Effects of gastroschisis in adult life

[kiwi5133]

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.

[myrna1104]

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***@****

[Emmalou76]

Hello, I was born in 1976 and am now 40. I was born with gastroschisis. I grew up with no complications but did get teased about my scars. I tried to not let it bother me. My only concern was I was told due to the amount of scar tissue that it would be extremely difficult to carry a child. Was I was 20 I got my first bowel obstruction. The pain was unbearable and I ended up having surgery. They cut away a lot of scar tissue but the risk of surgery is that more scar tissue is created. I recovered well but did have a lot of bowel problems. At 24 I fell pregnant. I was able to carry my son until 35 weeks and he was healthy and beautiful. I have had multiple bowel obstructions since but no further surgery. No doctor or surgeon want to touch me!! They are all very fascinated by my case though. At 30 I fell pregnant again. This pregnancy was much harder and I went into labour at 26 weeks. There was no room for my uterus to grow due to scar tissue. My son is also healthy and beautiful, he had a rough start being a premie but turned out just fine. I continue to bowel problems and pain but I have altered my diet and try and no the warning signs and act early. Considering how we were born I think of everything as being a blessing for just being here. The pain is not a lot of fun but if you find a good gp and do a lot of trial and error with food and medication I hope you all go on to have a less pain free life. Peppermint oil tablets have been a life saver for me. Remember how special you are and your scars make you even more beautiful xxx

[Taneaya]

My son, Tacoma, was born in 1997 with gastroschisis. He was recently hospitalized, in December 2016, with a bowel obstruction. Your story, is ringing familiar tones to my son's story. Doctors are afraid to touch his obstruction, unless there is absolutely no alternative! It really scares the living crap out of me, and brings all of those old familiar fears I had when he was born, back to the surface again. Point Blank....I am petrified of the thought of losing my son! He will be 20 years old this year, he is married, and he is a father to the most beautiful identical twin girls ever born. I love him....he will always be my baby (he is my youngest). It kills me to watch him agonizing in pain. I would gladly take it from him. Thank you Emmalou for giving me hope and resetting my outlook for the future. Thank you for sharing your story!  Brandy :)

[myrna1104]

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***@****

[kimbea42]

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.

[Chas416]

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!

[opie1kanobie]

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!

[ladytreadis]

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

[Sophieclare12]

Hi guys I’m 23 born with the same condition.

Grew up in and out of hospital constant test and always being starved in hospitals to find no bowel problems and then sent home.

It was only recently I was referred to a pain specialist who informed me it was the actual scar tissue causing so much pain.. my scar tissue was actually stuck to my insides.

So I had what’s called “scar revision surgery”. So my scar was hit cut open and re done. And touch wood, I’ve had no pain like it since.

He also informed me you can actually be sick from pain too.

So just to add, if anyone is still suffering severe pain on/behind their scar, this could be an option for you guys too.

Just keep pushing until you get answers. It took me 20 years to get my answers but I kept pushing.

Good luck everyone!

[Vince340]

Please have an allergy test. My ex wife had many similar conditions for years; hospitalized for months at a time. Finally, it was discovered that she is allergic to corn. She no longer eats anything with any corn products. No corn starch, corn syrup, nothing corn. She has not had an issue since 2013.

[Teverhart1]

vince was your wife diagnosed with  gastroscisis at birth ?  The condition is not an allergy issue  its a birth defect with potential long term complications.  I feel like how ever with your recommendations about corn products you could be on to something  on what not to eat for gastro patients.

[MelanieCrocker2228]

Hey my name is Melanie and I was born with gastroschisis as well. I am currently 16 and having a lot of problems in my abdomen as well. I am constantly vomiting and I'm always constipated. I am glad I saw this because I was trying to do research about this. I am glad I'm not the only one having problems. I was born a month early so it didn't help any but right now my best friend just stopped talking to be because she was ashamed of being around me. People think I was pregnant because my abdomen bloats so much, she was my only friend because everyone is afraid of me because of the condition. It has always cause me problems. In 2012 I was hit by a car while riding a bike and again it just made things worse but my doctor can never find anything so everything points to gastroschisis.

