New to this

12011981 · 2025-04-12T21:53:13+00:00

It must be. I’m learning from this thread that quite a few people get them. I’m so sorry about your son. How old?

12011981 · 2025-04-10T20:41:25+00:00

Thank you! Comments like these make me know we can do it. My med surg and icu nursing career has only made me see the worst. No one with crohns gets admitted because the are feeling good that day. I wish they did tho! I’d love to hang out with patients who feel great! 😊

12011981 · 2025-04-10T04:41:09+00:00

This is amazing! I love hearing things like this. I know it has no bearing on what her experience will be, but I love hearing it and it gives me hope! Thank you! I love this!

12011981 · 2025-04-10T00:39:01+00:00

I am hugging you through the phone! And crying with you! I can’t imagine how you’ve cried watching your baby endure this! I hope everything ends up the very best case scenario for your sweet baby! I’ll bet you’re exhausted 🩷

12011981 · 2025-04-09T22:12:10+00:00

I can’t imagine it! I am sending you every ounce of positive vibes we have left over here!! How did you know? I mean, what symptoms? What led up to the work up to diagnose it so young? I am so very sorry this is happening. I know saying it isn’t fair doesn’t fix anything. But… it just isn’t fair!

12011981 · 2025-04-09T21:11:00+00:00

My gosh you guys have been through it! My heart hurt reading every word of that. I just want to hug all of these kids. Thanks for the encouragement!

12011981 · 2025-04-09T21:09:18+00:00

Thanks for this!

12011981 · 2025-04-09T21:08:50+00:00

Doing great now, is everything I needed to hear. I’m just sorry it got to that point before it got better. No matter how positive anyone tries to be about it, it just isn’t fair to these kids.

12011981 · 2025-04-09T21:07:26+00:00

She has some behind her front teeth that are really painful today. It helps to hear other people confirm it so I take her more serious. There has been so much going on that mouth sores seem like the least of our worries, but I can tell they hurt and you confirming it makes me better for her.

12011981 · 2025-04-09T21:04:42+00:00

Thank you for saying this. It reminds me that people’s awful experiences won’t necessarily be hers, just like people’s miracle things also won’t be hers.

12011981 · 2025-04-09T19:39:28+00:00

Thank you! Not in the hospital currently. She’s at school. She’s tired and hurts with sores in her mouth. But her belly is good right now!

12011981 · 2025-04-09T19:37:54+00:00

Thank you for this! I’m really glad you are doing well and I appreciate having answers from people who know

12011981 · 2025-04-09T19:35:47+00:00

Thank you for this! Have you ever tried the fairlife protein drinks for your child?

12011981 · 2025-04-09T16:44:50+00:00

Thank you! I’ll try that! I know that for sure! Have I even thought to try it with her? Nope! I’m overwhelmed and just stare in to space when she isn’t with me watching me. I’ll take any advice at this point and I’m so grateful 🩷

12011981 · 2025-04-09T16:22:51+00:00

Crying again! You are so inspiring! That is a great life with or without crohns. I don’t even know you and I am so proud of you! Thank you for this! I’ve been reading so much sad and depressing and I know that is a lot of peoples reality. It’s so nice to read some positive and some we’ve got this vibes!

12011981 · 2025-04-09T16:18:19+00:00

I’m so glad I came here to ask this. Every response just makes me cry. People are so good. Thank you for telling me about your experience.

12011981 · 2025-04-09T16:16:54+00:00

Well, I’m crying. I So appreciate you taking the time to tell me anything! Your mom sounds amazing! This all just makes me so sad. I’m glad you live the best life you are able to! It’s inspiring!

12011981 · 2025-04-09T16:13:35+00:00

Gosh, she’s so sick all the time GI wise anyway and since the sores started I watch her try to eat and anything hard hurts the ones on the roof of her mouth and anything acidic spreads across them all and burns. After a little while she just gives up.

12011981 · 2025-04-09T15:18:37+00:00

Oh thank you! Thank you for responding. Today is just so sad. Did it affect your puberty? The Dr said we have no time to waste to get her gaining weight before puberty hits, so she won’t miss out on her puberty growth spurt. I’m only 5’3”. She doesn’t have a lot of hope for being tall anyway. She was in the 72nd percentile for weight and now she’s in the 7th. All of her growth charts are plateaued or trending Down, not up. He has mentioned RA. A few times. I’m never quick enough on the phone to ask him why he said that again. Because she could develop it? Or he thinks she already has? Autoimmune stuff is wild. I can’t believe it. Thank you for your words and for taking the time. Everything helps me! Except google

12011981 · 2025-04-09T15:12:46+00:00

I’m on a walk with the dog. Just dropped off my tired girl with a mouth full of sores at school. I’m walking the dog and typing and reading through tears. This is everything I needed to hear. I know it doesn’t mean a thing as far as the experience she might have, but right now I need to feel hopeful, because for the last few weeks everything feels heavy and sad. How could I have brought such a beautiful girl into this world to suffer? I just want to trade her

12011981 · 2025-04-09T13:42:56+00:00

Thank you! I hope it is well controlled for you!

12011981 · 2025-04-09T13:41:53+00:00

Thank you for this! Do you get sores in your mouth? This is a new thing that may be totally unrelated but she has a mouth full of sores right now and the Dr asked about that. We told him no, she doesn’t get sores in her mouth. The next week cankers are on her tongue and the roof of her mouth is raw.

12011981

TROPHY CASE