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Does anyone know a specialist that deals with adults with gastroschisis...
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Does anyone know a specialist that deals with adults with gastroschisis

I am 27 years old and was born with gastroschisis I've had several surgeries the last being laproscopic lysis of adhesions which did not help me. I have been in pain for nearly four months now and am seeking a specialist in NJ any suggestions?
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Avatar_m_tn
I am too!  I don't mean to sound excited but I don't know ANYONE like me.  I am 26, born in NJ with gastroschisis.  It was a pretty severe case.  I have been referred to Dr. Farr Nezhat because I have had problems with ovarian cysts that are exacerbated by all of the scar tissue from the gastroschisis.  I have had 2 open surgeries.  How did you have a laparoscopy done?  I was told I could never have that.  

Anyway, the Nezhat brothers are supposed to be some of the best laparoscopic surgeons in the world.  Dr. Farr Nezhat is based in NYC at Mt. Sinai Hospital.  

I will be seeing him to find a solution to my cysts and possible lysis of adhesions because I can barely function anymore.
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Avatar_m_tn
hello, i too was born with gastroschisis. please contact me if you would like to share any concerns or expiriences www.***@****  i was born in 1980. have had several hospitalizations and two surguries since birth. i have a great doctor out here in montana. i have come to realize that there is not a whole lot of info concerning gastroschisis later in life. i would like to start a forum for those of us who need to talk to others like us.
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Avatar_m_tn
here is another forum for us to congregate to...gastrohealth.......at facebook....
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Avatar_f_tn
i was also born this way, a couple of years ago my parents finally told me the story when i was born i cried so much but thanks god that i was alive i wasint supose to live past the first 3 hours i was born, i  have scar that is deap and very big i wanna get reconstructive surgery i live in north texas does any one know of any good doctors
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1336333_tn?1275691399
Hello, I was born with gastroschisis in 1981. Things were great and went smooth until I had my 8 lb 11 oz baby boy in 2001. Unfortunately his size was too much for my little frame and stretched out my scar tissue. Since then I've had nothing but problems. In 2008 I had emergency surgery to remove a Bowel obstruction that caused me to go septic and also pushed my appendix up into my lungs. So after a bowel reconstruction and appendectomy I was hoping my pain and fears would go away. Well as my luck would have it things have grown increasingly worse, and even though I work in a state of the art hospital non of the GI doc here know jack about my disorder.

I've mentally abused myself with the idea I may go septic again so cleansing and stool softners are my best friends. I have seen a specialist and tried many diets. Im 5'3" and weigh 118lbs and in fitness condition, I'm just in constant pain.

I'm desperate for help, I'm considering flying to the MAYO clinic. Any suggestions?
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1155801_tn?1276247024
I was also born with gastroschisis in 1984 in Kentucky!  I have been looking for information for years!  I was hoping to find out how gastroschisis affects people later in life and how it affects females and fertility!  I have been married for almost 8 years and I have gotten pregnant twice, first being a tubal pregnancy and the 2nd I had to have a D and C at 11 weeks.  My mom was 16 when she had me and I have read some information saying when girls have babies young that gastroschisis is one of the problems that occur along with low birth weights.  I was 4lbs and 10 ounces.  I am looking for any information that anyone has to give!  Thanks!
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Avatar_n_tn
I was born in 1971 with gastroschisis. I have had a total of 8 surgeries.My mother was told i would not be able to have children or live a normal life. I did not practice birth control so at 23 i became pregnant and had a beautiful healthy girl. Then I became pregnant again 6 months later with a boy who came early because my stomach could not hold out. After him, the drs fixed me.  I am in NYS and I had the best high risk dr and wonderful surgens.

But, now I am starting to have some problems, of course one is I am suppose to watch my weight. I still have plastic meshing on my right side that intertwined with my liver. It can be uncomfortable.

Sorry to talk so much but I only just stumbled upon this forum and was surprised to see so many born with what I was born with.
The drs told my mother if i had been born two years earlier, I would not have made it.
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Avatar_f_tn
I was born in 1978 with gastroschisis. I do have 3 kids, but since them I have problems now with bowel movements. I have put on 15 pounds in the last 6 months and I feel miserable all the time. Laxatives are my only solution and I know that can't be good, but I don't know what to do. I haven't changed my eating habitats or exercise routine, but I have still put on weight.  
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Avatar_n_tn
I was born in 1978 with gastroschisis. My parents have never really liked to talk about it much. I am presently 36 weeks pregnant with our first child. We tried for years to get pregnant but were unable to naturally so we turned to IVF to help conceive our baby. I have had pretty much a normal pregnancy but am concerned about what might come afterward......
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Avatar_f_tn
Oh My Goodness... I haven't really read up on Adult cases' are here is a bunch now!!! It's actually quite exciting!!