[theFoxx77]

Hey everyone,

I'm almost 40, born in '77 with gastroschisis. I too think more research is necessary for abdominal problems at a older age. After having a child 8 years ago, It seemed I experienced mild abdominal problems.( before too, but they where bearable) I dont know if it had something to do with delivering my beautiful daughter. Every year it seemed to get more severe. 2 Years ago, my what seemed to be obstruction problems, were so bad, I couldn't work anymore. But it wasn't a complete obstruction( no emergency), so after a klysma and a ct scan ( malrotation and a long sigmoid part) I went on with my life. I didn't eat much anymore, because I couldn't. Nausea problems. I couldn't go to the toilet for 8 days. Just a few weeks ago, I had a gastro and a colon after pushing half a year. Dont have energy, i cant go to the toilet without medication en throwing up whenever I eat too fast or too much. Pain is very bad and I have radiating pain in my right leg. I have an appointment with a surgean to go over the MRI. But if I go for an operation, I read here it doesnt help much. What to do. It's very difficult to live like this......
I hope there's a doctor somewhere in the world who has knowledge and reseach outcomes. He or she could certainly use this report. Maybe someone has experience with surgery? Or more specific tips and tricks to eat?
Stay strong

[Kaylaleorocky]

Hello everyone my name is Kayla and
I am 23 years old. I was born in 1993 with gastroschesis. I was born 6 weeks early. When I was a baby I had trouble pooping and I was always constipated. When I was a child I didn't really have too many problems with it effecting my life at all. I would say from 18 on..I have been in pain all the time. When I was 18 I had my gallbladder removed because of gallstones. When I was 19 I started experiencing pain to the point where I would throw up. I had a CT, and thena MRI. I had an explortatory laparotomy and my doctor found out Fallopian tubes were dialuted and not even attached to my uterus. My left ovary and colon were fused. My right ovary was(still is) next to my kidney, and my intestines are basically in one big ball. They removed my Fallopian tubes when I was 20 in hopes that would help solve the issue of my pain, and it has not. Now I am having a lot of pain and trouble pooping. Occasionally I have ovarian cysts that rupture. I have had a colonoscopy and they found it is not crohns, or IBS. Today is one of those days where I am in pain. I work a full time job and feel terrible
When I have to call in.

[EJR1821]

Hi everyone, this has been encouraging to see everyones different stories, but similar effects. I am a 35 yo male born with this condition. I grew up smaller, but no issues growing up with my condition. I was always able to eat constantly and not put any weight on. Very active and athletic build. I had my first bowel obstruction when I was 30 and luckily no surgery was needed. Oddly, since then I have been having issues with with my bowels, inconsistent stools and an odd condition with elevated blood pressure and HR. (I usually have 110/70 BP and 50-60s HR. I took ALL test on heart and kidneys and no issues come up and all my tests come back perfect. I have begun grasping at straws at the basic idea of why all of this is coming up now so I started to look on blogs like this. Currently, I am concerned about nutrition and malabsorbtion. I am a physical therapist so I am capable to assess my BMI, exercise tolerance and weight gain/loss. But, I need a more refined plan for nutrition. Last time I was told, a fiber reduced diet is what was recommended, but is there anyone who talked to a dietition or GI specialist regarding a good nutrition program?

[Atharpe1226]

Hi my name is Angela i am 28 and I was born with this condition as well , I went to a nutritionist once who had me try four different diets I wont go into detail about all four of them, but I immediately found that cutting dairy out of my diet helped  now that could just be coincidence I could just be born with this birth defect and lactose intolerant but the nutritionist also told me that they had done research on this birth defect and found that lactose was often an issue.  I was wondering if you had ever heard of this?  because I also met a woman who had a son that was just a little baby and she told me that the doctor had instructed her not to give him any dairy until he was at least two years of age. So his  intestines could adjust or something of that sort.  I have really had no complications other than regular bathroom issues  but one of the hardest parts for me is how little I know about this birth defect the fact That I have so many questions and it seems like nobody has any answers . I dont understand why a birth defect this common and growing even more common everyday  so hard to find anything out about.

