hello! already sleeved and having complications, thinking about DS...

[flower]

Hello every one! I'm here to learn as much as I can about DS. I know enough about the surgery itself, but it seems difficult to find info about what post op life is really like.

My background - I was sleeved in May 2013. My highest weight was 460 (I'm 5'11"), and I was down to 405 at surgery, had my sleeve and lost an additional 100. My lowest weight was 305, and for someone who has always been heavy, this was okay with me. I felt better than I had in my whole life and was on the right path to continue losing... that is, until I got pregnant in September 2014 (oops).

My pregnancy wasn't intentional, I had no children up to this point and was 34 years old. I honestly thought I would never have kids. My son is the best thing to happen to me!! However, ever since late state pregnancy, I have felt "off". I gained almost 40lbs until August 2016 when I decided to get strict about my diet and get back on track. All was going great until...

I got deathly sick. January 2017, out of nowhere one night, I could not breathe. The right side of my chest was pounding. I went to the ER and was tested for a PE, but what I had was a massive amount of fluid that had accumulated in my right lung. I told the nurse that I had been experiencing a lot of reflux, something I didn't have at all post up until I became pregnant. Upon investigation (multiple CTs, chest xrays, upper GI, esophogram), this is what they found out:

I had a severe form of pneumonia caused by fluid aspirating from my esophagus. My stomach/sleeve had stretched, almost to the size of a regular stomach and my esophagus is enlarged at the base where it connects to the stomach. I have been unknowingly aspirating into my lungs for a very long time, which is scary because until the night that I couldn't breathe, I had NO symptoms of this.

I had to have a thorocotomy - which if you don't know what that is, it's PAINFUL - akin to open heart surgery - where they go in through your ribcage and scrape out fluid from your lungs. Before that, I had a bedside aspiration of my lung where they removed 2 liters of green fluid off my lungs and that still wasn't enough. To make it worse, after my surgery, my body reacted badly - I had sepsis in my blood, my kidneys shut down and I had to have dialysis, I was in ICU for almost a week and on a feeding tube, it was a mess... I was in the hospital for 2 weeks before they RELUCTANTLY let me go home and put me on home health care and lots of follow up to make sure my body was recovering.

Fast forward to now and I'm feeling better, except that I can't keep food down well. I think I've developed a protein intolerance, though I didn't really know that was something that could happen, but now that I have discovered it, I realize that might be the case. I'm putting on a little weight because all I can eat comfortably are carbs, it seems... and even then it's not a guarantee that it will stay down. Eating has been miserable, but otherwise, I'm doing a lot better than I was just a few short months ago.

I've been referred to a big hospital in Chicago for consultation with a swallowing specialist as well as a bariatric surgeon. Unfortunately, the soonest they could schedule that visit was April 20th... so I'm a bit fearful every day that I'm continuing to aspirate and am unaware of it. The GI I saw in the hospital advised me that I would absolutely need some surgery to my esophagus and that I should see about getting my sleeve redone at the same time. Considering I never made it to goal weight and I'm back up to around 340 currently, I'm considering talking to the surgeon about converting to DS. But I need more info!

If you read this long post, THANK YOU! Please, link me to any info that would be helpful in educating myself. I appreciate any feedback or stories of your experiences!

 

[Eztli]

