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I had dinner last night with some people from the CCFA, all of whom, like me, are the only person with IBD in their families, and all of whom are single and without children, except for one who is married and without children.

The question came up: if the other parent doesn't have IBD, what are the percentage chances that the child develops IBD?

One person said she was told 3% and another was told 25%.  What is the truth? What have your doctors told all of you?

Last edited by CTBarrister
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I had UC and my dad had it too. My sister does not. My dad's niece also has GI issues and she is getting diagnosed now. He also has five other nieces by blood with no GI issues. No one has given me statistics but I did give blood at Yale the other day for genetic testing as they are finally learning there is a definite genetic link with crohns and colitis. . I have two children who are 19 and 22. So far, by the grace of God, neither have been diagnosed with IBD.

In our family we run the gamut from IBD, IBS and Fap...many cousins (no parents) have died either directly or indirectly from FAP...as for the IBD it seems to have touched a large swath on the Cousin level of our family one way or the other.

I have no info on previous generations but it seems to be the up and coming disease in my family. 

Because alergies are a manifestation of the whole autoimmune disease I think the question is more an autoimmune question than an IBD in our case.

Sharon 

 

 

The latest data appears to be about 3-16% lifetime risk, depending on the IBD type and ethnic background if one parent has IBD. If both parents have IBD the risk goes way up to 33-52%. My husband did not have UC when we married, but developed it about 15 years after we started our family. Both of our sons have UC.

Regardless of what you were once told, this is the current information.

http://www.annalsgastro.gr/fil...8-2014-02-AG1992.pdf

Jan

Jan Dollar posted:

The latest data appears to be about 3-16% lifetime risk, depending on the IBD type and ethnic background if one parent has IBD. If both parents have IBD the risk goes way up to 33-52%. My husband did not have UC when we married, but developed it about 15 years after we started our family. Both of our sons have UC.

Regardless of what you were once told, this is the current information.

http://www.annalsgastro.gr/fil...8-2014-02-AG1992.pdf

Jan

how old were your kids when they first started having issues? I was 26 when diagnosed with UC. My exwife was just diagnosed with Celiac at 46 yeard old. My daughters are 10 and 8. My 8 year old has very mild mosaic Turner syndrome, but so far both have no issues. well my 10 year old has been constipated since birth, they haven't figured out anything except to just give her Miralax.

Rachel-when you say arthritis symptoms, can you give more details? My son from an early age of 5 too showed arthritis symptoms, (knees or shoulder hurts or back pain). I've taken him to a rheumatoid doctor and have done blood work multiple times. Thus far, we haven't seen any implication of inflammation. But it makes me so nervous. Anything else I can do to monitor? 

She started with right hip pain at 5. By 10, it was worsening, so we got in with a Peds rheumatologist.

Plain film X-rays never showed a thing wrong with the joint. Her blood work was never conclusive.

Eventually, the physician requested an MRI (it was mostly pain focused in my daughter's "right hip"). Her MRI a month before her flare showed "sacroiiliitis and enthesitis (inflammation of the tendons)," so she got an unspecified spondylitis dx. They now link the two conditions, so it's considered enteropathic now. 

While awaiting Enbrel approval, as the rheumatologist said they have a very low threshold for when to start biologics, especially in the SI joint, they prescribed diclofenac (Voltaren), a powerful NSAID. Mind you, this was before the flare, though she was showing confusing signs to the rheumatologist that now in retrospect were likely simmering IBD (vague stomach pain, no real growth or weight gain over nearly a year).  The diclofenac completely rid her of pain, and two days after starting, she was having bloody bowel movements that increased to 30x a day. 

A hospital stay and work up for IBD found the Indeterminate Colitis (she flared *just* like me, and they really thought UC, but her "skip lesions" leans her to Crohn's; she had only colonic involvement).

We started Humira one week after her flare, and she was in symptom remission with formed stools in 2 days. It was amazing. They added methotrexate to help decrease antibodies, but we are slowly weaning that off. Newest literature shows an immunomodulator like MTX does help decrease antibodies with Remicade, but not Humira. However she gets cross overage from it for the arthritis, so it's a very slow wean.  She's decreased to 5mg from 10mg over about 8 months. So far so good. 

Last edited by rachelraven

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