I just want my duodenum back!

I had an RNY five years and a few months ago.  I never lost all the weight I wanted to, but I have maintained a loss of about 75-80 pounds ever since, so I am considered a success.  My main problem is that I have severe reactive hypoglycemia.  I no longer even attempt to eat carbohydrates other than vegetables, or I fall asleep all the time.  I cookie would have me writhing on the floor for hours, not to mention the diarrhea.   I'm one of those people who is unable to vomit since RNY, so when I'm sick after eating, I stay that way for a loooonnnggg time.  So, I'm living on protein and vegetables, but I stil spend half of my life sleeping.  

Has anyone had a revision from RNY to anything -- DS, Sleeve, whatever, just so they could get their duodenum back into the mix?  I'm so tired (literally and figuratively) of low blood sugar!

Linda

Hi Linda,

I know how u feel, I had RNY back in 2009, never lost all the weight n started gaining back, I am now hypoglycemic if I eat too much, like carbs or sugars I feel sick, my heart races for hours, then once my sugar has spiked it drops super fast where I then become hypo, n yawning, sooo tired n sleepy. Have u had a revision ? I'm scheduled for DS on Nov 28th. I'm hoping not being able to eat a lot again will curb my hypoglycemia.

∼Christine

It's not your duodenum you need, it's your pyloric valve.  It's still there, just bypassed so all your food goes straight into your intestines.  I have heard this is the reason so many RNY patients have reactive hypoglycemia.  I have had a few episodes and I know how terrible it is.  The only way I can deal with it is to totally avoid all "bad" carbs, which I already had been doing, and to eat every 2 to 3 hours around the clock, something high protein with complex carbs.  I haven't had an episode since May, knock on wood.  I keep something with me all the time.  I don't seem to have a problem with all carbs, just things with gluten apparently.
If you are already doing those things and you still have problems you need to find a surgeon that would be willing to put your stomach back together into a sleeve, with or without a DS.  Getting your pyloric valve back into play should solve your problems.  You are probably going to have to travel since I haven't heard of any surgeons experienced in this kind of revision.  There are two in California, Dr. Rabkin and Dr. K.  You could contact them and get their take on your situation.

Yep.  I need my pyloric valve and some intrinsic factor.  I eat no refined carbs and, actually very few unrefined carbs except for non-starchy vegetables and low-sugar fruits.  They've tried giving me drugs to block the carbohydrates, but they only give me severe gas -- ya, that's a lot of fun!

Linda, this sounds like a drag, and not a fair way for a still young woman to be living. 

Yes, there are lots of people who have revised from RNY to DS to deal with these issues from the pylorus being bypassed, and also regain. Many of them now post elsewhere, and I'm sure you know where to find them, but I'm hoping there are still a few around OH who will pop in here.

The thing is, and I suspect you know this, is that only a few surgeons in the world are capable or recommended to do that revision, as it's difficult. Two of the top guns are in CA, which is what I would consider close for such a surgery, and that's fortunate. 

The sleeve would also put your pyloric valve back on line, which would help with the reactive hypoglycemia or dumping, but when you have been living with a surgery that had some malabsorption, then going to one with NO malabsorbtion like the sleeve is likely asking for real regain. If you want to still lose a few pounds, then the DS would likely be the best for that. 

I don't know too many with RNY to RNY(like ERNY) revisions, but the few I do know seem to have more and more problems, and very similar to the issues you already have, but even more so. 

I'd pm you some links where you can talk to other revisions, but can't because I'm on eternal moderation, so I'm hoping you know where to track them down. Good luck.

Thanks Amy!  You're one of my very favorite fictional characters.  I'm not anxious for more surgery, but I can't see too many other options.

Linda, I also deal with severe RH. Now - I adapted a new eating that really works very well for me.

I was still eating complex carbs and fruits and would have 1-2 times a day RH. I hated that.

