Mom of just diagnosed 15 yo

[Livvies Mom]

I have lots of specific questions to post already, but I figured I should start here to introduce us.

My 15 yo daughter Livvie has been experiencing periodic nausea and controlled loose stools for several months, along with mouth sores. She lost 15 lbs in 4 months. She was diagnosed two days ago with Crohns after her CT scan:

"CT findings compatible with IBD, most severely affecting the terminal ileum but also affecting the more proximal ileum. Bowel wall thickening and mucosal enhancement also present within jejunal loops and involvement of the jejunum is suspected"

We have been in limbo for several weeks waiting for various appointments, referrals and test results, and in that time her condition has declined quickly as we have tried various remedies and diet protocols that did not work well for her (Prilosec, BRAT diet, Ensure, etc). The Prilosec caused vomiting and made her drool badly. She despises the Ensure/Boost and won't drink it. The BRAT diet just seemed to make her feel weaker and weaker. For now she is back on regular food, and we are just trying to make wise choices and keep notes of how each food affects her.

We got the diagnosis by phone on the 15th, but we are still stuck in limbo until the 23rd when she returns to the GI doc. She is scheduled for colonoscopy and endoscopy on the 21 and I think he is waiting until after that. Hopefully on the 23rd they can start some kind of treatment.

I'll be posting a LIST of questions on a new thread. Thank you'll so much in advance!

 

[Jennifer]

Just wanted to say welcome to the forum Livvies Mom!

I'm sure you found the parent's section already. Hopefully her scopes went well. As for diet, the low residue diet can be helpful but I'm sure that's along the lines of what you're doing already. Let us know what treatment the GI suggests. Good luck to you and especially your daughter.

 

[kate62]

Hi,

My son--now 18--was diagnosed when he was 15. Hang in there--good times are to come. I remember being completely lost with the diagnosis, and the doctors gave NO real insight about diet. I have a cousin who has had crohns for many years, and here are a couple of good resources: The Maker's Diet and Restoring Your Digestive Health---both are by Jordan S. Rubin M.D. and hes has Crohn's Disease. These gave my son the confidence about his diet, and it makes sense.

My son is on Remicade every 8 weeks and just started college in the dorms 3 weeks ago. It's all a transition, but it's all good. Keep in mind that foods that work for some don't work for others. Find out what foods work for your daughter, but keep some of these resources in mind as a guide. There is a reason why some foods (SUGAR) aren't so great with Crohn's patients.

Good luck with the medicine journey. I sincerely hope you will find a good medicine that works for your daughter!

 

[Livvies Mom]

Thanks so much for your kind words!

 

[ZombiePenguin]

Hey, I'm just a kid myself and while I have ulcerative colitis instead of Crohn's I too was diagnosed at 15 and my mom has been quite the hero throughout it all. I just wanted to say good luck to you both and to remember just how strong people can be, as I'm sure your daughter is a very strong person.

 

[Bmwife]

Awww zombie Penguin, what a lovely compliment for your mum. Peoples resilience & bravery throughout always inspires me. Livvies Mum you will meet some fantastic people on here. All the best to your daughter & yourself

 

[Livvies Mom]

Thanks so much ZombiePenguin,
I'm struggling to be the mom she needs right now, balancing nurturing support with firm coercion, letting her make decisions, but stepping in when she needs some ordering around, LOL! Hopefully I can be her hero too.

Even though you are "just a kid", I'd take parenting advice from you any day. Your perspective and experience are so valuable.

 

[ZombiePenguin]

Just think, when I started out I was doing so much to just believe it wasn't happening. After my first remicade I think things started feeling so much more real, and I think that's when I was really grateful my mom was there. I hope whatever your daughter has that she has a much easier solution and that she doesn't ever have to do remicade, but it's definitely a learning process to be able to open up to one's parent or one's child in order to just have that constant communication. I've always been a very independent person and it was very new for me to be able to trust that I had someone to fall back on, but once I did it was much easier to at least take on the treatments and procedures. Trust me, my mom's like my disease manager haha it's the only way I know how to explain it. Even if she doesn't say it or even doesn't know it yet, she's already got a hero for her

 

[Livvies Mom]

You hit the nail on the head, DJ. She was just at the point where she was becoming very independent and self sufficient, and now she has to take a step back and be "mothered" again. We have decided to try Prednisone/6MP for now, as she didn't want to deal with the needles. We will reevaluate in a few months and possibly start Humira if needed, but I'm glad she will have the chance to ease into it and get used to the idea of medication being part of her life before it comes to that.

 

[ZombiePenguin]

That's almost exactly the plan I was started on once they realized I had a reaction with Pentasa. Being on pred can be quite horrible with mood swings, hunger, and abrupt water weight gain. I was on it for a while and while it did puff me out a lot, being off it dropped almost all the weight in just a very short time. I'm on 6MP/Remicade now and the 6MP isn't bad at all. If the side effects of the pred start becoming very apparent she might begin to feel very uncomfortable, how long will she be on pred?

 

[Livvies Mom]

The doctor said she will take the pred 4-8 weeks, the bottle says to call after 2 weeks to get instructions for tapering. She hasn't started the 6MP yet, waiting on test results first.

 

[ZombiePenguin]

She should be good then, if weight gain does start up I would advise getting her bio oil. It puffed me out and as a result of that I have stretch marks all over my legs because of the water weight. Tapering off is the best thing in the world, it's always a good day when you can drop another tablet. If you do officially start 6mp, I hope it works quickly. I hated having meds fail to work, and they still sort of don't for me. Just thought I'd mention the bio oil because I got it a bit too late and it drives me insane.