b y J a n i n e V. K y r i l l o s , MD
Dr. Kyrillos is a physician with Thomas Jefferson University and Jefferson Internal Medicine Associates, Philadelphia, PA.
I am a physician in Philadelphia in a large internal medicine practice, and I underwent an open Roux-en-Y gastric bypass procedure a little over one year ago. I started at a BMI of 41 and am currently at 28.5. As any physician who has been a patient can attest, being on the receiving end of healthcare is a sobering, learning experience. Obesity is a particularly complicated disease loaded with attitudes and bias from every angle. As a member of the medical community, it is exciting to imagine the myriad of possibilities for prevention and treatment that are on the horizon. As a patient, it is depressing to see how little progress has really been made and just how far we still need to go.
I felt very hopeless and defeated about my weight for most of my life. At nine months old, I was in the 90th percentile for BMI, and by 30 months, I was off the charts. My first of many diets was in the second grade. It’s a familiar story. By my 20s, I accepted that diets only served as a tease to capture a glimmer of hope at what life could possibly be like in single digit sizes. I felt like Charlie in the book Flowers for Algernon, who is a mentally retarded boy who had an eye-opening experience of accelerated intellectual development, but then decompensated back to his prior level of functioning, having only gained a painful awareness of what he was missing and where his place really was in society. So, I became resolved to staying fat, and I was adamant about not letting it interfere with my life. I became an avid scuba diver; I lived in Hawaii; I jumped out of airplanes; and I went to medical school.
In my 30s, I was not as successful in cheating the plight of obesity. I developed hypertension, GERD, obstructive sleep apnea, hyperlipidemia, osteoarthritis, and was on a narrow path to diabetes. I felt helpless and trapped. Not surprisingly, I was not very comfortable or effective in counseling my patients on healthy lifestyle habits and quickly brushed over the painful topics of diet, exercise, alcohol, and even smoking cessation. I obviously could not control my own eating, so how could I counsel my patients to change their own destructive habits?
THE BEGINNING OF MY FORWARD JOURNEY
In April, 2005, the Annals of Internal Medicine issued guidelines in the treatment of obesity. This was the first time I read about the Swedish Obese Subjects (SOS) trial that compared the outcomes of bariatric surgery with that of nonsurgical weight management options in obese subjects. At eight years of follow- up from the SOS study, average weight loss was 20kg among 251 surgically treated patients, but average weight did not change among 232 medically treated patients. The study also reported that their patients who received gastric bypass lost more weight than those treated with banding procedures or vertical banded gastroplasty. I felt validated in my decision to abandon the traditional attempts at weight loss, but found a flicker of hope. For the first time I considered surgery. I had been secretly intrigued and envious of my patients who had had gastric bypass, but I had never considered it for myself.
Because of logistics with work schedule and travel plans, there were almost six months between the time I decided to have the surgery and my actual operative date. During that time, an exciting dynamic began to evolve between my patients and me. I kept my decision private until much closer to my surgery date, and I was eating more than ever in an ill advised, last supper syndrome frenzy, so if anything I was gaining weight. But, I was talking to my patients more than ever about their weight and eating habits. I found myself addressing their struggles and working with them to find realistic approaches to developing more healthy habits. I noticed more of them were losing weight and reporting increased activity. I referred several of them for bariatric surgery who would never have considered it in the past. Unknowingly, my own newfound perception of hope and expectation was spilling out in my practice and helping to encourage and motivate my patients. This was my first valuable lesson – that my own biases and what I believed to be true had a direct impact on my patients, no matter what I actually said to them.
MY PREOPERATIVE ROLLERCOASTER
During the months leading up to my surgery, I participated in the complex schedule of preoperative evaluations, educational classes, and support groups. My first experience was a half-day surgical overview and nutrition class. Patients were required to attend this class before they even met with their surgeon at an out-ofpocket cost of $250. After a minimal introduction, the instructor dug into a bag and pulled out a football. “This is the size of your stomach now. You can fit a lot of food in here,” she announced as she waved it around the room of desperate, scared, fat people stuffed into miniature auditorium seats. She then dug back into her bag of tricks and pulled out a golfball. “This will be the size of your stomach after the surgery. Got it?”
