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Age of Onset and Transmission to Children

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Ulcerative Colitis
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Posted 9/20/2012 3:39 AM (GMT 0)
Hi,

My soon to be husband has UC, what his doctors have termed a moderate case, that he has been living with for 10+ years. We both want children desperately, and hopefully biological ones. What worries me/us in planning our family is thinking about the likelihood that one or both of our children could end up with UC. I should also mention here that there seems to be a strong genetic correlation in his family because one of his sisters has it as well. Neither of his parents have it, nor does anyone else in their family before them.

I am wondering if people would be willing to share a few facts with me for informational purposes:

1. At what age did your initial UC onset and diagnosis occur?

2. For those of you who have children, do any of them have UC and if so, at what age did theirs onset?

3. Any other information regarding repeat incidence within families.

Thanks in advance for sharing.
Posted 9/20/2012 5:17 AM (GMT 0)
I have UC and no one in my family has it so I don't think it's genetic in my case. I was diagnosed at 27... I don't have children and I don't think I will have any. Having UC plays a part in my decision not to have children but I don't feel it should be the determining factor in deciding whether you should have kids. It's not the main reason I do not intend to have children - it's one of the reasons but there are many.

There are a lot of parents here who have UC with children with UC. There are also a lot of parents with healthy kids. There are also some younger folks with no family history of UC. It seems like it's a mix but of course, with a family history, there is an increased chance of developing this awful illness. I can't imagine being a child with it, it's debilitating enough as an adult.
Posted 9/20/2012 3:55 PM (GMT 0)
I was diagnosed with UC at the age of 36. I have three children ages 4, 17 and 19. None of them have showed any signs of UC and noone else in my family has UC.
Posted 9/20/2012 5:05 PM (GMT 0)
I was diagnosed last year at age 30. No previous family history in my case. I have 2 children, ages 6 and 3. So far no signs of UC in them, although they are still quite young. I pray they never have it.

I would not let your fear of passing this on stop you from having children. The odds are in favor of them NOT inheriting it. And, if they should happen to develop UC, they will have a parent with first-hand experience to guide them through and support them.

Posted 9/20/2012 5:34 PM (GMT 0)
My husband asked me the same question too. Im the one with UC and he was worried to pass on the condition to the baby when we have one.

However I never feared having a baby and never feared of giving him the condition.
I think that if as a general rule (fake numbers here) 1% of the population gets a bowel disease and if one of the parents increase the risks by lets say 40% it's still around 1.40% chances of the child having it. Not much.

It's a bad condition but I don't think it's that bad so you don't give chance to a new life. Whatever happens don't let UC stops you from being happy.

I am the only one in the family with IBD but on the other hand everyone in my family has bad sight and wears glasses (my husband as well) and I am the only one who has a god vision.
Posted 9/21/2012 12:40 AM (GMT 0)
I was 21 when I got sick. My son is 7 and so far is good. My dad has always had some stomach issues, but was diagnosed with diverticulitis and has some flares from that. My aunt swears my great grandma had uc and cured it by eating ice. I have no idea if that's true or not! No one else in my family has it though.
The only thing about it would be that men on immuran or 6mp should be very careful with having children, something about it is more dangerous for the man to be on than the woman. If he's not on those then it shouldn't matter.
Good luck!
Posted 9/21/2012 12:48 AM (GMT 0)
I was 32,my son lost his colon at 21,but he is now 33 and fine.
Yes it can happen.
Old Mike
Posted 9/21/2012 1:46 AM (GMT 0)
It would be interesting to see a study of how many kids of UC'rs come down with UC if they were born AFTER a parent already had UC. I just wonder if the chances are lower if you came down with UC after your kids were already born or if it is just in the genes, whether the kids were born either before or after a parent came down with UC. It's possible that maybe you don't pass on the genetic mutation to the children if you did not have UC before they were born. I don't think there are any such studies but it does seem like I read somewhere that the children's chances are greater if it was the mother with UC and not the father.
Posted 9/21/2012 2:44 AM (GMT 0)

garylouisville said...
It would be interesting to see a study of how many kids of UC'rs come down with UC if they were born AFTER a parent already had UC. I just wonder if the chances are lower if you came down with UC after your kids were already born or if it is just in the genes, whether the kids were born either before or after a parent came down with UC. It's possible that maybe you don't pass on the genetic mutation to the children if you did not have UC before they were born. I don't think there are any such studies but it does seem like I read somewhere that the children's chances are greater if it was the mother with UC and not the father.

I agree, that would be a very interesting thing to put to a study!
Posted 9/21/2012 3:34 AM (GMT 0)
I developed symptoms during my first pregnancy at the age of 26 and diagnosed about 8 or 9 months after the birth, at age 27.
No previous gut issues but several factors that made me likely to develop UC.
Mother and grandmother both have/had diverticulitis. Onset of their issues was later in life, I'd guess closer to age 50.

My boys are 7 and 4 and have no gut issues. Both were breastfed for over 2 years each. Their dad and his family have no gut issues.
Posted 9/21/2012 6:42 PM (GMT 0)
I really appreciate all your responses. Does anyone know about any official studies or any documented numbers on recurrence within families, or specifically incidence in children of parents with UC?
Posted 9/21/2012 7:00 PM (GMT 0)
You might consider asking for a genetic evaluation of you as a couple, which would give you as a couple some idea of the likelihood of having a child with UC or other inherited condition. As best I know, UC is not considered truly 'hereditary' like eye color or, say, Huntington's chorea. There does seem to be some increased risk, but it's probably a combination of inherited potential and life exposures. A geneticist might be able to clarify this for you.

