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Passing on the UC genes

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Posted 4/20/2011 1:22 AM (GMT 0)
Hi,

So I have decided that I really want kids (although I need a man for this, and dont have one picked out yet), it is one of the main reasons why I chose to not have the surgery. However I worry about passing UC onto my kids, does anyone else ever worry about this, or better yet has anyone ever experienced this?

Thanks
Jordan

Diagnosed in 2007
Been off steriods since July 2009
At the moment I am on Humira, and Colazol
Posted 4/20/2011 1:25 AM (GMT 0)
I do worry. I wasn't diagnosed until after I had my baby. I wanted a child though and I doubt the disease would have changed my mind. Research shows that breastfeeding lowers the chance of IBD in the person that was breastfed...I am hoping that is true. It is one little thing I can do to help my boy out.

Best of luck to you!
Posted 4/20/2011 1:38 AM (GMT 0)
Hi Jordan, I think anyone with UC who is considering having children has this concern. It's defintiely something to think about. I can't imagine how difficult it would be to watch a child struggle with UC but at the same time, you can't give up your dream of having children because of UC. I've heard people say the chances of passing it on are pretty slim. Another positive, many cases of UC are very treatable with Asacol or similar medication. I have seen a lot of parents here with children who have UC, some of the parents have UC but many do not... There is no guarantee that a child will be healthy and that's something every person should take into account when they are considering having children, UC or no UC.
Posted 4/20/2011 3:14 AM (GMT 0)
Might want to give this a readover, could help in your decision, with some very useful information about pregnancy and UC/CD.

www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.6452229/k.EC50/Fertility.htm
Posted 4/20/2011 3:45 AM (GMT 0)
I made the decision to not have kids...I inherited a few autoimmune diseases/disorders plus a few more. I AM my parents and hate that fact.

I have no kids because I KNOW for a fact that I wouldn't be able to cope dealing with the pregnancy ore a child through all phases of life. I wouldn't want to pass on anything of what I have....both physical and emotional.

Your decision, but if you do get pregnant, make sure you're not the type to have regrets. If you're the type to have regrets or guilt, do the kids a favour and make it never happen. If you're a balanced person psychologically...you'll have a better chance of dealing with any issues and your (possible) child will probably be as well.

Don't believe any statistics to base you having children, statistics do NOT change what YOUR situation will be. REgarding breastfeeding and it lowering the risk of your child from what could possibly ail him/her...again...not enough proof to say it's a for sure. I have enough experience with friends whose children have a ton of problems and they all breastfed to seriously debunk the promises of that belief.

Make the decision honestly for there are many sick and screwed up people in the world today...and they all want a cure for what ails them, demanding that others understand their suffering and pain...etc.

I'm talking in the now...preconcieving.

A healthy child.....that's one thing you will never be guaranteed.

q
Posted 4/20/2011 10:51 AM (GMT 0)
I have a healthy nearly two year old boy and I pray every day that he will not inherit my UC, but only time will tell. If he will get sick, at least I am equipped to support him in many ways and will know exactly what he goes through. UC can be pretty bad, but I guess I have been lucky in a way, that it has not limited my life. Sure, I get really bad flare-ups, take strong medications, sometimes run to loo every hour on the hour, but I still would not change my child for anything. UC is part of me, what I am.

I would not let UC rule if you have kids or not. I have lived a very fulfilling life, despite having UC for over 15 years. I am certain that I will be here for another long time.

Having kids is such a blessing, but only you can make the decision to have one or not :)
Posted 4/20/2011 12:20 PM (GMT 0)

My father had Crohns so I was familiar with IBD.  I already had two children when I was diagnosed with UC 16 years ago.  My kids are both in college now and back in June my 21 year old son was diagnosed with Crohns.  He was always a very healthy kid.  I have spent many days crying as they adjust my son's medications, he seems to get better, then he gets sick again, iron infusions, etc....  This is something I can deal with but I hate to see him go through this

I would still have had kids even though I have family history of IBD.  I am only hoping in his lifetime they find a cure and end this cycle.

Posted 4/20/2011 12:28 PM (GMT 0)
i thought about this a long time. my dad had uc and as, same as i do. he died in his 50's from heart complications (too much inflammation in his body).
and i asked myself if i wanna pass this to my children.

the only question i've asked myself to get me decided was: would have been beter if my parrents would not had conceived me?
NO. i am happy to be in this world, no matter the diseases i've got. I thank my parrents for their love and for its result: me. I can live a happy life anyway, there are enough reasons to live. So I will try to have some childrens, as many as possible. Let them share this world, this is what we're made for.
Posted 4/20/2011 3:22 PM (GMT 0)
I made the decision to have children despite the risk. From what I read, the risk of a child getting UC was greater than a random person's but still rather small. I agree that life is worth living even with UC. That said, it would break my heart to watch my children go through this, and it is something I think of often.
Posted 4/20/2011 3:35 PM (GMT 0)
Hi there,

I do worry about this often. I think most IBDers do unfortunately.