[minnis76]

I have a daughter that was born in 2006 with a very complicated gastroschisis. We were lucky to have very experienced and specialised doctors that saved her life (she was given 20% chance for survival ) When she was 1 years old she started to have severe diarrea and further on she started to voimit every now and then. 6 months we tried to convince the doctorns that something was wrong before they did surgery (by this time voimiting occured daily . During surgery, severe malformation on the duodenum was found but they aso found that the intestines had grown together. What I understood from then is that it is likely that the intestines can grow together whenever you have made surgery in that area and that this can occur again and more than once during their lifetime.
My daughter has done quit well so far but since 3 months she has got more pain and noice from the stomach, chronic diarrea, sleppless nights, loss of energy, pailness and loss of interest in food. Unfortunately I am afraid that the function of the gastrointestinal tract is deranged again.
We have a very good health care for kids with gastroschisis , but I am not aware of how the care works for grown ups. That I will need to find out!
Best wishes to you all!

[Phyllis204]

I to have a question about this my son he is five has the same problems you have in pain after eating trouble with pooping too. He is five years old and I don't know what to do and yes the doctors do blow it off he has had two blood tranfusions and a hernia operation done too I always worrie about him at school and when he fights with his brother or his sister and he was born with gastroscissis too

[Charlottenellie]

Im so sorry to hear all your storys.. But please can someone help me i feel so lost i gave biryh to my daughter in 2009 she is now 7 she was born with gastroschisis ans she suffers alot of belly ache wen she got it bad i kept her off school took her doctors and they said she was fine but she suffers bad what do i do i feel for my little girl its not fair please can someone recommend a special diet or anything i can do just to help her xxx

[Kayla0390]

My son also born in 2009 suffers badly with his stomache if he is at a party or special occasion i really have to  watch what he eats and make sure he doesnt eat too much. Pastry and batterd things are a no go (he still tries to push it though lol) i have to make sure he drinks plenty and always hydrated i usually find smaller meals but more often works best but he still has days were his constipated and his belly cant handle it and his sick or it hurts when he goes to the toilet etc..

[Kayla_Senpia]

Hey Savanna i'm Kayla and i'm 13 and for a long time i was teased about my condition and i never new that there were other people like me. I still am teased to this day my best friend Josie calls it a belly zipper lol., its offensive at moments but it just depends on the way she uses it.I would like to get in contact with you just know about how you do you daily routine and stuff like that just to get to know ya. I didn't even know there saw a site like this lol, well when ever you get a chance ill be here for a quick response thannk you for sharing your story.

-Kayla Rangel

[Charlottenellie]

I tell my daughter its a sexy scar and its the best because noone else as got it and if people tease its cause they are jelouse and dont understand what the problem is please dont let it get u down sweetie just remember lovely u dont have to be embarrsed or bitter u was born this way and u are no diffrent to anyone else beautiful inside and out as i tell my daughter chin up xxx

[rashaarntaita]

Hey, my name is Rashaarn and I am 19. I was born with Gastroschisis and I can tell you now that you should never feel ashamed about your condition or the way you look. I used to always let it keep me down growing up and I was so afraid of people finding out in high school and making fun of me. I soon realised that it doesn't really matter what people think of you, it only matters what you think about yourself. My friends used to think it was cool, laughing at me when I said I didn't have a belly button and saying that I do it's just a bigger one aha or encouraging me to wear bikinis and show my body off with them cause they weren't confident with their bodies either. I have had times where people have made nasty comments but they were quickly taken back as I and peers would snap at them. I have never met anyone or have spoken to anyone with the same condition as me but have known that there are a lot more people like me out there than I think there is. It's always interesting and an inspiration to read stories like your own. Always up for a chat. - Rashaarn