I was born on 13 March 1988 (Adelaide, South Australia) 7 weeks premature.  I had immediate surgery as you all would of too and after about a year all was fine... until I was 7, 9 & 13 and I have had serve bowel obstructions each resulting in a laparotomy.

2008 (19 years old) was my scariest year the doctors refused to do testing and put my weight loss down to not eating properly.. I ended up having a septic bowel like you UCHnurseCO and needed 32 cm cut out.  

From all my operations my scar tissues had created adhesion just like Rosie8407 and effected my ovaries resulting in 9 ovarian cysts and damaging my fallopian tubes.  I have had multiple abdominal muscles cut out so I have been told even If I have a chance to conceive my body may not support a full term pregnancy.

There is not alot of information in Australia for "adult" survivors of our condition and would love to talk to anyone about their story!

I am currently on a low residual and low fiber diet which leaves me really tired as I lack the vitamins that I can get from all them delicious vegetables.

My surgeon is a GUN! brilliant - But Im 22 going on 23 and I just think... will it or does it even stop!!

The more surgeries the more adhesion's the more blockages the more surgeries - it's a vicious cycle - and I am in constant pain!
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Avatar_f_tn
I was born in 1979 (South Louisiana) with gastroschesis. First case ever in Louisiana, doctors didn't know what to do. I was 1 lb 3 oz, and 3 mths premature. I have have several surgeries, not taking medication for my stomach to digest b/c it wont on its own, have a mesh screen. I was also told by GYN specialist that it wasn't a good idea for me to get pregnant b/c i had a 50/50 chance of surviving. I'm glad there is more people out there with this condition and have had children. I want children but have been scared all my life, now I'm 31, and my clock it ticking.
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Avatar_n_tn
I am a board member of Avery's Angels Gastroschisis Foundation. We have an active group on facebook that you can meet other mothers and adult survivors that may help with you questions. Being a part of this group has really helped me. I am a gastroschisis mother myself. Our website is averysangel.org it is currently under construction so at times may not be visable.
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Avatar_f_tn
I too was born with gastroscisis.. I am 27yrs old and have 2 amazing baby boy's. My last baby is when my problems started. Severe pain and cyst problems. Doctors around here have no clue how to handle my situation. I have had a colonoscopy and due for my 1st upper GI test this week. Hope they find something, but not wanting surgery...  Amazing to find so many who understand what i've delt with my whole life! :)
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Avatar_f_tn
I was born 1984 monroeville pa I have had a good surgery I have had 4 children I've been experienced very bad pains in my stomach area recently they are floor dropping what kind of meds do they prescribe for the pain?and how do I go about talking to a doctor about my pain everytime I go to the hospital they always say there's nothing wrong and send me home what am I to do I don't even think they know help please
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Avatar_m_tn
I was born in 1979 and had the same "floor dropping" pain during my teenage years. I finally had exploritory surgery at USF when I was 16 where they removed all the adhesions. They were intertwined with my intestines. I don't recommend going through this... Only as a last resort. Recovery time was crazy but I did feel a lot better about a year later. The only problem is that the adhesions grows back after time.

I called the hospital last year and was told there are no specialists in the United States who deal with adults born like us.

