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Avatar universal

Effects of gastroschisis in adult life

Hello, I am 23 years old and I am having serious issues and I don't know where to turn. I was born with gastroschisis and repaired with no complications that I know of. As a child I would always cry after eating and have constant bowel problems as I grew up (abd pain/constipation). I am now in my 20's and I feel like I'm 90. I have pain 24/7, I am always bloated and I have a BM like once a week if I'm lucky. I have seen 4 gastro's, had a colonoscopy, small bowel study and found that I have an intestinal malrotation (large intestine on the left, small on the right) but that nothing they saw explains my pain, no obstruction, volvulus, etc. I have been given fiber, magnesium, colace and so on and nothing works. I eat healthy and take care of my body otherwise. I am missing work and school and the rest of my life because I am always in pain. No one will help me and every Dr. I have seen seems to blow off my past history and my current findings. Is this just IBS-C or maybe something worse? What can I do? I live in a very small town with little options here.
Thank you very much for any help you can give.
51 Responses
Avatar universal
I am 33 years old and also have gastroschisis.  Many of the same symptoms you describe I am also experiencing so you are not alone.  I was recently diagnosed with a severe case of gallstones along with common bile duct and hepatic obstructions which explain a lot of the pain I am in.  Before the onset of this pain, I had always experienced mild to severe pain in my abdomen, had trouble with bowel movements or urination, have always been underweight to an unhealthy degree (I graduated high school at 98 pounds) and my scars are sensitive to this day.  If I run my hands over it for any period of time it feels like the entire thing will explode open.  I need to have my gulbladder removed immediately and the obstructions removed, but have no insurance yet and even when i do get it, the operation may not be covered or I may have to wait which really is not an option.  The likely option is I will end up in the ER and have an emergency operation done which may mean it is already too late.  I worry that you may have something similar and that you should have your gulbladder checked out especially since stones are more prevalent in women than in men.  An ultrasound or CT scan is most likely in order.  My pain is located mostly in the upper right quadrant of my abdomen and recently my palms have turned almost entirely red which was noticeable because I have always been so pale.  My pain is getting worse each day and college work is being put off as well as general activities because I am always in pain and tired and running a low to mid grade fever off and on, with more episodes at night.  My thoughts and prayers are with you and I hope you will keep me updated.
3 Comments
You are a fraud.  33 year old people do not HAVE gastroschisis, as it is a BIRTH DEFECT that people have when they are BORN, and would not live to even one week old, if it were still present, as it is when you are BORN, with your entire intestinal tract OUTSIDE of your body, OUTSIDE of the membrane, so you are saying that you are NOW a 33 year old person who has their entire intestinal tract, outside your body??  Please disappear from this comment section... serious questions and answers ONLY.  
How rude! This person meant they were born with gastroschisis. Geez!
How rude! This person meant they were born with gastroschisis. Geez!
Avatar universal
I'm a 27 year old born in1984 female. I to had this I have pain everyday the test always come out fine when I go to the hospital. I seen these post were awhile ago how do I manage my pain I think the doctors think I'm crazy I'm so sick of not being able to function like everyone else can u give me some advice
Avatar universal
I'm a 27 year old born in1984 female. I to had this I have pain everyday the test always come out fine when I go to the hospital. I seen these post were awhile ago how do I manage my pain I think the doctors think I'm crazy I'm so sick of not being able to function like everyone else can u give me some advice
Avatar universal
at what age after surgery did your pain start?Did your parents say that it was young? My daughter was born with gastroschisis and she is 5 and has been complaining, constipated, saying its burning inside for a year or longer. I don't know what to do.
1 Comments
hi, my son was born with Gastroschisis. he is now 6 soon to be 7.He is currently in the hospital do to affects of the surgery years ago. you might consider taking her to a Childrens Hospital and let them know what is going on before it gets worst.
4448264 tn?1354733492
hello i am also 23 three was born with gastroschisis im also in pain everyday dont go to the restroom with out ememas and i to am being past from dr to dr n they dont know what to do with me!  if u need someone to talk to we can try n work it out togthere never met someone like me b4 its kinda amazing to know im not alone if u ever want to tak my name is ashley joyce  im on facebook or ur can email me at ***@****
thanks for  posting ur story hope u are havning so comfort now
4448264 tn?1354733492
iwhen i was yonger what woukd help me was a heading pad and laying on the floor idk why but it help alot my mom said u should ask here were onh her belluy hurts the most n tell her to tuch it alot of the time if u rub it it feels better unless it more like a scar pain that hurts alot cuz as she grows her scar tissue will start ti bother here so u mite want to explain that to her but all i can say is from what iu have delt with amd im still havng issues now but i look at the things the best way i can n i think this will help her a bit
Avatar universal
I am a 35 year old female that was born in 1977 with gastroschisis. I too have had problems all my life with pain after eating & failure to thrive. They put me on every diet imaginable to gain weight, which never worked! I have had either constipation or diarrhea constantly. And the laxitives only cause more issues! When I was about 21 I started having issues eating at all. I could only take a few bites, then it was like my throat closed up! If I tried to force it, I would vomit! I was close to 80 lbs before that got better, with no answers! And when I say better, that only meant it happened occasionally! I have had what I thought was just bad indigestion several times over the years. Turns out, after going to the ER for a full bowel obstruction; that I was having obstructions the whole time! Very scary, considering it can be fatal! I had 2 while I was pregnant with my son! The ER drs did a CT scan & found that I have malrotation of my large & small intestine. My small intestine is fully to the right & is shorter than normal. My large intestine is folded over itself on top of my small intestine! Since the ER visit in August of this year I have had constant nausea, abdominal pain, bloating, kidney pain, constipation & difficulty eating anything solid. My GI Dr says its gastroparisis or slow emptying of the stomach. And says the malrotation doesn't cause this, even though he is not familiar with it in adults! I disagree & will be seeing a surgeon on friday at the UW. I guess my ramble is to urge anyone with these issues; especially after gastroschisis needs to fight to be heard! All the study's for malrotation in gastroschisis survivors, where only done for the 1st 4 years of life! More study's need to be done with adult survivors!
4448264 tn?1354733492
thanks for this it seams to help i talk to a surgeon a new one and he did a tet no other dr did my whole life having this problem and they found som,ething! u made me think that just cuz they aredr dosnt mean they know my body better then me and i am now trying my best to get as close to normal as i can thanks again
ashley joyce
Avatar universal
you r not alone...my name is myrna and I recently had two surgeries due to small bowel obstructions this due to adhesions....currnetly looking or trying to look for a gi specialist in gatsrochiosis it seems like there is a lot of info regarding babies and pregnancies but not really for adults....if i find something ill b glad to let u know...how know exactly how u r feeling... love_alejandra***@****
Avatar universal
you r right...Im currently trying to find a doctor who handles gastrochisis in adults....it seems like gi problems r very common and there is only information for newborns and mother to be...Im 30 yrs old and recently had two surgeries due to adhesions causing small bowel obstruction...but no doctor seems to know whats next....love_alejandra***@****
Avatar universal
I just got dx'd today with constant ongoing Gastritis.  I do have a great GI doctor though, he's a Georgetown graduate as well as a Yale person & has been a GI dr for over 20 years.

