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Another reason to not have WLS of any kind

August 11, 2010
by


TRIGGER WARNING for WLS and graphic descriptions of medical complications.

I belong to a group on Yahoo, OSSG-gone_wrong, and the following letter is from a new member. It details her problems with WLS in graphic manner, so it’s not for the faint-of-heart (I cried when I read all that she had been through, and was outraged that doctors think this is acceptable treatment for fat people). I have received her permission to reprint her story.

This is my first post to this group and I’ll just tell my story, especially for the benefit of lurkers who are considering the surgery.

In 1975 at age 33 I weighed 365 and was having all sorts of marital and job problems that I thought losing weight would solve. I’d joined Weight Watchers some 17 times and had done all the usual diets. I’d even lost close to 100 pounds myself and regained it all plus, and had had many other short term weight losses. But I always regained it all plus.

The first kind of weight loss surgery was being done more and more in LA and I first checked out UCLA, which wanted me to lose 25 pounds before they’d operate.

I thought that was ridiculous, though I see now that it is better to go into a major surgery when you’re morbidly obese with some weight loss first. Even 25 pounds makes a major improvement in your health. But I wouldn’t wait.

I found a guy I see now was basically a quack, and he did the jujenal-ilial bypass where you are left with 18 inches of small intestine connected together, with 20 feet of small intestine floating free to get infected.

Severe diarrhea, the kind where you dump on the floor in front of your husband, is not a side effect, it’s the goal, and I did lose 160 pounds in a year. (My liver went into cirrhosis, too, and I haven’t had alcohol in more than 30 years.)

Still lots to go, but I developed a horrible smell from my mouth that the doctors had no idea what it was. It wasn’t dental, eating charcoal didn’t do a thing, stopping garlic and onions did nothing, etc. Finally doctors back then put two and two together and realized I had a horrible infection inside, and I was on Flagyl first, then tetracycline for six years.

I couldn’t afford it but my then-husband worked in a tropical fish store and I used the tetracycline capsules aquarists put into fish tanks to cure some fish diseases.

I had to take a big dose every four hours or the horrible smell returned. My boss had to empty the building after one of my diarrheas before I started the antibiotics, the whole place smelled horrible. Talk about embarrassing.

So I went merrily along with diarrhea and antibiotics, but after six years the antibiotics weren’t working so well so I decided to have the surgery reversed. I would go to stomach stapling, the new newest thing.

Two days after the reversal in the hospital, I suddenly got a horrible pain. The doctors had switched me to stomach stapling but the stitches had broken loose and I had peritonitis from stomach contents flooding my abdominal cavity. It took a 17 hours overnight surgery to repair, and my family was told I wouldn’t make it.

But I did. I had to stay in the hospital for another month to try to take down the peritonitis, using every strong antibiotic known then, hang the side effects. You can imagine what losing a month of work did to my employability.

Even worse, I gained back 120 pounds the next two years and had an abdominal hernia the size of a watermelon. Everyone asked if I were pregnant. My husband had left me along the way. He had an affair while I was in the hospital the first time.

So, now I had the hernia repair and the weight loss surgery as changed to the Roux Y kind, a combination of the two. I didn’t lose any more, and I lost my job.

This was 1984 — back then insurance companies were more blatant and they told my boss either fire me or they’d double the rates on the other 500 employees.

Now I am sick, unemployed, unemployable, and I’m back up to 300+. In those years I did do a lot of counseling and came to realize that really I was a lesbian, and so I’d come out and found a wonderful partner, who stuck with me from 1979 to today, 31 years. We were legally married in Massachusetts in 2004. She’s saved my life many times.

I helped her in her business and then we moved from LA back to Michigan, where I began to have intestinal blockages that would break through after a few days of pain. I’d get down on the floor and bounce my stomach to get the breakthrough. I could have just as easily broken my stomach and died, but that’s what I did.

In 1989 one of the blockages didn’t clear and my stomach surface turned black. Gangrene. I was 12 hours from death, they said in the ER as they rushed me to surgery. The first two hospitals couldn’t do it, I was taken by ambulance 165 miles to the University of Michigan.

Somehow I survived that one, too, though I was left with a hole two feet across by 6-8 inches deep, like someone had taken a chain saw to my abdomen and hacked out a chuck roast.

They couldn’t close it up for a few months while it filled in some, so my partner twice a day did a thorough cleansing of the wound and then repacked it with gauze in something called the wet-to-dry technique.

The home health care worker who first was sent by the hospital to do it for me almost vomited into the wound when she first saw it, so my partner took over.

At this point Michigan Medicare decided I was no longer in a life-threatening condition so they dropped my Medicare, with this huge hole in me and surgery looming.

My partner took photos of the gaping wound and sent them to our state representative, whom I’d met once, and he got me back on Medicaid immediately. After six months the wound was closed enough that it could be closed surgically.

Now I have this abdomen with all my intestines shoved to the right side and a big cave-in on the left.

Every surgery means more scar tissue, more adhesions, more blockages. We couldn’t afford any more medical care locally — my partner figured out that we could RV all over the country and go to ERs all over, since we’d exhausted the sympathy of all local hospitals. And so we did, for 3 1/2 years.

I had another pretty serious blockage near Seattle and was told that if I had to have another surgery, it would kill me. All over the country I would go into the ER with a blockage, they’d put a naso-gastric tube down my nose into my stomach to pump out what they could.

