Type 1 for 30 years -- RNY or sleeve?

Hi all. I was diagnosed when I was 5 with Type 1 diabetes, and though I've changed types of insulin a few times, I've stuck with injections my whole life. I experience GREAT insulin resistance, and am a very brittle diabetic. Sometimes I don't feel the lows until I'm in the 40's. I'm really nervous about the dumping with RNY and treating lows, though I know that only like 30% of RNYers dump, it still makes me nervous. I had my New Patient Ed day at the weightloss clinic and my first NUT visit. Everything I hear as far as pamphlets, videos, and staff...it's like they are all pushing the RNY. I haven't had a chance to talk to my surgeon one on one yet, but made an appt with him on Oct 7, followed by NUT visit, 2 out of 3. Surgery could be in Nov according to the NUT and I feel that I'm pulled back and forth as far as which surgery to have. My insurance covers all 3. From what I read on here and the research I've done it seems like the VSG is the obvious choice, but everyone keeps pushing the RNY at the WL clinic. Obviously talking directly to the surgeon will make things clearer, I'm hoping at least, but I just would like to know the opinions of other Type 1ers out there I guess. I worry about leaks a lot with the VSG since that seems to keep coming up at the WL Center. Would love to hear your stories! Thanks a lot!

With the RNY, I would be much more nervous about reactive hypoglycemia than dumping. If I ever had to choose between VSG and RNY, I would opt for VSG in a heartbeat for preservation of the pylorus, no blind stomach, and fewer nutritional issues.

What is "reactive" hypoglycemia? I'm not just worried about the dumping. What I'm worried about is getting a low, like 40, needing to eat something with sugar in it or drink pop when in a pinch and then possibly throwing up what I just had/dumping and then going so low that I pass out. While pregnant with 2 out of 3 of my boys, because I had to keep my blood sugars lower all of the time for the sake of the baby, because I obviously waited too long to eat, I ended up falling down/passed out, was found on the floor and had to be taken to the ER. What if I'm throwing up when I'm 40? Scares me.

Also, what does blind stomach mean? Sorry, I'm not familiar with all the lingo quite yet! lol

Mishelle is right that reactive hypoglycemia probably won't happen since you're type 1 - sorry, my brain is usually focused on type 2!

Blind stomach is the part of the stomach left inside when they create the little pouch for the RNY - it is detached from the pouch and cannot be viewed endoscopically, so it can cause problems such as ulcers that cannot be scoped. This doesn't happen with the VSG since the excess stomach is completely removed instead of just sectioned off.

I do worry about the blind stomach. I have also heard about the stomach stretching too much and opening and going back to normal size, causing RNYers to gain the weight back. This is of course a worse concern about the sleeve though, because since the portion of the stomach is removed, any stretching could open the closed part and cause leaking, which is much more serious. Sigh. I wi**** was an obvious answer. Do RNYers need to completely avoid NSAIDs? I mean, if I take 500 mg for a headache once and awhile is that going to hurt?

Once a VSG stomach is healed, stretching will not cause a leak, just as stretching a normal stomach would not rip a hole in it.

Some RNY surgeons seem to be okay with their patients taking NSAIDs as long as they also take something else with it (an acid reducer, maybe? I can't recall). However, the effects of NSAIDs are systemic and can affect the blind stomach via the blood stream - it's not about direct contact. I can't tell you how many NSAIDs you could take without a problem - some people NEVER have problems. The issue with the RNY is that NSAIDs are known to cause ulcers (even in regular people who have never had surgery), and if those ulcers occur in the blind stomach, they can take quite some time to diagnose due to the inability to scope the blind stomach.

Ok I understand. It just seems like there are just so many unknowns about the RNY, even though it's the most performed surgery. Weird...and a bit scary.

So why don't they stitch you up/staple you as well with the RNY as far as blocking the other part of the stomach than they do with the VSG? Or is it because they are making the line in a different part of the stomach/different shape? Sorry if I sound uninformed. I guess I sort of am when it comes to this part of it!

If you don't mind my asking, I'm curious about your signature. What do you mean you're somewhere in between a VSG and a DS? I read your profile story. Wow a lot of similarities in our growing up.

as a type 1, I don't have reactive hypoglycemia because my pump is giving me insulin not my pancreas.

Treating lows was a concern of mine, but it works out that I treat with milk first, sometimes with carnation instant breakfast, for thats a bit more carb, and then follow later with a protein type snack.

Having had diabetes as long as you have (I'm at 25 years myself) You might need to talk to your doctor to see if gastroparesis has any issue with the other surgical choices. When they went in to do my lap RNY, they found lots of fiberous tissue in my stomach lining, and therefore I had to be converted to an open procedure. I didn't like going open, but now being a year out, I don't give a flip. LOL. Recovery was a bit slower than a lap procedure - but I was pretty typical for an open taking about 2 months to finally feel totally human again.

