The UPs, Downs and Truths of my Sleeve Surgery

[ksosne]

I chose the Sleeve because the Lapband gives 0 support for it's own device...a device planted inside your body! Other weight loss surgeries were too extreme for me and I'm super sensitive. Unfortunately my insurance would not cover it and it was a long winding and difficult road to get my surgery, but I never gave up because had I not had the surgery, I very likely would not be here. I was nearly 300 lbs with out of control diabetes and showing signs of kidney damage, as well as in constant pain and really couldn't do much of anything. March 18th, 2013 I finally had it done. It was not fun and not a very pleasant memory, but not so bad that I regretted doing it. You'll hear plenty of stories about the actual experience, but I want to share the reality of after in the hopes it will help you make an informed decision. (BTW, they do not provide anything other than strong NSAIDS for pain relief after the surgery so you may want to bring some stronger medication of your own. You really won't have a chance to stop by any of the pharmacies there and get your own before surgery time.)

I was 290 before I had it done. But 270 on the day of surgery due to the liquid diet beforehand. No matter what you do...stick to that pre-surgery liquid diet! There were girls that did not and were extremely sick after their surgeries. I stuck to it and did not get the least bit sick. It does make a huge difference!!!

4 years later I am 160. My weight loss has been extremely slow. I got very discouraged as I watched so many others losing weight so quickly. 25 lbs a year is not much! But when I look at it now, 25 lbs a year is a lot better than 0 and once that weight came off, it stayed off. There have not been ups and downs as I have seen with others who have lost quickly. I would lose a few...stall...lose a few more..stall. I abandoned these boards because I couldn't bear to see everyone else's successes. I'm still overweight, but not nearly like I was before. I don't know that I'll ever be the weight I desire to be because I have so many other health problems now. For awhile after losing a good bit of weight, I felt great! I even started exercising and enjoying it which was something I never thought would ever be possible! But I had an unfortunate string of events starting with an ankle avulsion fracture, needing a hysterectomy due to my cycle returning and extreme bleeding, falling off a counter, getting rear-ended, falling off a ladder, the rupture of a hemorrhagic ovarian cyst, a Celiac diagnosis, neovascularization of one of my eyes (my vision is like that of a cataract in that eye)...oh the list goes on. One of the realities I have to face is that having the sleeve increases your risk of developing Celiac. I highly recommend being tested for Celiac and/or finding out if you carry the gene for it before getting this done and asking yourself if you can handle life if you do become Celiac. It's not just about not being able to eat gluten, it affects your social life in a way you can't even imagine until you live with it. The biggest thing you have to consider is that in addition to the food your sleeved stomach won't be able to tolerate, there is now anything and everything gluten that you have to add to that list and it leaves you a very small list of food you can eat! It is extremely frustrating to come so far and then have this slapped on you too. Think some pretty severe depression. I don't want to say this to you to discourage you from getting it done or scare you, but I want you to be aware and really think about it. Most won't because once you decide you want it done you'll talk yourself out of ever being that one. The one with problems. Yours will be fine and all your dreams will come true. And for some that is the truth. But please be prepared for what happens if you aren't in that lucky group. I struggle every day with not wanting to live because so much has been taken away from me. Not only did I NOT lose all the weight I wanted, but I'm still not well! I live in my room, in bed most of the time because of all I've been though with my back and tail bone pain. It's going to sound funny, but I think my butt was so used to being cushioned from all the fat that my tailbone isn't strong enough or conditioned enough to handle life without that padding. I'm on daily narcotic pain medication because my sleeved stomach cannot handle NSAIDS. This is another thing you have to be prepared for. Before your sleeve, you don't even think about it when you have pain. You pop an ibuprofen or two and are fine. Post sleeve, you might not ever be able to tolerate NSAIDS again. You WILL be forced to deal with a lot more pain because there are few doctors that are going to write you a powerful pain prescription for a headache, or minor back pain, or body aches and pains due to working out or even getting the flu. Some can handle Tylenol, but wow is that just super mild and barely touches the pain. It took 2 years of me seeing all kinds of doctors and trying this therapy and that therapy until they finally realized the only thing that is going to stop my suffering is narcotic pain medication. And even now, I only get 2 pills a day (which I cut in half), and it just takes the edge off the pain. Basically keeps me from crying my eyes out all day because of how much I hurt. I still hurt, and sometimes I will still cry myself to sleep at night because I've already taken my pills for the day and know I cannot take more (you can be subject to pill checks and if you attempt to fill early you can have problems!) so I have to just let it all out. Which actually sometimes does provide enough relief to get some sleep or exhausts me enough so I can fall asleep.

