Four years ago my daughter had surgery for her Crohn’s. She was so weak I had to help her up and down stairs. This weekend at her XC banquet - she won the “Guts and Grit” award for her amazing work ethic and accomplishments this season. An appropriate award for many reasons! ❤️

For the FIRST time since any of our family of 5 were diagnosed with #IBD - we are ALL currently in remission. It has taken over 10 yrs and many tough periods. I was not sure we would ever see this day and I could not be more grateful. Now to keep us this way… #TimeForSummerFun

“Just because you carry it well doesn’t mean it’s not heavy.” I feel this. I try hard to carry it well - but having our family of 5 all with #IBD is so heavy at times. (Often I do NOT carry it well. And I don’t carry it alone. I am grateful for my husband and friends/family.)

Infusion time = serious crafting time! #IBD

My daughter is away from home visiting her cousins. This may not seem like a big deal - but for our #IBD kid - it is! She is doing her own ostomy bag change. She is managing her diet. My sister is doing her med injection. She has come so far in 3 years since her surgery! ❤️

This was an exciting find for our house. My girls LOVE Lego. Finding a set with a figurine that has an ostomy really made our day. #IBD

I had a wonderful day @ClevelandClinic for the Kaplan Pediatric IBD Symposium with this former Pittsburgh resident. Several great talks, including @SCKimIBDMD on the power of the “omics” in clinical IBD care.

We’ve had a weird #IBD week. My middle started to have nausea, stomach pain, and complete lack of appetite. This was a case of it looked (mostly) like a duck, quacked like a duck….but wasn’t a duck! Not her IBD we think, but constipation. Not what I was expecting, for sure.

Just two sisters with #IBD at a track meet together! So proud of them!

“Draw a picture to help you solve the problem.” Not sure this was what her math teacher had in mind! 😂 (Not an #IBD post - just made me smile)

I worry a lot about my girls’ mental health, especially given their #IBD challenges. One found this chart to fill out this year for fun (their words). I love it, because get a peek of their feelings over time - without having to poke a teen too much!

Success! We got approval today! Thank you for all of your support. We are so fortunate to work with some amazing providers who help fix these issues. This highlights the constant battle many face to access their #IBD meds. I worry for those fighting with less support.

Update: I have messaged with Highmark and spoke with a complex case manager. Hopefully one of these avenues will get a resolution.

Highmark says in their recorded message as you wait: “Highmark cares about you, and wants you to stay healthy this busy holiday season”…not sure I believe it! @Highmark_BCBS

I have spent 2 lhrs (and counting) on the phone today with Highmark to get my daughter’s #IBD med…that she has been on for a year. She is due her next infusion next week and our plan year just restarted 12/1 - so now her infusion was denied. @Highmark_BCBS

When your #IBD kid feels ready to do her own medical paperwork…

Just met a family at their son’s first med infusion for #IBD. Watching the apprehension on the mom’s face made me feel a bit emotional - I know the feeling all too well. Hoping for a cure, or better treatment options, for kids with #IBD.

A possible sign you have an #IBD kid: My 7yr old refused a snack from someone by saying, “No thank you, that has maltodextrin in it.”

I am having the darnedest time getting medical records transferred. On one phone call I learned that the records are “with the copy service”. I guess I don’t know much about transferring records…but they are electronic…what is a copy service doing?

Double trouble with #IBD. With these two on different infusion intervals, they overlap infrequently!