Transoral outlet reduction (TORe) for severe dumping syndrome

Hi @brendanordstrom, living with severe dumping syndrome really limits your quality of life. Here's a video about TORe.

I hope octreotide is possible for you and that it works. Did your team suggest TORe as a possible solution?

Thank you, Colleen!
I really appreciate your response. I have been cleared by cardiology for the use of octreotide. I see my endocrinologist in March and will hopefully start the medication then. My biggest issue is that I have so many specialists. Now that I have met with the admission PA of the U of M bariatric team, I'm hoping to pull everything over to the same page. I have only met with the admission PA so far but when I asked if they do TORe I was told they have a physician who does do the procedure.

I have done most of the research related to my problem myself. I happen to be a nurse so I know what to look for and where to look. But I would love to have a team that would discuss the entire problem and provide options.

@brendanordstrom . Brenda, just joined Connect-mayoclinc site. Responding 11 months too late but I had a transoral outlet reduction procedure done about 4 years ago. It seems to worked slightly but didn't really work well. I had my pylorus removed in 2009 at Mayo in MN. I like you have to stick with a high protein diet. I suffer daily from dumping syndrome and curious if you tood the octreotide and if it helped? I researched pyloric reconstruction years ago before TORE's were available. I'm researching again hoping to find relief.

@brendanordstrom , @erieland and @jennylynn72

In previous Connect discussion, you have mentioned the TORe procedures. My provider has recommended for reactive hypoglycemic.

I would like to hear yours (or anyone's) experience with the TORe procedure.

Thanks

I have this dumping syndrome, but only recently. I went to the endo yesterday and left crying. He said, “you have a phase 1 followed by a phase 2 insulin response. Stop eating carbs.”

I tried to engage him in a conversation as I have been reading that GLP-1’s (although it sounds counter productive) will slow the digestive process down enough to stop the syndrome.

I only started having this recently and I am 18 years post bariatric. Seven months ago I stopped all alcohol (beer and wine) and I also read that could be the culprit? I think before I quit that I didn’t miss carbs at all. But after quitting I have re introduced a few low glycemic carbs, but nothing crazy.

My A1C has been under 6 since my surgery, so semaglutide was out of the question. But wearing a CGM I discovered my BS shoots up to over 250 and then plummets to under 70. It’s dangerous, I would fall if I wasn’t mindful and I am afraid that could happen. I get chills and need an electric blanket to recover.

My frustration is over the roof. I really don’t want more surgery, but I need to be able to function.

Has anyone tried out been suggested to use semaglutide for this?

@dig2dye2
I was going through the same thing, 13 years post-surgery. Spikes then low blood sugars. No one suggested GLP-1 for me, but I talked to a nutritionist about diet changes. I could not get it under control and saw two providers in endocrinology who had different opinions. One was against the TORe and the other recommended. I decided to do TORe and have not had any hypoglycemia events since. But I did have some post surgery issues and ended up in the hospital with a bleeding ulcer. No one could tell me for sure what happened. I was following all the diet restrictions. But everyone is different. All recovered now.

Using CGM prior to surgery to record what was happening was helpful and helped me know when my blood sugar was dropping, and I needed to eat something. I actually turned off the alarm because it kept going off.

Did your endocrinologist suggest follow-up appointments with a nutritionist, or tell you what to do when you have an episode?

I have a bariatric nutritionist. He sent me to the endo. I made an appointment with a bariatric surgeon next week for a consult. I also have a hiatal hernia I forgot about.

I do not need to lose weight.. that’s the problem. Weight and A1C along with all my other numbers are perfect. I really work hard at my diet and exercise. I am exhausted from eating homemade health foods; I have to cook them!

In the meantime I signed up online with a reputable GLP1 provider and I am going to give it a try. It is used off label for this but nothing uses really published yet.. doctors need studies. I get it..

@dig2dye2 I am currently on a GLP1 and it slows the reaction time but doesn't stop it. I think it lowers the peak a little but I can't say for sure.

I totally get your frustration and the need to keep my carb consumption to basically zero has not been achievable for me (for a variety of reasons, including psychological). Unfortunately my insurance will not cover the TOR-e procedure. So Im stuck. Ive been doing this since 2020 and it has just been getting worse. The CGM helps me catch it so that's a plus.

I hope the GLP1 works for you. It's worth a try