RNY to DS & Hypoglycemia

Hello, my name is Jennifer. I spend most of my time on the Ontario board but having just been approved for surgery by Ontario's public insurance, I now have some revision questions. I had RNY in 2002. Before that I did not have diabetes or hypoglycemia. The removal of the pylorus caused severe dumping syndrome/hypoglycemia/nesidioblastosis/hyperinsulinemic hypoglycemia. Those are all the terms that were thrown at me and I know some are the the same. The biggest problem is that the insuline is starving my body and brain of glucose - I am having speech and memory as well as decision making problems and I am eating like crazy to replace the glucose which just results in more insuline.

 My newest problem is this: I fought for 2 years to get my insurance to cover a reversal of RNY, conversion to Duodenal Switch. My thinking was that having my pyloric valve back where it belongs would stop the dumping and therefore the hypoglycemia and the DS part would help with the weight loss that I did not achieve with the RNY. I have spoken with at least one surgeon who agrees with this and the doctors *****ferrred me, one being an Ontario surgeon also agree that DS would be best. However, I recently spoke to a surgeon who said that the DS would make the hypoglycemia worse and possibly put me into hypoglycemic coma.

Has anyone had experience with hypoglycemia and a revision to DS?

Thanks,

Hi!

I had RNY in 2003, and a revision to the DS this past December. It's amazing! No more dumping, no more hypoglycemia, no more barfing from every little thing. With your pyloric valve back, you'll be able to eat more normally. Stick with a very low carb diet to regulate your body and the weight will come off. I was 328 when I had my RNY, lost to 170, regained to 221, and I am now at 167. I have NO hypoglycemia symptoms whatsoever.

Take care,
Adele

Thanks Adele. How was your recovery second time around? Were your surgeries lap?

Hi there,

Both of my surgeries were open. It doesn't bother me, and I'm lucky. Dr. Greenbaum's scar is excellent and I heal well.   Anyway, I would say recovery was tougher. I had a lot of work done - he revised from the RNY to the DS, including removal of the permanent ring around my stoma - and I had my gall bladder and appendix out. He also found a lot of adhesions and a partial bowel obstruction which he repaired. I had surgery on the 21st and was released on the 25th. I felt like crap for a couple of weeks but by the third week of January I flew to Austin, TX to see friends.

My only complication was in catching c. diff but that seems to be over now. I was on antibiotics on and off from February to June.

It's good to hear that you did so well. My first was open and I think this one will be as well. I was not in pain after the first - pain seems worse with lap procedures for me. Amazing that you flew for your visit a few weeks in!

I just popped onto this forum and saw this post.  I am not a revision, but I can tell you two things.  First thing is that I see very few people suffering from hypoglycemia on the DS forums or IRL.  It's very rarely a topic of conversation and I don't hear or read about DSers struggling with it.  Second, I had pretty bad hypo before surgery and I've only had a couple fairly mild episodes in the almost two years since surgery.  For me, the DS pretty much cured my hypoglycemia.

Thank you!

i had RNY surgery back in 2003, a birthday present to myself. I had no idea of the pain and suffering that would follow. Yes I lost weight and I lost my hair, I lost tha ability to eat, I lost my friends, my family and my life.

I had no idea that this was irreversable. I mean they can transplant a heart, sepersate babies joined at the head, how could unstabling a stomach and reattaching my intestines be impossible.

I suffered from nausea for YEARS. Dry heaving 20 times in 4 hours. Every day the pain was unbearable and I prayed to die. I hoped the antinausea meds woulkd help, but I started getting extra parimital features. My jaw locked for so long I broke 2 of my teeth. So first came the taking out of my gallbladder, but it did not help. I was diagnoised with a ulcer and no medication would help. The doctors diagnoised me with everything from an eating disoerder, to cancer, late dumping syndrome, diabetes. A year and a half, over 15 PICC lines, a feeding tube surgically implanted and after every test known to man they found it. A bowel obstruction.

One test, just one a barium test with a small bowel follow through and it just sat there for 4 hours it just sat there. SMA syndrome, the rarest bowel obstruction there is-but still a bowel obstruction. So I had a "take down" since there is no such thing as a reversal, revision, cure. My dueodnum was crushed between my Aorta and Superior mesintaric artery. So thhey changed my gatric  tube to a juejunal tube hoping to bypass the obstruction and could gain weight. 4 tubes later it didn't work, I had PICC line infetions, a fungal infection in my brain, and blood clots that started at my PICC site and went to my chest, heart, neck,lungs and brain.

I went to every hospital in CA. Chapman medical (where I had it done) UCI, UCLA, St jospeh, St. Jude, finally at Scripps hospital in san Diego a 6 hour round trip I found a doctor  that would help. Since no one wanted to even touch my Aorta or the artry that supplies blood to your lower body they did what they could. Unstapped my stomach, took out the feding tube and took a piece of intestin and stuck it to my stomach. I  had only a 50 % chance I would survive.

I thought it would work, sliced from my chest all the way down to my pubic bone. The pain was incredible. Even with 35mg of IV dilaudid an hour and 750 mcg with a Fentyl patch and still I was in pain. After a few weeks I was transfered to a hospital closer to home where they starved me for days, not even a sip of water. I have no idea why they would be so cruel. they also stopped my dilaudid from 35mg to 10mg. I left that place and entered another hospital where I was treated and sent home.

But still the pain remained. Hospitilized they accused me of having Munchousen syndrome, the next day they did my 8th endoscopy and they found bile everywhere. Obviously not from my gallbladder but from my liver and pancrease. I went from a hypocondriac to having a heliocopter called to trnsfer me to Scripps where they wanted to operate again and lower my liver and pancrease ducts lower down. I did not want another operation, so I left AMA. I went back to UCLA and with high doses of nexium and zantac it would help.

It didn't. After the YEARS of vomitinng, malnutrion my teeth started falling out. Breaking off like something out of a horror movie. Yet again I went from dentist to dentist and even back to UCLA where they said they could not help. Finally after 30 dentist I found one that would perform the surgery in a hospital. First I needed a porta cath surgically placed in my chest then I walked into the hospital where thry pulled out ALL my teeth. I am not even 40 and my stomach looks like a mad man went to town and I have no teeth.

I am still in pain, even willing to operate again to move the liver and pancrease ducts only to be told that it would not work. One of the problems is GERD is acidic annd bile is alkaline, so Nexium and zantac would not help. The only medication that coulld help is reglan which I can't take due to the neurological side effects. There is nother medication, but it's now illegal in america. the dictor said I could get it in Mexico and all I could think was having to drive to a foreign country and stick medication down my pants.

So now there is nothing else that can be done. I have an ulcer that will never heal.I have GERD. I have biliary and pancreatic reflux from which there is no cure. I have also developed a hiatal hernia, but there would be no point in fixing itand no teeth.

I did this surgery to be pretty and now I look  like a monster. I have 2 small children and a wonderful husband that I promised I would fight, I don't want to. I pray to die since the pain and nausea will never go away. I have such a high tolerence to pain meds that they worry if it's increased I will stop breathing and die. And the icing on the cake is the medication that helped the most, Fentnyl patches which would not have to go through my mesed up digestion tract is over 90 dollars a month. I am on over 20 different medications and can not afford it.

To anyone thinking about getting this done all I can say is don't. Hairless, toothless, scarred, weak, and in constant unending pain. The biggest mistake of my life and as I sink like the titanic I am pulling my husband and children with me and it sucks. Everyday for YEARS I am in pain and sick.

lydia