Twisted sleeve

[Rae5148 28]

I'm a few weeks short of four months post op. I have never progressed to full food as I have a twisted sleeve. I noticed this when I was transitioning to puréed

And soft foods that I would get an intense pain and backed up saliva. I also would feel a pain when I drank anything hot and then it Sounds like a clogged drain that the liquid finally passes through. At two months post op I had a swallow test and was told I had strictures. When the dr went in to stretch them out my stomach was twisted like a cork screw with five turns. The dr has straightened it out twice since and said she can do it one more time and then I have to look into a stent or bypass.

Has anyone had an experience like this?

[M@E 84]

Hi no but I am also nearly 4 months out also and vomit most days when I eat anything that is what I would call normal food, I get a build up of mucous over a 20-30 min period and then have to ?. I am seeing my consultant for 1st time on Wednesday so hope he sends me for some tests. Hope you start to feel better soon xx


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[AnneElliot 79]

I am sorry you're going through this!

I hope the stent work and you don't need to revise!

[Berry78 4,259]

A stent is definitely something to try.

Good luck!

[Ready2Live! 17]

On 2/20/2017 at 6:28 PM, Rae5148 said:

I'm a few weeks short of four months post op. I have never progressed to full food as I have a twisted sleeve. I noticed this when I was transitioning to puréed

And soft foods that I would get an intense pain and backed up saliva. I also would feel a pain when I drank anything hot and then it Sounds like a clogged drain that the liquid finally passes through. At two months post op I had a swallow test and was told I had strictures. When the dr went in to stretch them out my stomach was twisted like a cork screw with five turns. The dr has straightened it out twice since and said she can do it one more time and then I have to look into a stent or bypass.

Has anyone had an experience like this?

Hi Rae,

I am a little over 3 months out and my experience with food has been very similar to yours early on. Most foods and thicker liquids not going down and vomiting back up with thick mucos-like saliva.

I did barium testing and an upper endoscopy. I have (thankfully) only one sharp angular bend in my stomach, but apparently it prevents foods from readily passing.

They dilated during my endoscopy and that helped with the vomiting very breifly, but it has returned.

What worked for your situation?

Twists are not super common and I haven't found much information. Additionally, my surgeon has ideas but has not experienced this before.

Thanks in advance!

[Prevanwarrior 29]

My surgeon says strictures can happen to anyone but they are mostly a concern for revision patients (lapband to sleeve) and a smaller bougie used during surgery.

This was one of my major concerns because a friend of mine had to have a revision to bypass because of a twist. They tried dilation 6 times before they tried the stent. And eventually there was just nothing that could help other than a revision.

I guess the point is she tried dilation 6 times and a stent before she gave in to bypass..

My opinion is keep trying that 3rd or fourth dilation may be the one that really helps.

Most of us pick sleeve because we really don't want a bypass.. this is why I don't think some surgeons should shrug off a stricture like it's an easy fix..because sometimes it's not and its' important for people to know.

Edited January 11, 2018 by Prevanwarrior

[Rae5148 28]

Hi Rae,
I am a little over 3 months out and my experience with food has been very similar to yours early on. Most foods and thicker liquids not going down and vomiting back up with thick mucos-like saliva.
I did barium testing and an upper endoscopy. I have (thankfully) only one sharp angular bend in my stomach, but apparently it prevents foods from readily passing.
They dilated during my endoscopy and that helped with the vomiting very breifly, but it has returned.

What worked for your situation?
Twists are not super common and I haven't found much information. Additionally, my surgeon has ideas but has not experienced this before.

Thanks in advance!

Please go to your dr immediately and tell him to figure out if you need to convert to a bypass. A kink in angular is a bigger deal than you think.

I ended up doing dilations 10 times and a stent before I finally had the courage to find a new dr. When I got my second and third opinion I was told if your sleeve doesn’t respond to dilations or stent after three months it needs to be converted.

