > understands. 50 years ago there was no ulcerative colitis, it was only > Crohn's disease, and everybody had it wether you had UC or Crohn's. Now, > there are 2 seperate diseases where there used to be only one.>> Nobody in my entire family history has ever had IBD, i'm the lucky > first. So, I don't think it's genetic at all. If 60% of people had a > relative then i'd consider it in some cases, but 30-35%? That's awfully > low when all things are considered.>> Look at it this way, would you do SCD if it's success rate was 35% > knowing how hard it is? I wouldn't.....>> -As I said in another post, the tendency is genetic -- that's why when you first go to a new gastroenterologist or are first diagnosed with Crohn's or UC they always ask if there's anybody else in your family who has it. Incidentally, a gene that causes Crohn's has been isolated, but there's no gene therapy for it -- yet. I just talked to my gastroenterologist about that when I saw him a few days ago. It's not a straightforward thing to find such "therapy."  If you're the only one in your extended family that has digestive problems consider yourself blessed!  n>> To: BTVC-SCD > Date: Thu, 25 Mar 2010 21:10:39 -0500> Subject: Re: OT-SCD, Relatives and CD>>>>>>>>>>>>>>>>>>>>>>>>Actually I don't brag about it since most say food has nothing to do > with it and I've been banned from a couple o' places for talking 'diet' > along with a few others.>On FB, I have the 'taking steps for IBD' on my profile but that could be > for a relative, friend or someone you really care about--not necessarily > you. I always assume someone knows someone with breast cancer, not that > they've had it.>>So you don't think it's genetic?>I just wanted feedback, not a big deal.>Debbie thx!>>> >>>>>> I wouldn't worry about it. Genetic??? You know it's something like 35% > of cases have a family member (close OR distant) someplace that has the > same disease or similar. That leaves 65% of people with this disease > having ZERO family anywhere with the disease. Common sense would tell > you it's not.>>> I think it all depends on how comfortable you are about it. Personally I > would tell them, brag about how i'm taking a proactive approach to > healing myself instead of nodding my head yes at what people tell me to > do to "save" my intestines.>>> It's really up to you. If that happened to me they would know already > because i'm a fan of ucvlog on facebook Wouldn't take a genius to put > 2 and 2 together.>> -> UC - 1+ years> SCD - 8 months 100% strict and 4 months restricted diet.>> Asacol - 12 pills a day> Prednisone 40mg> entocort With vit E mixed in> Back to intro/stage 1 for now.>>>>>>>>>> To: list@...; BTVC-SCD > > Date: Thu, 25 Mar 2010 18:44:22 -0500> Subject: OT-SCD, Relatives and CD>>>>>>>>> I was recently 'found' by a much younger cousin on FB. She lives in a > nother state, What are the 'rules' as far as telling a relative about > cd or uc or celiac in case it is genetic? As far as I know, I'm the > only one with this dx even though some of the elders had very similar > symptoms over the years.>>I guess the one concern is she sent me an invite to a weight loss group > ;-). Acai berry or something crazy. I don't think she's even > overweight.>Thanks for any input. I doubt I'll mention it but would you?>Debbie 40 cd>>>>> Hotmail has tools for the New Busy. Search, chat and e-mail from your > inbox. Learn More.>>>>>>>>>>>>>>>>> > _________________________________________________________________> Hotmail has tools for the New Busy. Search, chat and e-mail from your > inbox.> http://www.windowslive.com/campaign/thenewbusy?ocid=PID27925::T:WLMTAGL:ON:WL:en-US:WM_HMP:032010_1-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere