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

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

 

I am so excited to see a group dedicated to this. I was born in 1979. My birth weight was 3lbs. I was 8 weeks early, and was a twin. I also suffer, and have always suffered from chronic diarreha. I had half of small and large intestine removed. I was diagnosed with short gut as well. I was also curious if this puts us at an increased risk for Chron's or anything similar.

Hi everybody,

I realise I started this discussion a while ago and have not since responded to it - disgraceful on my part!

It is so great to see so many people discussing our condition and how best to manage our symptoms etc. It's also extremely interesting to see that although it is a very rare condition (or was when I was born in 1986 apparently) that so many others are out there.

All of the different advice is great - even some doctors don't even know what to recommend so that's great that we can help each other

I'm always tired so I thought I'd try out the coconut water recommendation see how I get in with that

I also meant to ask, does anybody else have trouble in the sun / heat? Do you find that this seems to exacerbate things?

Thanks again for all your comments,

Kind regards,

Amy

Hi Guys 

My name is wayne and live in wiltshire uk, I was diagnosed with Nec when i was born in 1978 and was considered a miracle i survived at one point being given my last rights, Unfortunatly thats all i know all the records to say if i had any surgery ect have been destroyed due to the hospital closing a long time ago leaving me with small snippets of info on what happened,i dont know if i have short intestines or have had part of my bowls removed as all you other guys do,So for 37 years i have been shooting in the dark with local gps not even recognising what i had or still have,all i know is i had  always been a sicky child stomach bugs ect i just thought it was a nervous thing, Ive been through quite alot losing a child at 4 days old as she was very ill, preassures at home with kids family ect and always dealt with it fairly well, untill about a year and a half ago when i had some sort of stomach breakdown or something shivering,diareah, not feeling right in my mind and ever since then ive not been to the toilet properly maybe 2 weeks of normal toilet i changed jobs as i thought i had had a nervous breakdown,My weight or the lack of it has always been an issue for me and its really conforting to know others suffers this problem too, My brother in law is a jockey and says i would make a good jockey as i keep the weight off but i want to put weight on i shiver in the winter and still in the summer cant sit in the sun long ect ect, So my questions are 

1. How i know that anything has been changed to my internals?

2. is there any information on long term effects in adults with nec ?

3. any tips on how to gain weight i find there is a cut of to my weight usually 10/1/2 stone before i start losing again.?

4. i now take rpobiotics and aloe vera daily and have found this works in controlling the stomach pains in the mornings and fibregel 1 daily to bulk up my stools this is soluble fibre which may make me loose weight too 

5. I was prescribed 40mg omeprozole and domperidon 20mg daily for 4 years is there any evidence that this could of made my condition worse.

im truley greatful i have found you guys and any help would be great thanks take care all.(sorry for any spelling or grammer i dont usually write as much as this lol)

Hi everyone. I have a 14 yr old who was born at 30 weeks. 3 days in he got NEC. He spent two weeks in intensive care but never went through an operation and hasn't had any bowel or intestine taken away. Do you think he could still have problems though. He suffers with stomach pains n goes through bouts of very loose bowls. He doesn't suffer with weight loss, if anything the opposite, although he is going through a growth spurt so weight is begging to drop off. Any thoughts would be very kind. X

Hi my name is Clara, I'm 22 years old, and I was born at 25 weeks. I had necrotizing enterocolitis but if any surgery was done it wasn't major or else I'm sure I would know that answer for sure. It's so hard to find any information on lasting effects for nec. For me personally I've always had digestive issues but doctors aren't really sure what's going on exactly. In recent years is when the diarrhea started to be a big issue for me along with some other symptoms. I've been on omeprazole and also took cholestyramine but nothing was really helping. I've had a colonoscopy but what they thought was colitis ended up not yeilding any kind of solid (insert stool pun) results. I'm having a lot of thyroid issues and doctors think I've got an autoimmune disorder on top of everything else because I have issues with what they think is psoriatic arthritis and getting infections easily (I know I sound 100 years old) but we haven't found anything yet that explains everything I'm going through, not for lack of trying/testing. I'm actually not able to lose weight, like at all, but that's the thyroid mostly. Whether my issues are related to nec or not, it's just nice to find a page that is actually talking about this topic in general. I'm just wondering if maybe some of my digestive issues are actually linked to nec. I just feel like no matter how minute or severe everyone's situations were, it's still a big deal and is definitely affecting all of us.

Hi, I was looking for information on necrotizing enterocolitis in newborns. my daughters was born at 33 weeks premeture and at 2 weeks she had an bad infection and had to get in operation on her bowels where she has already gotten about half of her short bowels taken out. she is still undergoing the prosedure as they have her stomach open with the vak tub hooked up to her and they dont want to do another surgery as she has already has 3 surgurys. can anyone help me as what is to come and what long term problems my daughter might have in the future???? please help!!