1. Community
  2. Pregnancy and newborn
  3. Pregnancy and Genetic Disorders

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

Posted , 50 users are following.

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

Prev
  • kim92887
    kim92887 Purplepower

    Posted

    Hi my names Kim and im almost 19 years old I was born 6 weeks premature i had to have 4 operations before I was 4 weeks old and I had spent 5 months in the nicu growing up with this scar on my atom stomach has been hard for me i was bullied a lot because of it i always felt alone with having this as my twin didn't get it and not alot of people understood i dont gain weight as i have always been under 8 stone i hope to one day have kids but my mum always thinks that i will have complications so that always scars me thinking that one day if I have a baby it could end up with having NEC

    • Purplepower
      Purplepower kim92887

      Posted

      Hi Kim,

      Lovely to hear from you 😊 I know how you feel with your scars, I unfortunately have two - one going straight across my stomach just above my belly button and a smaller messy one on my lower right hand side of my stomach. I have always been self conscious about them as people do stare, I think it’s just curiosity as they don’t understand. It has taken me until now (I’m almost 32) to be able to have the confidence to wear a bikini, people stare but at the end of the day we are alive because of our scars 😊

      As far as children, there’s a few people on here that have children and I believe all is fine, I too and expecting my first child and have been told that my scars shouldn’t pose any problem - unless I need a C section in which case scar tissue could be, but nothing that wouldn’t be manageable 😊 I hope that puts your mind at ease. 

      Keep in touch and keep your chin up xx

  • samson_89351
    samson_89351 Purplepower

    Posted

    Im 31 and have NEC the best way to cope with it is to not eat spicy food, also when you have pain dont take Ibrofen as it will cause swelling of the stomach. Keep extra underwear etc. If you have any more questions feel free to ask.
    • Purplepower
      Purplepower samson_89351

      Posted

      Hi Samson, nice to hear from you. One thing I was prescribed for stomach pain and cramps was Buscopan, which on the whole seems to help although not all of the time. It’s amazing to see how many responses have come through from my original post almost 6 years ago now! 

      When did you have NEC? Was it as a new born or adult? Hope you’re keeping well and thank you for joining the conversation 😊

    • Greenbay12
      Greenbay12 Purplepower

      Posted

      Hi there, 

         I also have constant diarrhea and pain. I will also feel really sick sometimes as if my stomach feels infected. Do you ever have this feeling?

  • taderricka64472
    taderricka64472 Purplepower

    Posted

    Hi, My name is Taderricka I'm 26 now I was also born with a hole in my intestines as well and I've been dealing with abdominal almost every single day. It started when I was in highschool I had a lump on the side of my stomach where my scar is. I went to a gastroenterologist because it's been 8 years dealing with this pain everyday and my stomach growls every time I eat even when I don't eat it does the same thing. I got Colonoscopy to remove scar tissue that different really help anything I hardly have to use the restroom I mostly just urinate. I'm always in stomach pain for weeks a day or two after sex and I don't think I can have kids and I never gain weight it's just stressful and annoying. I'm just now finding out what kind of surgery I did have just by being on this site.

  • paul50607
    paul50607 Purplepower

    Posted

    hi i live in the UK  i was born in 1970 and developed NEC after having blood transfusions for Rhesus incompatability when they operated they found to much pre- gangrene near my ilium to do a resection so they just sewed me back up and hoped for the best ,47 yrs later im still here even though the docs gave me less than 6 months to live . luckily ive had no problems with my bowel since ,i eat what i want but do drink way to much coffee and get an itchy scar every now and then .on facebook there are some brilliant NEC PAGES FOR BABIE OR ADULT . one page for the uk and one for the USA .
  • Sean1996
    Sean1996 Purplepower

    Posted

    Hello purple power I was born with NEC too and I'm 21 and I live in the UK if u want to email me then my email is

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Purplepower
      Purplepower Sean1996

      Posted

      Hi, thank you for your comment. Unfortunately the moderators have removed your email address. Where abouts in the UK do you live? 

      Hope you’re well 😊

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.