A fantastic week at the Oley Conference

All I can say is WOW! The Oley conference is an amazing place to learn about about new research and therapy, check out new products and most of all connect with other consumers, caregivers and professionals that deal with TPN or EN day in and day out. This years theme was "Help Along the Way!" a great slogan that we all really need day to day..no matter what our health requirements are!

Besides the ThriveRx booth which displayed our products, educational materials and awesome staff, ThriveRx and the Oley Foundation provided a "Hydration Station". The purpose of this display was to educate Short Bowel consumers on the different types of Oral Rehydration Solutions that are best for us to drink to avoid dehydration hydration. We offered the Jianas Brothers ORS (which I drink) with CrystalLite flavoring, Ceralyte, G2 with salt and plain water. They were ordered from saltiest to no salt. We had many people stop by to try the ORS options and even had a few converts that had never tried them before but found a drink they liked. We also offered samples of the ORS, Ceralyte and Crystal Lite for people to take home and try on their own. Orlando was very hot and humid so having the Hydration table was nice for people to come and fill-up their water bottles to keep sipping all day long.

I also got to sit in on an amazing presentation of SBS treatment, future cures strategies for Intestinal Rehabilitation. Dr. Daniel Teitelbaum is working on lengthening the bowel by using an interal device inserted in the intestine for 7 days which slowly increases the length. Research has show growth of 12cm in just 7 days! They are currently in pig trials and hope to start clinical trials in a year. Amazing stuff! I also heard from Michael Seres, a small bowel transplant patient from the UK, who spoke on the power of social media when working with your medical team. I have followed his blog "Being a Patient isn't easy!" detailing his transplant surgery, so I was excited to connect with him.

Above all, I loved connecting and re-connecting with other TPN/EN consumers. I saw many people I met last year, (Errol, Jo, Duvall, Kat to name a few) and met many new people too. It's a great place to meet others that have gone through similiar health experiences and completely understand what you live on a day-to-day basis.

For those of you that are using TPN or EN, I highly recommend attending next years conference or one of the upcoming Oley Regional meetings. The people and topics are very inspriational.

Remember we all need a litle "Help Along the Way" to keep Livng, Loving and Laughing!

 

Welcome to Oley!

The Hydration Station!

Our Booth!

 

It's that time of year again....packing UGH

Summer is finally here and so is our much awaited family vacation. But for rme it adds to my "packing" anxiety that I have always suffered from. Even a short weekend trip has caused much stress on what I could wear vs what I will actually wear. I have been known to pack a 50lb bag for a weekend trip and 3/4ths of it came home unworn. Short Bowel Syndrome and an ileostomy have caused my "packing" anxiety to be much worse. I no longer have to plan what I want to wear but also what medical supplies I need and where they need to be sent. The first thing I do is call the hotel to let them know I will have a package coming and will need a refrigerator to keep supplies cold. Most of the time they don't charge for deliveries or refrigerators but have had that happen once even after I explained it was for medical reasons. I submit all my supply orders with the correct shipping address and arrival dates so everything arrives on-time. TPN and some IV fluids are refrigerated and  date sensitive (anwhere from 7-14 days) so it's important that it arrives at the correct time. ThriveRx is very helpful about getting my supplies where I need them to go but I still have to figure out how many bags of fluids, tubing, flushes, port change kits etc. I like to be as thorough as I can to avoid emergency shipments of supplies.

My ostomy supplies are another issue, I have to plan enough to cover the trip but also extra's in case of an accident or blow-out. Those supplies are harder to get since you can order only from the supply company you have signed up with, it's not like you can walk into any pharmacy and pick up any supplies you need.  

Since we are driving, all the medical stuff takes up precious cargo room so I try to pack as light as possible. When I fly, I always take a days worth of supplies in case my checked bag gets lost. Flying has it's own problems with going through the security checkpoint. I am always getting asked what fluids I have in my pocket and they check any fluid bags in my carry-on. Each time I fly, I allow for more time to get through screening since each airport is different. One might let you go through easily where others give you the whole bomb pat-down. You just never know!

After the family vacation, I am going to the Oley conference in Orlando. The Oley foundation supports those on Parental and Enteral nutrition by education, outreach and interaction. I look forward to meeting others that I interact with on their Inspire website. The attendees are from all walks of life, medical conditions and ages. It's very inspiring to watch the young children that have never know a life without lines and backpacks go about their lives like it's no big deal! I willl keep you posted from there.

So for now I must finish packing so I can rejuvenate at the beach to keep on Living, Loving and Laughing!

The small amount of supplies I am bringing just to get me started...