Hi
My name is chell and i was born with Gastroschisis in 1981. Ever since i was a teenager i have had chronic pain in my scar and also abdominal pains. When i was 14 the surgeons tidied up my old scar thinking that it was the cause of the pain…… however as the years have gone on i have had more and more pain in my scar and also in my abdonin. At the moment they are putting it down to IBS (but i’m not convinced). My scar is about 10″ long verticaly (all down my torso).
I was wondering, has anyone else had these problems????
Thankyou all for listening 
chell xx
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I am a year late in replying but I am 34 years old and was also born with gastroschisis, I am part of the first generation of kids to survive this and I can tell you most doctors don’t know much about the long term effects of gastroschisis because so few babies ever survived prior to the late 70s. That being said yes, the scar hurts, not all the time but it does feel like it is burning or stretching from time to time. As if my scar is being pulled apart. It is painful and I often have to breathe deeply until it passes (longest was about 20 minutes) this happens about once every 3 or 4 months and no doctor has had any explanation for it. I have had kids and it did NOT get worse for me when I was pregnant or effect my pregnancy or babies. It seems the pain is random and unrelated to growing, stretching, or weight. Sorry I don’t have better news but I have learned to just live with it.
As for the abdominal pain have your doctor look into your intestines I have heard of a few cases where because of the nature of this condition the bowels are more likley to move or twist and this can be deadly, you have a higher than normal chance of this happening and you should get it looked into ASAP.
I was born in 1989 and have pain in my scar as well, right near the bottom where the scar is the largest and is drawn together. The doctors at the Children’s Hospital in my town told me it was just built up scar tissue and there wasn’t much they can do because they don’t want to take the chance to reopen my scar. Laurie, were your pregnancies successful? That is another worry of mine, that the strain on my stomach will rip the scar. It’s something I’ve been looking into because I plan on having children in the next five years or so and want to make sure it won’t be a detriment to my body.
I was born in 1993 and have had pain recently in my lower stomach, doctors havent been much use. I dont know whether its related to gastroschisis because I havent had any other problems. Is it normal to flare up randomly? I have been struggling to find anyone who actually has suffered from gastroschisis and only pregnant women whos baby is a sufferer.
My daughter was born with it in 1999,and she has miserable pain with hers daily.It isn’t from her scar,but abdominal pain.It seems to be the same symtoms as you would have from diarrhea or a stomach virus.She never has a soild bowel movement and she has to go to the bathroom immediately after eating.The doctors seem to say the same thing(that they have nothing else to help) and I feel completely helpless.We keep a record of what foods bother her and keep her away from them.Her doctor has her on Hyoscyamine now in pill and liquid.This seems to ease some of the pain.She has one long scar from top to bottom and several others from her bag,central iv,etc.I wish you the best of luck with yours and will post any additional info we recieve.