I'm sorry you are having such trouble with reflux. As someone who is revising to do D.S but has reflux, I can tell you that you are going to have to fight for it. What I mean is that there seems to be a conveyer belt of people who get the sleeve, get severe reflux and then are immediately revised to RNY. I have been told by many many people (including several D.S surgeons) that the only way to completely cure my reflux would be an RNY. Because this revision would be considered medically necessary, the total cost would be covered by my insurance company, and I wouldn't even have to go through the entirely hellish obstacle course required to get approval for bariatric surgery.
I know that if I can out-eat a sleeve, I can out eat the RNY, easily, and I would be just as fat in a few years time as I am now. I think that with someone with your current BMI, and your previous BMI, that you really need the D.S.
Obviously my opinion doesn't matter, and you will need to be able to articulate this for yourself. Also, sleeve to D.S is a (fairly) standard surgery. Re-sleeving is a more complex operation, that usually necessitates open surgery. You will need an experienced D.S surgeon for this. What I can tell you is that if your stomach has stretched that significantly since your original sleeve, then you may have enough stomach tissue to do some sort of fundoplication. The most common fundoclipation is the nissen fundoplication, as a sleever, even one who who stretched so much, it is highly unlikely that you have enough of a funds left to do this, but there are many varieties of plications that are not 360 degree wraps around the stomach. You will need to find a surgeon who is willing to re-sleeve you in some sort of way that either cures or significantly mitigates your reflux, these are in much shorter supply than a lot of doctors who even do the D.S in the first place. I would make consultations (even if they are only by phone) with some other well known D.S surgeons as well as the specialists you are going to see in Chicago. I had to really fight for my D.S so prepare to do the same yourself. I thought I had bad reflux until I read what you've been through. I know it may be difficult to get the D.S but we are all here for you, and I really wish you the best as you proceed.

 

[Charris]

if you can consult with Rankin or Keshishian. They will tell you what's truly best for you instead of what's best for their pockets. Like the other poster said with reflux others will try to just get you to do RNY. They are in California but people from different countries and continents travel to see them because they are just that good. With the problems you are having I would only want on of the best. I also think that there is a doctor in the south thar is vetted if that's closer. I don't remember seeing where you are located. Good luck

 

[flower]

I am located in Chicago. I'm going to Loyola for the consult. I was looking at the info of the docs I am seeing on their page and the bariatric doc does do DS, so that was reassuring. I had my original sleeve at Rush University and that doc doesn't do DS at all, only sleeve and lap band. If you want RNY you have so see a different doc in the practice, and that one doesn't do DS either.

I should mention that my reflux is more of a silent reflux. It isn't often that I have heartburn or discomfort. But the reflux is happening, according to the GI that I saw when I was hospitalized. They have me on Protonix and Reglan to assist in digestion, but neither is really doing anything. I'm still having issues with swallowing and keeping some things down. And since the hospitalization (and medication use) I'm having more symptomatic reflux with heartburn and having to take tums.

I'm really nervous about all of this and hoping for the very best. Because I don't know that I will have the patience to fight for a DS or even a revision of some kind for my sleeve. More than anything, I need to be able to swallow and eat normally. I was doing great on a keto diet and the weight was coming off, but now I can't keep protein down very easily and, oddly, vegetables either raw or cooked are tough to digest as well. I'm so tired of being uncomfortable when I eat and not knowing from one day to the next what is going to work for me.

 

[Spiky Bugger]

I am located in Chicago. I'm going to Loyola for the consult. I was looking at the info of the docs I am seeing on their page and the bariatric doc does do DS, so that was reassuring. I had my original sleeve at Rush University and that doc doesn't do DS at all, only sleeve and lap band. If you want RNY you have so see a different doc in the practice, and that one doesn't do DS either.

I should mention that my reflux is more of a silent reflux. It isn't often that I have heartburn or discomfort. But the reflux is happening, according to the GI that I saw when I was hospitalized. They have me on Protonix and Reglan to assist in digestion, but neither is really doing anything. I'm still having issues with swallowing and keeping some things down. And since the hospitalization (and medication use) I'm having more symptomatic reflux with heartburn and having to take tums.

I'm really nervous about all of this and hoping for the very best. Because I don't know that I will have the patience to fight for a DS or even a revision of some kind for my sleeve. More than anything, I need to be able to swallow and eat normally. I was doing great on a keto diet and the weight was coming off, but now I can't keep protein down very easily and, oddly, vegetables either raw or cooked are tough to digest as well. I'm so tired of being uncomfortable when I eat and not knowing from one day to the next what is going to work for me.

You are a bit of a mess, poor thing. And most of what you are dealing with is way above my pay grade. Just wanna mention tbat when I had difficulty swallowing, my PCP asked if I was taking my PPI (Prevacid Solutabs) and that's when I realized I had gotten sloppy about taking those, probably because my reflux wasn't bothering me. Back on the PPIs, the swallowing issue went away.

Right now, I may need to take a stupid breath test for SIBO (small intestine bacterial overgrowth), but I have to be off PPIs for 14 days...and guess what! I'm starting to have trouble swallowing.

