They say timing is everything, and that couldn't be more true for my daughter Logan, and her new Short Bowel Syndrome Journey. In March 10th 2016, we welcomed our second child, JJ into the world. We were elated! Not only were over the moon for our son, but our daughter Logan (2 1/2 at [...]
This is a story about one of our short gut families and their journey. This is Rachel and Aria's story! Hello my name is Rachel my daughters name is Aria she is about to be 8 months! I had a pretty normal pregnancy until my 22 week appointment. They did a full anatomy scan on [...]
By Jenny Jones: Contributor: The Mighty Jenny was diagnosed with familial adenomatous polyposis at age 8, and after six years with an ileostomy now has a straight pull-through. She has a master’s degree in social work and shares on her personal blog Life’s a Polyp. “You don’t have anything wrong with you. You have no issue [...]
My name is Cody Wilson. I was born in Seattle, Washington on May 27, 1992. Life for me was hard from the beginning. Being born 9 weeks early saved my life. The doctor found I had developed Necrotising Enterocolitis and before I knew it, I was in surgery. They removed approximately 2 feet of my [...]
Owen has had three surgeries: jejunal resection for an atresia on day 2 of life, another resection with jejunostomy/fistula placement on 10/05/12 for a total bowel volvulus and ostomy takedown and further resection on 01/08/13. After his three surgeries, he was left with 30 cm of small bowel. He is currently on TPN for 16 [...]
Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go [...]
Joel Vickoren was born with SBS with an underlining syndrome called Digeorge syndrome. Joel spent three months in the NICU after he was born, and ended up losing all but 10 cm of his small bowel due to a midgut volvulus and jejunal atresia. The Vickoren family has endured hardships they never thought were possible, [...]
Joshua Southern was born April 28, 2006 with gastroschisis. Gastroschisis is a birth defect in which part of the intestines have "ruptured" through the abdomen wall. Within hours of birth the majority of Joshua's small bowel had died and was removed. Multiple surgeries and setbacks awaited us the first part of his critical life. It [...]
Living with short bowel syndrome has been quite a journey over the past eighteen years for both my family and I. When I was born I was immediately taken into surgery to remove a large portion of my small intestine: a lifesaving operation. Since, I have been extremely blessed by a healthy and thriving life. [...]
Alana was born on April 22, 2011 with several medical obstacles to overcome, in addition to her Short Bowel Syndrome, caused by Necrotizing Enterocolitis (NEC). Alana lived with a central line until January 2012, but still receives regular GI feedings through a G-Tube. Alana’s family went through a very emotional and financially draining experience, juggling [...]
Twenty-Three years ago Swapna Kakani and her parents did not know her fate as a newly diagnosed newborn with Short Bowel Syndrome. Today, after 40 surgical procedures later, and waiting on a list for an intestinal transplant, they still don’t know what the future holds. Though Swapna has always had a positive outlook on life, [...]
Braden is a 16 year old young man who lives in the Boulder, CO area. Braden is Dependent on Enteral Nutrition as a sole source of nutrition as he can not absorb everything just through eating oral foods. He had to discontinue TPN because of loss of venous access at an early age, but due [...]
