Short Bowel Syndrome Member Introductions


#25

I am a mom to a former 27 week preemie with short-bowel syndrome, mild chronic lung disease, and is mildly mentally handicapped with a communication disorder. She developed NEC at 21 days old and they did emergency surgery to remove parts of her small and large intestine. She is now 7 years old and in first grade. I am a member of the SBS and NEC group on yahoo, but haven’t posted in quite a long time.


#26

I have digestive and various health issures due to a loss of small intestine, bowel and my ileocecal valve. Would like to know what others do to cope with similar situation.


#27

i am 25yrs. old and I have short bowel Syndrome from having gangrene of the intestine. I am now studying fitness and nutrition and specialize working with gastrointestinal patients. It has been very hard because no one seemes to understand or caared to understand. But I am very glad that i have found other people who share my problem who understands.


#28

My son (DOB 5/28/06) has extreme long-segment Hirschsprung’s.


#29

32 years old, living with SBS for more than 12 years. Just moved to San Francisco from Israel.


#30

MY SON HAS SHORT BOWEL SYNDROME


#31

My daughter was born with gastroschisis and as a result now lives with short bowel syndrome.


#32

My 3 year old son Ashton was born with Gastroschisis, an ileal atresia, and a jejunal atresia. He had 4 bowel surgeries, and is now living my SBS. He gets small bowel obstructions quite frequently.


#33

My daughter has short bowel syndrome. She was born with a malrotation and had the condition corrected at age seven. Two years later she suffered a volvulus and as a result, she lost 90 percent of her small intestine. She also lost her ICV. Life has been a struggle for her ever since. She is twenty and has been on TPN since the age of nine. My heart goes out to all who have to deal with this difficult condition.


#34

I have a 4 month old with severe short bowel syndrome after being born with Gastroschisis. I am just looking to talk to other parents experiencing all the unique problems that come with having a baby with this condition.


#35

I have a 1-year-old with short bowel. He has Hirschsprung’s Disease. He has 30 cm of small intestine and no large intestine remaining. He is TPN dependent and doing well. Looking forward to meeting you all!


#36

My great nephew has this condition, and his mother is a member of the website


#37

My son and I have short bowel. Just to connect with others that have, or have loved ones, with this condition.


#38

My daughter was born with Short Gut and had the STEP procedure and just wondering if there is anyone out there that has had it done and what their experiences have been.


#39

Hi! I am a mother to twin boys that developed Necrotizing Enterocolitis on their third day of life. One of my twins lost his entire large intestine, his IC valve, and 6 inches of his ileum. He was not diagnosed with Short Bowel Syndrome, but instead classified as “having symptoms of SBS”? I am just trying to figure out what works best in terms of weight gain, excoriation of his bottom, etc. and what this exactly means for his future.


#40

Hi there, wanted to introdue ourselves. Treena and my son joel who is just about 4 months is very short gut. He has been tpn all of his life and has been developing cholestasis. He is being able to eat small amounts of formula finally and his billrubin has decreased or stabalized. It was aroun 10.6 and now 7.4
we call him our little cameleon as he changes colors depending on the levels. We are very excited and are waiting for our omegaven order to come through which should be next week sometime. We are very excited about the possibilities of what this will do for our little guy.


#41

My name is Kelly and my daughter Katie has short gut.
She was born on April 26, 2006. I can understand
completely what you are going through. Katie was on
TPN until July 07 and has done really well so far and
we hope to keep it up. The things I would tell you
are you know your son better than anyone go with your
gut even if the doctors think you are crazy. God
knows mine do. I question every move you can’t lay
back and assume they know best. Katie had the surgery
STEP and it has been nothing short of awesome. The
surgeon here is great and we feel bless to have him.
Katie is our third and she has been a handful. You
will get used to the pumps and feeding. It all comes
in time. I truely believe god has great things plan
for her. She is a tough cookie. Please let me know
if you want to talk because I have been there and
still am there so anything I can do to help. Remember
God has a plan for us all and Joel is here to do great
things!!!

Kelly


#42

Hi Kelly,

thanks for the reply, how old is your katie? I have a katie to but she is 16
thought it was funny to have daughters with the same name. Thank you for your support. How much bowel does your daughter have? is it small or large?
when did she start eating real food? Joel does pretty well however he
still spits up and gags is this normal for short gut babies ? its usually clear or a light yellow which they said was undigested formula. I told his dr about it and didn’t seem to concerned . Joel will be sitting in his bouncy seat just fine cooing and having a good old time then all of a sudden starts to gag red in the face and you can hear a bunch of air in his tummy. he spits up and then is fine…
its just weird like nothing was wrong. any suggestions? thanks for your input

Treena


#43

hi,

my daughter will be three in Jan… she is also short gut… we still have problems every now and again… thank God they are apart and few… but she is eating by mouth now. she is still so tiny though…

Jalien used to do the same thing… the gagging and spitting up reflux…thats mainly our problem now… .she rarely throws up but when she does it is massive and sometimes causes slight dehydration…

i hope all works out for you.

we;re all battling thru this… God bless
Vanessa
tinkers ss-cpt2331@lists.careplace.com wrote:


#44

Katie is 18months and at the time of her last surgery
she had 75cm/inch whichever of bowel left. They did
the STEP which extended it from 28 to 75. Which at
the time was a big deal. She is on a feed tube all
day with the exception of 3-4 hours. When you get to
the point of Joel walking you will want to look into
the Infinity Lite by Zevex. It comes with a little
book bag that they carry themselves. That said you
may never have to have that. Katie did not start
taking things by mouth until 10 months. Now her diet
is all high in fat to put weight on. Never thought I
would feed a 18mo donuts, nuggets, fries any and
everything that is bad for you, but I had to put
weight on her. She now weighs 22lbs but god it took
forever to just get to this.

Is Joel on TPN all day? That is great he is already
taking thing by mouth. That is serious progress. Let
me know if you have any other questions or just want
to talk. I am in Nashville and thank god have
Children’s Hospital here, so if you need to talk to
another surgeon or doctor let me know. Off to a
football game- I have a 7-boy, 3-daughter and Katie.
Life is busy!!!

Kelly