PiRatFamily

I have been very angry over the last 3 years. Our lives will never be the same. For those of you that don't know me, I am NOT the one that had the gastric bypass. I am speaking for our family on behalf of my fiance. After much thought and research, my hunny's ultimate decision to have the weight loss surgery was for his daughter. Our story begins with his surgery in November 2010. He had complications from the beginning. We spent more than 3 weeks in the hospital that first month. RNY was laproscopic. He initially spent 3 days in the hospital and was released with 1 JP drain. Our first sign something was wrong after we came home from the hospital- watching yellow medicine he drank reappear in the JP drain 20 seconds later. We were scared to death as he was being readmitted to the hospital thru the ER. The surgeon that performed the initial surgery told us that there was nothing he could do initially. They made us wait a week because it would be like trying to repair "wet tissue paper." When the pain became severe and blood started appearing in the JP drain, they decided to do emergency exploratory surgery laproscopically. After a couple hours, his mother and I were beginning to get worried. A nurse came out to tell us that they had to cut him open, because they didn't see anything laproscopically. After about 6 hours total, the surgeon came out to the waiting area to tell us that he was fine. (The head surgeon of the group had also been present during that second surgery.) When we inquired about what they did, he said they didn't find anything and they didnt' fix anything. Cut open stem to stern for nothing. Wow. That was hard to swallow, but some part of that story, we just couldn't believe. He was fed intravenously after that and on several pain meds 24/7. The hardest part to swallow was thinking all of that was for nothing. No water to drink. It was painful to watch week after week. I stayed by his side at the hospital. In the end, he was finally discharged with 3 JP drains. We were happy to have him home. In the meantime, because he was in independent contractor, he lost his job. I'll try to make a long story short, because a lot has happened over the course of almost 3 years. We left the hospital thinking he was "magically" fixed since the JP drains didn't show anything further. The follow-up visits were interesting when we discovered he had an ulcer a couple months later. The medicines prescribed to help the ulcer didn't help, so the surgeon prescribed the strongest ulcer medicine, which didn't seem to help either. Then came the endoscopic procedures and we see the fistula (HOLE!) for the first time. What more could happen?! We couldn't foresee the disaster ahead. He tried going back to work with patches for pain. 2 years later, those patches have been a part of him 24/7. He worked for about 6 months before he just couldn't do it anymore. That was the hardest thing for him to swallow... not being able to provide for his family like he had always done. We refused to go back to the hospital where the first couple of procedures were initially done. We had an amazing case worker that kept us sane. She had found another surgeon that was supposed to be the best in his field. He arranged for my hunny to have a titanium clip added endoscopically to close the fistula. When we arrived, we didn't realize this was a new procedure with a new device, so there were a lot of people in the room observing. (Can you say guinea pig?) So we came home with the clip and thought everything would be ok. It seemed as if that may have solved the problem. Months later with pain, we go to see the renowned surgeon again. He draws on a piece of paper a procedure he wants to try because the small hole that food should be going thru to the intestine is scarred and closed from the ulcer. The surgery has no name. He basically planned on roto-rootering the new pouch. Maybe we were foolish to get our hopes up. After the laproscopic surgery, we get some bad news in the recovery room. This surgeon tells us that the clip has come lose and that was a good thing because it's the only way my hunny hasn't had to have emergency surgery. We also learn that from his perspective, the original laproscopic RNY was never completed. He explains that the tool that is used to make the smaller pouch cuts and staples at the same time. He tells us the fistula is from the first procedure being incomplete. After all this, we find out he wasn't able to help. He said he just removed scar tissue. He said that the surgery needed was going to involve something more than he could do laproscopically. Our hearts sank. The next several months involved speaking to other surgeons in our county, all of them passing on the surgery we thought would be our last hope. At this point, we can't find a surgeon or even a PCP for that matter. No one wants to touch him. Our case worker sends us to another county. We drive an hour-and-a-half for nothing. Everyone is afraid of malpractice. So here we sit. Trips to the emergency room for kidney stones, free air from a perforated ulcer, a surgical hernia the size of a softball... It's to the point now where it isn't even worth going to the ER for help, because they don't know how to help. No one does. Our medical disability was exhausted. We are awaiting our trial for social security disability because he was denied on our initial application and appeal. A judge has ruled that he isn't able to work, but I guess that isn't enough. This man I love is falling apart. Our family is falling apart. We don't know what tomorrow will bring. He thinks this surgery will be the death of him. He tries to hide his pain, both physical and emotional, from his little girl. Our "quality" of life has diminished. Even though he was morbidly overweight, we had a life. We would go to Disneyland, play in drum corps, ride our bikes, go out to eat or to the movies... Now, he is nauseous all the time. He hurts really bad. He runs to the bathroom. One day he can eat soup and the next day it makes him throw-up. No money. No solutions in sight. No more hope. Depressed.