I’d walk all over the hospital with my IV pole feed and rehydration until I got bowel sounds again and had a bowel movement. I ate very small pieces of food all that time when I was out of the hospital.

We were in Tennessee and we’d walked out of a fabulous restaurant built around an old mill, at which I’d had cream of corn soup and a muffin.

Suddenly I felt something strange and I looked down and corn soup was pouring out of my abdomen and down my legs. Rushed to another hospital. No one was able to figure out what was wrong and I was just bandaged up and sent on my way, with food from then on pouring out my stomach.

My partner figured out how to do an ostomy bag for me. She had to use some kind of medical cement to build a flat surface over all my scarring so that the ostomy bag would adhere. She had to do that rebuilding every five days or so when it started leaking, and I learned to change my ostomy bag several times a day. Life went on.

Another University of Michigan emergency surgery repaired the fistula that had opened up from my intestines to the outside. On my way again. It didn’t open up again and I felt pretty good, considering.

Finally I was accepted onto Social Security Disability and then Medicare. My life suddenly got much easier.

We settled into a seniors RV park near Phoenix and I still had occasional blockages. A doctor there said I really needed to have an excellent surgeon open me up and clean out all the remnants of all the weight loss surgeries and remove all the adhesions.

But the medical science wasn’t that good yet, I didn’t trust such a surgery, surgeries were for the very last resort.

My dad died — we’d had a terrible relationship all my life and he’d had to live with us for six years when we were in Michigan, and then we got him into a seniors home near us in Phoenix. Suddenly I was able to lose weight!

I went from 366 to 265 in two years without a whole lot of effort! I credited being emotionally free from my dad finally. We hated the seniors RV park. My partner, who had been investigating places we could retire all over the continent, suggested we check out Mexico.

She’d found a little art colony, a UNESCO world heritage site, that was magical. We went down for a summer and fell in love with the place. We wrote a book about it, Falling… in Love with San Miguel: Retiring to Mexico on Social Security, and started a website, Falling… in Love with San Miguel. Life was going very well. I was looking so thin and gorgeous, too!

But the weight loss wouldn’t stop, and the diarrhea started up again, as bad as after the very first weight loss surgery. I started to look gaunt. A local surgeon said that I had to get that surgery I’d been told about earlier or I would die. I had malabsorption syndrome, caused by bacterial overgrowth syndrome, caused by blockages, caused by the scar tissue from all the surgeries.

We rushed back to Phoenix — Medicare doesn’t cover you living out of the country — and found a highly recommended surgeon who said medical science had advanced enough that he thought he could save my life and clean everything up.

Good old USA health care — it took a month to get to see him, and then he was going on vacation, and then it took time to get a hospital reservation for enough time in the ER to do this.

I was looking terrible by then, though I was at 166 pounds. At 5’8″ I had never been below 180 in 50 years, and that was the weight everybody thinks I look best at, believe it or not. My hair was falling out, I had to wear Depends, my skin was ashen, I felt dead.

I couldn’t lift my foot enough to use the gas pedal so I couldn’t drive. I had to have a sort of half-step built to take with me so that I could go up steps at all.

A few days before the surgery the hospital called to say my heart wasn’t strong enough to do the surgery, they wouldn’t take the chance of me dying on the table, I would have to just die.

The surgeon got me all kinds of tests that found I had an aortic valve problem and heart murmur, but it wasn’t bad enough that I would automatically die on the table, he’d take the chance. And so he convinced them and I was wheeled in.

He’d reserved 4 1/2 hours for the operating room but right off the bat he found that my gall bladder had ruptured who-knows-when and it had grown into my colon and liver. He spent the first four hours removing my gall bladder and rebuilding my liver and colon before he could do the real job. It took 8 1/2 hours.

But I lived. And I have had no problems ever since. Except that I regained up to 280 pounds again. And I have a little discharge hole on my abdomen that no one has been able to repair without doing a huge operation. I can just live with changing a small bandage twice a day forever, and not going swimming or bathing. Showers are okay.

When I hit 285 I freaked — 366 is just around the corner. I’m almost 68, my heart murmur might require surgery some day, I have macular puckers in both eyes and the start of a macular hole in my left eye that has a 50/50 chance of requiring major eye surgery some day.

I tire easily, carrying an extra hundred pounds around all the time. I really do want to lose weight this time.

So I have been looking around for support groups that aren’t filled with those who have 10-20 pounds to lose and who have no idea about anything related to weight loss. I know it all, from 60 years of dieting, sometimes even successfully. I just have to do it. Nike theme here, just do it.

In thrashing around on other groups I was told by Sue Widemark about this group, which probably suits my experiences best. She asked that I tell my tale here, for the record. I hope it helps some of you.

She also said that I should be so glad to be alive, no matter what I weigh, so many former weight loss patients are never able to absorb food properly ever again and they die.

I’d like to live a little longer than I probably will at 285, so I am still looking for support for dieting, or rather, changing my eating habits permanently at this late stage of my life.

We’re going to get a treadmill when we can save some money, and meanwhile we do walk quite a bit, a mile or two here and there.

And I have cut back a lot — down to 273 this morning. Just a droplet in the bucket but it’s a start. We have such wonderful and inexpensive fruits and veggies here that it helps.

My partner is very good at weighing portions and cutting out hidden calories and encouraging me to exercise more. I actually do feel pretty good that I can do it this time, despite my horrible history. We’ll see.

The following is a letter she just wrote to the group about her thoughts on whether being thin for the middle part of her life is worth losing 10 years off the end of her life (she’s 68).

