SleevedK

Hello,
I am new to this forum but I really need to warn others. I am 5 years post op from the sleeve surgery and am MISERABLE! I have also had 4 more surgeries to fix a hiatal hernia at the esophagus and stomach as well as pouches that were formed by the surgery. I have not been able to eat normally since the surgery and by normally I mean the way you are suppose to after VSG. I haven't been able to drink Water without pain. My SW was 245 and now I am at 184 and losing since my most recent surgery. The recent surgery was to fix the hiatal hernia again. I was told it was a "new" way of fixing the hernia, nothing more was told to me. My pancreas was also removed at the same time. My surgery was called a Nissen Fundoplication, its pretty complicated. They use of the stomach to be wrapped around the esophagus so it won't go up into that area again. From the beginning I have had GERD very bad, it was so bad I was on 2 different medications as well as over the counter antacids so that is why the Nissen Fundoplication. It has been horrible this 5 year journey. I am getting all of my records together for a second opinion and to possibly have a revision to the RNY.
This surgery was the biggest regret of my life. My life has suffered more and my relationship has also been hurt by this. I am always so tired and sick, and my husband is worried about losing me.
I have also been just left to flounder. I have had numerous swallow tests and load of medications but NOTHING allows me to drink a nice glass of water, albeit a sip at a time, without pain.
So in one word "YES" i regret everything about this surgery.
Heather

1. Did you feel the same way? Yes, I was not totally sure about getting the sleeve, but I ignored my doubts and went through with it anyway.
 2. Are you glad you did it? No. I do regret it.
3. Do you have any regrets? Yes. I now have a hiatal hernia and GERD that affect my quality of life. The hiatal hernia came AFTER the sleeve - I didn't have one beforehand.
I didn't realize at the time that I had the sleeve that the shape of the sleeved stomach makes it prone to herniate, that if it does herniate that it can cause very significant symptoms even if it is a "small" hernia, and that permanently fixing a hiatal hernia after the gastric sleeve is not easy (hence many surgeons will tell you to just convert to a gastric bypass if you get a hernia after the sleeve).
 4. What’s one thing you wish someone had told you before you had surgery? I wish that someone had simply explained to me the problems that hiatal hernias can cause, that the gastric sleeve makes it much harder to surgically fix a hiatal hernia than it is if you still have your normal stomach, and that your quality of life can be ruined if you are one of the unlucky ones who has a lot of symptoms from it.
I wish someone had told me that there was a real risk that I might end up being forced into converting to a gastric bypass because the sleeve caused problems.

I know that pre-op people don't love hearing about regrets or the problems, but the truth is that I was better off before the surgery. Sure, I was fatter, but I was pretty healthy in spite of that and my weight was not affecting my quality of life.
I desperately wish I could go back in time and tell my surgeon not to do it. The surgery works for a lot of people, but some people are worse off after it. If you aren't SURE you want the surgery, and especially if you are not willing to accept the risk that you might end up with health issues that force you to convert to a gastric bypass later, then I would advise not rushing into it. Wait until you are sure.

1. Did you feel the same way? Yes, I was not totally sure about getting the sleeve, but I ignored my doubts and went through with it anyway.
 2. Are you glad you did it? No. I do regret it.
3. Do you have any regrets? Yes. I now have a hiatal hernia and GERD that affect my quality of life. The hiatal hernia came AFTER the sleeve - I didn't have one beforehand.
I didn't realize at the time that I had the sleeve that the shape of the sleeved stomach makes it prone to herniate, that if it does herniate that it can cause very significant symptoms even if it is a "small" hernia, and that permanently fixing a hiatal hernia after the gastric sleeve is not easy (hence many surgeons will tell you to just convert to a gastric bypass if you get a hernia after the sleeve).
 4. What’s one thing you wish someone had told you before you had surgery? I wish that someone had simply explained to me the problems that hiatal hernias can cause, that the gastric sleeve makes it much harder to surgically fix a hiatal hernia than it is if you still have your normal stomach, and that your quality of life can be ruined if you are one of the unlucky ones who has a lot of symptoms from it.
I wish someone had told me that there was a real risk that I might end up being forced into converting to a gastric bypass because the sleeve caused problems.

I know that pre-op people don't love hearing about regrets or the problems, but the truth is that I was better off before the surgery. Sure, I was fatter, but I was pretty healthy in spite of that and my weight was not affecting my quality of life.
I desperately wish I could go back in time and tell my surgeon not to do it. The surgery works for a lot of people, but some people are worse off after it. If you aren't SURE you want the surgery, and especially if you are not willing to accept the risk that you might end up with health issues that force you to convert to a gastric bypass later, then I would advise not rushing into it. Wait until you are sure.

