Written by Walter Lindstrom of PRIA Appeals
Today is the 20th anniversary of my “open” Roux-en-Y gastric bypass (RYGB).
Could it really already be 20 years? I guess so. My 9-month old daughter—my living, breathing “a-ha!” moment—is 20 years old and doing a summer abroad in Spain. My 16 year old son—the gift I hadn’t even conceived of yet—is about to get his driver’s license. Twenty years goes by in an instant.
Even as fast as the time has passed, I daresay I’ve learned things over those 20 years that might help someone else, whether a person exploring the possibilities of surgery—a soon-to-be patient anxiously awaiting their impending surgery, silently praying this really is the answer she or he hopes it will be—or people like me in the midst of their wonderful post-operative journey. I even hope these musings will offer something to healthcare providers offering surgery as a treatment option.
So, in celebration of a very important date in my life, my gift to myself is writing some reflections, one for every year. I hope these thoughts resonate with someone who might read them.
An Open Letter To The Bariatric Surgery Community
1. Bariatric surgery isn’t for everyone. Sure, there are medical reasons that disqualify some people, but I’m not talking about that. If you’re exploring it for yourself and decide it isn’t right for you, don’t let anyone try to shame you, scare you, beg you or otherwise try to convince you to have an operation you’re not fully committed to living with for the rest of your life. Allow yourself the gift to choose another path.
2. Be supportive (even if you may not agree with the choice). If someone you care about is having surgery and you’re not comfortable with their decision, it’s important to keep those feelings to yourself and not burden the person having surgery with them. Whether it’s pre-surgery or 20 years post-surgery, this process is really hard on us. It makes it easier when we have people in our corner.
3. Say it loud! Say it proud! I respect everyone’s personal decision about privacy and what they wish to share or not share about their lives, but I hope you can honestly, even proudly, talk openly about your decision to have weight loss surgery. I believe many of us keep it secret because we fear it’s not going to work, but I think committing to it out loud strengthens our resolve to succeed more than does a mysterious “gallbladder surgery” that wondrously resulted in a loss of 150 lbs. a year later. Besides, keeping it secret is a disservice to others like us who are often desperate to know “how is she doing it and why can’t I?”
4. Post-op patients should learn to use two words: “For me.” For 20 years I have been saddened by the “patient-on-patient” crime I read on “support” sites. “Only an idiot would have XYZ procedure….” “I’d never go to that doctor….” “If you don’t do ABC then you’re going to fail….” Please be supportive of others’ choices! Hostility does nothing to elevate your own choice. Learn to voice things positively: “For me, doing XYZ was the best choice….”
5. Pre-op and post-op patients should not underestimate the value of being in a well-run support group, especially before surgery and for a good amount of time afterwards. You will have questions about what to expect, what to do, and when do to it. Shared experiences and feelings in the early stages of the process are invaluable. Don’t dismiss them as too “touchy feely” (fellow men, I’m looking at you)—that is a mistake. We all need support, and asking for it is not a weakness.
6. “New” is not a value judgment. Just because a surgical option is new doesn’t necessarily mean it’s better than the “old” way, and it also doesn’t mean it’s worse. Don’t be blinded by “newness.”
8. There is no gold standard! The next time someone tells you the “X procedure” is the “gold standard,” you might want to remind them we haven’t used the “gold standard” since 1933. That term is really quite useless. Insist a healthcare provider speak to you in terms of what is the best course of action for your personal situation.
9. Repeat after me: doctors and patients should make decisions regarding medical treatment and surgery. There is no place for insurance companies to substitute their judgment for that of your doctor.
10. Remember, the bathroom scale is non-judgmental. It can’t tell you you’re a “good” patient/person or “bad” patient/person. It just gives a number.
11. Plateaus happen. When you’re a patient early in your post-op journey, remember that the number on the scale may not move in the direction you’re hoping for every day. It may not move at all for weeks at a time. That’s pretty normal, so don’t let it cause you undue stress.
12. Reach a balance between using the scale to obtain information so you can assess how you’re managing your chronic disease and stalking it in the hope the number says what you hope/want/need it to say. We patients all have a terrible fear that we are destined to fail surgery just like every diet we ever tried. We tend to freak out when the number doesn’t go down or, God forbid, it ticks upward.
13. You have the power to choose how that number on the scale is going to affect how you feel about yourself. I choose to have that number tell me how I’m doing managing my chronic disease, no different than a hypertensive patient paying attention to blood pressure readings or diabetics looking at HbA1c numbers. Sometimes I manage my disease better than at other times. But for me, checking the number a couple times a week works better. Find your own best practice.
14. If you’re really concerned about a plateau or weight regain, contact your doctor’s office before you make that social media post. Too many of us post online as a substitute for reaching out to our bariatric programs, and get “advice” that isn’t helpful.
15. Don’t make the same mistake I did. If you’re regaining weight after you’ve had surgery, please do not avoid seeing your surgeon because you’re embarrassed or feel like you’ve failed them. I had a revision 9 years after my original surgery. I waited way too long to address it and I speak with bariatric surgeons and health professionals every single day! Most quality programs and professionals would want you to make an appointment to see what’s going on so they can help. Let them!
16. If you’re a bariatric surgeon, nurse, integrated health professional or office support, please be compassionate and understand that we have a chronic disease. If we’re struggling after surgery, the last thing we need is for someone who is supposed to be in our corner to judge us. What we patients are going through, whether year 1 or year 20, is hard. Please don’t make it harder.
17. Repeat after me: Needing a revision doesn’t mean you’re a failure! Needing a revision doesn’t mean you’re a failure! Needing a revision doesn’t mean you’re a failure! Say it to yourself every day.
18. The nature of bariatric surgery support groups invariably changes the further out from surgery you are. My support group no longer meets at the hospital where I had my surgery. My support comes from my family, friends and colleagues and has as much value for me at this stage of my journey as any bariatric in-person or online support group I was part of as a member or that honored me with an invitation to speak and share experiences.
19. Whether you are pre-op or 20 years post, we all need help along the way. Take a minute today to say “thank you” to someone who is helping you with your journey. It feels good. In addition to the many people who helped me personally, as patients we owe thanks to two organizations, their members and their leadership. I joined the American Society of Metabolic and Bariatric Surgery in 1996 and since then it has grown to help, guide, and shape important decisions that affect all of us as patients. It has been and will continue to be an important part of my life, and a place where I have met many of my closest friends. Obesity Action Coalition has a similar place in my life. Its amazing team has achieved things I never dreamed possible when I was being wheeled into the operating room or when I started my advocacy business. If you haven’t joined OAC, please do. We all deserve it.
20. Twenty years is a long time. For me, my journey has meant an improvement in health and longevity, which allows me to receive the love I get from my children Marissa and Jia. They honor me every day by growing into truly amazing people and I know in my heart that if I had not had surgery 20 years ago I never would have been around long enough to see that. But most important to me is the need to say thank you to my hero and love of my life, Kelley. She is my hero because she loved me regardless of how I looked on the outside when my BMI was over 60. She loved me through the scary reality of weight loss surgery, not once but twice, wanting only for me to be healthy. For me, Kelley brings meaning to every day of my journey. She is my reason to travel this path and I’m blessed by her and because of her. I’m a very lucky man.
I can only hope some of you can someday be similarly blessed during the journey you’re taking. Good luck!