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

Pregnancy
1

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!

2

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

3

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.

4

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.

5

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

6

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 ;

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My old user name was bonez1989

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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 

9

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 

10

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

11

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

12

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.

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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?

14

Hi. 

My name is Shari. I was born nine weeks early and had necro entero colitis that resulted in having most of my large intestine removed. I am lucky that I don't have a bag.

Anyway, when I was younger I suffered many of the things listed here - not able to keep weight on, having to drink ensure, etc.

I'm over 40 now. For better or for worse, weight is not an issue.

But lately I have had an issue with being dehydrated. And whenever I get sick, i get a heat rash. I understand (from a nurse practitioner) that heat rashes can be caused by heat or from being dehydrated. I've also been getting leg cramps more often than usual (also can be caused by dehydration) and as someone recently posted, I can feel physically lethargic at times when there is no reason to feel that way. Again I think this goes back to the dehydration issue. Also recently I had a mild UTI (never had one in my life) - those too can be cause by...dehyrdation. 

I'm not sure what to do about it, but I am so glad to find this group. According to my parents (who may be exaggerating), I was the ninth baby to survive this surgery at the hospital where I had it. It's been a lonely road as my parents wanted to protect me from being a guinea pig so I was never in any study groups, etc.

Anyway, if anyone has figured out the key to staying hydrated, let me know.

And yes, I drink mostly water. :-)

I'm going to try drinking coconut water as I believe this helps with dehydration, electrolyte imbalances, etc.

I'll keep you posted on how that plan goes. No one seems to have an answer though all medical people are sympathetic. 

I see many people here are a good decade younger than me. I'm no medical expert...but I might have some insight from the patient side or at the very least complete empathy for you.

I purposely vote agains the anti-diahrea pills. They don't really do anything and quite frankly long term - that stuff is not good for you in other ways. (Again, not a doctor...just my own humble opinion here)

For diahrea and weight issues:

I stopped eating any gluten. I have to say that did wonders for keeping weight on - and I am not celiac. This is all the digestion thing. I stopped two decades ago and really have been feeling much better. Just an FYI that it takes about 3 months to get that stuff out of your system so it's not an overnight remedy.

Avoid food coloring, avoid too much caffeine (coffee makes everyone go to the bathroom, but for us it's worse - I do drink coffee but carefully planned...), avoid a lot of sugar (I see someone here already posted they don't eat sugar - good for you! I haven't completely cut it out - but that inspires me to do so) 

I still find that I am constantly hungry like I am craving something but I can never put my finger on it. Anyone else have that? My guess is it is related to not having enough hydration as it has been happening more lately.

Best,

Shari

 

15

Cranberry Juice. Also foods that holds water like. Cabbages

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thanks Denise.

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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?

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Hi Shari!

I too suffered from nec as an infant in 1979 so I hada rough"Guinea pig" experience, especially for the doctors. I eat just about anything but I'm addicted to caffeine so I know that needs to let up... I am curious about the Gluten free option. I tried p90 cider and that was a hard one to digest- literally. I also had to drink ensure to gain weight. I will try to cut out more sugar though. I don't drink enough water but I have suffered from painful constipation, and with my condition, I've ended up in the emergency room for it. I was born 7.5 weeks early, but I'm still here in my mid-30's. Any advice would be helpful

19

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

20

Hi Christy:

Just saw this...replied to your previous comment. Yeah - I love caffeine too. My advice is treat it like some people treat alcohol - for every cup of coffee you drink, have a glass of water so that you stay hydrated. :-)

The thing with the gluten free option is that you have to give it a few months to clear out of your system. It did really help me. Also, as mentioned in the post I wrote earlier, avoiding fatty foods and eating leaner meat will help keep you absorb more things your body needs as it will slow down how quickly it all goes through your system. At least that's my theory. :-)

I should (and really have to get better about) take vitamin B complex. This is a vitamin your body may not be getting enough of due to the surgery. Some people need shots (depends what part of your intestines they removed) but I find if I (remember and) take high doses of vitamin B enough gets absorbed.

Keep me posted as to how things go. You're going to live until your 95 at least. :-)

Best,

Shari