Are you on a pump? If just doing injections, then work with your endo about changing your correction factor so that your using a higher number. Typically use 100 as my bg target, I raised it to 150 post op for a couple of months so that I wouldn't be correcting and going too low. That worked out great. I didn't have many severe lows.

As you know, when you get your swings under better control, you will be able to regain some of your hypoglycemia unawareness back. Raising your bg target even just a little and keeping it there can help reset the system.

I was very insulin resistant myself pre surgery my TDD was about 130-140 Now I average about 50 units. About 30 of that is basal. I'm still tweaking things a bit, and I am a year out so I can eat a bit more than early post op. All in all i think the diabetes has improved a great deal with the RNY - and like I said i have regained my insulin sensitivity. Before a correction/meal bolus could be 10-15 units. Now Its more like 2 to 4 units. I could of taken 2 units and not effect my system what so ever pre-op.

You got any further questions, please feel free to PM me.

Hope some of this stuff has helped. 13 months post op now and I'm down 132 pounds. A bit slower maybe than others being diabetic, but still feel so much better and has been worth it.

I don't dump, and I haven't pushed it but I have had to treat lows with sugar when all else fails.

Hi Mishelle! Thanks for the long reply. Lots of great info!

So I'm curious about before you had surgery...did milk treat your lows then? I have no idea what's going to happen once I lose, but right now, milk doesn't even touch a low of mine. I've always been advised that it can be used for a low, but it's never helped me get out of the danger zone alone. Chocolate milk does though...I guess that little bit of sugar is just what I need, so I'm sure Carnation Instant Breakfast could work for me, that is if I am home, but I worry about what could happen if I'm out. I usually carry candy or a juice box with me in case something happens, but what do I do carry a thermos around with milk in it? lol So does 100% juice cause the dumping syndrome in some RNYers or is it just processed sugar?

I'm a bit confused about gastroparesis. Delayed gastric emptying? Opposite of dumping or "rapid gastric emptying?" Do you have this and how does it relate to the fiberous tissue and RNY? I read that gastroparesis can be caused by diabetes or abdominal surgery. A bit confused is all, if you wouldn't mind explaining I'd appreciate it. I kind of worry about an open surgery, or something happening that the surgeon is not prepared for, since we, as Type 1's are the minority. I'm sure it would have been totally unexpected that you went under thinking it was going to be laproscopic and woke up to being cut open. Things could have been much worse though!

I'm not on a pump, never took the "plunge" because I've been so comfortable with my shots...am so used to giving them that it really didn't matter to me, plus I have worn a continuous glucose monitor before and I just hated having that attached at all times. I'm thinking that is how I may feel about a pump, but then again, I have not read a lot about it, only heard the jist of it through the grapevine, from doctors and random posts on message boards. I was diagnosed back in the day (1980...eek! Shows my age! lol) and there have been SO many new developments since then.

Recently I saw a endocrinologist who thought I would benefit from taking U-500 instead of the Novolog and Lantus I was taking. I was pretty well controlled, aside from higher morning fasting sugars being slightly higher, but because I was taking a total of about 200 units and overweight, he said that I could take less units with this, which may help with insulin resistance and my weight. If you don't know, U-500 is a concentrated insulin where 1 unit is equal to 5 of regular or novolog. What I really don't understand is if it's concentrated, is it truly "less" and will give me back any sensitivity? The problem with U-500 is that it doesn't start working for like 1 - 1.5 hours and peak times are different and it last much longer, so they compared it more to an NPH than regular. I hate that it's not really adjustable to what you're eating...I really don't like it at all. They thought that this would also work for my high fasting BG's too, but it did not. They said to try it for a week, then call with sugars and they couldn't titrate until 7-14 days. Told me I didn't need to keep a food log and told me to take 10, 10, and 10 - breakfast, lunch and dinner. I WAS taking 45, 15 and 28. Does this make ANY sense to you? Hello...I was bottoming in the afternoon and waking up with BG in the 300's to 500's! I was like, "In the mornings I feel like crap...like I have to throw up, so dehyrated, SOOO tired, I REALLY hope that I can correct with Novolog if you won't let me correct with U-500!" Grrr...which I did at first, but...after listing to the CDE's for so long getting nowhere, I ended up tweaking things on my own - taking less U-500 at dinner and 30 Lantus at bedtime. I was taking 70 Lantus before the U-500 so I guess it's helping me somewhat. I just sort of wonder what is the point of changing all of this in the last few weeks if I will have to redo it all again after surgery, which could be as early as Nov. Sigh...we will see!

Congratulations on your awesome success, and it sounds like everything is pretty well controlled for you too! I would be thrilled with results like that! Slower weightloss is better sometimes too, so I hear. You have time to tone up and may have less loose skin. Is that the case for you?

Well I've rambled. I probably should've PMed you! I didn't realize that I was going to say so much. Thanks again for taking the time to reply. Hope to hear back soon!