Thanks for the kind words from everyone. And yes, the woman who asked to reprint my post onto her blog that also seeks to discourage people from having WLS has my permission.

The last seven years have been pretty good, other than more weight regain (“Other than that, Mrs. Lincoln, how did you like the play?”). The little discharge spot to the left of where my belly button once was 35 years ago is easily handled with a little gauze and tape twice a day.

What is worrisome is that the past few days I’ve had a sharp pain where the worst surgery gathered together a lot of skin and tissues in 2003 and I’m worried there might be some rupturing inside, a new hernia or worse. Or maybe I just strained a muscle while coughing with my cold that is almost over.

No surgeon near here could do the surgery that would be required if it is bad. I’d have to go back to Dr. Bruce Davis in Phoenix — a lot of expense even with the Medicare coverage when I’m back in the US.

So I’m just waiting a few days more to see if the pain goes away. It’s happened before and went away so I’m hoping.

I recently heard that a man I once knew online just had the band WLS and was near death from an infection after the surgery. I never told him what I had gone through with WLS and don’t know if he would have changed his mind if I did.

I do have mixed emotions — he probably weighed 500 pounds at age 60 and maybe it is better for him to have the surgery and take his chances with potential side effects, versus the side effects he was having already with breathing and moving and heart problems.

His wasn’t a case where he was fit and fat, he was miserable, and a mental attitude adjustment to accept himself wouldn’t have been enough.

Probably this isn’t the time to email him and tell him my story now! He needs to get through his first year with all the encouragement he can get. We don’t correspond any more anyway. I don’t envy his girlfriend.

I was in a fat acceptance group in LA in 1975 just before I had the surgery, and I obviously couldn’t stay a member after my surgery. I even heard some horror stories beforehand from that group and it didn’t stop me.

I remember clearly saying to friends that I was willing to lose ten years off the end of my life if I could be thin for the middle years of my life. I was 32 when I had the surgery. Little did I know so many people die on the table or soon after.

And now I am near the statistical average for the last ten years of life for a woman almost 68 at 280 pounds with heart and breathing problems. Every time I read an obituary I check their age and cause of death.

No one knows what would have happened with different choices in our lives, but I am keenly aware of having made that decision in 1975, willing to give up these last ten years.

Stupid girl, the years get more precious as you get older, not less valuable.

I might have been dead already without the first surgery, but maybe not, and maybe I could have avoided most of the agonies of the past 35 years. I did get a good job after the surgery, though, which launched a lot of good things in my life. But overall, was being fairly thin a few years worth it overall? No.

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18 Comments leave one →
  1. August 11, 2010 10:39 am

    Such a waste… this makes me want to cry… and scream… and wonder why none of those doctors at the beginning just thought to put her digestive system back to some semblance of normal, instead of keeping chopping, chopping, chopping. Just horrifying.

  2. August 11, 2010 10:52 am

    What a horrible experience! I am so sorry that this woman underwent so much pain and misery just to be a guinea pig for WLS. So much life wasted in the pursuit of thinness.

    I hope someone points her to Health at Every Size. The fact that her body keeps returning to that higher weight is indicative of strong genetic determinants. I wish her all the happiness in the world and a long, pain-free life.

    Peace,
    Shannon

  3. August 11, 2010 11:24 am

    What kills me is that the WLS cheerleaders will call her an exception, say that one person’s experience is not statistically relevant and dismiss this woman’s experience as an anomaly. What we need is unbiased follow up research on the long term effects of wls (I had my first one in 1988…a disaster). Weight loss surgeons are famously dismissive of anyone who might ruin their stats. The health of the patient is subsumed to their desire to produce data that proves that wls leads to weight loss and any failure to achieve said loss is the patient’s fault. This is medical abuse and a very real part of fat prejudice, a dangerous part of it. I’m on OSSG too. I read these horror stories and die a little inside.

