Life after suffering necrotising enterocolitis (NEC) as a premature baby

I was born mid-July when I should have been born at the end of October in 1986. I was completely septic and they were not sure what kind of learning disabilities I would have. Being from PNW in the US, the surgery was an unknown. The doctor performed it by telephone with a specialist explaining what to do from the East Coast.

I am very lucky on the weight front. I struggle with being overweight, not under. I am limiting more food overtime due to the sick feeling described by others after eating.

I am so glad there are others out there, and people who are living beyond the expected lifetime they constantly guess at. My mom freaked everytime they gave a new expiration date or limit when I was a kid. Proud to say almost 31, graduated in the top ten percent of high school and college. And still relatively healthy. Now if only I had the energy I had in high school...And the willpower to cut out sugar.

Hi,

I was born in 1968 with. Necrotizing Enterocolitis. I had 40 % chance of living. I've had problems with my bowel twisting several times. I have to be careful what I eat and drink or it causes me very bad stomach pain. I have always had bad diarrhea that is very foul smelling. It makes it difficult to go anywhere over night. I will usually refrain from eating if I am too far from a bathroom. I wish there was a doctor that understood my condition. I have a hard time with a lot of meds as well.

Hi all, Not sure if anyone is still around but here goes.

My name is Lottie, I was born 2 weeks early in 1990 and lost half of my large and a couple of feet of my small intestine to NEC.

I'm 27 now, I have two children (always worried if my body would stretch that much with my scars!)I've never really had a problem gaining weigh, I tend to stay the same weight for ages without change.

I was just looking for some advice but I could only find NEC groups on Facebook for new babies rather than adults. (You guys should set one up!)

Over the years I've had the usual trouble of pulling my scars when exercising etc and I rarely have solid bowel movements but in general I'm not too bad.

However I've the last 6 months I seem to have weeks at a time where it's just liquid, like if you have a stomach bug just water, plus stomach cramps which I never normally have.

I've tried to pinpoint it but I can't, though Coca Cola now makes me vomit and I don't know why 😮

Do you find it gets worse when stressed? I get married in 13 weeks and wonder if stress is effecting me. (Wouldnt mind too much if I'd lost any weight from it really as I got a bit dodgy after baby #2 but struggle to excessive without injury)

Our son was born 17 weeks premature and had NEC and he also had 10 centimeters of his intestines removed he doesn't seem to gain weight very well he doesn't have a problem with diarrhea but his breath smells horrible always even with brushing and flossing daily. Sometimes he seems like he's in pain but I don't know if this is IBS or something else due to the fact he has low functioning autism also any info on common pain and things you do about it would be great thank you.

I cannot tell you how happy I am to see something like this! I have felt so alone, with nobody who knew where I was coming from, and doctors often have little to no knowledge of the aftermath of NEC for adult survivors. I am a 20 yr old survivor of NEC, and I live in Manhattan. My doctor ended up being my voice teacher's cousin, and I became friends with his daughter. The man who saved my life got to see me sing arias as a teenager, and even attended my graduation party! He had never gotten to follow up with a patient like that before. Some things can fall into place beautifully😊

Growing up, I would experience random bouts of severe pain around my scar (I used to cry and say my "scar hurts!". I always knew that I had been sick--my parents showed me photos of me in the hospital, and I would brag about my scar because I thought it made me brave and special, like Harry Potter. I have always had a small appetite/gotten full very easily, and if I try to eat as much as the next person, I get sick. My appetite often fluctuates wuth how well I am digesting my food. When I was 16, I was hospitalized with severe abdominal pain, along with other systems of poor digestion. My intestines were inflamed, and I had scarred tissue. I had never known such pain--I was shaking uncontrollably, and I wondered if I was going to die. Eventually, a doctor suggested that I was likely suffering from repercussions from NEC. Since then, I have been in the hospital at least once a year, and have almost had to have surgery on multiple occaisons. Many of the nurses had never heard of NEC, and many doctors denied that NEC can be relevant after infancy. Many doctors only learn about babies with NEC, but not about the survivors. And what is really frustrating is the great lack of information and resources for survivors of NEC.

Do any of you have these kinds of symptoms? Does it ever impact your ability to eat a certain amount of food without getting sick? Also, are there any resouces or support groups to look into? Or should we start a Facebook group to network with other survivors?

Hello I'm 32, and I'm living with Necrotizing Enterocolitis , ever since I was born

I hate it. Because I get to the point I can't eat. Everything I eat it comes out both ways.

Have anybody found a Dr, or a cure or medicine to help them.

Thank you

It is so great to hear so many people that have the same issues as I do! I felt so alone with the condition. My name is Tobee and I am from Utah. I was operated on multiple times due to NEC, however, I acquired it due to the nurses giving me too much formula in an Idaho hospital against my mother's wishes at 10 weeks premature. I have also have a neurological disorder and wondered if anyone else has heard of a correlation? I have researched many papers and neurological disorders are mentioned as an effect since the gut is directly connected to the brain. Anyone have input?

I had necrotizing Interocolitis as an infant and I had 1/2 of my small intestines removed. I'm glad I finally found someone else! I have a lot of issues with going to the bathroom more than other people and I have trouble keeping weight on. Do you have this problem as well? I recently had a baby, and I gained weight for that it afterwards, I lost it all