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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

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  • Cleigh2012
    Cleigh2012

    Posted

    Hi my name is christy Reynolds and I am 32. 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. Just curious if you have this issue as well. I am so tired of people saying that I'm so lucky to be able to not gain weight, but I never know if what I eat will send me straight to the bathroom! And my addiction to nutella... Anyway, wil be praying about your issue- I totally understand.

    Sincerely,

    Christy from San Antonio, tx

    • Denise59370
      Denise59370 Cleigh2012

      Posted

      Did you have any complications during pregnancy or have any conceiving issues. Questions I have as I also suffered from NEC. No kids yet one miscarriage and one tubular preg
    • annemarie55044
      annemarie55044 Denise59370

      Posted

      Hi Denise my name is Annemarie I've suffer with NEC and was born ten weeks prem I went under lot of ops to remove small intestines and some large I am now 28 I have two beautiful girls but now am suffering from IBS and now overgrowth in baterica sibo but am currently undergoing investigation as from having my second daughter I've been fighting with siob I Carrie red normal had normal develiver s hope this give u hope xxx

  • Purplepower
    Purplepower

    Posted

    Hi Christy, it is lovely to find somebody with the same problems as me, I was beginning to think I was on my own! I lost almost all of my small intestine, so, like you I also really struggle to gain weight and to keep it on. However, I requested to go to a dietitian, and have since been having some luck with gaining weight using drinks called Enshake (it's a drink like a milkshake)

    It is not so much the going to bathroom more than other people, as I am not sure I do really, it is the kind of 'bathroom' movements I have to cope with that is more embarrassing that anything else. Do you find this?

    I am glad to hear that you have a had a baby, congratulations smile I was worried that because of where my scar is it would not be possible.

    Thankfully I am not a fan of nutella :p but I do love curries!

    I was also prescribed Codine Phosphate as a remedy to the toilet issue - maybe this is something you could inquire about? I am not sure how good, or safe etc it is, but it may be an option smile

    Thank you for replying to my post, take care and look after yourself smile

    Hopefully hear from you again soon.

  • bonez1989
    bonez1989

    Posted

    i was born 13 weeks prem and developed NEC, i had a serious case where it affect both small and large intestines aswell as the valve that conects the two, i am now 24 and still suffering the side affects i was diganosed not long after surgery with Short Bowel Syndrome..

    After reading your stories i have a become over whelmed that i am not alone and the only one having to go through this..

    I live in Australia where this condition is rare and not many understand it, let alone the diet i have to stick to

    i am on a low protien no sugar and no fibre diet and i cant take any medications to help me through any problems.

    i am Hoping that i can meet or even talk to people with similar condition or same condition as i have.

    • Purplepower
      Purplepower bonez1989

      Posted

      Hi Bonez1989,

      Nice to 'meet' you smile

      That sounds awful, as I stated previously I only had about 3/4 of my intestine removed, but do suffer a lot of side effects due to this. I can only imagine what it must be like to also have to stick to a strict diet - admittidely I am also supposed to stick to some form of diet, but it is so difficult as I also loose weight very easily!

      Have you seen any specialists at all? The only medications I have been told to take are anti diarrhea pills, but they don't always work, and sometimes cause more problems!

      It would be lovely to meet more people with the same problems, I know one lady with the same issue, but it does not appear as harsh.

      Hope you are well, other than the obvious smile x

    • sam70248
      sam70248 Purplepower

      Posted

      Hi 1purplepower

      Nice to meet you smile

      Firstly i would like to say thank you replying to me... it means so much to finally meet someone that has same condition as me... honestly u are the frist person i have spoken to that has dealt with this condition from birth...

      I do see gastroenterology doctors as this year alone my condition has gotten worse.. i was taking anti dirrorah medication but agree with it doesnt work that well... i also have to have regular B12 shots and extra salt as i have a definacy in both... wieght has always been a problem as well ( only perk to being tiny is cheaper clothes lol )  the only thing that i have noticed that does help to retain some wieght is a ensure supplement drink and having 6 to 8 small meals a day..

      Like i said before u are the forst person i have meet with this condition but i would love to meet many more just so we can share our stories and help other people or parents with child that are born woth this comdition... ( as it is rare and generally unheard of )

      If u would like to contact me thru email u r more that welcome to

      Hope u are doing good and everything is as well as ot can be smile x

      Emis Moderator comment: I have removed the email address as we do not publish these. Posting your email address on an open forum can result in spammers getting it. If it is still required by other users please use the Private Message service to exchange these details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages ;

    • Purplepower
      Purplepower sam70248

      Posted

      Hiya smile 

      Good to hear from you again!

      Just a quick reply as I'm at work (hehe naughty) 

      I am doing well, or as you say, as well as possible. 

      I have given up on pills, they either don't help or cause other problems. 

      I have recently been in touch with a lady who had her colon removed and she too suffers really badly. 

      I used to have those drinks, they worked well but thankfully I am able to keep my weight ok as long as I never skip a meal!! 

