Another reason to not have WLS of any kind
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.