Life after suffering necrotising enterocolitis (NEC) as a premature baby
Posted , 50 users are following.
Hi,
I am looking to find somebody (anybody) who, as a baby, premature or not had suffered necrotising enterocolitis. I was born 10 weeks premature and had necrotising enterocolitis, I had at least 3/4 of my small intestine removed and have been living with the 'aftermath' ever since. I'm 26 and the side effects of NEC have left me with constant diarrhea, which apparently no doctor can do anything about, or prescribe anything to ease this - anybody know anything about this??
Hopefully I will find somebody else who has gone through the same 
and is living with it...happily!
6 likes, 87 replies
katlin65202 Purplepower
Posted
Chronic anemia, due to internal bleeding resulted in several blood transfusions in elementary school. Followed by iron treatments up until highschool. Since highschool I've had a kidney stone and gallbladder stones that had to be removed surgically due to my bodies inability to break down nutrient's correctly.
Healthy I thought, now I can live life? We anyone with NEC I'm sure haS IBS, and throughout life has struggled with chronic diereah, however two years ago I got a blockage that almost made me septic..... This girl who can count on one hand how many solid stools I've had, had a blockage???? Well recently I've been experiencing the same symptoms, instant bloating after eating, extreme gas, pain in my stomach, as well as no longer feeling empty after I go to the restroom. I was curious if anyone in this group has gone through this or experiencing the same problems later in life?
Thanks!
Purplepower katlin65202
Posted
My Name's Amy and i'm now 30yrs old - I was so pleased when I started this discussion, how many others there are out in the world that have experienced the same or similar. Although, obviously, it would be nice to say that nobody else has suffered this as it is not the most plesant
however, it's good to have support for each other.
I too had chronic anemia, they never did find out what the cause was, they thought it might have been polyps but never found any. That has now changed to pernecious anemia so goodness knows what changed inside.
I too get instant bloating after eating - regardless of how healthy the food is, extreme gas seems to be a given however, oddly, I had to go for an colonoscopy recently and that seems to have sorted that problem (albeit temporarily no doubt) the stomach pain is also something I live with - I also often feel like somebody has put a tight band around my chest (just under my breasts) and find that I bloat from there too, its painful too, sometimes so much so that I can't face to move or eat, is this something you suffer from also?
With regards to the loose stools, I have yet to find anything that helps, some of the discussions above mention pills etc but these only seem to make me more bloated and unable to go.
Do you have much of your intestine left?
Thank you for getting in touch and look forward to hearing from you shortly.
Take care,
Amy
katlin65202 Purplepower
Posted
I lost four inches of small six inches of large, and the valve inbetween. They to could not figure out where I was internally bleeding from.
I am no longer anemic, however in high school we started doing in-fed iron treatments. My mom actually went to school and became an RN as a result of my illness.... She was my advocate and usually told the doctors what we were going to be doing.
She asked me to ask you if you've had the size of your red blood cells checked? They may not be maturing fast enough to thrive. I suppose that's why we did the in-fed iron, which really worked and gave me energy.
I'm greatful you've started this chat. I've NEVER been able to relate to or talk to someone with the same illness!
I do get the bloating when I eat, I've gotten to the point that if I don't "feel" empty after going to the restroom for a few weeks, I take laxative... I'm not sure if I have scar tissue built up in my intestine. I do get that pain high in my chest, usually on my right side, I've always associated it with gas....
Do you take iron pills? Or anything of that sort? How much intestine do you lose and where?
Best reguards and thank you for the reply, my mom said if you'd like to discuss with her ever she would be willing to do we brain storming.... Anyhow looking forward to hearing from you!
Katlin
annemarie55044 katlin65202
Posted
I am 28, and ha NEC as a baby I am currently undergoing investment into sibo small overgrowth in baterica it left me to the stage where I be sick gas bloating and now I've never took on any special diet when I was baby aye but as I got older I just eat what I like but it has affected me now as I've IBS AMD now over growth I find hard to keep weight on or something I go opposite I hope this help xx
laqwiesha63403 Purplepower
Posted
KatlynWhit Purplepower
Posted
Hi,
My name is Katlyn and I am 17 years old and I was born 12 weeks premature and I was diagnosed with NEC 2 days after I was born. I had alittle over 6 cm removed the first time at only 3 days old and they patched up a hole.