My reality now is that I have to be careful of everything I eat and don't really know what is going to cause me trouble. One day something will sit in my stomach just fine and the next makes me feel really sick. I ate a chicken strip and tater tot one night and was fine and the next day I ate a chicken nugget and hashed brown and was sick. Such similar foods yet one was fine and one was not. Whole foods actually are rougher on my stomach than processed ones! This is my biggest pet peeve! We get the sleeve to lose weight and get healthy, yet the very foods that we are supposed to eat to be healthy are the ones I have the most problems digesting! I also never believe them when they said you would forget to eat, but it actually does happen. And no it isn't a good thing as much as you want it to be because it makes your body think you are starving and shuts down your metabolism. You do have to force yourself to eat sometimes and it does suck. It's a lot like taking a food you hate now and forcing yourself to eat it. You get the same stomach turning inside out feeling. Doesn't matter how much you enjoy the food at other times...when you're not hungry, it's just not good. In addition to having problems with food, I now have problems with medications affecting me differently and unpredictably and oh yeah...bowel issues. You're going to become very aware of that part of your body whether you want to or not. You can somewhat control how much of your life it affects and it's true that you don't usually have the severity of problems that people with gastric bypass have. But there will be changes. With me it's mostly constipation due to my pain meds, but before that it can widely swing back and forth depending on your diet. Oh and I'm also now lactose intolerant too and antibiotics are a nightmare on my entire system. Since you are losing part of your stomach, you will also be losing some of the vitamins that are processed there. There isn't much you can do about that and doctors will not routinely check it so you have to stay aware. Look up what vitamin levels can be affected and stay on top of the symptoms of each deficiency.

Knowing all I know now, would I do it again? That's a tough question. I'm thrilled to have lost the weight I have lost and to have had some of the experiences I have had that would have been impossible otherwise. I went skydiving with my husband on his 40th birthday and that I never would have been able to do. I accomplished some pretty cool things that I never thought I could and never would have had I not done the surgery. But looking at the life I'm currently living now...I don't know. I'm pretty much where I was before, only now my pain can't be blamed on my weight and they have to find other causes. Now I don't have the option of losing weight naturally, or finding a reason why I'm not losing weight and fixing it another way so that I'm not stuck with what is a completely permanently altered stomach. Looking back, I wish I would have had more testing beforehand. I wish I would have pushed my doctors to find the reason why I was unable to lose weight because it was obvious my hormones were a big part of that. I could eat nothing but salad and not lose a pound...or bags of candy and not gain one. But throw some hormones at me or pregnancy or breastfeeding or pump me full of prednisone and the weight wouldn't stop piling on no matter what I did. Really was strange and I still don't have an answer to it. But now the doctors are less inclined to find one because I did finally lose weight. Oh, i guess I should mention that even after the surgery, I really didn't start losing weight until I was put on stimulants for my narcolepsy and severe ADD. That was what seemed to jumpstart my metabolism and finally turned on the weight loss switch. There is something wrong with my body that has yet to be discovered. We do suspect possibly the vascular form of Ehlers Danlos which could explain a lot of what I deal with too but I just really wanted anyone and everyone that is considering this surgery to also consider that there are negatives. Nothing is ever risk free.

