Lessons Learned: Celebrating 20 Years As A Bariatric Surgery Patient
I don’t remember the first day of OJ Simpson’s pre-trial hearing for the murders of Nicole Simpson and Ronald Goldman. I know my wife Kelley does – she watched the whole thing from a waiting room in a hospital in San Diego. Me? I was having surgery. It was June 30, 1994.
Today is the 20th Anniversary of my “open” Roux En Y (RNY) Gastric Bypass.
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. 20 years goes by in an instant.
Even as fast as the time has passed I dare say I’ve learned things over those 20 years which 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 have the audacity to hope these musings will offer something to health care providers offering surgery as a treatment option.
So, in celebration of a very important date in my life, my gift to myself is in writing some reflections, one for every year. It is my sincere hope one or more of these thoughts resonate with someone who might read them and need them. Please share them liberally with anyone who might benefit.
An Open Letter To The Bariatric Surgery Community
1. Bariatric surgery isn’t for everyone. Sure there are medical reasons which 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. “Support” is not a 4-letter word! If someone you care about is having surgery and you’re not comfortable with their decision you’re probably feeling a host of emotions ranging from fear and apprehension to disappointment and anger. DEAL WITH IT! Whether it’s pre-surgery or 20 years later this is really hard on us. It makes it easier when we have people in our corner and not trying to sabotage us.
3. Say it loud! Say it proud! OK – I respect anyone’s decision about privacy and what they wish to share or not share about their lives, especially in this age of social media. But I really 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” which 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 am constantly 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….” 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….” Like I said, “support” is not a 4-letter word!
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. Questions need to be asked and answered 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 blow them off indiscriminately as too “touchy feely” (and yes fellow MEN – I’m talking to US!). That is a mistake.
6. Just because a surgical option is new that doesn’t necessarily mean it’s better.
7. Just because a surgical option is new that doesn’t necessarily mean it’s worse.
8. There is no Gold Standard! The next time someone, anyone, 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 health care provider speak to you in terms of what is the best course of action FOR YOU.
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 JUDGEMENT FOR THAT OF YOUR DOCTOR AND WHEN THEY TRY TO DO THAT YOU SHOULD FIGHT IT WITH EVERY FIBER OF YOUR BEING!
10. Remember the bathroom scale is non-judgmental. It doesn’t think you’re a “good” patient/person or “bad” patient/person. It gives a number.
11. Plateaus happen. When you’re a patient early in your post-op journey please 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. Pretty much that’s normal so don’t stress about it.
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, often unspoken, 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 choose how that number on the scale is going to impact 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, knowing the number a couple times a week works better. When I tried managing my disease by consciously deciding I didn’t want to know the number because I didn’t want to be a “slave to my scale” I went by how my clothes fit. That was a mistake.
14. If you’re really concerned about a plateau or weight regain, contact your doctor’s office FIRST – then you can make that social media post. Too many of us post as a substitute for reaching out to our bariatric programs. Sorry but sometimes the “advice” isn’t so good.
15. Don’t make my mistake. If you’re regaining weight after you’ve had surgery, PLEASE do not avoid seeing your surgeon and his/her team 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 see or speak with bariatric surgeons and integrated health professionals around the world every single day! You haven’t failed unless you make the choice to not see someone about what’s going on. Given the chance most quality programs and professionals would be begging 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 doing surgery because you care deeply for patients like us and understand that we have a chronic disease. If we’re struggling after surgery the last thing we need is someone who is supposed to be in our corner being judgmental. What we patients are going through, whether year 1 or year 20, is freaking hard. DO NOT 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!
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 which 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 yours. It feels good. After 20 years I have so many people who helped me that to try and list them by name risks leaving someone important out so I’m not going to take that risk. But I will tell you we as patients owe thanks to a two organizations, their members and their leadership. I joined the American Society of Metabolic and Bariatric Surgery in 1996 and at the time it was closer to a “cult” than it was a major specialty surgical society. ASMBS has grown to help guide and shape important decisions that affect all of us as patients and it has been and will continue to be an important part of my life where I have met many of my closest friends. Equally true is the place Obesity Action Coalition has in my life. Simply stated, there is no other voice out there for us and I’m OK with that because the OAC and its amazing team has achieved things I never dreamed possible when I was being wheeled into the operating room or when I began my new professional life as “The Obesity Law & Advocacy Center.” If you haven’t joined OAC – please do. We all deserve it.
20. Twenty years is a long time. God willing there’s going to be a lot more. FOR ME my journey has meant an improvement in health and longevity which allows me to receive the love I get from my daughters 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 makes possible anything of meaning I experience 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!