  4. Lisa permalink
    August 11, 2010 12:17 pm

    My wls complications have caused me severe chronic pain, and I did develop ulcers , that when they are active, I run the risk of perforation and internal gi bleeds. I just got out of the hospital,as some of you might remember last week, on Tuesday it was the 3rd hospitalization I have had in a 6 week period of time this summer in addition to 2 er visits in that same period.
    My last hospitalization, was grossly mismanaged by feedback from other providers, a pain management specialist who I had saw didn’t think I needed opiates, which he and I fought about that the 2nd visit of this summer, the 3rd visit when he made the same recommendation, I just quietly disagreed, as he as treated me(the pain management specialist) for Fibro, which opiates aren’t the protocol for treatment however for severe abdominal pain they are and that was why I was in the hospital was because of abdominal pain from my ulcers. After a couple of days in my last stay they had me on opiates then stopped it, and I went bat shit crazy from the pain.
    My surgeon who has been very understanding about my pain issues and the active malabsorbtion I have whether I have ulcers or not (ulcers when active make the little amount of medications I can take even less effective) is now losing his patience with me. When he did an endoscopy the day before my discharge, he found the ulcers had been healing and made a comment that maybe I might not want the reversal after all. I dont have a chance of reversing some of the damage this bypass has done to me without the reversal, you can bet he is going to be doing it.
    I haven’t been catastrophically ill like some people have. I just have a major reduction in my quality of life. I had migraines before the surgery, now I have migraines and the complications from my surgery are very low blood pressure, reactive hypoglycemia, severe anemia,chronic pain sydrome,fibromyalgia ,several huge ulcer and severe abdominal pain. I have severe depression, bipolar, severe anxiety and major panic attacks. Because I malabsorb medications its very hard to treat these conditions, that’s why when I am on the internet and I warn people about wls, I say that it is a surgery that can create health conditions and then because you have a surgically altered digestive system, you may not be able to control how you absorb medications and nutrients if you should develop complications from the surgery. The wls cheerleaders say its working “your tool” but most of the people in the wls community who are getting positive attention due to their wls, are not that far out. It’s people like me who are 8 1/2 years out, who not only have weight gain issues but severe malnutrtion, and people cannot understand how you can be fat again and so malnourished in addition to the complications lots of farther out post ops are starting to experience. It is a tool, that can also fail you miserably is what I say when I end up in debate with them.
    Shannon, Sue Widemark who is mentioned in the blog has been a godsend to me this summer with being in so much pain physically and emotionally. She is a medical researcher that has specialized in wls complications,and we both met on a group called People of Size. You and I have facebook friends who both belong to that group, it is one of the rare fat activism and size acceptance groups that does allow for discussion of weight loss, I dont know if you have ran across Rebecca who owns the site, or Sue, but maybe an association between you 3 could be helpful for those who belong to People of Size also to belong to FFF, and it would also allow an outlet for FFF who are trying to lose weight, to participate in the discussions that come up about it on POS. because not every one group can be everything to someone and its understandable that an FA boards want to keep their boards diet free in talk, but there is a need that a group like People of Size allows FA’s and size acceptance advocates a place to discuss losing weight.But the group is first and foremost is to promote size acceptance and has groups also for kids of size. I can send you the invite to People of Size if you like, and Sue is one of my FB buds.
    So in short, I am at the point where I have gotten so demoralized like when I was posting last week that I was going to just give up hope and fighting and just let myself die from this. But because I am not catastropically or acutely ill at this point, just in severe pain, I owe my kids at least another attempt on my part to get healthier and fight for whatever I need to do that. I have had chronic severe pain for 6 years now, it took 3 years to get Social Security and I lost everything because I got so physically in mentally incapiciated by 2008 (year 4 into complications) that I gave up custody of my kids because I no longer could raise them properly, and tried to commit suicide 2 years ago (actually tomorrow is the 2nd anniversary of my suicide attempt) what so sad is that I know so many people who have it much worse then I do, but when you have the type of diagnosies I have, and they can’t be treated properly with medication it does some major damage to your psyche. I ended up in the system after my suicide attempt, and because if you try to commit suicide at least in the state of Minnesota, where i live, you run the risk of being committed. Because they kept me in the hospital for so long, trying to have me committed I lost everything I owned, and also got an unlawful detainer to boot. I ended up in group homes for 15 months after my suicide attempt, was able to move out when I got my backpay from Social Security and have been living on my own again since the 1st of the year. 2010 was supposed to be a good year for me, I ended up in the hospital though in January with severe abominal pain and every since my pain levels have gotten worse and its hard to deal with the anxiety and the panic attacks as they are severe as well as my depression because of being in the vicious cycle of severe physical pain and untreated mental health issues . So I have had 4 medical hospitalizations this year, 10 in the last 4 years and 12 total medical all due to my complications from my gastric bypass. I have had 3 psychiatric admissions, the one after my suicide attempt I was in the hospital for 35 days. I am so sick of doctors and hospitals, that I can’t take the idea of having to go into them anymore which sucks becaue my pain levels are so high.
    So I hope once I regain my health to do advocacy on size acceptance, anti-wls, antichildhood bullying and bariatric motivational coaching and adaptive and rehabilitative personal training. But I am so far away from being able to do that, at this point I just have to take each day as it comes, and right now most of the time my life is miserable. I can only hope when I quit smoking next Monday and see my surgeon again in a couple of weeks he doesn’t make me wait months to get my surgery reversed.
    Sorry so wordy…I just feel passionate on this subject, I am not completely blameless with my complications, I do smoke and there was some non compliance, but I wasnt non compliant enough to end up this sick. And I am lucky that my bariatric surgeon has low fatality rate and is great surgeon.I just don’t believe anyone should have wls, its forced behavior modification, I also call it surgically induced anorexia and bulemia.Too many people if there is an issue where weight loss is needed for health reasons, ways to lose weight without dieting, without putting yourself at risk for complications greater then what is considered the “comorbidities of obesity”.

  5. CollieMom01 permalink
    August 11, 2010 12:19 pm

    My heart aches for the writer of the letter. I, too, have a personal experience with WLS–my mom had it back in the late 70’s, as I think did the writer, and it was a horrifying experience to witness. I can only imaging how hard it was for my Mom to live through. As a pre-teenager, I vividly remember the horrible diarrhea, the chronic vomiting, the terrifying abdominal scar that wouldn’t heal. I could write a book on what the recovery of this surgery was like for my siblings and myself. I swore that no matter how fat I got, I would never have that surgery. My mom was dead within 5-7 years of her WLS surgery; she lost 100#, then her weight settled (still at around 325#) and her stomach grew and she could almost eat normal meals again. And then she died. I can’t prove it was the surgery that caused her death, but if this gruesome procedure truly was necessary in order to save her life, then I don’t think she got her money’s worth. Unfortunately, not everyone in my family felt the same way I did about this surgery, and almost two years ago, my baby brother underwent the same procedure. He told me he had a mass in his abdomen because it was easier for him to lie than to tell me he had decided to have WLS. Again, I witnessed the vomiting, the diarrhea, and the initial weight loss. And again, the weight is creeping back on. He has 5 kids and did it to because he was afraid of dying and leaving them, the way our Mom left us. What can I say to that?

