short gut syndrome

[rebbecca]

When I was 19 I became pregnant with my 2nd child. I was very happy and somewhat scare because my son just turned 1 two months before Kaylee was born.
A week after my sons birthday party my water broke, I was only 5 months pregnant. I went to the hospital and they sent me home and told me to stay on bed rest and her would probably abort her self. What lovely news to tell anyone. 2 weeks later I was still losing fluid so I went back to the hospital. I was told that I couldnt go home and that I would be taken to a hospital 2 hours away. I thought I was going to die knowing that I couldnt be with my son. Know chioce I had to go.
I was at the hospital for 7 weeks on bed rest. How embrassing it was to use a bed pan. lol I had my beautiful little daughter on Oct 11,2000 at 27 weeks, she weigh 1 12.6oz 10in long. She wasnt breathing when she was born but she open her big blue eyes and just stared at me. I will not forget that moment. What a tiny little baby. I though the labor was going to kill me!!!!!
Kaylee was taken to the Nick U. When I finally was able to see her, fear over came me because of a of the tubes and wires, monitors, lights and the loud noises. All I could think was what the hell happened 7 weeks.
Fast forward a couple of months to december of 2000. Kaylee came home from the hospital the first week of december. She weigh a over 4 pounds, still very tiny. I asked the doctors if I could take home a monitor but I was told no that she would be fine. Everything was great, she was eating and pooping fine the only thing was she need iron drops once a day. Christmas came and went and so did New Years. Kaylee was still sleeping lots but she did wake up long enough to smile, cuddle, and eat. She still amazes me what a strong baby she was.
Hell stuck the second week of January. We all went to bed late. But Kaylee was having a hard time staying asleep, so I put her in her swing and that was the only thing that seemed to help her go to sleep. By morning I woke her dad up and told him I was going to lay down. He came in the room a few mins later and said she wouldnt eat much so he layed her down next to me and I was starting to go to sleep and just happened to look down and notice that kaylee had a blue tint to her and her stomach seemed a little big. I started screaming call the doctor. DR said bring her in. We got the and they call and ambulance. She flat lined 2 times on the way to the hospital. they got her there and she was somewhat stable but they didnt know what was wrong. Call a helicopter and we were in the car on a 2 hour road trip.
When we got to the hospital she was already in surgery. Come to find out she had a twist in her bowel, 90% of her bowel had died and it had to be removed. She came out of the surgery with 10% bowel a feed tube and on life support. She slow recovery, but she was on tpn off and on. We were told that our daughter has SHORT GUT SYNDROME.
She has had a 10% bowel lenghing a year after her 1st surgery.
She is doing very well and is in 1st grade now.
My question is has anyone else hear of these because sometimes it feels like my daughter is the only one?????????

[teko]

I am so sorry Rebecca, This one I never heard of, I cannot help.

[mathrice]

Wow, honey!

I haven't heard of it either.  I'm so sorry...please keep telling the story, because maybe someone has a baby who has a real problem with baby pooping (that is usually shrugged off and we're told, "just give it time").  I'm so glad she is better, and I KNOW you are!  Hugs 2 u!

[rebbecca]

thanks for reading

[louin]

ggggggg

[louin]

Rebbecca My grandson was born with SGS on July 31,2007. He is in Pittsburgh PA. this week being looked at by the doctors. He was born with only 10 centimeters of small gut or intestine and has not been able to take a bottle he has a central line and is on TPN. The only bad thing about TPN is that it will destroy the liver and he will have to have a intestine and liver transplant. We have to get him up to 20 pounds before he able for the transplant and thats going to take a long time. Sorry that this is not good news, but I know that God is in control and he can take care of all things. May God Bless you and your daughter. Thanks Mark

[Staciebugj]

Hi Rebecca.  My name is Stacie and I have Short Gut Syndrome.  I have had Short Gut for about 19 years now.  You can email me at ***@**** if you like.  Or if you prefer researching it yourself, search under Short Bowel Syndrome, you will find a lot more information.  There is a site on wikipedia.  Also you can look at Malabsorption, because all short gut patients have that.  Of course you can email me at any time and I will answer any question that I can.  I also only have 10 percent of my bowel.  I have been weaned off of tpn for over 15 years now and eat normal food for every meal.  I go to the Dr monthly for iron and vitamin B12 shots, and about once or twice a year I have to have a blood transfusion.  Other than that, I live a pretty much normal life.  It takes a long time for the body to adjust to short gut, but many patiients to and can adapt and live long, healthy lives.  In fact, I am now a sophomore in college.  If you ever need to talk I am here for you...

