Hyperinsulinism with Nesidioblastosis

Oct 30, 2009

In April 2009 I began having blood sugar attacks, and after an endoscopy, a barium swallow, and a blood sugar test with an endocrinologist they discovered that I had severe hypoglycemia. After eating, my blood sugars would drop to the 30s. It eventually got to the point where I was passing out.
In September 2009 I decided to travel the 3 hours south to NYU for a second opinion. The diagnosis, post-gastric bypass hyperinsulinism with nesidioblastosis. Something in my pancreas is screwing up my sugars. So, apparently this is a rare complication, but it is becoming more more emergent. My dr at NYU did some research and decided, based on a study done in Switzerland, to attempt to put a band on my gastric bypass. That study "Severe Recurrent Hypoglycemia after Gastric Bypass Surgery" was posted in Obesity Surgery (2008) 18:981-988, for those who may be facing similar problems.
My gastric band surgery is scheduled for November 9th, 2009. I am absolutely thrilled with Dr. Fielding. I wish I had made the effort to come to NYU right from the beginning.
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Complications, Hospital Stay, & TPN

Oct 26, 2008

I spent most of September and October vomiting, and was getting nowhere. The diagnosis is still unknown, but they say they found some "contributing factors."

I saw my nutritionist on Oct 14th, and she was stumped as to what was going on with me. Daily vomitting, severe nausea, numbness in my face, hiccups constantly. At that point I was feeling so sick, exhausted, and dehydrated that I had a feeling they'd stick me back in the hospital, again! She spoke with my surgeon, dietitian, and several other doctors in her office. My bloods weren't back yet because of Columbus Day so she said she was going to keep me posted.

The doctor got my 3 month post-op bloods the next morning and called me at 9am. She said that I needed to go directly to the hospital and that one of her partners would be expecting me. My vitamin levels were extremely severe. My thiamine (B1) was the worst- to the point where it was causing nerve problems and numbness in my face.

They hooked me up to IV fluids and stuck thiamine and folic acid in the first bag, and the infusion began. The next morning they took out my IV and put in a pick line. They began TPN (Total parenteral nutrition- basically feeding me through IV). I was in the hospital for 6 days until they were satisfied with my vitamin levels. I was sent home on TPN, for how long, is currently unknown, I am going into day 12.

I was able to go off clear liquids by day 6 in the hospital. I'm able to do mushies now. I do still have mild nausea, but it's tolerable enough that I don't have to take anything for it. The smells are still bothering me, but I have to just go with what appeals to me each day. The doctors are still not sure what caused me to get so sick. I was taking a multivitamin up until the day I went into the hospital it just didn't seem to be absorbing I guess? They let me go home, but wanted me to have a full GI and Cat Scan as an outpatient, but I'm a little hesitant to start drinking things and fooling around more while the nausea seems to have subsided.

So, for now, I have a home health nurse come once a week for dressings and bloodwork, I hook myself up to TPN for 12 hours a night, and I'm able to live more normally during the day. I am able to eat and drink but only about an ounce or two at a time. My stomach is still churning and rumbling like crazy, but one of the GI doctors suggested that giving my stomach the break that it got (while in the hospital) may have been just what it needed.



No Regrets?

Oct 05, 2008

Ok, so today, I'm angry. I am 3 and 1/2 months post op and down almost 100lbs and I am almost wishing I hadn't done this. First of all, I am completely off track with what I should be eating because I was sick AGAIN. I have had 3 strictures, pneumonia and a viral infection (both of which were compliments of the ER!) I am finally beginning to feel better than I have been, but I have been sick to my stomach so much from the strictures and being sick that I just don't know how I should be feeling. When I'm a year post-op, will I still feel sick to my stomach all the time? Everything just kind of feels different in there.

So, it's fall, my absolute favorite time of year. The crisp air, apples, pumpkins, cider, all this wonderful stuff, and I can't have any of it. Well, I'm not supposed to anyway. Do you realize how much of our culture and society revolves around food!!! It's making me absolutely crazy.

The biggest problem I keep running into is that I am NOT a cook. I hate cooking, and guess what, there's not much that you can have post-op at this stage that you don't have to cook. I just keep realizing everyday how much I can't eat, and I feel like I'll never eat again. More than anything I want fresh vegetables, and fruit. I want a ceasar salad! I want to bite into a fresh apple. I just hope that maybe this time next year I'll be able to have some of these things in moderation.

I also think I totally have body dysmorphia because I don't feel like I look any different. My super awesome supportive husband keeps telling me how great I look, and I don't feel any different. I was hoping I'd have a lot more energy at this stage. I feel like I've been stuck at this point for so long. I just want to be able to eat real food again

Down 85 Post Op

Sep 20, 2008

I had Laproscopic RNY Gastric Bypass on June 25, 2008.

I have lost 85lbs since surgery, but I have had 3 strictures and developed a degenerative disk problem in my spine

I am hoping that the next 3 months go better than my first 3

Surgery Scheduled

May 07, 2008

I have a date! I went and saw the PA today and she said that I have gotten all of my clearances and I'm ready for a date! 
                                       

                         June 25, 2008! 

I am so excited, but I've worn myself out with excitement. I think this is going to be the longest 8 weeks ever!



50 lbs

May 05, 2008

This morning I stepped on the scale, and I was pleasantly suprised. I have lost 50 pounds since I began the process on January 7th! I have had some ups and downs trying to lose. At about the 30lb mark I got stuck and fluxuated a bit so I was thrilled to see that I made it!

I had my psych eval today, and I go see the Dietician again tomorrow. I have an appoinment with my Surgeon on Wednesday and HOPEFULLY *fingers crossed* I'll get a surgery date. 

I am SO ready to get a date. I've done everything, jumped through all of the hoops. The only thing that I think could hold me back is the fact that I switched doctors halfway through the process. I had already lost 20+lbs when I switched and the new doctor wanted me to lost another 50 on top of that. If I could lost 80lbs I wouldn't be there! I have all of my weight loss documented so I'm hoping they will take that into consideration. 

I just feel so much more energetic and healthy just losing 50lbs, I can't wait to see how I'll feel after a couple hundred is gone!


About Me
Albany, NY
Location
39.2
BMI
RNY
Surgery
06/25/2008
Surgery Date
Feb 15, 2008
Member Since

Friends 7

Latest Blog 6
Complications, Hospital Stay, & TPN
No Regrets?
Down 85 Post Op
Surgery Scheduled
50 lbs

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