advice needed

I am in the same boat as you are. I have come to that time in my life when children would be a blessing. I sure do not want to pass on this terrible disease but none of us can live with the what ifs our whole lives. Only the big guy in the sky knows for sure what will happen.One thing is for sure I am not going to let uc control my life. Or stand in the way of my wanting to have children. I just try to think positive if by chance I pass uc to my child at least I will be able to comfort them and not let them go misdiagnosed for years as I did. We always want what is best but sometimes we have no control. I hope this helps you in some small way. My problem is I have been taking remicade for almost one year and I am not sure whether I will be able to continue on remicade if I become pregnant.!!!!! I have been feeling really well these last few months.I have lots of energy and I feel that I have a real grip on this disease finally..

5-10%? i thought it was 50-50 i thought it was almost certain that my children would get this, i guess i got all worked up in the beginning for no reason lol i didn't directly ask my doc about the statistics but he gave the impression that it would be dangerous to have a child while battling this disease. ive also heard theres a higher probability to miscarry when you have a flare, but how can your not have a flare sometime in between those 9 months? you body is already being put through hell by nourishing the unborn baby, so how doesn't that cause a flare? idk i just feel so sad cuz no matter what this disease is gonna affect my childs life, as someone said she doesn't want her child to think mommy is sickly and weak thats what i think about, taking my pills in the future and then my daughter walks up and asks me what they are. when my friends first saw me taking so many prescriptions they thought i was dying, especially when i said remission and then didn't explain, they all thought i was dying of cancer. but anyway my main concern is, is there a way to stay healthy while your pregnant if your scared to take the drugs while you are?

Kymie, I know there are websites where you can find information about being pregnant with UC, sorry I can't think of any right now, but CCFA would be the best place to start. What little I remember suggests that you're best off staying on meds while pregnant (assuming you're on mesalamine). Maybe a little research would help ease your mind.

I agree with LondonRed, don't worry about things you can't control (and like Red, I'm the worst at it!).

Wishing you the best,
emory

Actually, we have several members on the board who have had successful pregnancies. For some, the UC gets better during the pregnancy, while others who have been in remission flare. Like everything with this DD, it's very individual.

The odds are low because this is not an "inherited" disease as such. A predisposition to it is believed to be genetic and sometimes inherited, but it also requires a "trigger" to activate the disease. No one is sure what all the triggers are at this point. Just because someone has the genetic predisposition doesn't mean they will ever actually develop UC.

As for medications, both Mesalamine (oral or rectal) and Prednisone have been used for decades and are accepted as not harmful to mother or baby. Immunosuppressants and biologicals have some risks which have to be weighed agains the risks of a severe flare while pregnant. Generally only a severe flare which produces dehydration, anemia and/or malnutrition would threaten the continuation of the pregnancy.

Only you can decide what level of risk is acceptable to you.

True; it's known that every one of us carries a certain number of defective genes. Some of these need to meet up with a defective gene from the other parent to cause problems; others need to be in certain combinations of genetic errors in your own body; others only show up as a disease if they are in a certain percentage of you cells; others need an environmental trigger to turn on or off.

In this case, we know what one of our potential "bad" genes is, and that it isn't lethal. Also consider that ten or even 5 years from now there could be a lot of new treatments available and some day there will be a cure - hopefully for your children, if they need it.

Researchers in Canada have estimated that if one parent has an IBD (either CD or UC) there is a 10- to 15-fold increased risk that their offspring will also develop an IBD...this is according to Dr. Kevin Rioux IBD felllow research at the university of Alberta.

:)

I believe that it is not recommended to get pregnant while in a flare, it can have a higher risk of miscarriage. I was in remission when I had both my kids (the entire pregnancy) they are 23 and 20 and so far, no problems. I will of course keep my fingers crossed that they don't get it.

My dad was diagnosed with UC when he was 38, had his colon removed, but had a reconnect. I was diagnosed with UC when I was 25. My brother is safe so far. I do worry about passing this disease on, but my goal right now is to test them to see if they have a possible gene to get the disease. I want to catch it as fast as possible. I was symptomatic since I was in 5th grade, I think that was around '93, so I just don't want my kids to go through what I went through.

I was diagnosed at age 52, so both my daughters were born way before my diagnosis.  My paternal grandmother died from cancer of the rectum back in 1952.  At that time, my mother explained that nana had hemorrhoids that went untreated.  I find that hard to believe, but could be so.  I think nana must have had IBD.  Dad had diverticulitis.  Unfortunate for me I took after that side of the family.  Neither of my daughters exhibit symptoms of IBD, however, they do have IBS.  I had IBS as a youngster, so hope they don't get worse.

I have UC & my daughter was dx at age 18 with "indeterminate" IBD. (Pathologically, they could not decide if it was Crohn's or UC. Per her Dr, this is the case approx. 5-10% of the time. Symptom-wise though, they feel like her disease "behaved" more like UC.) She has had the j-pouch procedure. My case is more chronic in nature, while her's was very acute - - so much so that she had her first surgery to remove part of the colon just a few months after her initial diagnosis due to lack of response to prednisone IV, remicade, etc., etc.. We have had many "heart to heart" talks about our situations and neither of us has ever wished we weren't born because of UC. I think we both have a very strong will to live. I have to say though, that I cannot imagine how a younger child (less than teens) would cope with such a disease but maybe they do better than I can imagine. Everyone always says kids are so resiliant.