[rebbecca]

what about a bowl lengthening? the lengthening is when they cut what intestines they have and split down the middle, stitch them up then and connect them back together. my daughter had it done and she has done pretty well with it. his bowel will grow with him as he grows. my daughter was on tpn off and on for 3 years. is your grandson on a feeding tube? if so, the higher the feeding the lower the tpn should go. has he ever had a pic line put in?
god bless you and your grandson

[rebbecca]

thanks for your feed back and congates on your sophomore year of college!!!!!!!!!!

[Maxmama]

I'm so glad to hear that your daughter is doing well.  Our 17-month-old son also has short gut syndrome.  There is an amazing short gut community out there.  Good resources include:

- the short gut wiki: http://grey.colorado.edu/shortgut/index.php/Main_Page
- see particularly the page on Omegaven, which is savings kids' livers so they do not need transplants: http://grey.colorado.edu/shortgut/index.php/Omegaven
- the SBS yahoo group: http://health.groups.yahoo.com/group/Short-Bowel_Syndrome/

[rebbecca]

thanks, good luck and god bless

[nikki_jeremy]

WELL MY NAME IS NIKKI AND I JUST HAD A BABY GIRL WITH SHORTGUT. SHE ONLY HAS 10% OF HER SMALL BOWEL. AND THE DOCTORS KEEP TELLING MY HUSBAND AND I THERE IS NO HOPE. BABY TAYLOR IS 7 DAYS OLD TODAY 12/05/07, AND WE NEED ANY AND ALL INFORMATION WE CAN GET ABOUT THIS . I SEE THERE IS A 19 YEAR OLD GIRL ON HERE WITH THE SAME PROBLEMS AS MY BABY, AND IF THERE IS ANY WAY SHE CAN EMAIL ME THAT WOULD BE GREAT. PLEASE CONTACT US AT ***@****  thank you very much

[nikki_jeremy]

AGAIN OUR ADDRESS IS taylornichole  live  com .  

[Haukap]

My son also has short gut syndrome, he was 5 weeks old when I went to go check on him, he was blue, and had vomit around his head, and was cold.  We were told that if I would not have found him he would have been dead with in 15-30 minutes.  He has had 6 surgeries because his intestine contined to stricture on him;  He is left with 20% of his small intestine.  We were told he only had a 5% chance of survival, and a life on TPN.  Well, here we are 3 years later, and my son has been off TPN for 2 1/2 years,  His feeding tube was removed a year ago.  He is doing well!  For all of you going through tough times, there is hope, hang in there and keep fighting.  If you need anything please feel free to email me at ***@****

[md131s]

Rebecca-

There is hope.

My daughter was born with jejunum atrecia, a knot in the beginning of her small intestines. When she was two days old, they removed 67% of her small intestines.
My daughter was on TPN for 2 1/2 years and g-tube feeding. She was slowly weaned off because her liver was slowly failing. She also had to have 5 central lines(replacement for broken lines), countless pic-lines and had bouts of sepsis over 50 times and fungimia several times(the worst). Through this process she had about 3 blood transfusions.

The doctors could never give me any definate answers about her fate. When she was about 18 months, they suggested placing her on the donor list because TPN and g-tube feedings were not working. My daughter was so frail, she could not metabolize fats especially the microlipids they use with TPN.

I read everything I could get my hands on at the time, which were a few articles here and there. I found an article that explained why TPN was not effective for my daughter. The article stated that TPN or patients undergoing dialysis  have a tendacy to deplete L-Carnitine in the blood. With low levels of L-Carnitine the body is unable to metabolize fat and  fat absorbtion.

I showed the doctor this article. At first he did not take me very serious until I insisted that she be tested for her L-carnitine levels. Since this test is not standard, they had to send her blood sample to a lab that can test for this protein. When the test results came back, my daughter L-carnitine levels were close to zero. The doctor started giving her L-carnitine through I-V therapy with her TPN. Weeks later you could see the difference, my daughter skeleton frame slowly filled out. Several months later her jaudice disappeared which was miraculous because she was born juandice and stayed that way until after treatment.

