The Emotional Side of Being Diagnosed with Crohn’s

by marilynk

Part of the reason I didn’t get any posts up in October was that I was dealing with a lot of emotional stuff around my Crohn’s diagnosis. I’ve been around Crohn’s my whole life (my grandfather, dad, and sister all have it) and I thought I was prepared for this diagnosis, so I was surprised when all this stuff started coming up. I’m not quite sure how to work my way through it. Details aren’t for everyone, so feel free to go on your way without hitting the jump.

I’m one of those people who reads all of the information the pharmacist gives me with my meds. I know they are meant as a cover-our-butts thing, so they tend to take a worst-case-scenario approach, but I prefer to know what I need to be careful of before I get myself into a bad situation. Both of the drugs I’m on (Budesonide and Immuran) list potential for birth defects and/or complications. Even Crohn’s itself leads to higher instances of low birth weight, premature delivery, and cesarean delivery. I’m single and I don’t have immediate plans for children, but I do want kids one day – those warnings knocked me for a bit of a loop.

I have talked to both my specialist and my GP and they both assure they have had patients with Crohn’s have completely successful pregnancies. My specialist says he’s had patients have successful pregnancies and deliveries while on Immuran and other Crohn’s drugs like Humira or Remicade. Logically, I understand that it’s really too early to be worrying about this. I may or may not be on these meds when I want to get pregnant. The best thing to do, really, is assess the situation if and when I want to get pregnant and make decisions then. But that doesn’t stop the little voice in the back of my head that says, “It might not happen, you know. You might not get to have babies.”

I hate that voice. It’s awful and mean. And that voice makes it difficult for me to be happy for friends who have had babies or become pregnant while I’ve been going through this process. I am happy for them. In my heart of hearts, I really am. But since all this started in June, seeing pregnant women and young infants has been torturous. It makes me want to cry and hide. I haven’t dealt with it in the best way, either. I’ve avoided my friends who are pregnant or have recently had babies. I’ve muted some hashtags and I don’t look at pics that people post to twitter of their newborns. It’s a horrible way to be. I’m trying to get myself out of it.

I hope that getting these thoughts and feelings out of my head and onto this blog will help with that.


2 Comments to “The Emotional Side of Being Diagnosed with Crohn’s”

  1. Given that you’ve been diagnosed with a life-altering and chronic disease, it is completely human to feel the way you do about others’ happiness. You really do need to give yourself more time to deal with these issues.

    I’m not in your boat, but I’ve had a similar history. I take a lot of medicines and will do so for the rest of my life. I used to take Imuran, but I now take stronger ones. It’s a cocktail for 3 immunosuppressants and they have an array of nasty side-effects. It’s easier for me to deal with it now, because I’ve had years to get over it.

    What I have learned and am still learning is that our lives (our, meaning people dealing with lifelong diseases) really have a small bounding box in which we can live. There are several risk factors that will change the way we live and shape our future. As you do, it’s good to think of the worst case scenario and come to terms with that.

    However, what works for me is knowing not just the worst case scenario but also the statistical facts behind it. How likely is it that this medicine will cause this side effect? It’s not black and white. It works for me and allows me to define my life with a lot of guarantees of happiness and a few other things that might happen and make me happy. Again, I’ve had years to deal with it, so please forgive me if I’m oversimplifying your situation.

    One thing you do need to do is give yourself time. I really feel for you!

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