My UC did not become active until I got pregnant with my son. ( I was in remission for 7 years). Now I am pregnant with #2 (12 weeks along). I worry about my son getting this disease. I am always interested in his diapers because I want to check whats happening in there.

I makes me sick to think he might have to suffer with this. Just typing that makes me want to cry (maybe the hormones too LOL).

I am going to ask his doctor about probiotics at his 18 onth appt. I think they would be important to anyone and maybe especially for him? Also, I am doing everything in my power to avoid having him on antibiotics for as long as possible. I know it can't be forever but we can teach him how to stay as germ free as possible.

I have to say, my son is the light of my life. He is amazing. I  never wavered on deciding to have kids (UC or not).

Good luck.

Posted 4/20/2011 3:43 PM (GMT 0)
Having children always carries health risks. You and your partner may both carry genes for several diseases or disorders. Having children or not having children is a serious decision for so many reasons. It seems you have time to think this through since you are not in a relationship now. My husband and I made the decision to have children together. My first child was born before I was diagnosed and my second one after I was diagnosed. I have absolutely no regrets but we are each different.
Posted 4/20/2011 6:00 PM (GMT 0)
I was diagnosed with UC after my daughter was born so it wasn't a factor in my decision to have a child. My husband and I were debating whether or not we wanted another child when I was hit with a really bad flare. After seeing how bad my UC can get we decided not to have any more children simply because I'm the primary care giver in our family and while flaring I don't have the stamina to parent the way that I like to. So for me the decision isn't so much the "what if I pass this on." It's "what if I get really sick again."
Posted 4/20/2011 6:49 PM (GMT 0)
My husband and I were already considering not having any children, and this was a decision we were making regardless if I had UC or not. 

However, since my recent hospitalization and bad flare, and now taking Imuran, and possiblity of surgery, I've started to ask myself if I still really wanted to have kids and pass along this gene, along with risks with the drugs, etc.  Although I've lived a great life I'm not even 30 yet, and want to stay in remission as long as possible. I am more scared of getting a bad flare during or after pregnancy, losing a child, or being too sick to care for my child, or my child getting UC.

But again, my husband and I were already thinking of being a "child-free" household. 

However with that said, if we decided that we did want children, we've decided adoption would be an option for us.  This way, we can give a child a new home and I won't have to worry about me and UC. UC or not, children are going to have health issues at some point in their life.  I think it's a decision you and your partner will have to make together.

Posted 4/20/2011 7:49 PM (GMT 0)
I have thought about this a lot!! I am going to give you my perspective. I cannot wait to be a Mom, my life has always been difficult and I work hard every day to be positive and to help others around me. I have taken all of this and used it for good, I know many people who have a lot less 'problems' than I do and they are not as happy and satisfied with life that I am in general. That is not to say that I don't have my down times and wish I did not have UC and Kidney disease.

As far as passing this onto my children I have given this especially careful consideration. My mother has UC but I am grateful she had me! However, back then I don't think the thought crossed her or anyone else's mind about passing this on. That being said, I think if you look at anyone's family tree you can find some type of illness and that is the perspective I have.

I would feel terrible if my child had UC, but even though there are problems I wouldn't give up who I am and the life I have been granted for anything. I have a wonderful husband, family and friends a great career and hope one day my future child(ren) will be fulfilled. Who knows, maybe they will invent a cure?
Posted 4/20/2011 9:20 PM (GMT 0)
I had my three kids before my diagnoses. I had started having D issues when I was about 5 months pregnant with my third.  I'm done having kids but if I did not have any or wanted more then I would. I would worry about the meds affecting the baby though but like everyone said. Your child could have issues wether you are healthy or not. It is hard to find someone to watch the kids when you have alot of doctors appointments, scopes, remicade, etc. I'm on remicade because I didn't want the surgery when my children where young because how would i carry them, deal with them, who would watch them during the day when I'm in the hospital and my husband has to work, etc.

But my kids are my life and mean the world to me. They bring me so much joy. You can't not have kids because you might(key word) pass something on to them.  What if you don't?

Posted 4/20/2011 11:38 PM (GMT 0)
I was also diagnosed AFTER my second was born, so this was not a consideration for me in whether or not to have kids. It also was not a consideration in trying to have a third. My concern with having a third was my own current remission status more so than passing this along. I spoke with a genetic counselor about this and many other things, and the chances are not extremely high of passing it along. And like another poster said, you could be perfectly healthy and pass something along to a child. Or have a child have some other unrelated health concern. Friends of mine had twins recently who both have CF. They have zero family history of the disease and had no clue they were even carriers. They have 2 other children who are completely healthy. Another friend of mine, whose son is turning 6 like my daughter is, has been battling leukemia with her son since he was 6 months old. She has 3 other children who are completely healthy. Things do happen, and you just can't plan for everything.

Having children has been the greatest gift I have ever been given. I would not trade it for the world, and I have zero regrets about having them. If they develop issues later in life, I will be well equipped to help them deal with those issues. And had I not had them, I know for certain I would have always had regret about that. Having children was a lifelong dream for me. If I had a high chance of passing along a fatal illness to my kids, I would have felt differently, but even with a moderately severe case of UC, I have a good life, and I hope my children are blest with even better in their lives.