Yep, I have GERD and a hiatal hernia. I am still trying to weigh the options on how to deal with it. Knowing what I know now, I wish I had never had bariatric surgery at all - in MY case, I think I would have been happier and healthier without surgery, because my weight wasn't causing me any health issues yet and I just gave myself new problems with the surgery. If I was in fact dealing with health issues from the weight, now I feel like I might have been better off just doing the gastric bypass from the start.

Do you know if you are a candidate for Linx, JRL? That is an option for fixing the hernia and LES, *if* you have enough esophagus motility for it.
I would definitely talk to a surgeon who does Linx before I would agree to a bypass.

It is hard for me to accept the idea of being forced into a bypass when I really regret ever getting bariatric surgery to begin with. I feel like I am worse off this way than I would have been with my original stomach and the extra weight.

1. Did you feel the same way? Yes, I was not totally sure about getting the sleeve, but I ignored my doubts and went through with it anyway.
 2. Are you glad you did it? No. I do regret it.
3. Do you have any regrets? Yes. I now have a hiatal hernia and GERD that affect my quality of life. The hiatal hernia came AFTER the sleeve - I didn't have one beforehand.
I didn't realize at the time that I had the sleeve that the shape of the sleeved stomach makes it prone to herniate, that if it does herniate that it can cause very significant symptoms even if it is a "small" hernia, and that permanently fixing a hiatal hernia after the gastric sleeve is not easy (hence many surgeons will tell you to just convert to a gastric bypass if you get a hernia after the sleeve).
 4. What’s one thing you wish someone had told you before you had surgery? I wish that someone had simply explained to me the problems that hiatal hernias can cause, that the gastric sleeve makes it much harder to surgically fix a hiatal hernia than it is if you still have your normal stomach, and that your quality of life can be ruined if you are one of the unlucky ones who has a lot of symptoms from it.
I wish someone had told me that there was a real risk that I might end up being forced into converting to a gastric bypass because the sleeve caused problems.

I know that pre-op people don't love hearing about regrets or the problems, but the truth is that I was better off before the surgery. Sure, I was fatter, but I was pretty healthy in spite of that and my weight was not affecting my quality of life.
I desperately wish I could go back in time and tell my surgeon not to do it. The surgery works for a lot of people, but some people are worse off after it. If you aren't SURE you want the surgery, and especially if you are not willing to accept the risk that you might end up with health issues that force you to convert to a gastric bypass later, then I would advise not rushing into it. Wait until you are sure.

Yep, I have GERD and a hiatal hernia. I am still trying to weigh the options on how to deal with it. Knowing what I know now, I wish I had never had bariatric surgery at all - in MY case, I think I would have been happier and healthier without surgery, because my weight wasn't causing me any health issues yet and I just gave myself new problems with the surgery. If I was in fact dealing with health issues from the weight, now I feel like I might have been better off just doing the gastric bypass from the start.

1. Did you feel the same way? Yes, I was not totally sure about getting the sleeve, but I ignored my doubts and went through with it anyway.
 2. Are you glad you did it? No. I do regret it.
3. Do you have any regrets? Yes. I now have a hiatal hernia and GERD that affect my quality of life. The hiatal hernia came AFTER the sleeve - I didn't have one beforehand.
I didn't realize at the time that I had the sleeve that the shape of the sleeved stomach makes it prone to herniate, that if it does herniate that it can cause very significant symptoms even if it is a "small" hernia, and that permanently fixing a hiatal hernia after the gastric sleeve is not easy (hence many surgeons will tell you to just convert to a gastric bypass if you get a hernia after the sleeve).
 4. What’s one thing you wish someone had told you before you had surgery? I wish that someone had simply explained to me the problems that hiatal hernias can cause, that the gastric sleeve makes it much harder to surgically fix a hiatal hernia than it is if you still have your normal stomach, and that your quality of life can be ruined if you are one of the unlucky ones who has a lot of symptoms from it.
I wish someone had told me that there was a real risk that I might end up being forced into converting to a gastric bypass because the sleeve caused problems.

I know that pre-op people don't love hearing about regrets or the problems, but the truth is that I was better off before the surgery. Sure, I was fatter, but I was pretty healthy in spite of that and my weight was not affecting my quality of life.
I desperately wish I could go back in time and tell my surgeon not to do it. The surgery works for a lot of people, but some people are worse off after it. If you aren't SURE you want the surgery, and especially if you are not willing to accept the risk that you might end up with health issues that force you to convert to a gastric bypass later, then I would advise not rushing into it. Wait until you are sure.

How did your appointments go?

I had a scope, showed HH (recurrent, as it was apparently fixed during my sleeve) and a "patulous LES" (wide open lower esophageal sphincter), so I guess that explains my regurgitation.
I see my WLS surgeon again for follow-up next Thursday. I am pretty sure he's going to try to strong-arm me into converting to RNY.

