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

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Purplepower
Purplepower

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 smile and is living with it...happily!

6 likes, 87 replies

87 Replies

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  • jimh299
    jimh299 Purplepower

    Posted

    I had nec at 16 months old and family was told I likely would not live,emergency bowel surgery with hemicollectomy on large colon,not sure whats left of small intestions.Anyway I have lots of pain,diahrera,lethargic,thirsty all the time,stomach noises.I actually have problems losing weight and seem to retain water.The only advice I was given by a colon doctor was to carry a bottle of water with me everywhere I go,and try to take a powder called cholestyramine which I couldnt tolerate due to severe constipation it caused me.It is good to know that there are others like me, as I have lived my life for over 47 years now and I only found out I had nec at age 35, because of no records keeping and my upset family really didnt understand fully at the time and were glad I just survived.
  • Hooleydooley
    Hooleydooley Purplepower

    Posted

    Hi,

    My son was born at 23 weeks 10 years ago. He had NEC and had 4cm of his bowel removed. On and off over the last year he has had stomach pain. We had an xray done that suggested he was constipated and told to give him Movicol (laxative) every day for 3 months which we did. It slowly got better so we stopped the Movicol, but has now returned. The GP has now prescribed Flagyl antibiotics in case he has some sort of bacteria and we have an ultrasound scheduled for next week. He sometimes has runny poos and often smells terrible when he farts! He is also very lean, although he eats well. I came across this site in my investigations. I was thinking that he may have scar tissue or adhesions from his surgery that moght be causing the pain. There is something called Adhesion Related Disorder...has anyone on here been diagnosed with that due to the NEC operation?

    • gemmatozer
      gemmatozer Hooleydooley

      Posted

      yeah i had same problem had half my bowl taken a way so now have scars on my stomach but woundering if any one been throught same problem but still been able to have a baby as me and my husband are trying for one dunno if it would affect it or not as in would it take longer to conciev
    • jenleigh
      jenleigh Hooleydooley

      Posted

      Hello, I was born in 1983 at 31 weeks as well. I had surgery for NEC and a colostomy that was reversed. The complications that I have had are from the adhesions. They caused pain in my pelvic and abdominal area to the point of exploratory surgery when I was in middle school. When I was 24, I began having the same pain which resulted in an ultrasound and CT scan, showing masses on my ovaries. I had another exploratory surgery and they removed my ovaries and fallopian tubes. I still have faint pain almost 10 years after that surgery, almost like something is catching on something. Hope this helps!
  • gemmatozer
    gemmatozer Purplepower

    Posted

    hiya yeah i had half my bowl taken a way as well when i was younger as had the same thing they took the bit a way that contains water i think and me my hubby are trying for a baby was just woundering if it would affect it as to if it would take longer to concive
    • atikin09
      atikin09 gemmatozer

      Posted

      Hello. I'm 26 years old. I was born prematurely at 26 weeks gestation. I am currently a mother by 2 pregnancies ending in 2 vaginal deliveries. In each pregnancy, as my uterus grew my abdomen expanded and this irritated my scar. I have not suffered any infertility issues but I have read that some people do suffer from infertility as a result of NEC.

    • hadas3028
      hadas3028 atikin09

      Posted

      Hi,

      Nice to hear it 

      I would like to get your e-mail to talk in private .

      Thank you !

  • atikin09
    atikin09 Purplepower

    Posted

    Hello. I'm 26 years old. I was born prematurely in 1991 at 26 weeks gestation. I am so grateful to have come across this thread and know I'm not alone.

  • Starkers1107
    Starkers1107 Purplepower

    Posted

    Hello, not sure if anyone is still around but thought i would give it a shot?

    I was 17 when i lost all my large bowel from Ulcerative colitis leaving me with a stoma bag, then in 2005 at 25 i became one of the apoarently rare amount of adults to suffer with necrotizing enterocolitis causing me to lose alot of small bowel, leaving me with 110cm, now i have coped pretty well with the lack of bowel up until now, i keep needing potassium supplements and have just got home after 10 hours in hospital on a potassium IV, every 2 weeks my potassium is dropping, any suggestions? At this rate i will lose my job!