My friend to decarb and asked me if I can do that with her. I eliminated all starch carbs and fruits ... after 3 days of that diet - I noticed that I no longer have low BS even if I don't eat for a while.

I do eat proteins, fat, and some veggies. Nuts and seeds are also fine for me. No only my weight gain stopped but I also was able to lose 10 lbs that I gained due to the RH.
I know I can lose more if I really want to... But at this point - I am fit and healthy - not thin - but size 6-10 is not that big either.

I had to eliminate all starches, even beans (I could not digest them anyway) or other "so called healthy carbs" . No potatoes, or rice. No root veggies. I even limit carrots.
Last but not least - I eliminated fruits - even the low sugar fruits. My last RH was on 1 cup of blueberries. Not cool.

Since I eliminated all the stuff and added fat to my diet - I am doing great. I bake and cook. I can eat out...
I also eliminated most artificial sweeteners and flavors. SA - always affected me (except Erythritol - so far so good). I don't drink milk - maybe I can use some half and half in my coffee if I don't have my coconut or almond unsweet milk. I have relatively RH free life now. And yes - eating a bite if bread or dessert is an issue for me - I no longer do that, or allow myself to do that.
in a way it is a severe restriction - but I can function, and even go for hrs without eating.   

Here is any idea what my day eating is like:

Morning":

Coffee with unsweet coconut or almond  milk w stevia

Breakfast"
·          Protein shake –make sure it is low carb and have app 5 gr of fat.
·          Egg omelet wit meat and veggies, or any egg combination
·          Any meat + cheese
·          1 oz of nuts.

Lunch:

·          Protein + veggies + fat. (need to have the fat) (meat, fish, or cheese)

·          Or may have Greek yogurt (full fat) with protein in it

·          Dinner:

·          Same as lunch or breakfast. (who said eggs are only good for breakfast? )

 Snacks:

·          Homemade protein muffins or pancakes, or any other “homemade – low starches – high protein food.

·          Nuts and seeds

·          Cheese sticks or baby bell cheese.

·          Cold cuts… or any meat …

·          Pork rinds with salsa or other dip.

 

Protein shake – whey isolate or egg white protein - made with 1 cup of coconut or almond milk (to get the fat, low fat protein shake may make me get RH – I need the fat, I may even add 1-2 tsp of real NSA peanut or almond butter if I don’t have the “milk")

I don’t trust the labels for wholly processed foods (i.e. protein bars or “low carb desserts") I got sick way to many times.  I no longer believe in “net carb" labels (Atkins, Quest-bars, etc.) Again – I got reaction way to often not to notice the labels are made to sell the product.

Maybe one day yu can get revision - in a mean time - limiting the diet - what yo eat and what you don't may help you.

Thanks.  I have already eliminated most of what you have.  I do sometime eat berries (unsweetened) or half an apple, but I eat no grains or beans, no rice, pasta, bread, crackers, and certainly no sweet treats.  I am constantly exhausted, but I do my best to keep up with walking the dog, working, etc.  I'm just very frustrated.  Tryinng to get all the nutrients I can and stay awake!

I guess for me increasing the fat in my diet (as natural as I can - nuts, seeds, coconut, etc) made a huge difference.

Also - making sure my labs are not only OK - but more than OK. i.e. I need my B12 to be >800 or I have issues.
I need my ferritin > 50 or I have issues.

When my ferritin dropped below 50... I could fell asleep anywhere any time, even after triple espresso.

What I also found out - that even small "carby" snack may send me back for a few days. As if my pancreas gets "excited" and just makes insulin because it can.

It sucks. Big time. I do not trust processed food labels, or anything like that.
Any new food I test at least 3 times on empty pouch - to see what sugar response I get.

I even got RH from egg white protein powder that was not supposed to have any sugar. Go figure.

I am glad that I was able to find things that work for me. At least for a while. 

I know you understand. Hugs.

are you taking acarbose?? that seems to be the main drug they are using for Reactive hypoglycemia


Tamara