I am so glad that you mentioned that Dr. Jossart is experienced in dealing with this issue. I will need to look into that. Did you have to make an appointment with his office staff to talk to him?
I am sorry that you are suffering with these issues too, but I am also glad that you are here and talking about what you have learned. It is so nice to hear from someone else who is interested in this topic and taking action to try to figure it out. This is such a difficult problem because it seems like there aren't a ton of people who have dealt with it so you feel kind of alone struggling to find help with a complicated problem that even many doctors don't seem to understand very well. To be honest, I desperately wish that I had never had the sleeve, because I didn't understand at the time what trouble it could lead to, and I NEVER wanted a bypass under any circumstance. I wish I had made it more clear to my doctor at the time that I did not consider the bypass an option and maybe then she would not have done the sleeve.

Here are a couple of other leads that I have found that you might want to check into:

Dr. Kenneth J. Chang at UC Irvine is doing research into an experimental method of controlling GERD with an endoscopic procedure that can be done post-sleeve.
https://www.ucihealth.org/find-a-doctor/c/kenneth-chang
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6133678/

Dr. Olaya I Brewer Gutierrez at Johns Hopkins is apparently close to starting a clinical trial using a similar endoscopic procedure:
https://clinicaltrials.gov/ct2/show/NCT04771247

Me too! I've also spoken with Dr. Jossart in California who has done many hiatal hernia (HH) repairs post sleeve for those with GERD. This sounds perfect for you. He said he's done 125+ repairs with a 90% success rate. Only 1 of these patients out of over 125 needed a conversion to bypass.
As someone with no energy, horrible anemia (iron infusions) and low final weight - the bypass conversion sounds like a disaster waiting to happen, so I'm praying for a HH to show up on my latest swallow test. I've had several scopes over the years, and they can never find a HH, but according to Dr. Jossart that isn't uncommon, and he feels there is a very high likelihood that it's small and the doctor's I've seen are missing it. This gives me hope - that's why I wanted to share it. Hope is everything.
I also feel I should share that new research on PPI's show that they are now linked to depression (PPI's rank #1 as OTC drug that causes depression) and eye problems (including blindness). This is new research coming out to add to the list of problems it causes. We all need to get off PPI's!
Lastly, a few surgeons are now doing the sleeve with HH repair first, and with other GERD preventative measures DURING surgery. These doctors "get it", and are being proactive because they've seen the pain that GERD causes. I would suggest that ALL sleeve pre op patients have this discussion with their surgeon before moving forward, if he downplays it, RUN. If you are in the 30% that suffer, it's severely lowers your quality of life. I've been suffering for 14 years with too many dead end Dr. Appointments to count. Stanford, UofM - I've consulted with the best "experts" over the years and found found many shake their heads with a sort of "you're on your own" attitude.
I truly believe that the only hope we have is with a bariatric surgeon who really understands what was done and who has done the surgery - but also does GERD repairs. These doctors are rare and you need to really hunt for them.
When most hear "acid reflux" as a potential side effect, they think "so what, I'll have to take a tums once in a while". It's NOT that sort of reflux. It's debilitating. It's vomiting after half a cup of Water. It's pain after every single meal. It's instant dependency of horrific drugs with a myriad of side effects - including blindness and cancer. If my doctor had told me I had a 30% chance of this version of GERD, I would have run for the hills.
If your doctor does the whole "very rare", etc. (my doctor did), he's either: not reading recent studies, not listening to his patients, not following up on them (my doctor just pawned me off to a GERD doctor), minimizing this horrific side effect, or all of the above. Don't settle of a doctor who acts like it's super rare or no big deal. Find one that is proactive and discusses HOW they avoid it.
Please share with me all your research. I'm rooting for you!

Hi Sleeved K,

I am seeing Dr.Hawasli who wrote the article on the 15th of April 2021. It seems old - so it'll be interesting to see what he says. I'll let you know.https://www.sciencedirect.com/science/article/abs/pii/S000296102030814X#!

My situation is a little different (GERD and hiatal hernia, but sleeve seems okay) but here is what I would suggest based on what I have learned trying to understand my problems.
It might be worth getting a second opinion from a surgeon in a different practice who is willing to look at your upper GI imaging and tell you if they think the sleeve looks properly shaped or not. I have been reading this doctor's webpage where he talks about how, in some cases, a misshapen gastric sleeve can aggravate GERD: https://houstonsleevesurgeon.com/category/acid-reflux-and-heartburn/

If you are having significant GERD, you should probably get on meds for that and see if that is enough to control it. When I was reading about this, I did see one study that talked about how, for some post-sleeve patients, the GERD gets better after about 3 years or so because your stomach becomes more "compliant' by that point (and then there is not as much pressure in the sleeve to push the acid up), so if the GERD is controllable with meds, you could try waiting it out and see if it gets better. If it doesn't get better, or if it is not responding to the meds. then you have to decide if you want to get an RNY, or if you want to try the Linx, or possibly ask your doctor about this new procedure I recently learned that some doctors are trying for those of us with sleeves who are having GERD: https://www.sciencedirect.com/science/article/abs/pii/S000296102030814X