And I am really sorry to those of you that really want this surgery because you are only a few pounds overweight but I will never agree with you about it being worth it in that case. There is too much risk for the justification of less than 50 lbs of weight loss in my opinion. I honestly believe that this really should only be reserved for those who do have very low quality of life and health problems that are or could be dangerous without immediate weight loss. Yes I understand that even being 30 pounds overweight is super depressing and can really impact your quality of life. But there are much better ways to lose it other than a surgery like this where there are real risks. After what I have been though, I am confident in that opinion and really hope you will listen to this voice of reason.

I wish everyone the best in whatever they decide and hope my story can help someone. I don't want to be a downer, but you really need to hear the bad as well as the good in order to make a truly informed decision!

[Gege1061]

Hi!
I want to start by saying I'm sorry for your suffering. From what I am reading, your case seems unusual. I am in the deciding phase (i need to loose 150lbs) but I will take everything you have said into consideration. The thing is, I'm going down a road that's going to lead to me being unwell. Do I bet it all on black and go for it? I'm thinking so. just praying for a better outcome.

[Sandra3]

Thank you for that great interesting testimony!

I'm only 19 months out but I would agree on many points, deficiencies especially. Somewhere we probably have too many expectations. Our sleeve won't solve everything and can create more issues indeed.

I know that I have no regrets today even if issues are real, my health did globally improve.

I would just to add that pain can be worth if you stay inside. When I get out I always feel better, even the very bad days.

Take care.

[Tuesday2]

I also want to say that I'm sorry you have so many problems but your situation soumds very atypical. Perhaps some of your existing medical problems were the cause.
I can tell you that not eating does NOT cause your metabolism to shut down. That's a myth. There is no such thing as "starvation mode" or people in concentration camps and Anorexics would still be here. So there's no reason to force yourself to eat.
I'm afraid that people considering surgery will see your experience and think it will happen to them, but I've never seen anyone with as much problems or complaints. Most people are very happy they had surgery and have no issues.
I am sorry that you do though.

[Christie13]

Sorry to hear that you had such a rough surgery and very slow weight loss. That is part can actually be due to your Celiac disease...which is not caused by the WLS itself but rather a hereditary disease. As for social life, it is about learning to live with your Celiac disease. My best friend has been living with Celiac disease since her late teens. It has not stopped her from living life and going out. Yes, she has to do some research before going to any restaurant and always has to inform the server that she is not simply avoiding gluten (as some people do for health benefits) but actually has Celiac. Your experience is definitely an anomaly and not the norm but it is good to hear about the complicated sleeve surgery experiences as well. As for your slow weight loss post sleeve, I do not know what your eating/exercising habits were so I cannot provide any insight to that without knowing what your habits were. Often times people are eating the wrong foods and that is why they are not losing weight as quickly or even eating too little. I am also sorry you had so many other unrelated things go wrong in your life that have contributed to your additional stress (which is a known to wreak havoc on your body-including weight loss) and pain. I was given prescription pain meds for my post op but have never really had any pain issues. I still have the bottle in my medicine cabinet. Once again, I am sorry to hear that you had a very atypical sleeve surgery and are going through so much with other medical issues. I am glad you shared your story. Because for all the complication free successful sleeves there are those very small percentage of complicated ones like yours who have issues and don't have quick weight loss.
For people who are reading this and would like more information on complication rates...please do your research. Although very small, complications can happen. Here is a site that talks about complications and their percentage rate. https://www.obesitycoverage.com/gast...erence-manual/

[ksosne]

Do the research and you will see that yes, WLS can bring on Celiac (and often does) IF you have the 'gene' for it. They have definitely made the connection between the two. Anything that traumatizes the body can bring on Celiac. I have had a lot of trauma in addition to my sleeve, so I can't say for sure that it is definitely what brought it on. But I also can't ignore the many other stories of people who became Celiac only after having WLS. No my story is not the norm, but at the same time there are others I personally know of who have had struggles similar to mine as well. I spend a lot of time doing a lot of research so I do know what I am talking about and yes, not eating can slow your metabolism. It is not a myth but some people can be more affected or more sensitive than others. There is something our bodies do when they are stressed which is what they have done for many years and how people have gotten through the more difficult times when there was little food or they had to survive or hunt in harsh times. Starvation mode may not be the correct term but it does slow down your metabolism, that has also been proven. Maybe not for everyone, but definitely for some and I have noticed it on more than one occasion. It could have something to do with the thyroid as for some people when their thyroid shuts down from some kind of stress, it doesn't come out of that 'stress mode' so even though Thyroid tests may come back normal because it's not a typical type of thyroid problem, you can still have all the thyroid symptoms and find it nearly impossible to lose weight but have a tough time getting doctors to prescribe thyroid medication (which is often only needed on a temporary basis) to kick the thyroid back into gear.