  6. August 11, 2010 2:52 pm

    My thanks to everyone for sharing their stories.

  7. Lisa permalink
    August 12, 2010 5:54 am

    I failed to add, my sympathies and my heart going out to Vesta, regarding her experience. I can’t imagine the battle she has had most of her life, after having wls, as I have gone bat-shit crazy just from 6 years of moderate complications.
    I also wanted to add, its strange how people’s experiences vary after wls. I have 2 sisters and my mother and father. My mother was the only person in our family not to have a “weight problem”. My father had his gastric bypass originally in 1981, he lost 81 lbs but he regained plus another 125 lbs starting 2 years after his original surgery. I am the oldest of 3 girls, we are all 18 months apart, and I am the oldest (and also the blacksheep in the family)
    I had my surgery in 12-2001, based upon my “success” my middle sister who was thin most of her life, but had 3 babies in 3 1/2 years got to a size 16/18. In October of 2002, my father had a revision, by my surgeon and his partner (the only time they have co-operated on a patient, and my surgeon’s partner is world renowned bariatric surgeon,who pioneered the bariatric surgery center at the U of M and all of our surgeries done at the University of Minnesota hospital in Minneapolis) My father and my sisters wls were done a day apart. My sister did the con of the century, I actually had to do the same thing, we wore weights under our clothes, because we were (me, more so) borderline morbidly obese. My sister had to wear a lot of weights, I was 90 lbs overweight so I wore 10 lbs of weights underneath my clothes.
    So just based upon my family alone, my father never lost another pound after his revision. He had so many adhesions though from his original surgery that his revision just made it easier for him to eat more, because they cleaned up his adhesions during his surgery. My sister who had wls is very thin now, but she doesnt have to work at it, she eats pretty much what she wants to, she just can’t eat a lot of food at one time, but neither can I and she like I does have to worry about dumping syndrome and both of us never know if what we eat will make us sick. My youngest sister who has always been 10-15 lbs overweight, has managed her weight loss by being concious of portions and moderate exercise, she is curvy so while she is thin, she is never going to be tiny like my other sister and has to make somewhat of an effort to maintain her weight, however neither one of my sisters have ever been eating disordered like I am. Then you have me who has had a lot of complications, was eating disordered, got healthier physically and mentally 3 years after my surgery, grew to love exercise, and was able to eat in moderation (well built in moderation as I had the surgery, I just outate the effectiveness of it early on) and ended up actually for several years the the thinnest and most fit in my whole family before my complications kept getting worse, and I started eating destructively and gained 90 lbs in 2 years.
    One of the things that are not being discussed, if you belong to several FA groups like I do and wls comes up, is not just complications from the surgery. I have friends who became cross addicted to alcohol and prescription drugs. Even with psychological evals (which I lied about my eating disorder) it still hard to pinpoint who might end up abusing alcohol and prescription drugs, because food can’t be their drug of choice anymore. And then you have people like me, because I have a high tolerance to opiates and benzodiazepines, because I malabsorb so much of them it takes a much higher quantity to be effective for me. Because I had the suicide attempt involving narcotics, I have been labled as being opiate and benzodiazepine abusive/dependent, quite unfairly because I can go months at a time without being on prescription medications and I don’t go through withdrawal nor do I seek out drugs, or drink alcohol, etc. I do smoke which I have to quit to get my reversal. There are studies now out there showing that some gastric bypass patients, do not have the bio-availability of medications like someone who doesn’t have a surgically altered digestive system and that the medications malabsorbed, their effect also doesn’t last as long, so then you have patients like me who malabsorb meds, have a high tolerance who are getting labled “cross addicted” unfairly when there are those studies like I have said that show some patients have the malbasorbtion much longer then the 2 years which is the norm. My father and my sister do not have a problem with taking prescription medications and getting relief from them. My father is 200 lbs heavier then I am, and can take 1/2 mg of Xanax and it knocks him on his ass, I can take 1mg of Xanax and if I am lucky it will take the edge of a panic attack. If I am on opiates, the only pain medication that I am not allergic to is Vicodin and it takes 10 mgs to take the edge of pain, and if it does I am lucky if it lasts 3 hours, I am never pain free for the last 6 years. I was on iv dilaudid during my last hospitalization and while it helped pain wise, i get the nasty side effects of being really nauseous and rebound headaches…I can’t have morphine because I become hyperemetic and get rebound headaches and migraines, and I have a ton of allergies, intolerances or medications just not being effective at this point.Which justifiably makes me the patient from hell to treat given my medical and psychological diagnosies.
    I know now after being over 8 1/2 years post op, not one person, out of hundreds personally and thousands from internet contacts who was able to lose weight with gastric bypass and not suffer any complications, experience moderate to major weight gain or become cross addicted to either drugs or alcohol and had to go through treatment for that, or the 2 people I personally know who are 6+ years out have maintained their weight loss, one of them became cross addicted to alcohol and the other resumed smoking after quitting several years prior to their surgery. If there is a gastric bypass patient, walking around, who is at what is considered a “healthy weight”, has maintained their weight loss 6+ years with no complications and no cross addictions and is in great health, I have yet to run into that person.

