Six months post-diagnosis and we finally had a good week. Sharing what helped us.
I wasn't sure if I should post this because it still feels fragile, like I'm going to jinx it by saying anything out loud. But I keep thinking about how desperately I searched for "does it ever get easier" in the early days, and I want to be that thread for someone else tonight. My daughter was diagnosed with Crohn's just before she turned 6. The months leading up to the diagnosis were genuinely some of the hardest of my life. She was losing weight, she was exhausted all the time, she had pain almost every single evening after dinner and I kept being told it was probably nothing. I'm not going to get into all of that because honestly I'm still processing it. But this past week. She ate breakfast every morning without crying. She went to school five days in a row. On Thursday she ran around the backyard with the neighbor kids for almost an hour and then came inside and said she was hungry. I had to go sit in the bathroom for a minute because I did not want her to see me cry. Some things that actually made a difference for us, not medical stuff just our daily life: Slowing way down at mealtimes. We used to eat fast, we're a busy family. Now we just don't. We put on something calm, we sit, she chews, nobody rushes anywhere. It felt impossible for the first month and now it's just what we do. Letting her have a say in what we try. When she felt like nothing was safe and everything was the enemy, giving her back even tiny bits of control helped so much. She picks between two or three things I know are okay and suddenly she's not fighting me at every single meal. And honestly, the biggest thing, connecting with her GI team and actually asking the questions I was embarrassed to ask. How long is a flare supposed to last? Is this amount of urgency still normal? Can she swim? The answers weren't always reassuring but knowing was better than spiraling at midnight with google. If you are in the thick of it right now I'm not going to pretend it's easy because it's not. But we had a good week and I wanted to put that somewhere.
Replies · 7
the part about going to sit in the bathroom so she wouldn't see you cry. I felt that so much. you deserved that cry. and she deserved that whole hour in the backyard.
Thank you so much for posting this. My little one is only 2 and we're still in the figuring-out phase, not Crohn's specifically but gut stuff that nobody seems to have a clear answer on yet. I'm sorry to kind of insert my own situation. I just, reading this made me feel less alone. The midnight googling is so real. Can I ask, when you said you asked questions you were embarrassed to ask the GI team, did they seem annoyed? I always feel like I'm being dramatic or wasting their time.
Please don't apologize, gut stuff is gut stuff and hard is hard regardless of what the paperwork says. And no, they were not annoyed, or at least they didn't show it and I think a good GI team genuinely wants you to ask. What helped me was writing the questions down during the week so I wasn't trying to remember them in the exam room while also managing a tired six year old. I'd have my little list and just go through it. One of the nurses told me she wished more parents did that. You are not dramatic. You are paying attention and that matters.
The writing questions down thing is genuinely life-changing. I have twins who are 3, completely different digestive systems somehow, and I kept getting the two of them mixed up in my head at appointments. Now I have a note in my phone per kid. Revolutionary. I felt so dumb for not thinking of it sooner but here we are.
Ok the list idea is so simple and I never would have thought of it. I always freeze in there and then remember the important thing in the parking lot. Thank you. Both of you honestly.
Also, someone just messaged me privately to ask about the slow mealtimes thing, so I wanted to say here too in case it's useful: we're not doing anything fancy. It's literally just we turn off the TV during dinner, I put on a playlist she likes, and I stopped standing at the counter eating my own food while she ate at the table. That one change felt small and was apparently not small at all for her. She started talking more at dinner. I think she just needed me sitting with her.
I stopped standing at the counter eating my own food while she ate at the table. okay I have been found out. with two 3 year olds dinner is basically triage but this is a good nudge.