You are going to find a LOT of conflicting information online. The fact is that you can find just about anything you want to find to support your idea or belief if you look hard enough. No one knows everything and everyone is different. That's the main takeaway here. You also may not be seeing as many of the bad stories because like me, people don't want to post them. They think there is something wrong with them or they are doing something wrong and may be embarrassed and don't want to admit their problems. It's also human nature to over analyze someone else's problems to find something they did to cause their own problems so that you can say 'oh well they obviously weren't eating right so no wonder they had problems and that won't happen to me'.

I ate as I was instructed to eat and I did not have Celiac before the surgery as I was tested at a previous point in time and it was negative. I am also not your typical Celiac as I've never had intestinal problems due to gluten. I can still eat gluten and not notice any differences in how I feel. I've actually been fighting my doctors on the diagnosis to make sure I do indeed have it and it's not a rare false positive but since both the biopsy and blood work are consistent with Celiac, they are convinced I have it. But I seem to be one if those rare people for a lot of things and I can't tell you how many times I've heard from a doctor 'well that's different, I've never seen that before'. So I've become one of those people that has to research everything to death to find out what could be going on and I can tell you it's a confusing, frustrating, eye crossing experience!

Ok here's some truths that I don't think anyone can dispute and it's really great food for thought. As I stated above, there is A LOT of conflicting information out there and if you look hard enough, you can find something to support just about any belief out there. People are going to believe what they want to believe and that has been the case for years and years of history. There are sites dedicated to the 'proof' of alien abductions, to conspiracy theories, to gluten and artificial sweeteners being purposely created by the government to poison us and I wouldn't doubt that there are even people somewhere out there, that have decided Trump is the antichrist or the devil or an orange alien or the savior to the entire galaxy. That might be a bit of an exaggeration, but you get my point. No matter what I say in this post, people are either going to try to disprove me or support me based on what they want to believe. I want everyone out there to think for themselves. To do their own research and come to their own conclusions. To be aware that things like this can happen. Verify your sources and realize that every article or thing that has been written out there is either because someone believes they made the connection or found some kind of proof to build their theory on, someone thinks they are hilarious or evil and want to purposely create misinformation, someone misunderstood what they saw or are making guesses, or someone is simply serving their own best interests. (Take sales people for example: you wouldn't believe everything they say because their ultimate goal is to make a sale to serve their own best interest regardless of how good for you the thing might actually be or not be.)

I don't mind sharing my medical information to those that ask or even sharing my sources when I have the time and patience to do so. I enjoy helping people and sharing my own discovered knowledge when I can in the hopes that it does help someone. One great source of Celiac information is on the boards of Celiac.com. You'll get many personal stories of people who have been diagnosed with it. But I don't really want to post all my other sources here right now though because, well honestly, the first thing is that I'm tired and my head hurts and I can't handle digging around my computer to find them all because I have a severe case of ADD and so many links saved all over the place in mess of disorganization that it would take me hours to do so and we also have a new kitten that is chewing on my face demanding attention and I'd much rather play with her than lose my whole day to that. I really need all the positivity and to enjoy as much of the good in life as possible right now. Also I'd much rather you do your own research and not just believe what others post or take a link provided as the gospel truth just because 1 or 2 people here believe it to be so.