I know how it feels to deal with doctor after doctor who thinks our pain is all in our heads. Keep looking for one that will listen.
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Avatar_f_tn
HI I'M ROSEMARY KING . WE LIVE IN OCEAN SPRINGS MS. MY GREAT GRAND DAUGHTER LOST OVER HALF HER INTESTINE AT BIRTH. AS EVERYONE ELSE WE ARE IN AND OUT OF THE HOSPITAL.  SHE ALSO HAS A PROTIEN ALLERGY. SHE HAS A G-TUBE . SHE GETS NO WATER AND CAN ONLY HAVE FRUITS AND VEGGIES. SHE WILL BE TWO JULY 12. SHE GOES TO USA CHILDRENS HOSPITAL IN MOBILE. DOES ANY ONE HAVE ANY SUGGESTIONS ON HOW WE CAN GET HER TO EATAND ANYONE ELSE WAS TOLD THAT THEIR BABY COULD'NT DRINK WATER. SHE GETNO LIQUIDS BY MOUTH. OH WE ALSO HAVE GALSTONES.
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Avatar_m_tn
I was born with gastroschisis in 1989. I apparently had pretty much everything on the outside and spent the first month of my life in the hospital. I never really thought about this causing me problem later in life growing up. I did always have stomach cramps and felt very nauseated a lot growing up. I am now 23 and was diagnosed with premature menopause at 19. My hormone levels are that of someone who has already been through menopause and my doctors have no treatment available other than hormone replacement which still wont allow me to get pregnant. Because of the premature menopause I am also at risk for other health problems at an earlier age. About 7 months ago I began having severe abdominal cramps, nausea, and vomiting and went to the ER. After a CT scan they discovered a bowel obstruction due to scar tissue and luckily I didn't have to have it surgically repaired. Three days in the hospital and IV fluids seemed to clear it up. Today I began having same symptoms and was back in the ER. This time they diagnosed it as an "ileus". Was told to stay on a clear liquid diet for 2-3 days and it should clear up. Hopefully that will work but this is my second bowel problem in less than a year.

I'm basically wondering if these problems are caused from my gastroschisis, which it sounds like the bowel obstruction is. Will I have these problems forever? If I'm already having this at 23, should I see some type of specialist? What else am I at risk for?

Thanks for any help anyone can give!
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Avatar_f_tn
im 21 and also was born with this. I have the ugliest scar all throughout my stomach I can almost say my abdomen is deformed :( i have weird lumps and for some weird reason i have a love handle only on my right side (I know weird) i got surgery for my belly button about 5 years ago because it was literally located on my far left side. I was not happy with the job at all because I really thought my abdomen would be a little more smoothed out. It is something that bother me greatly and is the main cause of my anti social behavior. I feel I can never have a boy friend long enough because when it comes down to having sexual relations, I feel he will reject me because of how ugly it looks. I just want to know if anyone knows of a good surgeon who can help me out with a reconstructive surgery. (Money is not an issue)
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Avatar_n_tn
dr. todd beyer.  i had to have my gallbladder removed and it was stuck to my liver because of my gastroschisis. he did a good job putting me back together of course my deformity is quite sever.  
he is at albany medical center and st peters hospital in albany ny as well.    

the skin covering the front of my stomach is paper thin and cuts open easily i have to be very careful. i have no stomach muscles at all and the plastic meshing that was used in 1971 intertwined with my liver.  the right side of my stomach protrudes out further than the left .

I did find someone who loves me 18 years ago and we have two wonderful kids.

do not give up  
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Avatar_f_tn
frak my name is myrna I live i Texas and curretly lookig a gi specialist who deals with gastroschisis. Apparetly ot many doctors know about it of kow how to deal with it for adults.  I had two surgeries i the past three months due to small bowel obstruction this due to adhesios and one surgeon suggested a life-time drastic diet with stool softener, while another surgeon suggested nothing.....I really would like to get more information and talk to somebody regarding my history....would love to share information with you...my email love_alejandra***@****
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Avatar_m_tn
hi,
i was born in 1976 with.gastroschesis.i had surgery when i was born and i was three months premature.pretty typical from what i hear.when i was 12 years old i suffered a bowel obstruction and had to have multiple surgeries.i also had a colostomy bag for nine months.i had relatively no problems till i was 35 yrs old.for the past two years my health has been a nightmare.been hospitalized at least 12 times for bowel obstructions.i ended up having surgery at UCLA in march.i had adhesions removed and believed that was it.well i have been suffering still with pain and bloating.its nearly impossible to eat.i have lost 40 healthy pounds this year.i cant seem to get agrip on this stuff.my career and personal life have suffered greatly.not to mention my quality of life *****.does anyone have any advise or words of wisdom that i can take with me?i would really appreciate any positive input.thank you
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Avatar_f_tn
I was born in 1974-  I look 5 months pregnant and have had at least 10 bowel obstructions. I am tired of it. laxitives don't even help. I am tired of the tubes down my nose and need answers- help this is the most miserable feeling ever.
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Avatar_f_tn
very hard to be positive when there are no answers
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