Short Bowel Syndrome Member Introductions


#1

Please take a moment to introduce yourself to the community. Everyone here has something to share about Short Bowel Syndrome. For the discussion boards, we ask that you keep your full name and location private.


#5

My son is in need of a small bowel transplant. He has 6cm bowel due to NEC at 5 weeks of age. We are currently listed at Pittsburgh Childrens for a small bowel, liver and pancreas.


#6

Mother to Ellie, born in April 2006 with only 30cm of small bowel and around 70% of large. She is an omegaven baby and doing great.


#7

I’m rebecca Thompson,
I’m about to be 18 i have had SBS for all my life i grace each day with faith i still struggle but i want thelp other in their journey and be helped. thanks forl etting me help. becky


#8

Mother of Jonathan Williams age 14. Short bowel due to NEC at 5 days old. On TPN and Lipids for the past 14 years.
Bowel lengthing in 2005.


#9

My name is Phil and I have a 4 year old son with SBS because of a gastroschesis. I joined the group shortly after my son was born back when it was hosted by Yahoo groups because I was told that it was such a rare thing to happen and no one that my wife and I would talk to about it couldn’t really relate. It has been a tremendous help and hopefully I have been able to help somewhat along the way.


#10

I am the mother of Clara, a 3 1/2 year old with sbs due to Necrotizing enterocolitis when she was 11 days old. Today she is a very healthy girl who has a “mickey” feeding tube which we currently use two nights a week. She eats well and only has a few food limitations. I hope to connect with and help others who have similar stories.


#11

i’m a 21 mom and 24 dad to gastro baby born on april 25 , 2006 w/ gastroschisis led to short bowel and just on the 14th of april recieved small bowel and liver transplant @ UCLA Mattel Childrens in California


#12

Hi all,

My daughter had SBS the day following birth when she had to undergo surgery to remove much of her small intestines. She’s still on TPN today, and I hope to learn more about SBS.


#13

Mother of a 3 year old SBS girl living in New York (near Poughkeepsie). My daughter had a mid-gut volvulus at 1 month, and now has a colostomy and g-tube.


#14

Our baby girl, Piphany, was born 12 weeks early on December 4, 2002, weighed 2lbs 8oz and spent her first 3 months in the Special Care Baby Unit of Saint Marys Hospital in Paddington, London.

At about 10 days old and after initially doing really well,
on full oral tube feeds, she suddenly developed NEC
(Necrotizing Enterocolitis). After two operations and a lot
of needles she she came home a week after he due date. She she spent a year feeding on Neocate formula and needed Loperamide and vitamin supplements because a large part of her intestines had been removed.

She is now four years old and attending regular nursery 5 afternoons a week. She is still on 3ml of Loperamide to control her bowel movements but is eating most of the same food that we eat.

John and Pearl


#15

Mother of two children - one with SBS secondary to ileal atresia.

I didn't realize this was a member introduction, so my apologies for the terse description above. My son, Sam, is 2 1/2 years old. He developed an obstruction in utero that was resected at birth. He was home for 10 weeks, developed an adhesion, and his small intestine perfed at the original anastamosis site. He is now an SBS kid on TPN/Lipids 11 hours a day and Peptemen Jr. with pre bio (ad lib by mouth and 2 small boluses during the day). In November, he had a Bianchi, which gave him an additional 80cm of small bowel. We haven't seen remarkable changes in his growth and/or ability tolerate more feeds since then, but he is a happy and otherwise healthy kid. It is our hope to wean him off the TPN, but we aren't holding our breath. He has a wonderful 5 year old sister who tells everyone about her brother's 'toobies' and his surgeries.


#16

Hello, My son DeAndre was born in 2002. Shortly after birth he developed NEC. He now lives with Short Bowel Syndrome. He has 37 cm of small bowel left.


#18

i have a 20 yr old daughter w/ sevier cp that lost all but 10 cm of her short bowel in feb of 06…trying to learn the most i can about short bowel syndrome and how i can improve her life…thanks


#19

Hello, My son DeAndre was born in 2002. Shortly after birth he developed NEC. He now lives with Short Bowel Syndrome. He has 37 cm of small bowel left.


#20

My daughter Samantha was born with SBS, we were unaware and at 6 weeks Sam got NEC and lost 1/2 her blood in 15 min. Luckily we were getting tests done at the Children’s hospital when it happened (because she had been losing weight since birth) so they were able to pull her out of shock and get her blood quickly. They tested her for a week and couldn’t figure out what was wrong so they did exploratory surgery, where they found 40 cm of intestine kinked and not attached to the bowel wall, at the point of the kink it had ballooned up and was very damaged. They decided not to remove this portion because she had so little to work with in the first place, instead they reformed it and stapled it back together hoping it would recover. We spent 2 months at the hospital recovering and went home on TPN, Sam has done very well since then, is off TPN now (10 months old) and is starting solid foods in addition to her Pregestimil. She has had her ups and downs but is gaining weight and we have high hopes for her.


#21

My daughter is two and half years old. Part of her bowel was resected at birth time becuase of malrotation. She had 75 inches small bowel left. w/o valve. She is free of TPN and on pregestimil and kids food. She can’t tolerate sugar. plain water, or fat.


#22

Tracy and Andy Fischer parents of Caleb who at 2 1/2 years of age had a midgut volvulus due to a mesinteric cyst. After 9 surgeries Caleb is now reconnected with 38cm of small intestine and 95% of is large. Caleb is the sweetest boy alive. He has suffered greatly, but we hope that the future will be a brighter time for our loveable little guy. We are under the care of Childrens Boston Dr. Mark Puder.


#23

Father to son Max with Hirshsprung’s disease and SBS.


#24

My daughter Samantha was born two months premature with a midgut volvulus that resulted in short bowel syndrome. At seven months old she was listed for a liver transplant from TPN induced liver damage. Shortly after being listed we had the Soy based Omega 6-fatty acid, lipid in her TPN replaced with the fish based Omega 3-fatty acid Omegaven. After only two months on Omegaven her liver numbers returned to normal and she was taken off the transplant list. She had her central line removed and is on G-Tube feeds for ten hours over night.