Hungry? Hypoglycemic? Hope this helps.

Hi, I have nesidioblastosis too and just had my distal pancreatectomy on 01/29/08. I had the complication of getting a staph infection inside my body at the surgery site and now almost 4 weeks later and I sit here with a JP drain hanging out. I will be on antibiotics long term but hopefully get this drain out this week! My sugars have been running great thus far with the normal fasting now being in the 90s. I have seen it in the 70s a couple of times but my Endocrinologist feels I am ok as long as I don't go back into the 60s. He stated people with this condition have little Herculean islet cells the are strong and know what they are doing. Thus, they may keep up a charade for a while then go into over production again. If this happens, my 80% pancreas removal will turn into a 95% removal. He had mentioned originally about reversing my gastric bypass to make me gain back all my weight and thus making me insulin resistant again. But that just covers the problem. I had mentioned in my profile that when I had the stimulation test done, the doctor doing it stated there are only 1000 documented cases of this nationwide. It is difficult as most docs don't have a clue what the condition is. Hope all turns out well for you and don't worry, my stimulation test did NOT hurt at all either. I just felt like a 70 year old trying to stand up after laying for the 6 hours. Take care.

I hope you will tell your endo doc that there are a bunch of us out there that need long term follow-up!   I think we all need to put our experiences in a book.....we could help others with this who are struggling alone.... AS for my case, I chose not to do the medications because of the side effects including weight gain....since my surgery in December, I still am up 25 pounds and can't lose an ounce.... I did start walking on my treadmill, but was still too sore to continue. I hope your infection clears up soon and you can get back to health.   please keep in touch.

I never imagine that so many people have nesidioblastosis..

I make a lot of research about GLP-1 Wich give you the neogenesis of the b-cell in your pancrea..

for now.. what I know.. is.. if you still have your small pouch and you still have little dumping and fast emptying.. you will be ok for the regeneration of your b-cell..

the problem.. if that can be a problem it's the other part of your body that can affect.. brain liver renal etc...

GLP-1 is what give you the nesidioblastosis.

they suggest to do the 2/3 pancreatectomy on me too

here in canada we are take as fool when we speak about our hypoglycemia trouble... they talk to us about "late dumping" and stupid things like that...

awfull...

thanks mario for sharing the links :)

I know... that take's to me 7 years to be investigate,