We got our daughter's Crohn's into remission and I still can't believe it's real
I almost didn't post this because I'm genuinely scared that writing it down will jinx it somehow. But I've been lurking in this community for almost two years reading other people's wins and I kept thinking, if we ever get there I'm going to share it. So here it is. My daughter is 4 now. She was diagnosed at 2 years and 8 months. The 14 months between noticing something was wrong and actually getting the diagnosis were the worst of my life, no exaggeration. She was dropping off the growth chart, having bloody episodes that I won't describe in detail, not sleeping, inconsolable some nights. I blamed myself constantly. I thought I had done something wrong with her diet, introduced the wrong foods, something. That guilt was so heavy. Then the diagnosis came and in a way it was a relief to have a name for it, but then the reality of what it actually meant hit us and the relief evaporated pretty fast. We've been working with her GI team for about a year now. About six weeks ago she hit remission markers for the first time. Her last labs came back and her doctor actually said the words "we are really pleased with where she is." She ate a whole bowl of oatmeal with banana this morning and didn't cry afterward. She just went and played. That sounds so small. It's not small to us. I guess I just wanted to say to anyone in the thick of it right now, the diagnosis period, the trying to figure out what her body can handle, the fear every single time she eats something new. I see you. It can change. I don't know if remission lasts forever or what comes next, but today my 4 year old played after breakfast and I just sat at the table and cried a little. If anyone wants to talk about the journey I'm happy to. Still figuring so much out but feeling something I haven't felt in a long time.
Replies · 11
Oh my dear, I had to stop scrolling when I read this. My granddaughter was diagnosed a few months ago at 4 and we are still in that exhausting figuring-it-out period. Some days I feel like I am failing her because nothing I cook seems safe or right. The image of your little one just going to play after breakfast, just going. That is everything isn't it. Thank you so much for writing this down even though it scared you.
Nuran, I remember feeling exactly that way. Like every meal was either a gamble or a failure. I want you to know, the figuring-it-out phase does not last forever even though it absolutely feels that way right now. Is your granddaughter's GI team in regular contact with you? That consistent check-in piece made such a difference for us.
We see them every six weeks right now. I do have a question and maybe it is old fashioned but, did you find that keeping a simple food and mood diary helped at all? My mother always kept notes on everything and I started doing the same for my granddaughter. I didn't know if the doctors would think that was silly.
This is the kind of post that made me join this group honestly. Congrats to your whole family, remission at 4 is huge. The journey you described before getting the diagnosis, 14 months of that, I respect you so much for getting through it. Give yourself some credit too, not just the GI team.
Not silly at all. We did a food and symptom log for months and our GI literally said it was one of the most useful things we brought to appointments. The patterns you notice as the person living with the kid every day, doctors can't see that from a 20 minute visit. Keep doing it.
Nuran the diary is such a good instinct. We kept one for almost eight months. It felt obsessive sometimes but it gave us language to describe what was happening between visits. The doctors weren't dismissive at all, they actually asked us to keep doing it. Your instincts are good, trust them.
ok I know my daughter is only 8 months and Crohn's is not on our radar at all but I came here tonight googling something else and I ended up reading your whole post and I'm just sitting here in the dark feeding her and crying a little. you described that guilt so exactly. the feeling that you caused it somehow. I feel that about everything with her right now and she doesn't even have a diagnosis for anything yet. I'm so glad your little girl played after breakfast. I'm so glad.
Hey, please be gentle with yourself tonight. That middle of the night feeling is so isolating. Whatever you're going through with her, you're paying attention and that matters. If anything is worrying you medically just loop in her pediatrician, even the small stuff is worth mentioning. Sending you both so much warmth.
My kid is 13 and we've been dealing with gut stuff for a couple of years. Crohn's hasn't been ruled in or out yet, still going through the process. Reading about your daughter getting there at 4 after a diagnosis at 2 is honestly something I needed tonight. The thing I relate to most is the fear every single time they eat something new. My 13 year old has started just refusing new things entirely and I don't blame them honestly, the unpredictability is so exhausting for kids too. We don't talk about it much at home because they get embarrassed but I can tell the anxiety around eating is growing. Did your daughter have any fear around food itself as part of this, or was she too young for that to really register?
That's such a real question. Honestly yes, even at 3 she started pulling away from the table, getting tense before meals, crying when we brought food she'd had a bad experience with. Her GI flagged it early and suggested we mention it to her pediatrician too because the fear can kind of take on its own life separate from the physical symptoms. For a 13 year old I imagine that's so much more layered, the social stuff, the school stuff. I don't have lived experience at that age but I just want to say that you noticing it and caring about both the physical and the emotional part of it, that's already a lot. I hope you find some answers soon with the diagnostic process.
The embarrassment thing is hard at any age. My son is 4 so I can't speak to 13 but I think you're doing the right thing not forcing the conversation. Sometimes just sitting next to them and not making them talk is more than enough.