A year later, they weaned her off TPN and at age 5 she was weaned off of her g-tube feedings. Now my daughter is a very healthy 10 year old. She's able to eat what ever she wants and the most miraculous thing is she does not remember her hospital stay. She do not remember any of it.

My advice to you are:
Pray
Persevere
Take one day at a time
Ask questions, especially if something does not seem right


if you have any questions feel free to email me at ***@****

[rebbecca]

thank you so much!!!!!!!!!
happy holidays and i wish ur family the best!!!!!!!!!!!!!!!!!!

[Annette447]

Hi
It is great to find this site. I am currently caring for  my 16 month old great nephew with short bowel syndrome. I have not been through the  early facets of his life, as I acquired him a couple of months ago, as a result of being in Foster care due to "failure to  thrive". He has improved so  much in the last 2 months. He is a great kid. He is on continous gastric tube feedings, and several  medications. My concern is he screams so much when he has a bowel movement. Can someone give me an explanation as to why he is in so  much pain when he has a bowel movement. I feel so helpless and can't comfort him!!!

[rebbecca]

i am not sure! is his stools watery? i would call his gi dr. thank god for angels like u because there alot of people out there that are not able or willing to take care of special needs children.

[angelmom0114]

My son was also born with 10% of his small intestine.  He had his first surgery at 2 days old and the doctors at the hospital told us he had no chance of living.  We did out research and found Children's Hospital in Pittsburg does intestine transplants.  They told us that with only 10% our son could not sustain absourd enough nutrition to live, so he had to have a transplant. I don't want to post too much on here because I don't want to scare you or other families because it is a long road.  If you want to here our story or just want someone to talk to who has been through it or if you just someone to talk to then email me ***@****  (my sn @yahoo incase we are not allowed to post email addresses here)  I learned that when I am going through a hard time sometimes it is easier to talk to a stranger.  Marisa

[angelmom0114]

Wow I just read your story and it sounds just like my son's story.  We were also at Children's in Pitts. They really are a great hospital and the transplant team is one of the best. It is a hard road to go through and I wish your grandson the very best! God bless you and your family!

[stace321]

Hi Rebecca. My name is Stacy and I was born with my small intestines tied in knots 25 years ago. They told my very young parents there was not much chance of my survival but,  I underwent 6 surgerys over 7 months and eventually left the hospitol with less than 10% of my small intestines and I now live with short gut syndrome. My Mom fed me throught a G tube for 2 years and now I live a very normal life.  I actually got married last month. The only reprocussions I deal with are that food passes through me more quickly than most and I have kidney stone surgery every few years due to the way I digest.  I believe that the reason I survived is because of the prayers I received and my mothers love.  I will pray for you and your daughter and I wish you the very best.  Take care

[rebbecca]

thank u and congrats on getting married!!

[braydenanthony]

Hi rebecca. my name is jamie. my son brayden was born 07/21/07. he was ten weeks early and weighed 3 pounds 10 oz. he was doing well and then at nine days old he got an infectin called nec. he had surgury immediatly at lucile packard childrens hospital in palo alto california. his intestines perfurated. they removed 65 cm. of his small intestine bowel. he has 52 cm left. we are currently at home after three months in the hospital. we are no longer on tpn as of a week ago.we still get lipids at night for 12 hours. we are doing very well. there is hope, and you are not alone. my family and i will pray for you!

EMAIL-***@****

[rebbecca]

thank you, and i wish and pray for ur family also.

[deanna900]

hi iam a grandma who has a grandson that also has short gut syndrome. He was born  in wpg, mb.His intestine was twisted and died, therefore he had to have most of his short bowel removed. He now has the small intestine  attatched back to the large intestine; with not much of any intestine left. He is going for his assessment at the  Toronto hospital for sick children, before he can be put on the list for a donor. rebbecca this is the hardest thing that I had to deal with in my life time, so far. I know that my daughter and her partner have a long road to walk before baby Jerry recieves his transplant.I have being been very negitive in the begining because the doctors were not giving us much hope. but now, I have every hope that baby will survive his journey. what else can i DO ?  Hang on girl, there are lots of new technologies out  there. Lets hope that one day this will be a thing of the past. Deanna.