Hello
I was born with Gastroschisis in 1985 in St. Mary’s Hospital in London, I was immediately moved to great Ormond street hospital for specialised care. As Well as Gastroschisis i was also born with Intestinal malrotation to complicate matters. The surgery was successful but there were complications in closing up my stomach. unfortunately, they sewed my bowel to my scar, something they could not fix at the time as it was to much of a risk.
Growing up the only problems i had as a result of the Gastroschisis was i had asthma and was a little shy about showing my stomach as my scar goes all the way from the bottom of my midriff to my chest and is quite jagged, (its like a tree with branches). When i turned 18 i went to see a skin graph specialist regarding it, unfortunately i was told that they would have to remove my bowel from my scar before they could do anything but i was told there was a very high involved in doing it, so i didn’t pursue it.
When i turned 21 (i am now 27), that’s when i started to have complications. I have been getting severe abdominal cramp, so much so the pain causes me to pass out on occasion, i can’t digest food properly anymore and am constantly in the bathroom. I have been to the hospital on many many occasion’s over the last 6 years regarding these problems as they cause me so much pain, i have been passed around to at least 6 different specialists and had every conceivable test and nobody can seem to help me diagnose the problems i am having. I am very reluctant to have exploratory surgery as this first requires the removal of my bowel from my scar, something all the doctors and surgeons say is very high risk.
If anybody has similar symptoms or has been treated successfully in the past. Please contact me, I’m stuck as to where to go and what to do next.
Pasquale
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hi there,ur story sound so so similar to mine,and this is a first for me but reading ur blog is why i have msgd u, u say that ur scar reminds u of a tree wit branches……. here is my contact number 07852181858 would love to meet for coffee and no more about how u have dealt wit gastroschisis….
Hey, Ive had soo many problems just like you.. once I turned 18 (now 20) I was told that my insides were put in backwards/twisted? an I have twisted bowels, Ive been going to SOO many Doctors it isn’t even funny.. my pains actually makes me not to be able to work.. but I still look for a job but when I tell them about my stomach(Which we have to) they always say no thanks.. but I know I’m probably not very helpful.. but no doctors are welling to redo my surgery an when they find out I have no money or health insurance.. all i can say is.. have you tried holding a pillow against your stomach when you have the pains? its kinda helpful.. but I do wish you the best..
Since I wrote my story a lot has changed. A month ago i ended up in hospital with severe abdominal pain. I was in there for 5 days and transferred to a gastro specialist hospital. It was quite bad and i nearly died. I am now only getting over it and have had to take a month off work.
The reason for my pain is that my intestine had twisted and had started to die because of the lack of oxygen and the doctors had to pump me full of drugs to try and relax the intestine enough to untwist it, after the third day it managed to untwist. The doctors decided not to do surgery because they considered it to dangerous, even though i have had many scans to show whats going on in my stomach, they would still not know how to resolve the problem.
The good news.
Since then doctors have managed to tell me what is causing all the pain. So my intestine is twisted which occasionally twists even more and i also have cancerous adhesion’s on my intestine causing some of the pain. Doctors have decided that i do need surgery and will have to remove that part of my intestine. At the moment i am having more scans to determine exactly how to do it. Should be having the surgery before the end of the year. So fingers crossed. I will keep you posted x
I was born in 1991 which makes me 20 now and I just got out of the hospital a couple days ago for abdominal pain. They say its from constipation. Luckily i have an amazing doctor and he noticed something that the hospital didn’t, I have a part of my bowel that is suppose to be attached at the bottom but instead can move up and down my right side. He is scared of it twisting and me having to have it taken out. Its scary reading your post as it sounds like what im going through right now, i would love to chat with you my email is lil_shorty_103@live.com and will hopefully be getting and email soon. HOPE YOU FEEL BETTER!!