NIPHS - Noninsulinoma Pancreatogenous hypoglycemia syndrome
I am reading this, even though an older posts, crying to hear people dealing with the same. I am over two years post RNY and at exactly one year after the surgery, my life became hell. I had a lot of earlier problems (2 closed stomas), ulcers, anemia requiring infusion and iron infusion. Then I really became sick. This has destroyed my life and functioning. I never feel well; exhausted, dizzy, tired. I can't eat anything without the "crash" and have been good with the diet given to me. I snack on fruit/nuts, cliff bars when I am getting sick. I have had seizures, passed out, do not remember some of the episodes when it got bad. Some of the Physicians I have seen thought I was nuts. Trying to convince them that I had the surgery to gain energy and a life did little. I now have an endocrinogist who is good, but really hates RNY and tells me every chance he can. He gave me Acarbose that really didn't help at all, he then progressed me to Proglycem (extremely expensive). He says it is "old school"... this too was not working and he upped the dose. I told him I was gaining 1-2 pounds a day on it and he told me to "get on a treadmill." I still had crashing issues with this as well. He mentioned to me once taking part of my pancreas and I thought he was nuts....NOW I would do anything to make this stop and have my life back. My Cardiologist told me to just reverse the surgery. I called Mayo Clinic today to get some help and my Husband wants to take me in the next month or so. Any info is greatly appreciated. You would think being an RN I would know about this ...but they are sure not spouting this before surgery to anyone I know. :(
I am so sorry to hear you are struggling. It really sounds like you need to see an endocronologist who is familiar with RNY. I would not depend on the diet they have given you. I had to go even further. I found the acarbose to help some, but found that I was still crashing so this year for lent I gave up bread and white potatoes. This has made an incredible difference. I never thought I could do it, but here I am... I have not had any sense. I have some exceptions for the bread - I can still have very thin crust pizza and burrito shells. I still have crashes, but I know the signs and act accordingly. The surgery was definitely a life change and I WOULD do it again.
I had been told about removing half of the pancreas, but the endocronologist explained why that would be beneficial. I have not yet had to have it done. I am trying my best to make note of which foods cause the worst reactions and steer clear.
Please keep me posted on your progress and what steps you decide to take. I wish you the best and hope it gets better for you real soon.
