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.
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