Why we never hear, why people don’t talk and why people don’t want to know...

Dr. Sydney Smith at Medpundit shares what her patients experience after bariatric surgeries, offering perceptive insights from a physician’s point of view. It’s remarkable because it’s information that few physicians dare to talk about. Her post, Bariatric Babies, begins by addressing concerns about the next up and coming trend of “weight loss surgery” for children, also discussed here. She says the long-term effects on young people are largely unknown and that no one really knows whether the bariatric surgeons’ claims that complications are minor compared to the risks of being fat into adulthood are true. She doubts it. She writes:

The end result of bariatric surgery is surgically induced malnutrition:

Gastric bypass essentially results in surgically enforced, very low-calorie, low-carbohydrate dietary intake, thus requiring attention to adequate (>0.5 g/kg) daily protein intake. Micronutrients, including calcium, vitamin B12, folate, multivitamins, thiamine, and iron (for menstruating female subjects), must be supplemented after gastric bypass. A bariatric dietitian who is familiar with the progressive addition of food items with more complex compositions and consistencies can help with meal planning and nutritional “troubleshooting” as recovery proceeds. Finally, nonsteroidal anti-inflammatory medications should be avoided, to reduce the risk of intestinal ulceration and bleeding.

Dr. Smith then discusses the patients in her practice who have had bariatric surgery. A few have done okay, but most haven’t even though they had their surgeries done by the same surgeon and at the same medical center.

One lady passes kidney stones every couple of weeks. Another regurgitates anything solid that she tries to eat and yet has only lost 20 pounds in six months. She says she makes up the calories in liquid. Another can not eat more than one slice of toast at a time without getting sick. Some have chronic diarrhea. Many have nutritional deficiencies. A couple have gained their weight back after 10 or 20 years. And yet, not one of them says they regret having the surgery, such is the praise they get from others for losing weight. If asked, every single one of them would call themselves healthier, but from my perspective their health is worse. They all require more monitoring and more interventions than they did before having the surgery.

It's the height of arrogance, however, to push this medically induced malnourished state on a still developing and growing child. We don't know what damage we may do in the long-run to their bodies or their minds with these procedures.

She notes an incredibly important aspect of these surgeries that is rarely discussed: “Such is the praise they get from others for losing weight....”

Her observations partly explain why we hear so little about the severity and prevalence of tragic outcomes among these patients, why patients are not speaking out and bringing lawsuits in droves, and why so few patients really understand beforehand the risks and what their lives will be like after surgery. These are critically important realizations for healthcare professionals, families and anyone considering these surgeries. So, I am going to expound upon them in hopes that it will bring better understanding and enable us to better help our patients, friends and loved ones.

One bariatric patient shared with other patients her experiences:

...If you tell the average person that doesn't really know what weight loss surgery is, they are totally stunned. They just know that your stomach is smaller and that you lose weight. They don't know that the body is getting butchered up. And for the people who do know what the surgery entails, they are so caught up in the disgrace of being obese that they think it's okay to butcher the body to be almighty thin.

When I became very sick, almost 6 years ago, trying to find a doctor to help me, I had friends and relatives tell me “but you would be dead if you hadn't gotten the surgery!” --- and here I was, dying when they were telling me this, because of the surgery! This is how ingrained it is in society, how dangerous it is to be obese.

We are told that if we don't get the surgery we are going to die in 5 years and yet 5 years down the road we start to have problems with our surgery. Some people then, seek out 1,2,3 revisions to redo their surgery because they are so scared of being fat again. So we're giving our seal of approval to the doctors to just continue mutilating our digestive system.

Fat people have been told their entire lives that their natural weights are their own fault. When weight loss diets and programs fail, they are led to believe that is their fault, too. After these surgeries they are complimented on their weight loss and very few patients dare admit publicly that they are experiencing horrible side effects and that the quality of their lives is far worse. And it’s natural for anyone to not want to admit that they made a mistake and were victims of a scam. So few do. Denial is intense, even when patients are dying. Denial distorts reality and even perceptions of their own experiences.

“I see this all the time with weight loss surgery victims,” said obesity researcher Paul Ernsberger, Ph.D., at Case Western Reserve School of Medicine, Cleveland, Ohio. “Even after they’ve been in and out of the hospital, or are in continual horrendous pain, or even after they’ve gained back all the weight they lost, they still say they’d do it again in an instant. In many cases, they are also persuading friends and family that they should have the surgery too. This is also why the ‘quality of life’ data after weight loss surgery is spurious.”

Most doctors and psychologists, even those performing pre-surgery evaluations, don’t realize what fat people, especially women, encounter when they try to get balanced information about these surgeries, support or help. The patient advocacy and support groups, forums, message boards, chat rooms and even surgical information seminars have almost religious cult-like atmospheres. Few members realize these groups are usually supported, hosted and/or moderated by industry interests. As was discussed here, the culture among these groups is to maintain and foster “hope” to be “normal” at all costs. Denial is intense among the post-op patients, many still in their honeymoon period of the first (one to) five years, who mostly talk glowingly of their weight loss. True problems and negative information are almost never discussed or permitted.

Patients who are having problems and come forward for help or to share their experiences are often sadly attacked, derided and accused of being at fault. Naysayers are quickly shut out, banned or driven away. The group reacts angrily and disbelievingly to the truth — those are natural,understandable denial reactions to protect themselves from the frightening reality of these surgeries. Not surprisingly, very little balanced information is available to prospective patients, either.