Another sad truth I have come to discover is that most doctors seem to have given up. They are taught in medical school that if it looks like a duck and quacks like a duck, it's a duck. Don't go looking for anything else or put on a pair of binoculars to see that it actually looks more like a goose when you look more closely. And most of the time that's the safest answer. However, if that fits 80% of people, you better hope you aren't in that 20% or you spend a lifetime being overlooked and misdiagnosed by the medical community and it's a nightmare I wouldn't wish on anyone. Doctors are exhausted but the fears of malpractice suits or being slapped by the medical board or the extreme pain pill controversy going on right now. They also are having to battle with insurance companies who define what tests they are going to allow or not allow and rarely are they in the best interest of the patient. It's all about costs. You'll be incredibly angered to find out that some of the painful tests you are put through have non-painful alternatives that insurance won't pay for because they are more expensive. I could go on all day and it's really truly shocking and infuriating and you'll wonder how they are allowed to get away with it and why aren't more people doing anything but it always comes down to the almighty dollar. I'm actually not a conspiracy theorist. I try to take the most common agreed upon information and take everything else with a 'grain of salt'. However, I keep having these experiences that just really make me shake my head and wonder what is becoming of the human race. Sorry...I digress...

Again, do your own research. Don't believe any one person. Don't take any one link as the gospel truth. Be aware that everything has risks and be prepared for them. Try to avoid falling into the trap of 'well I learned this from this person or source and that's what I want to believe so that is what I'm deciding I'm going to believe'. But also realize that even though you may be as prepared as possible you won't ever really know how you will react to something until you go through it.

[Tuesday2]

I have never heard of anyone getting celiac disease from weight loss surgery but if trauma can bring it on, as you say, then you can't blame WLS...you were going to get it eventually, apparently.
Also, if you were forcing yourself to eat and only losing 25 lbs a year at almost 300lbs... Perhaps you should not have forced yourself. You were sedentary and forcing yourself to eat... sorry, but if your metabolism is so different, it sounds like it's due to some bad advice.
I have never heard of anyone claiming so many medical issues from WLS and it bothers me to think that your excuses for your poor health are going to blame surgery that has helped so many people.
You didn't start off clarifying why you may have had some of those issues and instead blamed it all on one thing. And gave incorrect info a number of times.
You can get pain meds after surgery but most people don't need them. You never have to force yourself to eat... just drink. And you didn't get celiacs from WKS, if you have it at all, apparently. Additionally, I don't know what test you had to determine that not eating messed with your metabolism but since you're sedentary and forcing yourself to eat, I'm guessing you may be your own worst enemy.
Sorry for my bluntness and I do hope your health impeoves.

[ksosne]

And yet here we go again, another example of me trying to help people but ultimately getting attacked because of someone not understanding something. I was sedentary before, when I finally lost a good amount of weight and started feeling better, I got active. I even joined a gym and began working out with my husband. I went on a hike...which led to the avulsion fracture because I was actually having fun and took the going back down part a little too fast. I was not forcing myself to eat for a long time. Not until my weight loss stalled out and I couldn't figure out why. I averaged a weight loss of about 25lbs a year but it's not exact. There were periods of time I lost a little more quickly and periods of time I lost a little more slowly. My experience is just that...MY experience. You cannot tell me that MY experience did not happen. You have not been in my body or seen or experienced what I have. I find it really funny how people like to tell other people that they can't possibly have experienced what they did.

Also, I did not blame all my issues on the surgery. I said that I have had a string of unfortunate events that have led to where I am now. I also stated that I've had strange health issues all my life. The reason I said this is that so people would consider their entire health picture before considering the surgery. It's a big decision, any surgery is! What incorrect information have I given? Is this based on hard undisputed medical fact or your own personal opinions? Do me a favor and just type in Celiac and weight loss surgery in a search and look at what pops up. As I said, you can find support for just about anything but if you look at the sheer number of articles that come up, eventually you have to concede that it's a very real possibility. Here is just one article from a popular Tijuana bariatric surgeon: https://www.tijuanabariatrics.com/bl...d-after-163933 but there many many more. Are they all lies? Are they all just stupid and giving out incorrect information? Show me your sources that you can't get Celiac from weight loss surgery or stop throwing a tantrum about it not being possible simply because you do not want it to be true. Just because you have never personally heard about it happening does not mean that it's impossible. A blind person has never seen a blue sky either. Does that mean that they should believe it's not actually blue?