    Thank you all.

  • paul50607
    paul50607 Purplepower

    Posted

    hi i would like to tell my story of having NEC  . i was born in burnley lancashire uk and  full term in 1970 with RHESUS INCOMPATABILITY , and after 2 blood transfusions i developed NEC and rushed to manchester for urgent specialist neo -natal surgery on my bowel. i have recently seen my doctors records as i needed to know what the did during surgery as i have a 6 inch scar across my stomach ,, and found out they did nothing lol as there was to much pre- gangrene to be able to resect my bowel so they just closed me back up gave me anti biotics and hoped for the best . i was given my last rights at the first hospital. i am now 47 and have had no problems ever since but i do have sympathy for those of you who are suffering years later . i also wonder what state my bowel is in and whether im on borrowed time before something does go wrong . i know its rare to get NEC as a full term baby and dont know how many of us there are in britain . i read in various studies that the number of prem babies getting NEC is going up as more prem babies are surviving .
  • kayla27
    kayla27 Purplepower

    Posted

    Hi! My name is Kayla and I gave birth to my daughter Kinsley 2/13/17 at 34 weeks she was born with gastroschisis which is a birth defect of the abdominal (belly) wall. The baby's intestines stick outside of the baby's body, through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also stick outside of the baby's body. Immediately after having her the surgeon was able to put all her intestines back inside her and he made a stoma that he planned to close at 12 months old. While in the hospital she got NEC at 9 weeks. Today is 5/917 yesterday she had her Ostomy closure surgery. He took out her ascending and part of her transverse colon. I'm curious what to expect in my baby now and in the future stool wise and eating habits to health concerns. I will do anything to make life easier. Please if you have any comments or answers or relateable stories share them with me. Thank you!

    • JAlisse
      JAlisse kayla27

      Posted

      I am so glad to hear your little one is doing well. My best advice is just roll with whatever comes your way. Like the forum posts everyone experiences NEC differently.

      Unfortunately it is not a disease with a plan. It is more like an autoimmune disease where anything is technically possible. I experienced more childhood illnesses then most kids like colds, and glue. Which is somewhat common with premies.

      And the only other advice I can offer is don't hold your little one to standards people set because she was early, born with serious illness, etc. My mom heard it all, and when I hit about three she decided she wasn't going to be another voice telling me all the things I "couldn't" do.

      Wishing your little a speedy recovery and strength for you and your family.

    • carol12902
      carol12902 kayla27

      Posted

      Hi I had my son in 2006 he was born with gastrocisis his was quite bad he had 98percent on the outside he had them inserted by a silo over a week he was in intensive care for nearly twelve weeks he contracted NEC when he was three weeks old and was very poorly but he got through it we have had lots of hospital appointments over the last ten years he has always had troubles going to the toilet as he suffers really bàd with constipation he has taken medication but this seems to make him have extreme diarrhea there doesn't seem to be an in-between it's always been one or the other my son has had a lot of time off during his first years at school but now the school is very understanding of his condition he has always suffered with stomach pains due to this and certain foods can really upset his digestive system chocolate seems to make his bowels work better which we picked up on a few years ago so I've always let him eat as much as he wants but we avoid greasy foods and bread as this doesn't agree with him besides this the only other problems that we are encountering now are that he gets really out of breath very easily and sweats quite bad even after short exercise the doctor's are keeping a check on him he has maintained a good steady weight and has caught up on height with his classmates as he's always been small I hope this has been a bit of encouragement for you especially as you are just starting the journey with your baby it can be quite difficult at times and I wish you and your baby all the best.

    • kayla27
      kayla27 carol12902

      Posted

      Thank you for commenting about your son. It's hard to find people who can relate to my daughter. 

    • kayla27
      kayla27 carol12902

      Posted

      As of now she's 7 months and everything seems quite normal. Her stool is loose. Liquid. She is breastfed. Sometimes smells awful. There's been twice she has woke while napping screaming and crying when I pick her open realize she's passing gas I don't know if that's normal she is my first. 

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