What he said:

ALOE VERA JUICE - good, very good for my issues (ulcer, ongoing severe gastritis)

KEFIR - he did not think it helped me much, I explained that it did for me, it relieved symptoms a lot, not all the time.

Because I don't have H. Pylori his opinion was that the kefir would not do me much good (kefir puts in good bacteria), but still, I think it's good.

It is my personal opinion that kefir and aloe are great, I'm looking into getting mastic gum & possibly DGL Licorice too.

Hope any of this helps.
Avatar universal
My daughter was born with gastroschisis aswell...... She is nearly 11.
I worry about her a lot as she just doesn't eat much at all and for the past 3 nights keeps complaining that she feels really wick and can't even lay down.  She has always complained about sickness and tummy aches more than my other kids. Could this be down to having gastroschisis??!
Avatar universal
I'm a 29 year old male. I was born with gastrochesis. I've had abdominal and stomach pain here and there in the past, but it would always blow over. A couple weeks ago after eating lunch at work I started having an upset stomach. About 9 hours later it was full blown unbearable pain! I waited as long as I could trying to get it to pass untill about 24 hours later & I was headed to the E.R. It turns out I had lower bowel ubstruction due to scar tissue from one of my original incisions. The surgen's words were " It was a mess in there". It total surprised me to have this happen. I always grew up with a sense that I was fairly healthy & strong most of the time & didnt like to talk about my ill health as a newborn. I have dealt with being under weight like a lot of adults say. I'm 5'10 120 lbs-140 lbs, my weight and appeitite just flucuate.  I now have a sense of being more aware of my condition & body. I quick smoking the day I went to the E.R. and am lucky to have an sweet understanding woman by my side. I have two boys 1 & 3 & I need to be healthy and work for them. It just scares me that this will happen again because from what I understand It may. Thanks for sharing everyone, good luck to all of us!
Avatar universal
I am 42  yes old and I was born with gastroschisis. I have had several surgeries to remove scar tissue. I ended up having a hysterectomy. Gratefully I already had three awesome boys. When I was pregnant with my third son I had to have stomach surgery to remove scar tissue. It was pretty scary. I have always had issues with constipation and sensitivity to what I eat. Lately I have been really nauseated and in a lot of pain.I have had a hyda scan to check my gallbladder and a CAT scan only to find out I have three kidney stones and one gallstone. It gets pretty depressing always feeling sick. Reading everyone's comments has really helped me. Im sorry that other people have to go through this but it helps to know I am not alone. I am hoping I can get the pain and nausea under control. I have an amazing husband who is patient and kind. It was nice venting. I hope tomorrow is a good day.
Avatar universal
Hi. I'm 22 years old and was born with gastroschisis. I had similar experiences growing up. I don't remember how many times my parents took me to the ER for severe abdominal pain and cramping, but it would usually resolve itself after I threw up. However, when I was 15, the pain and cramping wouldn't go away, even after vomiting. I was transferred to the Children's Hospital for emergency surgery. The adhesions from my previous surgeries (I had 2, 1 at birth, the other when I was 5) had kinked my bowel.  My surgeon was great. He explained that it was common for the adhesions to develop and lead to the symptoms I had been experiencing all my life, but it usually occurred closer to the initial surgeries (not 10 years later...).

