Freaked out by the long-term

I'm a long-time lurker but never feel the need to post. However, I'm having a bit of a freak out and my husband is out of town...help please?

Does anyone ever second-guess having children? I've heard that one never feels "ready," but seriously...I'm having my second infusion of Remicade this week and have spent the last hour reading outcome studies. Obviously it doesn't have any very long-term studies, but patients seem to have higher rates of some cancers....combined with the fact that we have a higher rate of colon cancer and generally shorter-lifespans, according to the research...I'm having a moment.

I'm 27 and I was married 2 years ago. I'm scared to get pregnant while on the Remi even though I know plenty of women have had babies while on the drug. I couldn't live with the guilt if the Remi somehow messed up the baby's development...But the clock is ticking and I feel like I'm never going to be able to get off it...and even if I do, what if I have kids then spend my life in the restroom and then get cancer? Is it better just to live my life with pets? They're definitely less stress!

How did you decide to have kids? How old were you? Did it turn out okay? (I know life's not perfect, but is it mostly okay? Do your kids have UC?)

Sorry. I know this is a messy post. As I said, I'm having a bit of a moment!

I had a beautiful healthy baby boy back in May and I took imuran (aza) throughout the whole pregnancy. I was told it was better for me to be healthy than to have a flare when pregnant.

I would love to know more about being pregnant on remicade as well which is my next step if I can't get the bleeding to stop. From what I can gather on my own, it is no more dangerous than a regular pregnancy. But that might have been an old study.

Good luck on finding info! I will have to keep a watch on this thread :o)

I have no children based on a decision I/we made once I was diagnosed with UC at age 34..that and all the other crappola that I've inherited...there will be none to continue the poor stock. My husband has a few things going on in his family as well. I'm also relieved my brother has no children. My half-sister who also has inherited lots of goodies, has a son who is now in remission from Hodgkin's. But it seems he doesn't have any of his mom's maladies..yet.

Should you get pregnant on Remicade??? NO! I don't think you should even consider it. I'm sure you'll do the research, It's really all risk anyway. Stats mean nothing when it's your life and the one that possibly doen't fit into the positive column.

You're young still.....put it all on hold until you can think rationally once you know more about the state/future of your UC. (to be asked about in another thread because I don't know how it is and what other meds you've tried, etc)

Regarding cancer...we all have the risk, no matter if we take meds or not. Some cancers we have a predisposition...having some diseaes or taking some meds can increase that risk.

Some people will not let anything stop their having kids, and when there's a possiblilty of not having them or one shouldn't...the need is stronger to want.

What does your husband want and what are is fears,etc? If he's willing to not have kids based on how you feel, meds you're on and understanding..then the ball's in your court.

I've never felt that not having kids has ruined my life. Actually, the relief is immense.
quincy

Making the decision to have kids is hard even without UC so I can only imagine how difficult it is to factor in all unknowns of drugs and illness into your decision making process!

I didn't know I had colitis when I had my children.  The only risk factor I had was "advanced maternal age".  During the pregnancies I did everything by the book, I had nonmedicated labors, I nursed both babies for a year and did everything possible to ensure their good health.  Both my kids have health issues that neither my husband or I have.  My youngest who is eight years old takes more medication than I do.  Everyone has limited control over the ulitimate health of their children which is a fact that, if you decide to have kids, will probably keep you awake worrying on more than one occasion in your life.

I don't have a seriously severe case of colitis, but it bothers me in some way everyday and even when it was at its worst, I never had the thought that I wish I hadn't been born. 

 

shorter lifespans? doesn't that depend on how severe the individual's uc is?

Hello Molly - I am in a similar situation as you. I am on remicade and have decided that I want to have children. Both of my doctors said it was safe. I just talked to my GI about it and he said it is important that you only try when you are in remission and you have less fertility when you have an autoimmune problem. My husband wants to wait until we have all our debt(well mine from all my medical bills:( ) paid off. The doctor said most women start to have trouble getting pregnant after 34 ish. I'm just scared I'll never be in remission long enough to have a baby.

HI!
I'm 30, been on remicade since March and we are going to start trying for kids next summer.

Remicade is a class B drug for pregnant women. It is safer to be pregnant on than AZA. You can look on the FDA website for more info on the class system.

I have been researching this for a few years now knowing remicade would be in my future. From what i have found remicade does not cross the placenta but they don't have enough information on breastfeeding and remicade. The studies go back over ten years. Also remeber that remicade has been used for other diseases since before it was OK'd for chron's ten years ago.

While it is always best to not be on any drugs while pregnant, it is better for the baby if the mom is healthy.

As for genetics. My kids have a greater chance of having horrible eyesight, high blood pressure, high cholesteral, risk for breast cancer...ect....Part of what being a parent means to me is helping your kids through the tough times. If my mom had realized that I may end up with UC would I still want to be born? YES! UC sucks but I'm glad to be here, alive, with UC than to never have the chance to live. My parents have always felt responsible for my UC but I know that it is no one's fault. I hope if my kids do end up with UC I can help them understand and get through life knowing I know how they feel.

It is a very personal decision. I talked to a lot of doctors, pregnant women on various drugs, family, friends, and of course, my husband.

Thanks for the replies. Most of them helped a bunch. Got my second infusion in an hour...my portable DVD player is all charged up, ready to go!

I used to worry about it. But then I decided that I want nothing more in life than to have children, preferably naturally so that I can go through the pregnancy process. Being adopted I wouldn't have a problem adopting a child of my own, but I have always wanted to experience pregnancy so I will try all routes there first.

But my self-questioning has gone from "Should I have kids" to "Should I have my colon removed before or after having kids?"
See, I worry more about missing out on my child's life because I'm sick or in the bathroom, and I worry that if I get pregnant I will flare and miscarry, or I'll never get into remission to be able to safely try, or I'll stay in remission during pregnancy and flare after. But then I worry about the possible infertility that comes along with abdominal surgery so it's really hard to decide when the surgery would be best. So, that's where I'm at right now. Luckily I have a few more years before I want kids so I hopefully have a little time to decide.