Update 2/9/07: One patient had anonymously described what people who try to speak out at surgical chat rooms encounter. She then talked about the emotional pain that fat people experience in our culture and of her own health problems after her surgery that were so severe that she is one of the growing numbers who have sought "take-downs," where surgeons attempt to reverse the surgery. They are still largely left with their surgical-induced health problems, however, which can include severe osteoporosis, auto-immune disorders, nerve damage and memory loss. While she has been a reader of this blog and had extended a whole-hearted “Of course, you have my permission to print anything I have written!” because she wanted to help others by speaking out, the moderator of the forum where she had first shared these words has subsequently relentlessly criticized her for speaking out outside the folds of the group and about this blog article and its author for revealing negative information about these surgeries. Sadly, she needs their support foremost, so in consideration of her predicament and anguish over possibly losing her friends there, her posts have been deleted.

Such is the mind hold these groups have over even the most vocal patients who have reached the point of being "anti-WLS," as she had. There are support groups for those who’ve been ostracized on these groups for their negative messages about bariatric surgeries and for daring to speak out. To read more about the heartbreaking stories and the bad outcomes that are all too common among bariatric patients, check out: http://health.groups.yahoo.com/group/OSSG-gone_wrong/

Increasing numbers of patients, whose problems have become severe or life-threatening, have been able to move beyond their denial. Occasionally, they speak out, but most still can't bring themselves to.

Those having long-term health and nutritional problems are the norm and are forming their own private support and information groups. But a few also continue to try and get information to new members of their original surgery forums. One long-time survivor visited her’s several times during the last year of her life, pleading for everyone considering the surgery to do their homework and understand what they were going to do to themselves. Her last post was this past October when she talked about her third hospitalization that summer for malabsorption, almost dying, and how she never imagined wanting to gain 10 pounds. Her closing haunted me at the time: “Death masks don’t look good on anyone.”

After her death, her sister came to the forum and shared her story:

I have been a 35-year bystander through this. Heart attacks are only one of the major side affects. My sister had non-stop diarrhea for 35 years...she could not go to a public restroom because of it. Imagine trying to participate in life away from your house and not be able to go to restroom. ...[she] also broke both of her wrists several times, both of her knees, her foot, her ribs....Her teeth were starting to loosen. All of this due to severe osteoporosis. Yes, she took her meds - a whole table top full....Oh, did I mention that for a period, she went blind? The opthomologist said her corneas were “melting” due to the malnutrition. Malabsorption and diarrhea are what are listed on her death certificate even though the heart attack was the end result of her starvation.

I don't tell you this to be dramatic. I'm just hoping for a broader perspective on the possibilities.

Another young woman gave regular updates on her little sister at an online community:

My sister is once again in the hospital. She had gone a month, though, without being hospitalized which was almost a new record since her weight loss surgery. It’s another intestinal blockage..her second of the summer...Her weight is so low her doctors have begun to tell her to gain weight. She looks skeletal. She would gain weight if she could. She thinks she looks terrible, too. She just can’t eat anything. The doctors have said that basically, my sister is disabled for life. There won’t ever be “normal” for her again. They don’t know if they can ever stop her pain either.

[months later, she wrote:]....My sister’s doctors have decided she does have beriberi and...are fairly sure there’s been some brain damage. She just loses her shit during a conversation... starts saying things out of the blue that have nothing to do with anything she was discussing. She has finally realized just how much she fucked up. Fucked up her body, her life, she just fucked it all up. She’s terrified. My mom said that sometimes she realizes that her mind has just done it’s own thing mid-word and she just starts crying because she can’t stop it from happening.

Also they think [her coordination problems] are more brain damage and nerve damage. She can hardly pick up her feet to walk..she shuffles like an old lady. I know this is depressing and I know I have waaaay exceeded my whining allotment.

I just feel like if I share this, maybe one person might read about her as a real person, and see what it does to a real live family and say “no.” She isn’t just a statistic and she was a model WLS patient for almost a year. She’s a real person, a real woman whose life is really ruined before she ever allowed herself to start it because she didn’t think she could have a life as a fat woman. She was beautiful and funny and sassy and yes, a huge pain in my ass and I didn’t even like her. But I would give almost anything to be having some stupid argument with her again instead of wondering if the next time she goes into the hospital will be her last.

I have been hesitant about sharing her story. I wanted people to know the actual horror of this surgery, but I felt like I didn’t have the right to speak for my sister, you know? But it IS my story too, just from a different point of view. I’m seeing my sister deteriorate as well as seeing my mother try and handle it all and cope with the knowledge that her daughter’s life is surely shortened and that she will probably be forever dependent on my mother and it wasn’t some illness from a TV movie of the week, this was done to her on purpose.

There are countless heartbreaking stories of young people’s lives destroyed. But for years, I could find no publisher who would publish them. Sadly, it’s these are the sides of the picture that healthcare professionals, friends and family, and prospective patients rarely hear.

How many of us are guilty of not hearing or caring to understand why?

© 2007 Sandy Szwarc

A very special thank you to all of those who graciously gave their permission to be quoted in this article, in hopes that their stories will be of help to others.