Any Type 1's here that have had gastric sleeve surgery?

I was diagnosed with Type 1 at age 21 in 1994. I was a healthy weight then. I am now 40, and through years of higher and higher insulin requirements, insulin resistance, a sedentary job, hormone treatments for fertility issues, and pregnancy(I have a 2 year old daughter, yay!), I am now the heaviest weight I've ever been.
I am at least 130 lbs over my ideal weight, and my endocrinologist (who had the surgery himself, as a Type 2) has suggested I pursue the gastric sleeve bariatric surgery.

I know plenty of people who have had various bariatric surgeries...but none of them are Type 1. Is there anyone here who knows someone who has been through it, and can give me a heads up on what to expect post-surgery? Surgery in itself is scary, but surgery that changes how I manage my diabetes is even scarier. I feel like I have JUST figured out (mostly) how to manage things, and now I'll be throwing a wrench into it. But the thought of dealing with all this joint pain, back & feet issues, potential heart disease risks, and shortened life span from all this added weight scares me even more.

Still searching/looking for any Type 1's who may have had gastric sleeve surgery. Since I can't seem to find any anecdotal evidence of my own, I have started blogging about it at:
Wish me luck!!!

I don't know any T1Ds that have had this procedure. It seems like a drastic solution for losing weight. Any surgery has an element of risk. Have you tried lifestyle modifications already? Have you tried a lower carb diet? How about committing to an exercise regimen, like walking? You didn't mention any previous efforts in this regard; please excuse my suggestions if you've already exhausted these tactics.

What are the statistics for people that have had the surgery? Is the weight loss sustainable? What are the one, two, and five year sustained weight loss percentages? Have you talked with anyone who has had this done?

I apologize if I've taken this response in a totally unhelpful direction. I wish you the best in whatever choice you make.

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Yes. If you read through my blog posts, you can see previous efforts mentioned. I have done diets, exercise, you name it. I also have metabolic syndrome, bad hips, bad knees and ankles, plantar fasciitis, and other joint issues that make exercise more difficult, all because of my weight. It's a vicious cycle.

I've read through all the statistics for normal/non-type 1 people with this surgery, and the outlooks are generally good, as long as the patient is compliant. But it's comparing apples to avocados, which is why I'm trying to find a Type 1 to talk to who has done this surgery. If you hear of one, please send them my way.

I will. It sounds like you've examined many alternatives. Good luck with whatever you decide.

Hi, I am type 2 (actually think I am LADA) but take massive amounts of insulin a day and oral meds. Things have progressed over time that nothing really works well for me now to get my BG under control so I am going for RNY Gastric bypass in 10 days. My BMI is 30.7 right now. I am having this surgery to try to get my blood sugars to improve, the few stats show that it should help. My surgeon told me that if he goes in and can't do the RNY part he will possibly reduce it to a sleeve gastrectomy. I think that the intestinal part of the operation is vital to dealing with blood sugars. The sleeve would help restrict calories intake and reduce some incretins which stimulate the pancreas to produce insulin- so it would maybe help somewhat too. I do know they say that the c-peptide level needs to be checked before doing any metabolic surgery, so that would be a start. Restriction would help but it could pose issues too if it causes too much caloric restriction- as far as I know the sleeve isn't reversible so you have to take that into consideration as well. Best of luck and if oyu want to meesage me, feel free to do so.

Hi there - sorry for the delay, I didn't see your response until today! How did your surgery go? Hope you are healing well and things are going good!
I'm pretty sure neither surgery is reversible, and the thing I worry most about the RNY is the malabsorption issues. The sleeve will cause them to some degree, but not as dramatically as RNY - one reason why there is usually much more weight loss much more quickly with RNY. I've been chatting with several people (regular folks, not ones with T1D) who have had the different surgeries, and am still on track for doing the gastric sleeve. It is what makes most sense for me, and what I am comfortable doing, I just still would like to find another T1 who has had it so I can ask more detailed questions that they would know how to address. We all know Your Diabetes May Vary, and the differences between T1 and T2 with regards to everything makes it even more different :) Thanks for messaging!

I’m Type 1 and 130 lbs overweight too. I plan to have the gastric sleeve (as recommended by my endo) this summer. The big thing the dr told me was lowing insulin for less food intake. Kinda like going low carb. I’m glad to hear I’m not the only overweight Type 1!

Hi Rhonda, I am 3 months post op and it has been phenomenal for my blood sugar control- although I am starting to see a bit of a climb again- maybe some insulin resistance starting to increase again, we don't really know yet. I have been just above normal most of the time which in itself is a miracle!
The RNY Gastric Bypass has some major side effects and I am getting them- it causes you to malabsorp vitamins and minerals. I have excruciating pain all over my body most days now, due to my neuropathy reversing from numbness to pain and due to malabsorption, making my bones ache/hurt and my muscles spasm. I still don't regret getting the surgery cause I am here still, would likely have died if not had it. I can't take pain killers so this has been a tough road, I am not sure I would recommend people getting it yet unless it was your last hope.

I am supposed to have the sleeve procedure this summer. The problem is that my dr won’t release me for surgery unless my A1C is below 8. My numbers are all over the place-1 reason for the surgery. Did you have problems with surgery clearance? I’m scared that I won’t be able to get it done. I also feel so alone. I tried to go low carb but the body won’t lose unless the sugars are 90-110. A T1D is never going to have this consistently. Can you give me any insight?

Have you had the surgery yet?

I was diagnosed with T1D at age 16 in 1994. It sounds like we have quite a bit in common as far as our struggles. I plan to have the sleeve procedure this summer. What have you found with your research?