Give the PPIs a chance to work. If Protonix doesn't work, try a different drug. I use the Solutabs because I feel like their absorbing in the mouth means less gets lost via malabsorption. But different strokes...

 

[Charris]

To me the sleeve is. just a big jumpstart to being on a diet the rest of your life. A lot of Dr. do bait and no switch. They say they do DS but wont or cant. You want the best then you have to put you adult panties on and act like one! You don't have the patience to get what you need medically? Well if you get an inferior resolution will you have the patience to die or have to recover from a 3rd surgery. I had terrible reflux after surgery. So bad at night I would projectile vomit to the point of vomit coming from my nose. I started Protonix 2 times a day and Prevacid once a day. I was prescribed Reglan also but didn't take it very long because of the side affects it had on another DS patient. A resleeve from what I hear from the experts on the site can be very dangerous especially if it's not done by a Dr with a ton of expertise under their belt. You truly think you are allergic to protein? That would be hard with WLS. Is there any type of testing that doctors can do to confirm or negate that theory? Maybe it is too dense for your sleeve. Have you tried protein drinks and vegetable proteins, peanut butter, cheeses, tofu, or soy? I know we used to have a vegetarian on one of these sites. So there has to be a way around eating the meats if that's the problem. Good luck with that one. lol

Since you have the sleeve already the natural progression with the surgeries would be get the switch part for a DS. Having said that according to the guidelines you got pregnant way too soon After WLS. It probably wasn't as bad as it could have been because you were only sleeved. If you get the DS and get pregnant too soon it could have terrible results for the fetus. It actually could kill the fetus and YOU! That's why they make us agree not to Get pregnant before 2 years and we will use 2 forms of birth control. Dr. Keshishian said people who couldn't get pregnant for anything look at the opposite sex and get pregnant. So I would suggest that if you want more kids have them before getting surgery so you don't regain like you did or plan on not having any for years or until you have lost what you want and have the ability and will power to maintain. Good luck I hope the decision that is best for you becomes crystal clear.

 

[flower]

To me the sleeve is. just a big jumpstart to being on a diet the rest of your life. A lot of Dr. do bait and no switch. They say they do DS but wont or cant. You want the best then you have to put you adult panties on and act like one! You don't have the patience to get what you need medically? Well if you get an inferior resolution will you have the patience to die or have to recover from a 3rd surgery. I had terrible reflux after surgery. So bad at night I would projectile vomit to the point of vomit coming from my nose. I started Protonix 2 times a day and Prevacid once a day. I was prescribed Reglan also but didn't take it very long because of the side affects it had on another DS patient. A resleeve from what I hear from the experts on the site can be very dangerous especially if it's not done by a Dr with a ton of expertise under their belt. You truly think you are allergic to protein? That would be hard with WLS. Is there any type of testing that doctors can do to confirm or negate that theory? Maybe it is too dense for your sleeve. Have you tried protein drinks and vegetable proteins, peanut butter, cheeses, tofu, or soy? I know we used to have a vegetarian on one of these sites. So there has to be a way around eating the meats if that's the problem. Good luck with that one. lol

Since you have the sleeve already the natural progression with the surgeries would be get the switch part for a DS. Having said that according to the guidelines you got pregnant way too soon After WLS. It probably wasn't as bad as it could have been because you were only sleeved. If you get the DS and get pregnant too soon it could have terrible results for the fetus. It actually could kill the fetus and YOU! That's why they make us agree not to Get pregnant before 2 years and we will use 2 forms of birth control. Dr. Keshishian said people who couldn't get pregnant for anything look at the opposite sex and get pregnant. So I would suggest that if you want more kids have them before getting surgery so you don't regain like you did or plan on not having any for years or until you have lost what you want and have the ability and will power to maintain. Good luck I hope the decision that is best for you becomes crystal clear.

Well, I haven't consulted with these docs yet to know what my options are for surgery. I don't know if re-sleeving is an option, if my original sleeve was botched somehow, or if they would be good with DS at this point. Additionally, I don't even know if my insurance would cover it or if I would have to go through a bunch of hoops despite having already qualified for WLS the first time around.