I have been very angry over the last 3 years. Our lives will never be the same. For those of you that don't know me, I am NOT the one that had the gastric bypass. I am speaking for our family on behalf of my fiance. After much thought and research, my hunny's ultimate decision to have the weight loss surgery was for his daughter. Our story begins with his surgery in November 2010. He had complications from the beginning. We spent more than 3 weeks in the hospital that first month. RNY was laproscopic. He initially spent 3 days in the hospital and was released with 1 JP drain. Our first sign something was wrong after we came home from the hospital- watching yellow medicine he drank reappear in the JP drain 20 seconds later. We were scared to death as he was being readmitted to the hospital thru the ER. The surgeon that performed the initial surgery told us that there was nothing he could do initially. They made us wait a week because it would be like trying to repair "wet tissue paper." When the pain became severe and blood started appearing in the JP drain, they decided to do emergency exploratory surgery laproscopically. After a couple hours, his mother and I were beginning to get worried. A nurse came out to tell us that they had to cut him open, because they didn't see anything laproscopically. After about 6 hours total, the surgeon came out to the waiting area to tell us that he was fine. (The head surgeon of the group had also been present during that second surgery.) When we inquired about what they did, he said they didn't find anything and they didnt' fix anything. Cut open stem to stern for nothing. Wow. That was hard to swallow, but some part of that story, we just couldn't believe. He was fed intravenously after that and on several pain meds 24/7. The hardest part to swallow was thinking all of that was for nothing. No water to drink. It was painful to watch week after week. I stayed by his side at the hospital. In the end, he was finally discharged with 3 JP drains. We were happy to have him home. In the meantime, because he was in independent contractor, he lost his job. I'll try to make a long story short, because a lot has happened over the course of almost 3 years. We left the hospital thinking he was "magically" fixed since the JP drains didn't show anything further. The follow-up visits were interesting when we discovered he had an ulcer a couple months later. The medicines prescribed to help the ulcer didn't help, so the surgeon prescribed the strongest ulcer medicine, which didn't seem to help either. Then came the endoscopic procedures and we see the fistula (HOLE!) for the first time. What more could happen?! We couldn't foresee the disaster ahead. He tried going back to work with patches for pain. 2 years later, those patches have been a part of him 24/7. He worked for about 6 months before he just couldn't do it anymore. That was the hardest thing for him to swallow... not being able to provide for his family like he had always done. We refused to go back to the hospital where the first couple of procedures were initially done. We had an amazing case worker that kept us sane. She had found another surgeon that was supposed to be the best in his field. He arranged for my hunny to have a titanium clip added endoscopically to close the fistula. When we arrived, we didn't realize this was a new procedure with a new device, so there were a lot of people in the room observing. (Can you say guinea pig?) So we came home with the clip and thought everything would be ok. It seemed as if that may have solved the problem. Months later with pain, we go to see the renowned surgeon again. He draws on a piece of paper a procedure he wants to try because the small hole that food should be going thru to the intestine is scarred and closed from the ulcer. The surgery has no name. He basically planned on roto-rootering the new pouch. Maybe we were foolish to get our hopes up. After the laproscopic surgery, we get some bad news in the recovery room. This surgeon tells us that the clip has come lose and that was a good thing because it's the only way my hunny hasn't had to have emergency surgery. We also learn that from his perspective, the original laproscopic RNY was never completed. He explains that the tool that is used to make the smaller pouch cuts and staples at the same time. He tells us the fistula is from the first procedure being incomplete. After all this, we find out he wasn't able to help. He said he just removed scar tissue. He said that the surgery needed was going to involve something more than he could do laproscopically. Our hearts sank. The next several months involved speaking to other surgeons in our county, all of them passing on the surgery we thought would be our last hope. At this point, we can't find a surgeon or even a PCP for that matter. No one wants to touch him. Our case worker sends us to another county. We drive an hour-and-a-half for nothing. Everyone is afraid of malpractice. So here we sit. Trips to the emergency room for kidney stones, free air from a perforated ulcer, a surgical hernia the size of a softball... It's to the point now where it isn't even worth going to the ER for help, because they don't know how to help. No one does. Our medical disability was exhausted. We are awaiting our trial for social security disability because he was denied on our initial application and appeal. A judge has ruled that he isn't able to work, but I guess that isn't enough. This man I love is falling apart. Our family is falling apart. We don't know what tomorrow will bring. He thinks this surgery will be the death of him. He tries to hide his pain, both physical and emotional, from his little girl. Our "quality" of life has diminished. Even though he was morbidly overweight, we had a life. We would go to Disneyland, play in drum corps, ride our bikes, go out to eat or to the movies... Now, he is nauseous all the time. He hurts really bad. He runs to the bathroom. One day he can eat soup and the next day it makes him throw-up. No money. No solutions in sight. No more hope. Depressed.