Please re-read what I have written. If you are reading something into my post that I did not say nor intend, then maybe I need to correct it. But the fact is that no matter what you say or how you say it, someone will read something different into it and it's impossible to please everyone. I have done a lot of research. Hours and hours and hours over days, weeks, months and years. The things that I say are what I believe to be the truth for me and my body. I encourage everyone to do their own research and not take anyone's word as the gospel truth. But don't be the person that says 'No, it's impossible that poverty exists because I have never seen it!' Or blame someone for a health condition that they have no control over because you don't fully understand it.

You do know that the wisest people in the world are those that realize there are no absolutes and that it's impossible to know everything right? The more you know, the more you realize you don't know and the less quickly you are to say that something is impossible.

And for the record, I never said anything about the sleeve not helping people either. Yes there are many people who have had wonderful experiences. But not everyone has and how can you justify that it's ok to share all the good stories without allowing the bad? Have you learned anything from history? How many years did people believe the world was flat before it was proven to be round because they couldn't see it with their own eyes? How many years has one thing been the popular opinion before it was proven otherwise? There are soooo many examples in history of this happening simply because people refused to open their eyes and believed they knew more than anyone else. Don't be that person...seriously.

[ksosne]

Hi!
I want to start by saying I'm sorry for your suffering. From what I am reading, your case seems unusual. I am in the deciding phase (i need to loose 150lbs) but I will take everything you have said into consideration. The thing is, I'm going down a road that's going to lead to me being unwell. Do I bet it all on black and go for it? I'm thinking so. just praying for a better outcome.

My case is definitely unusual. And it's impossible to know what caused what as I have had a really bizarre string of bad luck. Here's another way to look at things. When you are sick, sometimes you are faced with choices that aren't going to be great no matter what you decide. Imagine having a serious colon issue and having to get a colostomy. You can imagine how awful having to deal with that colostomy would be and there would be times you would regret having done it. But at the same time, it's likely that it saved your life and maybe gave you 10 more years.

On the other side you have people with cancer that can't face the treatment or severe disfiguring and even disabling surgery required to treat it. They choose to live their life as long as they can with alternative or minimal treatment. Their lives may be greatly shortened but their quality of life for that time may have been a lot better than if they had gone through the aggressive treatment recommended.

These are extremes of course, but it's another way to help put it all into perspective. It's a very personal decision and something that I believe everyone has the right to decide on and should not be made to feel ashamed one way or the other for choosing what they do. But just as with everything, I believe everyone has the right to have as much information about it as possible beforehand so they can make as informed a decision as possible too and that's why I share this story. If I had known that Celiac was a possibility, I may have asked to be tested for the Celiac gene beforehand and tried to get some more information first, but that's just me. There are many many times in our lives when we realize something later and say 'I wish I'd known this first...' which is why they say hindsight is 20/20. It's also why I can't say for sure whether I regret having had it done or not. It's complicated with me!

I wish you all the best in whatever you decide!

Thank you for that great interesting testimony!

I'm only 19 months out but I would agree on many points, deficiencies especially. Somewhere we probably have too many expectations. Our sleeve won't solve everything and can create more issues indeed.

I know that I have no regrets today even if issues are real, my health did globally improve.

I would just to add that pain can be worth if you stay inside. When I get out I always feel better, even the very bad days.

Take care.

You are very right about pain. I do try to get out and ha ven't given up yet! And before surgery, I definitely had unreal expectations but its tough not to when you see so many awesome successes right? It's human nature. We want to believe that everything is going to work out just like we plan. Sometimes it does, sometimes it doesn't. But it's always better to know what can happen and be prepared for it rather than be blindsided. At least, that's how I feel! I'm so glad you are doing well though! :-)

[ksosne]

I should add that I'm not completely against this surgery either as negative as I sound! I'm actually going with a friend of mine in a couple weeks who is having a band revision to sleeve. I just want everyone to be aware is all and honestly do wish everyone the best!