But that wasn't the beginning of the surgeries. I haven't had any problems with my weight or what I can and can't eat but I eat cautiously anyways.
When I was 5 years old the hole reopened without any warning and I had to get another surgery to repair it again. The doctors still to this day 12 years later can't give me a reason why it re opened.
It is so nice to read about people that have the same disease as I did and to read all of yalls stories.
I still have to go yearly to the hospital to get checkups and monitored to make sure it doesn't reopen. Doctors told me that babies with NEC usually don't live normal lives but look at all of us beating those expectations!
Thank you for yalls stories and help tips!
anc44 Purplepower
Posted
I had NEC surgery as a preemie, and I'm 28 now. The surgery left me with a huge abdominal scar that goes from boobs to below navel... and then across navel the other way. I started having bowel issues when I turned 25. I've been having worsening chronic constipation since then. Before, it'd be a few months in between episodes. Now it's a daily struggle to stay on top of symptoms. I have lower abdominal discomfort that begins right at the bottom of one of my scars - and my skin feels like it's on fire sometimes. This skin feeling has begun in April.
I see a physical therapist for Pelvic Floor Therapy, who has worked on my scar tissue. No one has ever touched it before, doctor-wise... no one thought it'd ever be a problem. I guess I have all kinds of adhesions. It's a painful existence - one that I wouldn't wish on anyone. From the outside, I look fine - but no one has a clue half the time how I really feel.
I've been seeing a GI doctor for 3 years. They have me on Linzess and it's just... so frustrating. It's not enough. I'm always worried I have something more sinister going on. I'm trying to make an appointment with a new GI in a new practice, just to get a new opinion. Had a clear colonoscopy two years ago, have had clear CT scans and x-rays that always show Constipation only...
Basically, it's been a weird thing. I had no issues growing up. Nothing super wrong until turning 25 and I'm 28 now. I'm also looking into endometriosis.
kaylin2011 Purplepower
Posted
Hiya,
I'm Kaylin, it is really great to find this! I am soon to be 24 and I have been dealing with almost all of these issues my whole life but more so this past year or two. I was a premie with my twin sister and I had almost half of my small intestine removed and some of the large intestine.
It feels like my life has been a medical nightmare with no explanation any doctor can tell me. I get agonizing pain for days to weeks , I've been told it's gas, heartburn,even a appendicitis ( joke was on him mine was removed with the intestines) but no one can tell me why I get this painting or how to help. It feels like it was described above like a tight band just under my breasts. I have noticed though it does hurt worse when someone pushes near the gallbladder but I don't have gallstones so no dice there
I have had constant diarrhea for almost a year now and I'm 90% sure I'm anemic. It just gets so tiring hearing over and over nothing is wrong or its gas or heartburn ect. I know what my gas pain feels like and my heartburn pain feels like but no one will listen to me. It is impossible for me to even get to a GI in any time under 6 months. I'm in the Navy and every time I even try to get help I basically get shoved out the door because they think I am just making this up.
I also get the random burning pain under my skin but I also noticed it is in different spots on my body like it's completely random. I mean there must be some doctor out there that has looked at the long term effects by now haven't they? I just wish I had answers instead of the general diagnosis because it's the easy route
Purplepower kaylin2011
Posted
Hi Kaylin,
Lovely to hear from you and welcome to the group
I too have that pain described under my breasts like a tight band. I recently went to hospital A&E with it, I was in for a few days being dosed up on pain killers and starved. They finally came up with the idea that it was probably food that had become trapped in my bowel due to abrasions and scar tissue. However, I also went for an ultrasound and they found that my gall bladder pipe was slightly dilated which was allowing more bike than usual to pass. I'm not sure if this was the cause of the pain. I was also told never to eat dried fruit such as raisens or dried apricots etc.