Good luck with your decision. It certainly isn't easy. Trust your own instincts, you really can't go wrong.
Posted 4/21/2011 1:53 AM (GMT 0)
My dad has UC but I didn't know this until after I was diagnosed last year.  He was in his late 30's when he was diagnosed, and I was also in my late 30's.  I already had 2 kids, so making the decision to have kids wasn't affected by my genetic concerns, but now I worry every time anyone has diarrhea, or is constipated, or has a tummy ache...  I just hope they don't inherit it.  I nursed both my kids and I think we all eat a very healthy diet, so I feel I am doing all I can do to get them off to a super healthy start.  There's no history of IBD in my husband's family, so hopefully those are the dominant genes!

Having kids has been such a wonderful amazing journey, but quite stressful too.   There are benefits and drawbacks (health, financial, etc etc etc) with or without kids.  Whatever decision you make will most likely work out for you just fine.  :)

Posted 4/21/2011 2:28 AM (GMT 0)
I found out a couple days ago that my dad may have UC -- I think he's actually been having intestinal problems for years but wasn't ready to admit this to himself (or me). That having been said, I'm happy to be alive even with the illness. Granted, I haven't been hospitalized or have a really difficult case. Still, unlike some genetic disorders, UC isn't anywhere near as bad as some.

Another thought: adoption? There are some really amazing kids out there waiting for a loving home, who would no doubt provide the fulfillment and joy that biological kids would as well. Plus, if they have genetic issues, at least it wasn't your fault ;-).
Posted 4/21/2011 5:49 AM (GMT 0)
According to research by Dr. Kevin Rioux (in Canada) who has done some extesive research on genetics/inheritance of IBD....
If one parent has an IBD (either UC or crohn's) there is a -10 to -15 fold increased risk of passing an IBD to your offspring, if both parents have an IBD there is about a 40-60% chance of their offspring inheriting an IBD.

My mom had UC, and I have CD, I got sick with my CD before my mom got sick with her UC...I have 2 children, my daughter is 21 and has been having gut issues (to date docs DX is moderate to severe IBS) but an IBD has not been DX for her, doesn't mean it won't be though and it breaks my heart...my son is 18 and so far touching wood, no issues with his gut and fingers & toes crossed that he won't develop any...BTW their paternal grandma (my MIL) has diverticulosis (also an inflammatory disease of the bowel...the villie in the large intestine become inflammed with diverticulosis).

I love my kids both dearly, I didn't get sick until after I had my daughter (first born) and as I stated, even my mom didn't have her UC yet (wasn't yet triggered is a more accurate way to say it) but honestly if I would have had crohn's before I had children I wouldn't have had them...I had a hard time agreeing to get pregnant with my son since by then I knew I had CD, but I really didn't want to have an only child and the doctors back then said there wasn't enough info known about passing IBD on to offspring so I took the chance and got pregnant...it's a tough decision to make, but no one can make it for you. good luck!
Posted 4/21/2011 12:01 PM (GMT 0)
I had uc back when I was 15 and had 3 surgeries to remove my colon and create a jpouch.  Was't thining about kids back then.  Fast forward 18 years...got married and a few years later wanted kids.  Unfortunatley getting pregnant was a struggle .  Both were ivf with my second not working until the 5th one.  The drs think it's due to the scar tissue from surgery. It was a tough time as we wanted kids more than anything.  But now we have our miracles.  Everyday I worry, like others on here, that they will get UC.  I'm always looking for blood in my daughter's diaper.  all I can do is pray they will be healthy and not suffer through what we all have.  We do have a bit of a higher chance of passing it on, but I don't think it's a reason to not have kids as really there are many awful sicknesses out there that they could have. Life is full of unknowns and kids bring so much joy to this world. They really do complete me.  And giving them life is a gift...with someday they will have their own kids.
Posted 4/22/2011 2:01 AM (GMT 0)
I think that if you really want kids you shouldn't let UC get in your way. If you don't want kids and need more reasons, well, then, OK, use UC as another reason to list to anyone who challenges you.

I am in general an optimist.

I was dxed with UC before we had kids. I chose to hope they wouldn't develop it. Well, when he was 13 my younger son did - pancolitis. Do I regret having him? No, not at all!
For one thing, he's had a good coach - no one in my immediate family knew about UC or had any helpful words when I was dxed! But I have helped him be conscious of flare symptoms, foods that hurt, etc.
He's done well..... and I am optimistic that there will be increasingly better treatment options, both pharma and natural, in his lifetime.

When you decide to become a parent, there are all kinds of dangers ahead - many diseases, illicit drugs, car accidents - gosh, crossing the street can risk one's life! and to me, UC is just one more thing on that list.

I have tried to live my life in a way so that UC has not defined it. If you really want to be a parent, I wouldn't let the fear of passing on UC genes stand in the way.
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