I feel like my choice was taken away

This is a very hard topic for me to discuss, but I feel very passionate about it! Since it does weigh on me, I feel it’s important to share for the sake of others with similar feelings or concerns. Before we dive in– I just want to make it really clear that I respect all my mom friends out there and their choices. You will likely disagree with what I have to say, and that is okay. Please know that these are just my personal beliefs for my own life.

After my diagnosis sunk in and I accepted that this was going to be my life now…I was hit with the realization that I may never have children of my own.

For most of my life I have never wanted to have kids. Anytime someone would ask me, “Do you have kids?” I would say “Umm NOOOOO…NO!!”And I would almost kinda laugh, and think, are you crazy?! I don’t know why, I guess it just seemed like an absurd thought to me. I will admit that I used to be terrified of childbirth–but after experiencing the pain of a stricture and bowel stasis, that fear went away REALLY quickly!
{Side note–Any IBD moms out there that have also experienced the pain of a stricture? I would love to hear your thoughts on the pain similarities! My ER nurse said there isn’t much of a difference, except that in birth there is a hormone released that kinda makes you forget the pain. I’m thinking that is bull malarky, but you tell me! Enough of that tangent. LOL}
Once my sister in law became pregnant with my nephew a couple years ago, my view on kids changed completely!! I mean we are talking 180 degree turn ladies! I was in love with this miracle of life. I was amazed and fascinated with all aspects of her pregnancy and just wanted to experience it myself and bring life into the world so badly! I had the baby fever y’all! I know you know what I’m talking about! I went into full on auntie mode. I was buying all the baby clothes! I mean my husband actually had to cut me off! Ha ha ha! You can imagine I was not very happy with him about that! I had spare diapers at my house incase the bro & sis in-law dropped by! I laid awake sleepless and anxious at night, when the baby was due–wondering how my sis in law was doing and if the baby was coming! Would I have to hop in the car at a moments notice?
Ha ha ha…omg you guys– it was bad…but in such a good way!
Unfortunately, this was all around the same time I was just getting diagnosed with Crohn’s disease and I was put on a high risk drug for treatment. My disease was pretty severe at the time and manifesting itself in numerous ways. So we needed to get things in check fast. Not what I wanted to focus my energy on at the time, but it needed to happen. Looking back…maybe that is why I was kinda living vicariously through her and her pregnancy; because I was going through a scary journey and didn’t want to think about it! It was a way for me to kinda push that out of my brain and just be super happy with everyone else about the upcoming baby! But when I’d get home at night, I’d cry because… I wanted to have a baby SO BAD…but I couldn’t.
My doctor has told me multiple times that if I want to become pregnant, we would absolutely need to change my treatment because it’s not safe for pregnancy. He has communicated to me that I have to let him know beforehand, so we can change my medication and actually get it into my system. However, my current medication seems to be working okay, so who knows what another treatment would even mean for me. It could simply not work. Or I could possibly have another allergic reaction. Nothing is just a simple thing. I’ve learned that about this journey of mine so far. But to have a child…worth the hassle? Yeah, I’d do it.

Not a year later, after my own diagnosis, I get a message from my brother in-law saying he is diagnosed with IBD now too!! What are the odds?! Spent my whole life never knowing anyone with Crohn’s disease and within a year… Blows my mind! It took a while to sink in, but then I realized— that means the genetic susceptibility for Crohn’s disease doesn’t just come from my family alone, but from my husbands family as well. Gotta be honest–that really scared me.

That was the game changer for me.
I don’t know that I’m comfortable bringing a child into this world and possibly passing on this disease to them. I do not wish this disease on anyone!!! Most certainly not my own child. I just don’t think I could bring myself to knowingly do that. At least, right now–I can’t reconcile it in my head. I’d have to be okay with giving my own baby something they will live with for the rest of their lives, and they have no say in it. I’d have to be okay with giving them a harder life to live. No, I want better for my kids than what I’ve had to go through; I think all parents do. I know myself–I would feel forever guilty that I passed this on to someone, knowing I have Crohn’s and the genetic component with this disease. It would feel selfish. And yes there is the possibility my child could also NOT have the disease, and that would be amazing! But just because they don’t have it, doesn’t mean their kids wouldn’t. And I would feel responsible. To me there is a big risk here, that I just don’t think I’m willing to take.
Now the facts are– it’s not inevitable that the disease will be passed on.
If one parent has IBD the chances of the child having IBD are 2-9%. Not bad. I could live with that.
If both parents have IBD, the risk is as high as 36%. SAY WHAT!?!?!?!!?! Nope, nope, nope! Not having that! My husband doesn’t have the disease himself, but it’s present in his family more than once. That percentage is simply too high for me. No ifs ands or buts about it! I spoke to my doctor about my concerns as well and he confirmed that there is indeed a higher risk that my child would have IBD since it’s in both mine and my husbands genetics.
This makes me sad, because I think… if I didn’t have IBD, would I be having a child right now? I can’t be sure, but I’m leaning towards yes. That is the natural progression of life. You settle down, get married, buy a house–then have kids, right? But for me it was… settle down, get married, buy a house…then have Crohn’s disease. And boy does that mucky up any and all plans!
My doctor did also say to not let that be the deciding factor. In other words, don’t let that risk deter me from trying to having a kid. But seriously?? If not that, then what? That is a pretty big deal to me. Not something to consider lightly, because IBD is lifelong.
Also, just considering where I am at with my own medical journey–I can barely manage to take care of myself and my dog most days. Some days I can’t make it out of bed. A kid seems pretty much out of the question. That’s not fair to a child, and I don’t want that situation for me either. Heck, I don’t think its fair for my dog!
I know there are plenty of women out there that have IBD and children, before and after diagnosis. Totally their choice and they know themselves and what they can and cannot handle! And these women are somehow rocking it! But to be honest, I look at them and think–there is absolutely no way I could do that. I just don’t see that for myself. And I’m learning to be okay with that, granted it is a process. And despite all my battles with IBD, I gotta admit I’m content with my small family the way it is–me, my hubby and my fur baby KP.
So, while I feel like I have come to the conclusion that I may never have kids–I also feel like this decision isn’t wholly mine. I feel a bit like it was decided for me, because of the way things played out in my life. I’ll say it, it feels unfair. But instead of basking in that feeling, I am choosing to be grateful for all the children that I already have in my life. All my nieces and nephews bring me plenty of joy! 😊  And I’m so blessed to have a lot of them! When I’m around them I forget about what I was robbed of–I just feel happy!
Again, I respect that others may have different views and opinions on this matter. This is just mine at this juncture in my life. Like all things, it could change, but this is how I feel right now. I knew this would likely be a somewhat controversial subject, but I felt very strongly that it should be discussed.
As always I would like to hear your thoughts if you have ever felt similar, whether you have kids or not. Have you ever been worried about passing on IBD to your children? What are some of your concerns when it comes to pregnancy?

Published by Jana Rosenberger

I blog about my life with Crohn's disease and all things quality-of-life. I don't sugar coat this journey but I do find a way to laugh!

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