Knowing there's a support group available ONLINE that's dedicated specifically to the rare condition so appropriately named (Short Bowel Syndrome), has provided me with incalculable support & hope. On top of all the benefits available during challenging times, the SBS Foundation, Inc. provides me with immediate relief from worry/anxiety/etc. simply because I know it's 'here'!
For 44 years I never ever met, or even heard, of other people with SBS or SBS symptoms and my doctors were often at a loss on how to help me. Since birth I have had to deal with this disease with only the support of my mom who did her very best but couldn't understand why I never got better. In desperation we searched the internet for any kind of information on SBS and how to live with the symptoms, esp. the mental health aspects. Finding the Short Bowel Foundation's facebook support group for adults was a crucial turning point for myself and my family. Andy and the members of the group have provided me with the information and emotional support that I had been looking for all my life! The day I found the SBSF was one of the best days of my life! I have participated in many many health and support groups and the ones run by the SBSF are the best by far.
This group is a God send to the SBS patients. The group provides support and advice to suffers with no idea of where to turn. Members are generous with their personal stories...and compassion. No one offers solutions without advising the new patients talk to their Dr's. It is a friendly and welcoming group that opens their arms to new members, making them feel welcome.
Short Bowel Syndrome Foundation provides much hope to those with such a rare diagnosis. My son is now 12 with a very short gut and when you don't know anyone with the same condition having an organization such as this one gives you a sense of community.
I have had SBS since March 2010. Didn't know anything about short bowel or even that I should have. GI. I'm so thankful for SBSF and its support group, as I have learned so much about SBS and have taken information from it to pass on to my doctors. SBS is a lonely, hard thing to live with as most people (including medical people) have no idea how to treat us. This nonprofit is a godsend for putting us together with others who suffer with SBS.
My 3.6 year-old son has short bowel syndrome since birth. We were scared and isolated. We live in Italy and here we have nothing similar to Short Bowel Syndrome Foundation. When I found them online, they provided what we so desperately needed: information and connection to others who were going through something similar. Andy Jablonski's foundation and all the people involved gave us the most priceless gift: hope.
So great to have a foundation dedicated to the success of short bowel patients and their families! It has helped us and our son tremendously; with lots of support and thought provoking ideas to give our son the best possible care. Having a foundation for Short Bowel is VERY important to us! Here's a picture our our Short Bowel Son George. He's 2.5yrs old.
Hi! My name is Pilar and I am the mother of Albert, a seven year old boy who suffers from severe short bowel syndrome. We are from Barcelona (Spain). Albert is on TPN for 19 hours a day at the moment. He is a clever,active and happy guy who goes to school and does lots of things. Key, for us has always been what he eats orally. We control sugar in all its forms and carbs. His nutrition is based on healthy fats and vitamins plus a bit of fibre. For us SBSF has been great help and support through the years. I met Andy when Albert just left hospital after spending there 9 months (he got NEC at six days of birth) and he has always been there for us to give us advise and comfort. I think this foundation is an awesome project which helps lots of people from all around the world that get connected through it. Here, in Spain we don't have a foundation like this and I am dreaming someday we can work together and build a Spanish branch of this wonderful project.
I've had SBS for 5yrs after seatbelt trauma in a car crash. I found plenty of information and support for having a stoma but little to none for an adult with SBS. I came across the Foundation through a FB friend and the advice and support has been invaluable. You realise you aren't on your own and regardless of how you came to have SBS there is always someone managing the issues you are struggling with. This is a wonderful group of people who share their greatest fears and the funniest toilet humour!
My granddaughter Aria was born April the 9th 2016. 2 days after she was born she had surgery for a bowel obstruction. When the surgeon went to do her surgery he discovered that 95 percent of Aria's small intestine had died. She stayed in the hospital in Austin. When she was released from the hospital she went home with a central line for TPN, had a Stoma for her feedings and G button for bile output. In August she went to Omaha Nebraska for a bowel reconnection. Dr . Mercer was able to reconnect her with 8 cm of small intestine. She's back home now in Waco Texas. She has a G button and her central line for TPN and Omegaven. She's doing amazing. My daughter (Aria's mama ) and myself have learned a lot from her journey. We are on the Short Bowel Support Foundation page and it's been a great support for our family. #SBSAWARENESS2016