  8. Lisa permalink
    August 12, 2010 6:11 am

    when i reread the blog, again, I saw vesta was the author, but not the patient described, i dont know if she belongs to that group because of having complications regardless, I obviously could relate to the blog and I think obviously after writing so much, that more people who have had this “life changing” surgery and it’s made their lives so much for the worse, need to come out and share their stories….

    • vesta44 permalink
      August 12, 2010 10:29 am

      Lisa – I belong to OSSG because I do have some complications from my WLS, not as severe as yours, or the woman whose letter I posted. I have fibromyalgia, migraine headaches, and my mobility issues are a lot worse. I don’t know if the fibro made the mobility issues worse, or if the added weight I gained after the VBG failed did it. I also have to watch what I eat when I’m not at home. I can’t eat salads or vegetables or anything with milk or dairy in it when I’m out unless I’m going to be very close to a bathroom for about an hour after I eat (it’s either that or be sure I carry plenty of washcloths, a change of clothing, and a plastic bag for soiled clothes). Explosive diarrhea is humiliating and embarrassing, to say the least, when it happens in public, and I’ve had that happen several times, before I figured out which foods triggered it and learned to stay away from those foods when dining out. I also have veinous insufficiency in my lower legs, which means they swell, the blood leaks out of the veins, and discolors the skin (permanently, in my case, since it was misdiagnosed for years). I have to wear surgical stockings 24/7 to keep the swelling down, and I have to be very careful not to bump my lower legs as the skin is very thin and tears easily (and takes forever to heal because the fluid leaking out of my veins and lymphatic system leaks out through those sores – lots of fun….NOT).
      You said you had your surgery at the U of M, so did I and so did my best friend, Pat, who died from having 2 VBGs. She and I had the same surgeon, he taught other doctors how to do VBGs and was supposed to be the best (Dr. Henry Buchwald). The women that I saw who gave the “pep talk” about how great WLS was must have been in that “honeymoon” period, where they’ve lost the weight, haven’t had any complications yet, and haven’t yet started regaining weight. Not one of them had anything bad to say about the surgery, and any time I brought up concerns, I was told those concerns usually didn’t happen or were very rare. Yeah, right, and I have a bridge for sale, I wonder if any of them are buying now.

  9. August 12, 2010 11:44 am

    I told Veronica about this last night and she asked if any of you had heard of a correlation between weight loss surgery and multiple sclerosis. I did some digging and I found this article: http://www.neurology.org/cgi/content/abstract/68/21/1843

    Were any of you aware of the link between WLS and neurological damage? Because I had no clue!

    Peace,
    Shannon

    • vesta44 permalink
      August 12, 2010 2:33 pm

      I didn’t know about the correlation to MS, but it makes sense. My neurologist requested an MRI for my migraines and said she saw some white lesions on my brain (just a couple of them and they were small) that were indicative of MS. Yeah, just what I wanted to hear. She wanted to do another MRI in a year, but it’s been more than a year since the last one and she hasn’t said anything about doing another one yet. I’ll be seeing her again in October for the results of the EMG I have to have in September (the carpal tunnel surgery I had on my right hand hasn’t fixed the numbness in it). I’ll ask her then about the MRI on my brain (my husband wanted to know if they found a brain in there, the scan took so long the last time…..lol).
      One of the complications listed on the Yahoo group is neurological damage – from a lack of B vitamins being absorbed properly, if I recall.
      Here’s a list of those complications, so far:
      Dehydration, Chronic Vomiting and Nausea, Stroke, Heart Attack,
      Arrythmia, Kidney stones, Kidney Failure, Liver Failure, Anemia, Deficiencies (B-12, potassium, iron, B-1, B-6, etc.), Mal-absorbtion of supplements
      (calcium, minerals, nutrients from food), Blurred Vision, Muscle and
      Bone Pain, Loss of Teeth, Bleeding Gums, Rotting Teeth Due to
      Vomiting Requiring Root Canals, Hypoglycemia, Headaches, Black
      outs/Seizures, Lactose Intolerance, Injury to Spleen during surgery,
      Coma, Paralysis/Blindness after coma, Osteoporosis, Burst Pouch,
      Lupus, Auto-Immune Disease, Looped Intestines, Ruptured Esophagus
      from vomiting, Misfired Stapler during surgery, Ulcers, Pneumonia/Lung
      Problems, Arthritis, Weakness and Fatigue from Malnutrition, Overall
      Pain, Metabolic Bone Disease, Food Blocking Stoma Causing Severe
      Pain, Stoma Needing Stretched Repeatedly, Neuropathy, Beri Beri, Put
      on Feeding Tubes/PICC Lines, Fibromyalgia, Chronic Fatigue,
      Fistulas, Atrophy of Muscles, Hair Loss, Hernias, Blood Clots, Leaks,
      Peritonitis, Heart Burn/Gerd/Acid Reflux, Bowel Obstructions,
      Gallstones and Gallbladder Removal, Severe Depression, Anxiety, Loss
      of Memory, Poor Concentration, Irregular Blood Pressure, Diarrhea,
      Constipation, Opening Of Outer Incision-Needing Packing Until Healed
      From The Inside Out, Insomnia/Sleep Disorders, Unforced Anorexia and
      Bulemia, Gas, Silent Stroke, Vertigo, Malnutrition which is the cause
      of many of the above problems, Many End Up Becoming Invalids, and
      then there is death.
      This list continues to grow.
      These complications can happen right after surgery, days, weeks,
      months, many years, and even when taking all the required
      supplements.
      Besides physical complications there is financial hardship and
      families who are devastated.