The remainder of the class had a similar tone of condescension, warning, and admonishment. Perhaps this was their method of weeding out anyone with unrealistic expectations. To me, it seemed a missed opportunity to give insight and guidance to a group of courageous patients embarking on a critical life decision.
My next stop was the psychological evaluation at an out-of-pocket cost of $200. After completing several generic questionnaires, I met with a nervous, young psychology intern who quizzed me on what I learned inthe education class. He inquired about my expectations and available support after discharge from the hospital, shook my hand, and wished me luck. Nowhere in the questionnaires or my interview was there any exploration of eating habits or history of psychiatric or eating disorders. I heard a bariatric surgeon lecture at an eating disorders conference where he proclaimed that his program didn’t get many patients with binge eating disorder or bulimia. Certainly they weren’t being identified in the psychological evaluation I underwent.
As an interesting aside, at a bariatric conference just the week before my surgery, I had the opportunity to have my indirect calorimetry measured on a metabolic cart. It estimated that my daily energy expenditure was 3,500kcal. That’s how much food I was eating to maintain my body weight!
Unsatisfied with my preoperative education and psychological evaluation, I turned to the internet, where many of our patients also turn for information, advice, and support. I posed a question to several email groups and bulletin boards: “Pain and vomiting never stopped me from overeating before; how will surgery make it different?”
“The food has nowhere to go,” these strangers in cyberspace replied. “Food won’t taste the same.” “Once you experience dumping syndrome, you won’t go there again.” “You won’t experience hunger.” “You are forced to find other ways of coping with your issues.” Perhaps I was looking in the wrong places, or perhaps in my denial I blocked out the answers that I didn’t want to hear, but my own experience has been very different. Online, I also read hundreds of questions and comments from patients in all stages of the process from all over the world, and learned countless opinions on all aspects of the surgery, recovery, and dietary changes. When I tried to look up the answers in the literature, I found little data to give any evidencebased guidance to these patients.
MY POSTOPERATIVE ROLLERCOASTER
My surgery was straightforward and without complications. I was home on postoperative Day 2, attended an eating disorder conference on Day 5, and rode my bike on Day 10. I stuck to my prescribed two weeks of liquid followed by six weeks of purees, but I found it very difficult to stick to the quantity of food recommended. I was hungry and thirsty and a full glass of liquid went down easily. I entered the solid food stage right at the onset of the Christmas season and had a difficult time resisting the trays of hors d’oeuvres and desserts at the holiday parties. Like most patients to whom I’ve spoken, I was disappointed not to experience the much threatened dumping syndrome. I soon learned that it was the fear of dumping syndrome more than the actuality that deterred many patients from experimenting with taboo foods.
As a skeptic who liked to test limits, I was enjoying Christmas cookies far sooner than was prudent and soon found old habits creeping back. As I became more and more outof control with my eating, I reached out for help from my surgeon, dietitian, and a psychologist who runs programs for bariatric patients. The responses from them boiled down to, “Stop eating.” “Ignore the hunger feelings and the urges to eat.” “You’d better quickly retrain your behaviors before the honeymoon period ends.” “If you don’t follow our advice, you won’t have a desired outcome.” I have to insert here that like many patients, I was convinced and terrified that I was going to fail the procedure and not lose any weight. I was baffled. What was the point of the surgery if I had to still rely on my own willpower? If it was a matter of starving myself, I could have starved myself all by myself! Why did I undergo such a major procedure?
I soon learned my next major lesson in the process. They stapled my stomach, but they didn’t staple my brain. I was not going to overcome years of binging and emotional eating overnight. The jargon in the gastric bypass subculture is that the surgery is only a “tool” and not a magic cure. I either didn’t hear or didn’t pay attention to this as a preoperative patient. I’m not sure how it would have changed my decision, but it certainly was testing me as a postoperative patient.