[ashleyviola12]

I was born in 1994 with gastroschisis. I have always had pain around my scar but the last year it has gotten worse. Just before Christmas I was hospitalized. Sorry for the info but I feel it is relevant. I was pooping pure blood and projectile vomiting. All they did at the hospital was hydrate me and send me home with some anti inflammatory pills. They informed me it was a bowel infection. I have never been in so much pain in my life. A few weeks ago I was experiencing a lot of rumbling and discomfort, I had barely been eating, gagging but nothing would come up so I was admitted to the hospital. They thought my appendix was rupturing but they were unable to identify my appendix (?). They informed me that I had another bowel infection, they found some sort of mass on my kidney and discovered my bowels were twisted around my scar tissue. They said they did not want to operate on me to un twist them because then I will have even more scar tissue for them to twist around a second time so they sent me home in hopes that it would work itself out. I was sent to my family doctor so she could schedule me an advanced MRI. When i went to my appointment she informed me that I had a second surgery because I had complications at birth. I'm not sure exactly what it was but I'm pretty sure she said half of my colon had to be removed... she requested a full report of my medical history so I am waiting to see if there is anything else I had no idea about. I have to go for blood word to determine whether or not my kidneys are fully functioning before I can be scheduled for an MRI. I informed my doctor that I have barely been eating because lately it hurts way more to eat and I become extremely bloating from only eating a mere few bites of food so she told me that if that is something that is helping me than to just stick to clear liquids and limit my food intake to see if that helps. She is also testing me to see if I have an allergy to gluten which may be playing a role in my current bowel issue. If anyone wants to talk to me about your issues or have questions feel free to email me, I check it daily.
ashley.***@****

[perezmemily]

Hello, my name is Emily. I'm 16 years old and was also born with gastroschisis. It's a struggle having this condition because I'm the only person I know that was born with this in my life. It happens to every few million babies that are born everywhere. I was born in May 9th 2000. I was and still kind of not really confident about showing off my body. But ever since June my friends helped me to be more confident. My friends didn't care what I was born with but they told me no matter what I'm still beautiful and never be afraid of showing yourself. People in my family tells me all the time that's what makes me even more special.

[rashaarntaita]

Oops, I commented this on a wrong post last. Was meant for you. :)

Hey, my name is Rashaarn and I am 19. I was born with Gastroschisis and I can tell you now that you should never feel ashamed about your condition or the way you look. I used to always let it keep me down growing up and I was so afraid of people finding out in high school and making fun of me. I soon realised that it doesn't really matter what people think of you, it only matters what you think about yourself. My friends used to think it was cool, laughing at me when I said I didn't have a belly button and saying that I do it's just a bigger one aha or encouraging me to wear bikinis and show my body off with them cause they weren't confident with their bodies either. I have had times where people have made nasty comments but they were quickly taken back as I and peers would snap at them. I have never met anyone or have spoken to anyone with the same condition as me but have known that there are a lot more people like me out there than I think there is. It's always interesting and an inspiration to read stories like your own. Always up for a chat. - Rashaarn

[zigdesseb]

My son was born with gastroschisis in 2008 and reading the comments above scared me, until I came across yours. My son was released from the nicu in only 3 weeks, the doctors said that was amazing and he was a fighter, I believe it was all our prayers being answered and he was released just 2 days before Christmas :) he has never complained about pain and I pray to God that he never has to deal with any of those symptoms in his future. God is GREAT, thank you for sharing, God bless.