SpeckleParkMatters -- Thank you so much for your reply and follow-up. I'm definitely too cautious about RNY, for many of the side effects you mention. Everyone is different - we all have our differing body requirements and issues. I know RNY has worked for several T1s I've spoken with, but as you say, it's a tough road and not for the faint of heart. I'm still confident that the sleeve is the way to go for me. I hope you continue in recovery, and that your weight loss can continue without hurting you further!

Hey Christy!! Sorry, I'm just catching up on here :) I will private message you my regular email address (that I check more often!) and yes, we do have lots in common!! I am hoping to hear back from my surgeon soon - they just submitted my paperwork to insurance to see about getting it approved. Supposedly, they shouldn't have a problem with approval since I am 130 lbs overweight (BMI is something like 44) and have the co-morbidity of type 1 diabetes. Once the insurance comes back, then we'll schedule a surgery date. I'm shooting for the 2nd or 3rd week in June. We'll see!!!

Hi, Rhonda:

I'm a type 1 (diagnosed at age 8 in 1993). I had uncontrolled hypothyroidism for 4 years and gained 250 pounds in about 2 years. And it's been impossible for me to take the weight off, no matter what I try. So I went to my university hospital's bariatric center to see if they thought surgery would help me.

Anyway, my doctor said that they had done the gastric sleeve on a type 1 and it had really improved her diabetes, and she had no issue taking in enough sugar when she needed it. (This is a particular issue for me, because in the past I tended to overinject myself with insulin and get low a lot, and I'm concerned that I'll get low and not be able to ingest enough sugar.) Unfortunately, because of HIPAA, they can't give me her name, but I came on here hoping that someone else had done the procedure and could tell me what effects it had. Basically, all I can say is that I know it was successfully done on at least one type 1, but it sounds like we're in the same boat trying to find information.

If my insurance covers it, though, I am fairly sure I will go through with the surgery, even if I can't find other type 1s to talk to about it. Have you made a decision yet?

Yes! I am going to have the sleeve surgery (vertical sleeve gastrectomy.) Rearranging my insides with RNY just seems way too scary for me, but I can better understand and process the idea of the removal of 75-80% of my stomach.
It took me close to 20 years of T1 to figure out how all my digestion worked, when to take insulin for food, how to set square and dual wave boluses, etc, so the scariest thing for me is starting all over and figuring out how things will work post-surgery. (My A1cs are fantastic - one reason my endo recommended me for the surgery was that I am generally very healthy, EXCEPT for all the extra weight I have that is causing me joint and body pains, which make exercising ridiculously hard, and doesn't help me lose the weight, obviously. Not to mention the insulin resistance I have, that is very Type 2-like. It's a vicious cycle.)
Tentative surgery date of June 18. I'll be blogging about it and trying to keep everyone posted at (I don't always get into this forum as often as I should.)

Yeah, my diabetes is type-2 like as well. (I moved to a new city and got a new endocrinologist. He insisted that I must have type 2, even though I told him I'd been diagnosed at age 8, with sugars at 1900, and about 20 pounds underweight. He did the blood test and was very annoyed to tell me I did in fact have type 1. But he triumphantly noted that I had symptoms of type 2 as well.)

I am really interested to hear how the surgery is for a type 1. I've found a few forums online, but they were all posted years ago. So I will definitely check your site to see how things go for you.

I too have a low AIc - usually I'm in the 4s, though my last one was 5.2. With the tight control, I do have more lows than a lot of type 1s. Since you have a low A1c, do you have a problem with lows? Do you know much about how you will treat them once you've had the surgery? That's what's held me back from getting the surgery for years, is the worry about low blood sugars.

But I'm completely understand about exercise. I used to be able to exercise some, but now I have to sit down after walking about 100 feet. It's horribly annoying. Anyway, good luck!

My diabetes is type-1 and I have cleared all my tests and finally going for Gastric Bypass in the coming January. My pre surgery diet is going fine and I discussed all the aspects of the surgery with my physician. I would also like to hear from anybody gone under any weight loss surgery how they felt after the surgery.:slight_smile:

Sorry, I just read the discussion and posted a reply didn’t realised it earlier that it is an older post. :wink:

Hi @RhondaB,

I know you are looking into gastric sleeve surgery, all i’ve heard of as well is mostly T2’s and its success. I read some posts on your blog. Good for you for committing yourself taking healthier steps in life! :smile: Celebrating some goals reached really helped me :blush:
I’ve struggled a lot with my weight too, I’m on my 4th pregnancy and final one at that. I have Hashimoto’s (Hypothyroidism) and I’m a T1 as well. After my 3rd pregnancy I struggled with insulin resistance, extreme weight gain, increased insulin requirements, etc. It was a nightmare. This went on for close to a year before my endo suggested something that helped me. I tried Symelin which didn’t work at all for me. I exercise a lot and I was killing myself with no results. I knee issues due to a high school soccer injury and I struggled with plantar fascitis as well.
My endo suggested I go on Invokana. Its not yet approved for T1’s but a lot of endo’s are prescribing it for T1’s with great success for blood sugar control and weightloss. It seriously worked for me where nothing had before. I lost 25 lbs in 3 months. My insulin requirements dropped a little. My alc went from 7.9 to 7.0. I also committed myself to seeing a Chiropractor and it really helped my knee and plantar issues. My plantar fascitis completely disappeared with the exercises and therapy the doctor completed on me.
If you have already tried this then, please by all means, skip my reply, but if you haven’t, I highly encourage you to speak with your endo about this medication. It might work, it might not. Its a lot cheaper and easier to try than surgery.
Best wishes for you,