My name is Roy George and I’ve had SBS (Short Bowel Syndrome) since birth. I’ve spent my fare share in the hospital because of Sepsis as well as bowel resections and other medical tests, surgeries, and procedures. From birth until 24 years old, I had a Hickman Catheter which was placed in my chest until I was 24 years old. I would like to share some of the survival points as opposed to talk about the trials. Did I have trials? Absolutely! Don’t we all who have chronic illness and rare disease? However, I’ve realized that I will absolutely use my rare disease to help others and teach lessons to others and hopefully give them wings.
While growing up, my mom-who raised my older brother and I single highhandedly- until I was 13 years old. She never said NO. She never said “You’re unable to because you have this sickness” I am blessed to have performed Off-Broadway, Hiked mountains in Utah, Swam in Oceans, Lakes, Pools and Hot Tubs(much to my doctors frustration). I have also skied at Mount Killington in Vermont and upstate New York. To say I’ve gotten to do everything and anything I want to do is an understatement. I also am a music director and performer on the east coast (please see my website for videos of my performances).
At 27 years old, I have blown many doctor’s mines as they did not expect me to live past the age of 2 years old. I now am giving back as a music director at a performing arts camp, Drama Club Sponsor at a Virginia Beach high School as well as a music director for the theater department for another school and a substitute teacher and motivational speaker.
Occasionally, I am fatigued and exhausted but truly have made it a point to live my life to the fullest extent. I eat and have always eaten. Yes I’ve had terrible moments where I’ve been septic and had extended hospital visits. There were a few times where my mom was nervous I wasn’t going to make it. Its such a blessing to have pulled through and can now influence peoples lives of any age.
Now, my life is totally different I started on this medication which increases bowel absorption and I am happy to report I do not have a catheter anymore and a completely off TPN as well as IV Hydration (Before this, I was on TPN 5 nights a week and fluid the other 2). Just as a precaution this is my situation and different levels of SBS may determine a different outcome. It is best to consult your doctors And healthcare team to see what options are In store for you. When discussing, please make sure you weigh out pros, cons, Risks and rewards.
To say my life has drastically changed is an understatement. Imagine having to have a Jagen Ostomy and a Hickman Catheter and taking a trip that is more than 24 hours. The amount of supplies I had to bring and our home-care had to ship to the locations I was going to be at. Now not having any of that, I can travel at my own free will. I pack a bag or small suitcase or large suitcase (I don’t travel light I’m a clothing horse) and be on my way. It truly is a fantastic and wonderful experience. I am no doctor and everyone’s situation is drastically different even under the umbrella of SBS so If that’s something you want to recommend to people, Please feel free to talk to you healthcare professionals and do your own research.