I know how you feel with being fobed off though and it's very frustrating!
I hope you find somebody that will help
let me know
All the best,
Amy
behdahbs Purplepower
Posted
Hi,
My name is bee and I'm 21 years old from Canada.
I'm surprised I found this forum just now, I didn't think there were a lot of preemie babies that went through a surgery like I did or have scars like mine.
I was born about 3 1/2 to 4 months early,hardly weighing one pound, even a month or so after I was born I only weighed 2 pounds. As far as I know they took out a large amount of my intestine because it had been rotting (that's what they called it) but my parents refuse to tell me all the details of it or they just don't remember specifics. After the surgery and everything I was diagnosed with I was kept in the hospital for 6/7 months. So I was 9/10 months when I was able to go home which definitely halted quite a few things, my crawling and walking wasnt caught onto until much later and because of all the blood taken and low weight I was constantly monitored. I also have two small additional scars apart from the main one else across my stomach, two small white incision like scars for tunes, one on the lower part of my neck and another one on the inside of my left breast, they're still noticeable if I'm looking in the mirror but no one can really tell unless they really look. As far as I know that was it for my surgeries and hospital visits however.
It's been a while now since I realized I've been having strange symptoms and I've gone over a lot of the ones that others have mentioned and I'm somewhat shocked to learn that a lot of them could be from the surgery, I used to just think it was normal to sometimes have loose stools or any of the many symptoms mentioned.
As for me I've always had problems with anemia, low weight,unable to gain weight, diet (lactose intolerance as well as other issues now that I think about it) as well as fainting spells and scar tissue burning. My scar on my stomach specifically goes right through the middle of my stomach through my belly button (I basically don't have one) and it curves a bit upwards. I've always thought of surgery for it and I've wondered if it could be affected if I were to ever get pregnant. My scar also has a tendency to burn whenever I either eat too much or exercise and stretch too much, I've been to doctors but they say there's nothing they can do about it.
If anyone has any insight towards dealing with scars that would be greatly appreciated.
Thank you very much for starting this discussion!!
Ashley9210 behdahbs
Posted
Hi behdahbs! I'm so sorry you've been going through all this but it's nice to meet someone going through what I am. I had NEC as an infant and had part of the small and large intestine removed. I've had terrible side effects for as long as i can remember ranging from frequent stomach aches, to consistent diarrhea, embarrassing ugly scars and inability to gain weight. If love to chat with you more if you're willing! Please message if you are, this is a comfort.
mary08546 Purplepower
Posted
Hello! I had NEC as a premature baby- was 3 months early. Have you had a colonoscopy done?? I'm nervous not to get it done just that it won't be able to get done
Purplepower mary08546
Posted
Hi Mary,
I recently had a colonoscopy, it was ok, obviously not the most comfortable of things but they were able to do it no problem. I believe they went as high as the scar tissue where the join is in my intestines.
I hope that helps
j33032 mary08546
Posted
sheena24290 Purplepower
Posted
Hello,
My name is Sheena, I am 31, I was born full term and healthy...I was 5 days old when I developed NEC for no known reason...I underwent surgery for the removal of the large intestine and placement of a colostomy bag and then after a year they removed the bag and connected the ileum to the rectum...doctor told my mother I would live a normal healthy life....what a lie!
For 31 years now I have suffered severe weight loss,loss of appetite, dehydration, watery stools,ulcers,stomach problems pain leg cramps you name I got it...I am now barely 100 pounds and struggling with severe fatigue and still all the above...not many options for us
but I'm glad to see I ain't alone with this devilish disease!
Ashley9210 sheena24290
Posted
I'm so sorry you are dealing with long-term effects! But at the same time I'm thankful to find other individuals going through the same thing I am. I was NEC as an infant, had part of my large and small intestine removed and have dealt with effects ever since I can remember. I also wonder if it could contribute to the inability to gain weight. I've never been over 100 pounds, only 120 when pregnant then straight back to 83 lbs after. If love to talk with you more if you're open and interested!