I think it would be a good idea as well however, what you may not have read and I don't think I've made it clear is that he's actually been through 4 abdominal surgeries (3 of them full open and not laproscopic) and 5 endoscopic proceedures since November of 2010. After every one he's actually gotten worse and not better. He has an incisional hernia the size of a large grapefruit protruding from the middle of his stomach that they say they cannot fix as his weight has still not stabilized (he was a little over 400 lbs before the 1st surgery) and if they repair it before his weight stabilizes, if he lost even 20 more pounds it would just sag and re-open itself. He can't really exercize so his weight loss is extremely slow (3-4 lbs a month). He's terrified to do any more surgeries because of the fact that after each one, he's gotten worse and cannot bear to think about what worse might entail. He's sort of an emotional basket case now. Has night terrors and wakes up screaming. I don't think he really trusts anyone anymore because one of two things has happened every time he's seen a new surgeon 1: They talk a big game, ensure him that they are gonna be able to fix him up then they do their work up, the EGD's (which he has to do under general anesthesia because of his sleep apnea) and then after they see what they're REALLY dealing with, they just don't return calls or follow up or just outright tell him he was worse off than they thought he was and can't help him. And some simply look at his record and say "pass" immediately (One Dr. actually said this verbatim: "I don't know what they did to you but I've never seen anything like this) or 2: They do a surgery and he ends up hurting worse than he was prior to surgery. Maybe some time in the future but as I said, he's literally terrified at the notion of undergoing yet another surgery because he's so afraid of it getting worse. Once bitten, twice shy. He was a nurse before all this happened so he's actually hyper-aware of all the things that can go wrong in surgery and this only adds to his anxiety about undergoing yet another one. At this point we're just trying to keep comfortable as possible and also are trying to get more settled in our situation and finances. To add gasoline to the fire, during this whole ordeal he's been going through a nasty custody battle with his ex-wife over his little girl. It's a lot to deal with but as I said, I'm on here mainly to make sure that people out there who are considering this surgery are aware of the potential "dark side" of this proceedure that no one told us about before he made the decision to do this. It most DEFINITELY can be life changing to be sure but that can also be a negative....VERY negative life change and we certainly weren't ever made privy to that potential "down side" and would not want others to undertake this without having FULL disclosure...The good, the bad and in his case.....The ugly.

Army of me: Reversal isn't an option as there's no viable tissue left. It's all just one giant ball of scar tissue. Eventually they'll end up having to do a radical gastrectomy and take out everything above the small intestine and he'll end up with a J-tube. Unfortunately, this will not do much for the pain because of all the scar tissue that's built up and the damage to the liver from all the acid leakage. One doctor told him his liver (or about 1/3rd of it) looked like that of an alcoholic....All necrotic and nasty and green but that he knew it couldn't be alcoholism because it was only on the 1/3rd portion. He's putting that off as long as he can bear to because he is so upset about the notion of being thirsty and not being able to even take a drink of water. He tells anyone who asks him about the surgery to either lose the weight on your own or just enjoy being who you are now because he can guarantee that regardless of how miserable they might be overweight? It's NOTHING compared to what he goes through on a daily basis. Oldoneyoungagain: I sincerely hope it comes fast. We're constantly one paycheck away from being homeless and while SSDI is no lottery win by far it would at least make sure we're never on the street between what he'll get for that and what I make. The last thing: IDK how many of you have been through or know someone who's been through the provess to get SSDI but based on our experience? I don't understand how so many people are on it. You're treated from the get go like you're some sort of burgler who's trying to break into the USA's safe and they're doing everything they can to keep you out of it. Tony made between high 5 figures and low 6 figures when he was able to work. Would someone PLEASE tell me what sense it makes for him to try and "make out like a bandit" on less than 1/4th of what he was making while he worked? It just makes no rational sense but I'm telling you.....You're treated like you're trying to get away with something from the get go. Tony was a workaholic and loved his job. He would give anything to be able to go back to it. Again....Much thanks for all the well wishes. It's cathartic to have a place like this where you can just vent and no one judges and is so supportavie....