  10. lifeonfats permalink
    August 12, 2010 1:42 pm

    Wow, that is such a heartbreaking story. And yet, the pressure to get WLS is stronger than ever now. I know a woman who got WLS suggested to her and she has MS. I haven’t seen her in over a year, but at that time she refused to get the surgery.

    Even though my weight makes me a good candidate for WLS, I have chosen not to have the surgery. It’s not worth the risk to develop severe complications when I’m already pretty healthy despite being deathfat.

  11. Lisa permalink
    August 12, 2010 4:34 pm

    Shannon, I did know about the connection between MS and wls, there are a whole slew of us people getting hit later on after our surgeries with neurological and autoimmune disorders, I know several people including one of my best friends who has MS now and she had a VBG that went bad and she had that undone,(her vbg was done 10-2001) last summer but it was too late, but she got sick all the time from eating but still was able to gain a lot of weight back which people understand that once you utilize starvation as a weight loss tool, it will be easier eventually to gain back weight because our bodies will want to hold on to more calories but not enough to justify how much people gain, to ward off being in a starvation states.
    Vesta, My surgeon is Dr Ikramuddin, he moved from Philly to MN 1 month before my surgery to pioneer the Minimally invasive Surgical center at the U and to partner with Dr Buchwald. Dr Ikramuddin and Dr Buchwald did my dad’s surgery and like I said it was the only time at least at that time that they did a surgery together. Dr Buchwald I think was a brilliant surgeon however he is like 900 years old now and I don’t think he has any business operating on patients.

    Its kind of funny in a way, because I am a regular on 7b which is the med/surg ward at the u, all the nurses know me and most of the bariatric residents can’t stand me, because I am not shy on advocating for what I need given the fact I have this problem for so long now and I have been in the hospital so much.
    What sucks is my abdominal pain is back, but because of what happened, when they took me off opiates abruptly in my last stay, I am afraid that I have been labeled as a drug seeker. I got almost $17k in backpay, from Social Security, if I was drug seeking I would be out on the streets looking for drugs, it would be much easier. I am thinking because I have scientific proof about malabsorbtion of medications and nutrients, that if that label isn’t removed I am going to sue. Because as I said before I can go months at a time without narcotics. When I tried to commit suicide 2 years ago actually from today. I had the week prior abused my medication but I was actuely suicidal so i didn’t think of having to worry about having a problem, I took and ungodly amount of medications up until my attempt when I ended up at North Memorial, and they abruptly stopped all opiates and benzos ( I was on vicodin,xanax and meprobamate/miltown- an old tranquilizer usually prescribed for the elderly) and I went through no withdrawal whatsoever, the hardest part was not being able to smoke. I didn’t have a psychiatric history prior to my wls, nor did I use opiates even though I had chronic migraines, I didn’t get put on benzos until 2007, I had depression issues, because being a fat kid teased unmercifully at school from kindergarten to my senior year and then coming home and having parents who were ashamed of me, and put me on restrictive diets, kind of messes ya up, although I know people who have had worse. My life didn’t magically get transformed when I lost weight from my rny, even when I was exercising and eating balanced not dieting, and was my fittest it still bothered me that people make such a big deal about weight. I just had to reconcile in my own head, because I was programmed from the start that I was fat, ugly and worthless. I knew intellectually that it wasn’t right for others to feel that, it took longer though to reconcile that as it applied to myself.
    Because I have hypoglycemia and low blood pressure, it effects my mobility because I have to worry about falling which I do a lot. I still walk around often to blow off steam and relax, I am lucky because I get an aura when it feels like my legs are going to give out. I am going to when I am finished with doing what I have to for my reversal, get checked out for MS, I have all the symptoms of it except visual disturbances. I am just so freaking sick of doctors and hospitals.
    I am around if you need someone to talk to and I am on FB under Lisa Kasen….

  12. August 12, 2010 4:38 pm

    vesta44 –

    I don’t have anything useful to add to the discussion…but I’m so glad your here, vesta, to keep us informed on this subject. I wish I had more to say besides repeating what JeninCanada said, “Thank you to everyone for sharing your intensely personal stories.”

  13. August 18, 2010 6:56 am

    I’ve nothing useful to add either I just wanted to thank you for sharing this shocking story. I usually try to be accepting of myself at my current weight (about 265) but sometimes the self hate dialogue starts and I occasionally find myself considering WLS. Usually this consideration passes pretty quickly.