I haven't had any major issues or ER visits since then, although I still experience some discomfort at times. I learned that my entire colon is on the left, while my small intestine is on the right. So, my symptoms were not caused by appendicitis, which is what the 1st hospital thought it was (if I had normal anatomy). Thankfully, my dad refused their suggestion to do exploratory surgery to figure out the problem, and I was transferred to Children's who took into consideration my medical history.
Avatar universal
hey i'm 18, about to graduate and such, and i've had gastroschisis since i was born. i was stuck in the hospital for 3 months when i was first born, had zero contact with my parents (which has affected me to this day) and i am now recently starting to be in severe pain. my dad has always said that i've had issues since i was like 5 or 6 because i wouldn't poop, i'd always hold it in...reading all this makes me extremely anxious and worried that i'm going to have to live through pain and surgeries...
Avatar universal
im 12 years old and I was born with gastroschisis.  I was born 5 weeks early and stayed in the hospital for a month and half before I was released. I am also feeling weak and I know that this can hurt. I just want kids and adults or anybody that has gastroschisis or has a loved one with gastroschisis that they are not alone and just keep telling yourself that you are strong and that you will get through it. Im not sure that it helps but just know that YOU ARE NOT ALONE!!! So Mer84, tell your daughter that she is not alone and that there are people going through nearly the same exact thing.
Avatar universal
Hi I am Savanna I am 12 I am also born with Gastroschisis and I was in the hospital for two months after my birth and I know dealing with it is hard having pains and stuff like that ever since I was little I did not like having a weird belly button and it made me feel uncomfortable but I feel a little bit glad that I know that I am not alone and to know that kids my age have the same problem so I hope we can all handle this together
9327931 tn?1403108681

I am a 36(nearly 37 ) year old woman.
I was born in the capital city of Alberta, Canada.
Born with undetected(before birth) Gastroscesis ...
The hospital I was born in could not do the Sx so I was whisked away to another hospital (before my Mother even knew if I was a girl or boy!)
Sx took 3 Dr's, 3 interns, and 2 Students around 7 hrs.
I was places in NICU incubator for 4 1/2 months,with ZERO human touch (without gloves) until 3 months in.
In childhood my mother did not understand my pain and passed it off as "gas".
In early adulthood, Dr's didn't understand my issues, and prescribed me Ulcer meds.
In later adulthood, I was hospitalized for 1 week having Nasal Gastric tubes, and 3x /day enemas...
The pain causes me to not rest full nights (when flare ups happen), bowel movements MAYBE every 5 weeks...
I am currently on search for yet another specialist (this will be my 7th)

The worst of it is that I was once told that I could get Sx to remove portions of small, large intestine, and bowel...then add a "bridge" to reduce chances of malrotation to reoccur.However, the Dr's have all said that it is not something they will do unless in an emergency...
I figure..I KNOW my body more than they possibly could, and missing out on rest, nutrition, and every day activities (such as missing LARGE amounts of work!!) IS an EMERGENCY!!!!
Avatar universal
does someone knows about a good gi I live in texas but im willing to travel...it is really difficult to find a good gi who actually knows whats going on with gastroschsis adults and proper diet!!!
Avatar universal
hope u r feeling better... I share ur pain since I recently had a small bowel obstruction sx because of adhesions from gastroschisis and I also share ur frustration since im not able to find a decent gi specialist familiar with adult gastrocshisis... let me know how u r doing and any information u have so together we can help each other
Avatar universal
hope  r feeling better...I went to something similar since up to last year when I turned 31 my health was decent...chronic constipation that was it. Then I went thru two different small bowel obstructions and one resection of my small instestines... I know exactly how u r feeling... no straight answer and no direct help from the "specialist". two different gi surgeons recommend me a fiber free diet and to avoid strawberries, oranges, pineapple and other grains...wondering if they give u a specific diet as well??
Avatar universal
guys it is really REALLY  frustrating how little information there is for gastroschisis adults.... we r all aware of adhesions and there possible complications but what about diet??? what about proper gi care??? I think is about time to start a blog or any type of communication amoung us to help each other...seems to me we r the one who know more about this than the "specialists"... myrna_1***@****  love_alejandra***@****
Avatar universal
sorry to hear ur problems since I relate to them... I call the MAYO clinic in Arizona and Florida and they seems to know little about gastroschisis.... im currently looking for a specialist too... I will let u know if I find someone please keep me pdate with u...thanks
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