As you know, Brandon went through his 1st surgery 3 weeks ago today and is back in school as of yesterday. He is doing amazing!
You and I have talked often and as mom's, hate to see our kids go through this. But after the last 6 months of having him take every UC medication under the sun, horrible side effects, sitting for hours getting REMI infusions, just to have nothing help, surgery was our last resort. If it hadn't happened under an emergency situation, I would probably still be trying to put it off.
But fate took over and he had the surgery and he tells me that he hasn't felt this good in a year! One surgery down and two to go.
I totally agree with everything that Bluegrass says below. Take what you need for her to be comfortable in the hospital. After two days, Brandon was wearing his own pajamas and walking the halls. You also know that your daughter can contact him on facebook now that they are FB friends and she can ask him anything she needs to know about the surgery and afterwards.
He is already changing the wafer and bag himself and as Bluegrass states below, it does smell a lot worse in the beginning. We use the M9 spray everytime we empty the bag. And yes, it will make noises from time to time. When he eats something gassy, he has woken up with his bag puffed up like a balloon! we have also tried a variety of bags and he has decided that he likes the Hollister 18182 (nude color bag with velcro enclosure). There are so many different types of supplies out there that in the beginning it is really overwhelming.
We also ordered two Ostomy belts from OstomySolutions.com . they come in White and Black and are just like a tube top with a pouch to hold the bag. He wears them every day under his clothes, and you can't even tell he has it on. The gentlement that owns the company (Les) designed them when he had the surgery and was such a pleasure to deal with ... he rushed out that day to get our belts in the mail for us and we had them the next day.
Just know that there is light at the end of the tunnel and it is not a freight train! Once she is feeling good, she will be able to be a kid again Let me know how it goes with the visit with the surgeon.
14 yr old male, Diagnosed February 2011. Phase one of 3 stage surgery on 8/30/11, Total abdominal laprascopic colectomy and ostomy. UC FREE! No meds.
Previous meds included: Remicade, 6MP, ,Poly-Iron, Canasa, Asacol 800HD, Colazal, Levsin, Pepcid,Sulfasalazine,Prednisone