Your state university or local teaching hospital may offer this service.
Posted 9/21/2012 7:28 PM (GMT 0)
I was diagnosed at age 50.  I'm about to turn 52. My 17 year old daughter is about to see a GI regarding her stomach.  She has been having problems for the last year and is getting worse. I'm hoping at the worst it's only ibs.  Hopefully it's nothing, but the signs are there.
Posted 9/21/2012 7:34 PM (GMT 0)
I was diagnosed with UC at age 17. I have a son 39 and daughter 37. No issues for them. They each have 2 children with no issues. Hope that helps.
Posted 9/21/2012 8:30 PM (GMT 0)
Maybe genetic counselling would be your best bet based on actual tests, not statistics.

If your base your decision on statistics and have a child with UC...oops.

If you want kids, have them. There are absolutely NO guarantees they won't have that or anything else.
Before you get pregnant, check for all the obvious of rubella, CF and whatever else. One never knows what's in the "woodpile"...

I/we chose to never have kids based on my own inherited and my husband's inherited issues. It's what I could do to not pass the crap on, let alone cope with it.

But if you have kids with tons of issues, remember you wanted them with all that comes with it. No guarantees. A perfectly healthy child can end up with other serious illness/disease that's acquired.

q
Posted 9/22/2012 3:21 AM (GMT 0)
My son was diagnosed this past December, he is only 8 years old. It came as a complete shock as he has always been so healthy. He got the "perfect attendance" award for two years straight during his kindergarten and first grade years of school. Must have been his "overactive" immune system at work! We have no family history (immediate of extended) of UC.

Personally, I would not let the UC stop you from having biological children. My son has a great quality of life. He is on a swim team, does tri-athlons (won first place in one this last summer) plays the guitar and is always making me laugh with his funny sense of humor. I would have to say that his UC has been harder on me. It is VERY HARD to see your child struggle with anything. Of course I am his mom and want life to be perfect for him. But let's face it, life is never perfect.
Posted 9/22/2012 5:53 AM (GMT 0)
My daughter was diagnosed with UC at age 10.  Six months later, my husband was diagnosed with Crohn's. He went for a colonoscopy at the urging of our daughter's physician.  He should have been diagnosed about 10 years ago when he had a fistula, but no one knew anything about Crohn's at the time.  I would not let the family history deter you from having children.  Yes, it has been HORRIBLE watching my daughter suffer for so many years, but I'm certainly not sorry we had her!  Granted, we did not know anything about UC or Crohn's before I got pregnant, but I know for sure that would not have changed our decision to have a child.  Good luck to you!
Posted 9/22/2012 5:57 AM (GMT 0)
I forgot to add that my husband was 46 when he was diagnosed.

We first took our daughter to Cedars Sinai in Los Angeles. They have an incredible Pediatric IBD center. We agreed to be part of a genetic study...not sure if it has been made public yet, as we don't see that Dr. anymore...but I would think there would be some sort of medical publication about the history of families with IBD...google it?
Posted 3/25/2013 6:36 PM (GMT 0)
Bumping this thread and wondering if anyone out there can share personal experiences with having children that have not developed UC even though one or both parent has it? I'm curious to see how many folks may have children who made it into their adult years without developing the condition even with a parent or parents who have it.
Posted 3/25/2013 11:10 PM (GMT 0)
I was diagnosed when I was 17. My uncle has UC as well so yes it runs in the family.

UC is a reason why I'm not having children.
Posted 3/26/2013 1:12 AM (GMT 0)
I was diagnosed at the age of 40, after both my kids were born. They are now 13 and 15 and perfectly healthy. They both participate in competitive sports and have never had any bowel troubles. Neither has ever taken antibiotics which I think is a huge plus.
Posted 3/26/2013 1:31 AM (GMT 0)
It IS genetic.  Both my brother and I have UC (although my brother had the J-pouch about 16 years ago).  We both went to Mayo and they did tell us that it is genetic.  So far my brother's children don't have it, although his son does seem to have alot of stomach issues.  I'm not having kids so I can't comment on that side of things :)
Posted 3/26/2013 1:02 PM (GMT 0)
IBD runs in my family. My mother had Crohn's and my great grandmother had something similar (there was no name for it back then). I developed UC when I was 22.

My son is 21 and no sign yet of gut issues - I had him before UC. My daughter is 17 and has issues with IBS - I had her after UC. She worries me the most because she already inherited my Raynaud's and I've been keeping a close eye on her for any issues with her IBS. She's already had a colonoscopy.
Posted 3/26/2013 6:03 PM (GMT 0)
When I was diagnosed with UC in my 50s, the medical community assured me that this was a hereditary issue. Genetics may have made me susceptible to UC, but it didn't CAUSE it. I was fine before a double dose of heavy antibiotics sent me into the UC abyss. We're also told that stress can trigger UC. That may very well be, but for several years before my diagnosis I was a manager working under considerable pressure and stress without any UC symptoms. It was after I retired and out of the pressure cooker that I was hit with UC.

* My parents, grandparents and great grandparents had no UC symptoms.
* My sibling has no UC symptoms.
* My adult son has no UC symptoms.

Everyone is different and I consider it irresponsible when the medical community tells UC sufferers that genetics alone got us where we are today. In my case, that was pure nonsense.
Posted 3/26/2013 6:24 PM (GMT 0)
From what I have read and understood from scientific literature, you are predisposed to this genetic condition. The trigger initiates the condition.

So far, there is no concrete evidence that UC is caused by certain mutations, although a few mutations are observed in UC patients more frequently than the non-UC subjects.

I was diagnosed with UC at 30. My mom has UC but its in LONG remission (about 19 years now). I don't think anybody has enough knowledge at this moment to tell you concretely if your biological kids will have UC.

Offnote: There is a weak connection between UC and Autism. I have UC and DS has autism. We decided not to have any more kids.
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