      I hope you are well and keep in touch smile 

    • sam70248
      sam70248 Purplepower

      Posted

      Hiya 

      I am doing well some what, just trying to improve each day

      ( one day it ends up improving some what lol )

      For some reason I can't eat much now cause I am always full.. And I find my self thirsty more than I should b..

      I don't take ensure anymore as it did help in the beginning but doesn't now 

      I have to have regular doctor and Hostipal appointments for now until they find out a weigh of controlling it all as I have gotten worse in the last couple of months it's at the point I can't work ( which I do miss)  and I generally spend most of my time at home.

      Hope u r well and I will defiantly keep in touch 

  • steve94397
    steve94397 Purplepower

    Posted

    Hi after reading ur story I felt good to know that not only am I the only one but I thought I wud share mine

    I was born 13 weeks premature and had NEC and had to have 1/2 my bowel removed and the rest of it has tears in it, I'm now 24 years old and am constantly going to the toilet 10 minutes after eating a small meal. Can't seem to get any nutrients from the food which I'm eating and feeling tired and weak all the team as well as not been able to put on weight..I have noticed blood in my bowel movements but doctors can't seem to tell me anything

    And was wondering if u had any advice or does it get worse as u get older 

     Sorry my names Stephen and I reside in Scotland 

    Hope to hear from u and hope ur well

  • angela57257
    angela57257 Purplepower

    Posted

    Hi, thank you for your post, I have a 4 year old son who has suffered in the worst way with NEC, he had 4 operations, was left with 12cm of small intestine, which grew to over 100cms after his 3rd operation, and had most of his valve removed, along with disease of the large intestine also.  He was born at 24 weeks, it took over 6 months of hospitalization before I could bring him home.  I remember the doctor who delivered him telling me "this was just the beginning", and he was so right. 

    My son suffers with loose bowel movements, in the medcal world it is described as a 7 (the loosest kind of stool), he does not have allergies but has intollerances such as sugar, all dairy, and gluten.  As a result I give him cold pressed home made juice every day for maximum nutrition absorbtion, I do this as I was told that fruit and veg will have an effect on his stools due to the fibre, removing the fibre allows for maximum absorbtion, he is a thriving stocky little boy, truly a miracle, I believe that if anyone is having nutrition absorbtion problems take a leaf from our experience and juice the nutrients yourself, forget pills and potions, they never worked for him, he looked pale and sickly, now he is happy, healthy and you would never know hed been ill despite the loose stools he still has.  I hope this is of help

  • nfom16
    nfom16 Purplepower

    Posted

    Hi i have never come across anybody who has children who have had NEC let alone adults who have previously had it.

    My daughter is 3 was born at 28 weeks & had to have 12cms removed, she had a stoma and after a few months it was reversed she recovered and not had problems until now!

    For weeks she has been having really loose stools at first we thought it was down to her ear infection, but it's been almost a month now We thought it was a milk intolerance so removed all dairy with no success. So finding this thread is helpful Thank you.

    Any dietary advice will be really helpful as I've found suggestions on removing protein, fibre , dairy but what would that leave her to eat??

    Please help !! She also has cp so is immobile and just started nursery.

    • zoe781
      zoe781 nfom16

      Posted

      hi ya, my son is now 10, he was born early with the same condition,he has 88% bowel removed plus all his colon was removed as well.the last 10 years he has basically been on the loo!

      He had a mini button fitted at the age of 3 for tube feeding as he was and still doesnt gain any weight. On the 3rd july he is gonna have a hickman line fitted as the hospital are very conserned about his progress 

  • matty098
    matty098 Purplepower

    Posted

    Hey there Purplepower.

    My name is Matt. Im a 30 year old from Vic Australia. I was born 12 weeks prem and developed NEC. I lost half my large and small intestines and have never had a solid stool.

    Its so amazing to find out there are more people out there like myself. I would love to talk more about any issues any of you may have been having.

    I recently had to install a hose to our toilet due to how irritated my bum has been getting due to all the wiping i have to do.

    I have also struggled to put on any weight. With muscle being the only exception.

    So i have spent a lot of time in the gym. I also have noticed the last couple of years i seem to be dehydrated and lethargic a lot of the time.

    Was wondering if anyone else had these issues?

    • Cleigh2012
      Cleigh2012 matty098

      Posted

      Hi- my name is Christy and I had nec back in 1979 when my chances for survival were slim. I struggle to gain weight but since having kids, it has helped. I had a hard time carrying them because I couldn't handle that much weight, but I do struggle with fainting from not eating because I don't take care of myself as I should. I have 1/2 of my small intestines and I go to the bathroom more than most people. I have learned to live with that issue. Do you know if certain foods don't get absorbed for you? I know if I eat steak it goes right through me. What kind of foods do you eat that seem to stay put and get absorbed?
    • sabermantoo
      sabermantoo Cleigh2012

      Posted

      Hi Christy:

      When I was very young (I'm a few years older than you), I was constantly going for tests and was told that wheat/gluten and fat did not absorb well. Everyone is different, of course, but you might find that your body can handle leaner meats and rice based starch - like brown rice pasta.

      I hope that helps.

      Best,

      Shari

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