Well....We finally ended up at a hearing done by an administrative law judge for social security disability. He's only gotten worse. Hardly eats. Hurts all the time, is constantly depressed and I've caught him crying on several occasions. Anyhow, he went into the hearing for SSDI. They called the court to order, swore everyone in and then phoned some doctor in Ohio that was to testify for the SS people. The judge asked the doctor if he had read the medical records and if he had an opinion. He said about 3 sentences in "medical-eze" and then stated that "There's no doubt in my mind and no question that this person is 100% disabled and unable to work." The judge said he'd heard enough and thanked the doctor and hung up and then told us that he'd have our written decision in the mail within 2-4 weeks. Tony never was asked a thing nor was his attorney. I'm guessing this means that he's approved for SSDI? They even didn't haggle about the date of onset. I guess this is great from a financial standpoint but as for Tony? He always just says over and over that it's like living in a nightmare you can't wake up from. Thanks for all the support and well wishes here. I wish I had something positive to say about Tony's health but I guess you celebrate what you can.....

Research as much as possible (including complications your surgeon may not share with you) and hopefully that will help.

There's not money to do anything, much less travel to AZ. This ruined our lives. I am the sole-provider financially and that's praying I make enough to pay the rent, put food on the table and gas in the car. It seems like the only person on our side is the case worker (and ppl that listen on here).

We haven't tried to contact the Mayo clinic. We live one day at a time. His case manager is trying to set up something at UCLA.

We chose not to share the Dr.'s name or the hospital. I will say it was in Orange County, CA.

It's actually only 1 year in CA. We had no idea how bad it was going to be after only 1 year...

Thanks guys... another county, another specialist... guess we will see what he has to say.

Thanks for the support guys. Just don't know what we are going to do...

Reversion wasn't an option for us. I'm sure he would have done it. Everything was too scrambled inside to reverse anything. The problem is his problem went too long without properly being treated. The best advice I can give is to seek treatment as soon as you think something is wrong.

We're fighting complications too. My question is how long can my fiance continue when the pain progressively gets worse?! It feels hopeless when there's no solution. It has affected our family and day-to-day life. The worst part is seeing him suffer and knowing there is nothing I can do.

My fiance's PCP is an internal medicine doctor. He also has a pain management doctor. Every month he goes to pick up his prescriptions, the pharmacists treat him like a drug addict. It makes him feel horrible.

Sorry you were denied. We are in the same boat. We are awaiting the trial date. Don't give up!

Your complications are vastly different from my fiance's. However, we can totally relate. This surgery destroyed our lives. I have family that has been successful with RNY, but not completely without their own complications. It's nice to know we aren't alone. I want our old life back.

We do have a lawyer that will represent him at the SSDI trial. We are awaiting the trial date. It breaks my heart to see so many people that have had so many different complications and they never got resolved.

I'm so sorry. Wishing you the best. Hopefully, after the swelling goes down, they can actually see what is causing your severe pain. I hope our post didn't scare you. We've finally found a place to be given a voice. Don't give up.

The other problem with bring a legal suit is that the original surgeons strung him along and kept telling him everything would be fine and simply kept feeding him pain meds until the statute of limitations ran out to file a suit. Almost to the DAY they ran out, the original surgeons basically kicked him to the curb and refused to see him anymore. All the surgeons we've seen since then will start off pumping us full of hope and bragging about how they're the "best in the business" and then the invasive tests begin...(He can't have simple tests done because of his sleep apnea all his scopes have to be done under general anesthesia with a breathing tube in place and the whole 9 yards) After they take a look at how messed up he is inside they sorta just stop interacting with us and ignore us. The one surgeon who actually tried laproscopally had this to say: "I don't know what those guys did to you but I've never seen anything like this" Basically, what happened was this: The original surgeon didn't completely seperate the old stomach from the new pouch. Because of this, the old stomach kept dumping acid into the new surgical area essentially, burning it up and destroying the tissue to the point that it was so damaged, that it was irreparable. Of course, we found all this out long after the statute of limitations for malpractice ran out. If anyone reading this knows of a good malpractice attorney who would be interested in this we're all ears. It's not like he wants to be rich and would much rather be able to work again but it would certainly be nice to go a month or two not having to wonder if we'll be able to scrape enough money together to make rent....

We have consulted with several lawyers and no one will pursue because it was an elective surgery. We did a lot of research and thought we had one of the best group's in the nation performing the surgery. In the end, the surgeon responsible for the first and second surgery no longer works at the practice or the hospital where it was originally performed. Maybe due in part to other issues? Anyways, we were advised for the longest time not to say anything to anyone until we knew what the ultimate outcome would be. After several years of keeping quiet, I want to tell everyone what happened and to think long and hard about possible complications that weren't even discussed with us.