Crohn's Genetics Question

[khohl]

Hi,

I'm new to the forum. I am 21, diagnosed at 17. I've always had immune problems. When I was 6 I was diagnosed with a rare autoimmune kidney disorder that eventually went into remission. Now I have RA symptoms with joint damage, but my doctors are reluctant to call it RA, they say it's a symptom of the Crohn's.

Anyway, I got engaged at 18 to my only love, we've been best friends since middle school. At the time we got engaged he had just left the hospital after a one month stay. He had turned yellow in a matter of days. They finally diagnosed him with autoimmune hepatitus, another rare autoimmune disease. After a year on prednisone, he was fine. Last summer he started having diarrhea all the time. Then he was diagnosed with UC. He's tried Asacol, but Pentasa seems to work better for him, which makes me think that he actually has Crohn's (Asacol is absorbed in the large intesten, Pentasa in the small).

So, his doctor told him that if we have children then there is a 75% that they will have IBD. I've read that if both parents have IBD then the cances of passing it on are 35%, but maybe because we have multiple autoimmune diseases then the chances are higher? I have been tested for the Crohn's gene (NOD2 I think) and I do have it, but he has not been tested. We've discussed adopting and we both are okay with it, but we'd really like to have our own children. I'm not really sure I'll be able to have children, because I've never been symptom free for more than three months, but children are a few years into the future, so maybe things will change.

Is there anyone here who knows about this? Or has had children with another person with IBD?

Thanks.

 

[mikeyarmo]

Hi Khol,

Welcome to the forum! I am sorry that both you and your spouse likely have IBD.

It is possible that the doctors are using different research than what you found to base their recommendation on. So much new work is going on with disease and genetics that new information may indicate a greater probability that your children would have IBD. While I can not tell you exact percentages, it is likely true that one parent with IBD increases a child's risk of developing the disease and both parents having it will increase that risk more.

I do not think anyone can give you 100% either way... so you and your spouse need to factor all this information into your decision. Not an easy decision based on all the factors, but they all must be considered as this is a big decision.

 

[Jeff D.]

It depends on numerous different things for IBD to come forth in children. Genetics of Crohn's is a complicated matter because there is not one gene where a simple Punnet square would suffice. Instead there are a few genes involved. I have not yet been able to find out whether the traits for these genes are dominant or recessive but that can change how the outcome of a child having the genes or not. Also, if you do have kids you just need to keep a watchful eye out for them. Keep a journal of what you and your fiance can and cannot eat. Keep your child away from all the processed foods, candy, cokes,etc..., as a child and they will learn from an early age that those foods are not that great and instead will eat healthier foods which hopefully will keep the Crohn's/IBD/other diseases at bay.

Good luck and welcome to the forum

 

[khohl]

Thanks for the input.

Our biggest dilema is probably the same dilema everyone with IBD has, should we have children with the possibility of passing it on? Both of us also have relatives with Crohn's, so it runs in our families. I hated the first year of my Crohn's. I was always in pain and no medications worked. And that is what we don't want to curse our children with. On the other hand, both of our diseases are now well controlled. I have an occassional flare up, but I've learned to handle it. So, does this mean that the medications will only get better and if our children have IBD, then they won't have to suffer?

It's all so overwhelming..... We definately want children, we just don't know if we should have our own or adopt...

 

[MINI Cooper]

I hear ya. Everyone one my side of the family has a case of IBD as well.
Not sure if I will have children or not yet either because of this. It's been pretty
bad for me, and I read somewhere that if you do pass it on to your children,
most of the time their symptoms are worse. i sure wouldn't want that to happen.

 

[Isla]

I concur with the other posts of the day. The genetic factor is pretty complicated in autoimmune diseases in general as compared to actual hereditary diseases. There is still no concrete correlation of a specific gene and an autoimmune disease - as many of the "flagged" genes people can have but no sign of disease and others have no flagged genes yet still have the disease. There are definitely other factors that relate to the disease that we cannot fully detect or understand. The choice to have children or adopt is purely personal and cannot be deduced down to statistics.

Plus it gets into a whole ethical discussion. Like if my parents knew I would end up having 6 incurable disease would they have chose not to have me - for me, that would suck. I would rather have a life with disease then to have no life at all.

 

[pb4]

Accroding to Dr. Kevin Rioux, an IBD researcher from the University of Alberta, if one parent has an IBD there is a 10- to 15- fold increased risk of their offspring developing and IBD as well compared to those who do not have a parent with an IBD (either crohn's or UC).

My mom has UC and I have crohn's but my mom has 5 other kids that are all older than me and to date none of the rest of them have either CD or UC.

I would imagine if both parents have an IBD the risk of their offspring might more than double...there is definitely a good chance if both parents have an IBD their offspring will as well...I know with twins, if one twin has CD there is a 40-60% chance the other twin will also deveolp CD as well.

Keeping in mind, one who is predisposed to getting an IBD has to have it triggered as well.

 

[Mazen]

I have read thousands of studies relating to Crohn's, and I guess 2 of them can help you this case:

- One says that children who eat lots of fruits, vegetables and fish, and get the most Omega 3 in their diet are much less prone to have Crohn's

http://www.medscape.com/viewarticle/563517

- The other which speculates that Crohn's maybe of bacterial origin and may pass through stool, advised parents with Crohn's, to keep toilets very clean after they use them and try to have a seperate bathroom for the children, and be extra careful in cleanliness with food and other stuff...

Hope this helps...