I waited almost a year by time I left dr (10 months out) and 2 months for insurance to cover it. Exactly one year from original sleeve surgery went in and there was too much damage to fix it by bypass and I was told I needed a thoracic surgeon. It broke my heart waking up and not having the bypass done. I cried for days and accepted the fact I would have to live with out eating the rest of my life. My esophagus was completely damaged by acid reflux and i didn’t sleep and was so scared. Luckily a Surgeon was able to make me a tiny pouch bypass two months later without cutting up my entire esophagus. But I went under not knowing what the surgeon was going to do.

Stenting and dilation are dangerous and almost killed me and caused a lot of damage. Please tell your surgeon to fix it or find someone who will. This your life.

[Ready2Live! 17]

Thank you so much for your reply and I hope your friend is now doing well!

The more I read, the more it seems like narrowing due to scar tissue and narrowing due to kinking/twisting/angulation may need different treatment.

I am working on getting a second opinion and upper endoscopy but hoping to avoid bypass if possible. But ultimately will do whatever necessary.

Edited January 11, 2018 by Ready2Live!
Did not add quote

[Ready2Live! 17]

6 hours ago, Prevanwarrior said:

My surgeon says strictures can happen to anyone but they are mostly a concern for revision patients (lapband to sleeve) and a smaller bougie used during surgery.

This was one of my major concerns because a friend of mine had to have a revision to bypass because of a twist. They tried dilation 6 times before they tried the stent. And eventually there was just nothing that could help other than a revision.

I guess the point is she tried dilation 6 times and a stent before she gave in to bypass..

My opinion is keep trying that 3rd or fourth dilation may be the one that really helps.

Most of us pick sleeve because we really don't want a bypass.. this is why I don't think some surgeons should shrug off a stricture like it's an easy fix..because sometimes it's not and its' important for people to know.

Thank you so much for your reply and I hope your friend is now doing well!

The more I read, the more it seems like narrowing due to scar tissue and narrowing due to kinking/twisting/angulation may need different treatment.

I am working on getting a second opinion and upper endoscopy but hoping to avoid bypass if possible. But ultimately will do whatever necessary.

6 hours ago, Rae5148 said:

Please go to your dr immediately and tell him to figure out if you need to convert to a bypass. A kink in angular is a bigger deal than you think.

I ended up doing dilations 10 times and a stent before I finally had the courage to find a new dr. When I got my second and third opinion I was told if your sleeve doesn’t respond to dilations or stent after three months it needs to be converted.

I waited almost a year by time I left dr (10 months out) and 2 months for insurance to cover it. Exactly one year from original sleeve surgery went in and there was too much damage to fix it by bypass and I was told I needed a thoracic surgeon. It broke my heart waking up and not having the bypass done. I cried for days and accepted the fact I would have to live with out eating the rest of my life. My esophagus was completely damaged by acid reflux and i didn’t sleep and was so scared. Luckily a Surgeon was able to make me a tiny pouch bypass two months later without cutting up my entire esophagus. But I went under not knowing what the surgeon was going to do.

Stenting and dilation are dangerous and almost killed me and caused a lot of damage. Please tell your surgeon to fix it or find someone who will. This your life.

Thank you so much for your response!

I am so sorry you had to go through all of that but happy they ended up being able to covert you! I cannot imagine needing everything removed- I didn't even know that was a possibility.

I am just figuring out how serious this all is and am more then a little upset that my surgeon does not seem to be overly concerned.

I am working on getting a second endoscopy with a new doctor and a second opinion on a treatment plan.

I was thinking of trying dilation up to two more times because it did work, if ever so briefly. Then maybe a stint and options for surgical repair to straighten the angle. I am hoping this may be on the table due to my only having one bend.

If needed I will move to bypass. It is not my ideal choice but you helped me understand that I need to move quickly with treatment and assessing options before things become critical.

How are you doing these days?