So far, I have lost about 65 percent of my excess weight and have been on a plateau for about four months. My eating still feels out of control, and I can eat far more than I ever expected, albeit much less than I did before. I grapple with my tendency to graze and constantly remind myself to monitor portion sizes and hunger cues, and to find ways to nourish myself without food. My newest mantra is, “Chocolate does not rule my life!” But a major positive is that I am much more fit and active than I have ever been. Along with a newly discovered enthusiasm for yoga and Pilates, I recently biked 65 miles in the American Cancer Society Bike-athon, and rode the MS-150 on my slick new road bike.
THE NEED FOR EDUCATION
Despite my criticisms about the process and my ongoing struggle with the outcome, I would have this surgery again in a second and continue to encourage my patients who are interested to pursue this as a treatment option. To be honest, I have begun to challenge my own biases toward obesity. It really needs to be treated, researched, and reimbursed as a chronic illness to individuals and an epidemic to society. The ease and availability of food have evolved at light speed proportions in relation to our bodies, which still have the hunter-gatherer mentality of eating whatever is in sight. While some people are lucky enough to stay at a healthy weight despite this abundance, the prevalence of people who are overweight or obese continues to rise. For the first time in history, there are more people in the world who are overweight than are undernourished.
Bariatric surgery is not an ideal treatment and is far from a cure, but it is currently the only option available for morbidly obese people to have any hope of significant weight loss. Another lesson I have learned is how much education (in obesity and bariatric surgery) is needed among physicians. While I felt very supported by my family, friends, and colleagues, I have had many of my patients encounter difficulties in getting the support they need from their physicians. One patient with a BMI of 50 recently transferred into my practice because her former primary care physician refused to refer her to a bariatric surgeon because “she should be able to lose the weight on her own.” Her situation is not uncommon. I have received letters from consultants who strongly discouraged patients from pursuing gastric bypass. Not surprisingly, many of these same physicians become believers when their patients return with lower blood pressures, blood sugars, cholesterol values, oxygen requirements, and pulmonary pressures after significant weight loss that they never could have achieved or maintained by conventional measures. In 2002, the Agency for Healthcare Research and Quality (AHRQ) estimated that 0.6 percent of the people who qualified for bariatric surgery actually underwent the procedure. Can you imagine the outrage if they reported the same statistic about breast cancer treatment?
THE NEED FOR RESEARCH
Along with basic education, there needs to be more research related to bariatric surgery as long as it remains a viable treatment option. There is much information and misinformation circulating in this subculture. Part of the problem is that there still aren’t answers to the questions that patients have. Some legitimate questions for which I have failed to find answers in the literature are: 1) Are protein supplements better than food sources of protein? There is a popular notion circulating in this population that taking a certain amount of daily protein supplements, above and beyond regular caloric intake, will help with appetite, stimulate weight loss, and delay the hypertrophy that reverses the malabsorptive benefit of the bypassed intestine; 2) Are carbonated beverages truly contraindicated? While there is no data to support it, many dietitians and surgeons discourage diet soda based on the theory that the released gas will stretch the pouch and/or enlarge the gastroenteral anastomosis; 3) How is medication absorption affected? Will long-acting and sustained release products have the same predicted bioavailability?; 4) How much does the anastomosis enlarge over time and how can we prevent or revise this to ensure sustained weight loss?; and 5) What is the effect of augmenting bariatric surgery with weight loss medications such as sibutramine, orlistat, or rimonabant in patients who fail to lose or maintain a certain proportion of their excess weight?
MY PRESENT AND FUTURE
I have traveled far in the months since I began to investigate gastric bypass as a treatment option for myself. I am thankful for the endless support and encouragement from my family, friends, and colleagues. I have also witnessed and experienced bias and misinformation from both patients and the healthcare community. I transformed my own denial and despair into a more hopeful and productive challenge, while helping my patients to make more healthy and informed decisions about their own health. I count my blessings as this journey continues to open many doors for me both personally and professionally, and I hope my experience will help patients and colleagues in this ongoing struggle against obesity.
Category: Patient Perspective