    • Lisa permalink
      August 18, 2010 8:13 am

      Cie, what I have had to learn is to love myself as I am and to advocate no matter what I weigh for respectful healthcare, medically and psychologically. Most people who have wls think its going to magically transform their lives. Even if they lose a lot of weight, then they become preoccupied with having excess skin, or the nutrient deficiencies that cause hair loss , loss of energy etc even if they dont ever have a moderate to major complication.
      That’s why I am so committed to people loving and taking the best care they can of themselves as is. I am anti-dieting in addition to anti-wls, because diets are not a lifestyle change. The problem I have, is I have done the research regarding metabolism issues between genders, between women, depending on their health histories, their ages, etc. Most doctors, nutritionists and dieticians have a one size approach fits all and its similar to the diet industry. Until the medical community approaches weight loss that may be needed in cases where people do end up with comorbidiites due to their obesity, what we have to work with from professionals will create situations that are not necessarily appropriate treatments, such as diets that are too stringent and encouragement of over exercising. From what I know but honestly haven’t studied in great length is the Health At Every Size approach is the best way for I think a lot of people to live their lives. But to get healthier mentally and physically you have to change the tape you play in your head regarding your relationship with how you feel about your weight. Being fat isn’t a felony, its a state of being, and as its been said on this board and other size acceptance groups you cannot tell the health of someone by looking at them, especially if someone is a person of weight. You also along those lines cannot tell mental fitness as well. Someone can look extremely physically and mentally fit, but you have no idea, of how much mental and physical energy they have to expend to maintain that type of appearance. I know for me spending most of my life on diets, doing wls, not liking myself for whatever reason, it was freeing to get to the point of not judging myself on what I eat, what I weigh and what I look like. I finally got a surgery date for my reversal of my gastric bypass, hopefully next year professionally I can be physically and mentally healthy enough to start publically advocating what I have been on this board and others and launch my business with an HAES approach. I am not on this board though to reiterate to troll for clients….The one thing I ask my friends who can’t accept the fact that I am a fat activist now and very anti-wls,anti-dieting is that if you found yourself at the end of your life, would you have regret that you didn’t spend more time agonizing over what you ate, what you weighed and what you looked like. The scary thing to me, is for some of their answers are yes, when most people of weight have spent most of their lives hating their bodies, and doing destructive things to be in the magic land of thinness (which aint so magic)and the answer should be no. Shannon nails it right on the head of calling diets “the fantasy of being thin”……

  14. SweetlilME permalink
    November 19, 2010 1:30 am

    I am going to be having WLS early next year. I fully understand the risks and complications. I am not trying to undermind anyones complications or anything like that. I am so sorry for what you all have gone through. Surgery from 1970 until now has radically changed. I understand that its still a big risk but with the medical advances there is a better prognosis for those who have WLS.I do honestly feel bad for those who do have complications (I have a friend whose intestines wrapped around themselves after WLS) so please don’t take offense to what I am saying. It also can be said that C-sections and Gallbladder removal from 1970s were very risky. But now they are routine. You can even have a vaginal child birth after a C-section where as before it was a definate NO! EVERY surgery has its risk and complications. AGAIN I am truly sorry for all your complications and pain I hope that you find peace and comfort! I do not mean to offend but I just need to voice my opinion.

    • Lisa permalink
      November 19, 2010 2:33 am

      Dear Sweet, While wls is performed routinely now, there is no such thing as a “routine” experience. My surgeon who is a nationally recognized surgeon in a nationally recognized hospital, still has patients including me all over the place with major life ruining complications. I had an open reversal of my roux-en-y 9-7-2010, I still ended up getting admitted to the hospital 6 weeks after my reversal due to ongoing complications from the original rny and spent all day Wednesday in my bariatric surgeons clinic, where while his NP realizes my complications are gonna be with me for the rest of my life, wanted to admit me, he did not,instead I got infused, was in a lot of pain and by the time I was done being infused, the nurse at the infusion center, was pushing for me to be admitted because of severe chronic uncontrollable pain, malnutrion, chronic nausea and vomiting, hypotension and hypoglycemia. Because now I have syncope episodes not only do I need as I was before because I am showing signs of MS and need a neurological workup, I also need a cardiac evaluation because of the fainting and erratic heartbeat and erratic variations in my blood pressure. I had no “comorbidities” due to my “obesity” prior to my surgery, I have a ton of health problems as a direct result of my laproscopic rny 9 years ago like thousands of people now do. I am at this point if I get anymore intellectually and physically disabled I am going to end up in a nursing home. I will be 41 in 13 days and have very little quality of life.
      I have done the research, I can say this objectively, do more research on this before you do anything else. I admit some non compliance on my part, but nothing to warrant me being this sick. Thousands of graduate post ops like me are disabled to varying degrees if they haven’t died. Some end up disabled and still with major weight regain. I have just started in the last of couple of months participating in the wls boards again. I get accused of scarying the newbies unnecessarily or accused of saying what I did because I was non compliant and am jealous of the few success stories (which is so not true) and had a major weight regain when I was put on a host of psychotropic drugs when I had my nervous breakdown from 2007-2009. I am not on them anymore and I have lost almost 60lbs, which my weight makes no fucking difference at this point, it didn’t when I gained most of my weight back because once I become too disabled to care for my kids properly nothing else cease to matter. Most people who meet me would never know right away that I was ever morbidly obese (which I was borderline) or that I am as disabled as I am intellectually and physically,and I usually because I am not obese any longer I don’t hit anyones radar as far as my outward appearance is concerned. However anyone who meets me and talks to me for me then 5 minutes upon further inspection can see that there is something not right about me. I have disengrating hair and teeth, I talk from a stream of conciousness which varies in lucidity and there is no logical sequence of thought most of the time in how I speak and write because of this, because I can go into altered states of conciousness depending on how hypotensive and hypoglycemic I am, its obvious I am in a lot of physical pain.
      I wish anyone still after who has the surgery good luck, and good health. You are ultimately going to decide whether you want it or not. I wouldn’t wish what I have gone through or put the people I love the most through, on my worst enemy. Because the data is skewed coming from the surgeons themselves, that is the only reason why they are still performing the surgery fairly easily. If I ever can regain enough of my health back to do advocacy on a major level I will. At this point though I need to regain enough of it to function and also right now I am in the process of securing legal counsel as I am at the point where I am not going to just sue my surgeon and my hospital, but the ASBS and the ASBMS. If a medication did the damage wls does to patients it would have been recalled a long time ago. Lisa

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