Moms with IBD - looking for advice
Sun, October 06, 2013 8:40 AM
Hi everyone,
Just some background on who I am. My name is Julie and I have had UC for over 10 years, starting when I was in college. Overall, I have been lucky - never super sick and mostly manageable disease, especially after the birth of my daughter, who just turned two. However, over the past month, I have been having my first flare-like symptoms since she has been born, and I just am not emotionally or mentally prepared for how to deal with being a mom who is sick. She is becoming more and more aware of what is going on around her, and I am just not sure what to tell her. I want her to have the peaceful childhood that I was blessed to have, where worries were little and taken care of by adults, but I also am aware that I need to tell her something about me being sick. So I am looking for personal stories, hopefully from moms with children of all ages - from babies to adults. How do you tell your child about your condition? How much do you involve them vs letting them just be worry-free kids?
Thanks!
Julie
julievJoined Oct 6, 2013
Thu, October 17, 2013 8:51 AM
Hi Julie -- I'm a working mom with two boys, ages 12 and 14, and diagnosed five years ago. For awhile I didn't share much, but as the disease (and meds) progressed, I've been very upfront ... especially when I started prednisone. I wanted to reassure them that Mom wouldn't always be a tired and angry bear. And now I'm glad I shared because I'm just starting remicade and they're not overly concerned that mom's headed to the hospital every few weeks for infusions. They just think it's part of the standard treatment, and since they've seen me go into remission once before (for 1.5 years at one time! ... the good old days), they know that the visits are necessary to get back to that place.
Of course, my boys are much older than 2, so it's hard to know how to explain things for that age that make sense. I just know that talking about my challenges, and what I'm doing to try to bring back a "normal" life in our household, has helped my boys take the fear and mystery out of the disease. In turn, it's helped me because they have come to know that some days they might be late to school, or miss out on something.
Every family is different, and every child has a different emotional make-up -- you will know instinctively what's best for your child and it will come naturally. It just evolved in our house. Best to you!
Carla
chsx43aJoined Sep 13, 2009
Thu, October 10, 2013 7:14 AM
Reply posted for juliev.
Hi Julie,
This is one of my greatest struggles too. How much is too much? I've been symptomatic since my early teens, and I am a working mom of three kids (10, 8 and 5). Ironically, I always felt best when I was pregnant. When my kids were babies, I really struggled with emergency trips to the bathroom with a stroller and baby carrier. Sometimes I think my fear about how my CD is affecting them is actually worse than what's our reality. My kids know (and all knew early on) that I have CD. They understand that I can not ever go anywhere in the morning, and that times when my belly is sick, I can not go to their games, birthday parties etc. Of course, like everything else, some activities are harder to miss than others (being unable to drops my daughter off to camp for the first time left me in tears, as did having to get up in the middle of a holiday concert). As much as I wish things were different, what has worked for our family is to be honest and use developmentally appropriate language. I should also mention that I am a therapist by trade, so we really do talk about everything in our home! Being straight with them has taught them about resiliency. I show them that frustration is normal, they've learned that when someone is sick, they need to help out more, and when I am well, we really play hard. We just always have a potty in the car, wipes nearby and carry hand sanitizer. My oldest has asked for very detailed information about the chances of her getting CD, and I've been honest about it. Watching me struggle has given them a deep understanding about patience, respecting limitations and differences. I think there is a way to frame IBD that makes us give our kids honest information, without terrifying them.
Nikki
Joined Sep 10, 2009
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