Like I said, my reason for needing treatment is to be able to swallow food normally. I DON'T know that I'm allergic to protein, but I have noticed that eating it is something that makes me feel very uncomfortable and will usually result in me vomiting. This may not be a dietary allergy but related to the dilated part of my esophagus - because the food coming up is just that - food - not gastric juices or smelling of vomit. It is literally what I just chewed up and swallowed.

My patience is limited because I will have already waited 3 months just for an initial consult from the time I was discharged from the hospital. I nearly died from this issue of aspirating into my lungs. Everyday I wonder if I am continuing to aspirate and cause damage to my lungs. I need to get my esophagus fixed and figure out what caused it to have issues in the first place. If they can fix this quickly but getting DS will take time, I would rather get my esophagus fixed to the point that I'm able to eat what I want so I can diet and attempt to get back on the road to losing weight. I know what I need to do to lose weight. Right now, I can't do it. I can't drink protein shakes, they make me vomit. I can't eat most meats, veggies or cheese, it makes me vomit. I can't even drink cold water without a problem. I need to get that sorted out and know if this happened because of my sleeve or independent of it. If they can treat the swallowing issue effectively without recutting my stomach, I am all for that. But if the choice is between trying to re-sleeve or DS, then I would prefer to do DS and lose most of my extra weight this time around.

I didn't get pregnant intentionally. That said, me and baby were healthy throughout and my son is thriving. I have no intentions of having more children, I have an IUD. I'm also getting a little long in the tooth to start over with a newborn, lol.

I also hope that the choice becomes clear once I can see these specialists and get some testing done!

 

[Larra]

I can't say what the best solution for you is. None of us can. Your situation is complex and unusual, at least to the degree that you are struggling with reflux following a sleeve and became so seriously ill.
The only thing I can suggest is to contact Dr. Keshishian and/or Dr. Rabkin via email. They both have extensive experience with people with early and late complications from various bariatric surgeries. They can look over the tests you've had done (I'm assuming you've had stuff like upper endoscopy and upper GI x-rays done) and hopefully sort out what the problem is that is causing the reflux and determine the best solution.
Difficulty swallowing can definitely be a symptom of reflux, so if the reflux can be relieved, this may improve. I'm saying may rather than will because I don't know what damage has or hasn't been done to your esophagus, and whether or not fixing the reflux will let the esophagus return to normal.

 

[southernlady]

Welcome @flower
You have had a hard time of it.

 

[aaa]

@flower Hello. Glad you made it over.

 

[Clematis]

I have silent reflux, was put on PPI shortly before DS and have puked protein ever since. (With a PPI vomit doesn't smell.) I think protein needs a certain amount of acid to digest. I halved the dose of PPI and have done better. Also some PPIs work better for some people than others. Experiment with the brands/types. Good luck.

 

[Munchkin]

If I was in your shoes, I would probably try to get all these existing issues under control and back to normal before I added another issue to the mix. But that's me! I wish you luck and welcome!

 

[Butterfly]

I am so sorry you're dealing with all of this. I hope the doctors can give you some options you're happy with.

 

[flower]

Update:
I went for my consult and finally got some answers.
First of all, the GI I saw when I was in the hospital in January gave me some wrong info. According to the bariatric doc I saw yesterday, my sleeve is perfectly fine. It has not stretched.
The issue is my esophagus is dilated to about twice it's normal size. There is a stricture between my lower esophagus and my stomach. I have been scheduled for a motility test to figure out the best way to treat from here.
The surgeon said the simplest way to attempt to correct it would be balloon dilation, but that may not be a long term solution. He suspects surgery will be needed and that he thinks we should convert my sleeve to a modified gastric bypass. I asked him about DS and he said that wouldn't be an option because he needs to operate on my upper stomach area which is why it would end up more like a bypass.
I'm really not sure how to proceed, I'm still nervous and anxious and would like to come up with appropriate follow up questions for after this test is done.
Thanks to everyone who has been supportive thus far!

 

[Larra]

I would still recommend a second opinion from a DS surgeon who is experienced in sorting out and fixing complications from prior bariatric surgeries. Even if the opinion is the same, it would give you more confidence in the care you are getting.