[Teverhart1]

My son had gastroschisis at birth he was born in 95.  he has never had an issue until now.  he had 90 percent of his small bowl out. 80 percent of his large a small portion of his stomach was exposed as well as  the left lobe of his liver  could be seen .  He was released at three weeks no complications. like everyone here a miracle baby.   Please keep an eye on your son.  my son has gone 27 years with no complications.  right now he is in the hospital  with an obstruction.  he is 75 percent constricted with scar tissue.   this is the first its reared its ugly head.   i just think its bizzare that after so many years of perfect health and all of a sudden it hits.   My sister runs a small apartment complex with a lot of retired people .  its not a retirement community they just seem to like that area.  long story short  there is a retired surgeon that lives there.  he mentioned that in a lot of cases when a gastro baby is aroun mid 20 early 30 issues can arise. he recommended to do not call the doctor but go straight to the emergency room .  because there is little knowledge  about this condition  immediate treatment is the best.  

[geniza9]

Hi,

I'm writing you from the ER. My daughter is 16 with the same symptoms as everyone else.

Could you give me a follow up as to how you are doing?

Thank you so much from a very concerned mother.

Jenny

[geniza9]

Hi Sophieclare12,

I'm writing you from the ER. My daughter is 16 with the same symptoms as everyone else.

Could you give me a follow up as to how you are doing?

Thank you so much from a very concerned mother.

Jenny

[Saraj311984]

Hello I'm a 31 year old women  born with gastroschisis I have short bowel syndrome and malabsorption problems and they are finding more and more wrong with me every day I lost a kidney due to the inability to break down kidney stones and have 2auto immune diseases I'm aware of. I have had countless surgeries and they used to be 5 to 6 years apart now they are a year and a half apart I can barely eat because of the strictures and ulcers at my surgery sites and in 2014 I had 5 surgeries one bowel resection and 4 hernia repairs. I was blessed with three beautiful children after being told I wouldn't be able to have any and my mother was told I wouldn't make it to 20. Unfortunately my children have significant health issues and they can't say it wasn't a result of my malnutrition problems. It has been a hard 31 years I can't work and did not graduate high school I went on to get my GED and went to vocational school butnwas unable to pursue because of my health is there anyone out there that shares in my experience I feel like no one u derstands how hard this is. Thank you

[caz_leslie]

Hi my daughter is now 11 years old and is a gastroschisis baby she she has also been in a lot of pain for the past few months n describing the pain top right of her scar, being worried i took her to the doctors and she had a ultrasound done n found a gallstone.
In the process of making a date to get it removed but when we first found out i was shocked i always thought adults get those until i did my research kids can get those but not very common, also my daughter has also been very very under weight and height for her age.

[amandalb5]

Hi! I had my gallbladder out when I was 6! I was born with gastroschisis. I am now 28. Hope your daughter feels better!

[Sophieclare12]

Hi I'm 20 years old and have been living with the same problem my entire life with same side effects. I'm constantly addmited to hospital for my abdominal pain and giver ct scans ect but always given the all clear and sent home still doubled over in pain!
I have only recently this year been refered to a pain clinic who have discovered it's the nerve endings in my actual scar causing the pain which I have been given medication for which has helped ease the pain tremendously! I have also been refered to a plastic Surgeon who is performing scar revision surgery in the next couple of months!!
I know it's a hard battle but keep pushing for the answers you need to help with the pain!!
Ive finally found my answers!! But wouldn't have without the pain team so might be worth taking into consideration as I had the exact same signs and symptoms and the pain team out there finger on it within seconds!
Hope this helps!!

[petapie]

Hi, my daughter was born with her intestines on the outside as well.She is my adopted daughter.I have had her since she was 4.She is now 15 and has severe pain daily.She has never had a solid bowel movement.Everything she eats hours through her within 15 mins.I've taken her to Children's Hospital in Birmingham, which is where she was born, as well as Hospital Huntsville and I get the same response that nothing can be done and this is normal considering how badly scarred she is.I can't imagine her living in such pain and not being able to get a definite answer on what is causing it.I really need help.Also, to any of you living with stomach pain associated with this, she does take a medicine called Hyoscyamine that helps a little.