IBD Patient Education Conference

Wow!  What a day!  We attended the IBD Patient Education Conference today.  Ryan, Braden, Matthew, Zach, Grandma Mary, Grandpa Steve and I all went! Matthew's Doctor, Dr. Tung was there and did a lot of presenting.  She stopped by and saw us after the opening session to say hi and see what our schedule was for the day.  Our first session was The ABC's of Crohn's.  To our surprise, the presenter was Dr. Stephens, the Doctor that did Matthew's Colonoscopy.  There was a lot of information in that one.  The sessions were kind of small and informal so it was easy to ask questions. 

After the first session Dr. Tung came and found us and introduced us to Ruby.  Matthew and Ruby hit it off.  Ruby is one of the Directors of the CCFA and helps run Camp Oasis, a camp for kids with Crohns and Colitis.  Ruby and Dr. Tung told us a little about the camp.  Everyone that volunteers, works and attends the camp have IBD or work in GI.  Dr. Tung is the medical director of the camp! 

They had a room set up with a bunch of vendors and such.  We got lots of goodies.  They boys got water bottles and Matthew got a bag.  Lots of information, key chains, pens, band aid holders, and beads!  We met the lady in charge of the Take Steps Be Heard walk, Tovah.  She is a sweetheart as well!  We also got our "I CAN'T WAIT" cards that we will be carrying with us where ever we go.  They allow us to use any bathroom anywhere!  They have the Minnesota Law(Statute 53.8 sec 31[325E.60]) on them, that basically says they have to let us use the bathroom even if they don't have a public bathroom or if they have a "you need to buy something to use our bathroom" policy. 

We all headed back into the main Ballroom for lunch.  It was really good!  During lunch Dr. Tung got up on stage to do a little plug for the walk in May.  She said "one of my 7 year old patients already has over 20 walkers in his group!" Yep she was talking about Matthew's Monsters!!!!

After lunch my parents took the boys and headed to the MOA.  It was a little hard to concentrate on anything with them there.  Next time we will be leaving them at home.  The next sessions started about 1:00.  We attended Pediatric surgery in Crohn's.  There was the presenter, Dr. Porter from Mayo, and one other guy in there.  So we did it VERY informal.  He showed us a few slides and talked just a little and then we basically just talked about anything we had questions about.  Found out that the only other guy in there was also from Rochester and his daughter was also Dr. Tung's patient.  We learned a lot about stomas and fistulas and blockages.

The last session of the day that we attended was "Mental Health and School Issues".  It was presented by a Social worker who grew up with IBD.  She talked a lot about setting up 504 plans and being very supportive in their journeys.  She also talked about getting the pediatric patients signed up for Camp Oasis.  This session was also very small, 3 other parents and 1 support person.  Each parent talked about their kids and gave us a lot of advice.  All of them had been dealing with it for a few years.  Made us feel a little better knowing that there are other parents out there dealing with this.  I have always known there were but now we actually talked with some of them.

The Closing statements took place at about 3:15-3:30.  Dr. Tung got up and thanked everyone for being there and thanked all the presenters, since they all donate their time for this, and then gave away the tickets for a few different things that they had sign ups for.  I looked at Ryan and said "I didn't register for any of those did you?"  As they called my name for 2 sets of tickets to a Gala at the MOA.  Not even sure what it is all about.  Ryan says he didn't put my name in it and I don't think my mom did it.

All in all it was a great day.  We met a few new people that are going to help us through this!