Three Reasons Some Longer-term Post-Ops Don’t Attend Surgical Support Group

Disclaimer: This blog post does not reflect the views of the OAC, the National Board of Directors or staff. Information contained in this blog post is not based on scientific research and has not been validated.

In the first part of this blog series, I expressed the sentiment that I (and, I suspected, other longer term post-ops) feel reluctance to participate in bariatric surgical support groups for reasons other than logistical ones. In the second post, I went over some of the dynamics that, from my perspective, frame the surgical support group experience.

Now, I’d like to share with you some of what my fellow longer-term post-ops have shared with me, either through my informal poll or through messages and e-mail.

When I think of my own hesitation to attend support group, I usually first think about the subject matter. Sometimes it doesn’t seem to fit my life very well. It did when I first had surgery but as a longer-term post-op it seems a little less relevant to my day-to-day life.

I wondered if others felt this way, so I asked. In my poll I asked people if they felt the topics at support group were relevant to their everyday lives. Of the 100 respondents, 75 answered this question with 45 percent saying yes, they did feel the topics were relevant, 21 percent said no, 33 percent said they were unsure. I then asked respondents to explain their answer and there were three points that got mentioned frequently.

As I thought about these points, I began to realize, however, that the discord that some longer-term post-ops feel is not necessarily with the subject matter itself, but the fact that newer post-ops and longer-term post-ops approach certain subjects from different perspectives.

Below I’ve outlined each of the three topics and how, from my experience and what others have told me, longer-term post-ops approach them.

“My support group is mostly geared toward newbies and pre-ops”

Of the 32 people who answered they didn’t feel the topics at support group were relevant to their lives, 13 people expressed this sentiment in some way.

As I said above, I believe newer post-ops and longer-term post-ops can approach the same topic from very different perspectives. I think the alienation I personally feel is not so much that the support group itself is catered toward newbies and pre-ops but that there aren’t enough long-termers like myself present to represent that perspective. As such, I can sometimes be the only one talking from that perspective and that makes the conversation less relevant to me, because I’m not getting feedback on what I’m experiencing.

Just to give some examples, here are two topics where I’ve heard vastly different perspectives from newer post-ops versus longer-term post-ops.

      • Eating: I’ve experienced, and many post-ops have told me about, a discord in how we approach this subject. A newer post-op is more likely to have severe restriction. As such, their primary focus is getting enough food and nutrients. Discussions about food can (and often do) center on eating strategies to properly fuel the body and support on-going weight loss. Conversely, a longer-term post-op is more likely to have hit their natural plateau. Further, many have larger eating capacities than they had as a newer post-op. Some may have experienced regain. A conversation about food that might be relevant to a longer-term post-op, then, might focus on strategies to avoid temptation, re-enforcing the basic bariatric eating style (i.e. What to do when you’ve “fallen off the wagon.”), etc.
      • Weight Loss: Weight loss surgery being what it is, newer post-ops (and even up to and through the two year mark) are in the losing phase. This is accompanied by a lot of strong emotions. There’s joy, fear, determination. But the main point is that they are losing and that losing is their rightful goal. For a longer-term post-op who has hit their natural plateau, losing is no longer the goal, but maintaining. I heard from many longer-term post-ops that they are confused about how to eat to maintain their weight (and whether they should, in fact, eat differently than they had been up to that point) and that maintenance isn’t a frequent subject at their surgical support group.

“I regained and I don’t want others to know.”

This is a sentiment I personally know very well. From the patient’s perspective, interacting with the surgeon’s office after you’ve regained is something akin to going to the principal’s office. I have nothing but admiration for the people who are willing to do that for themselves. However, I can also understand the sentiment of those who don’t.

To combat regain after bariatric surgery takes honesty and bravery. And many of us are honest and brave, because if we weren’t we wouldn’t have had surgery in the first place. But still, regain seems to feel like the “dirty little secret” you don’t want anyone to know about.

From my personal experience, this has to do with two things, both of them having to do with perception.

The first perception is that the patients in the support group room are going to judge you if you’ve regained. Having been judged for most of our lives as people affected by obesity, this sentiment should not be hard to understand. I also heard from many longer-term post-ops that in the midst of dealing with regain it’s hard to hear about others losing weight rapidly. These factors all seemed to contribute to feelings of depression which then seemed to lead to avoidance of support group.

The other factor is the perception that our bariatric staff are somehow judging us. In my poll I heard things like, “Our practice doesn’t talk about regain because they don’t want to scare the pre-ops.”

I don’t know if that’s true but I will say that I’ve heard the same through emails, messages and on my social media platforms many times. This seems to indicate that, at the very least, regain needs to be discussed more!  But that and more recommendations are for my next post.

“I feel like I give more support than I get.”

This sentiment is important because more and more longer-term post-ops are turning to non-surgical support groups. There are huge online communities of longer-term post-ops and I think this is because people perceive that they are more likely to get as much support as they give if they join support groups online, especially those with higher memberships of longer-term post-ops.

As it stands, I personally think this is just a numbers problem. If we accept the assumption (and keep in mind that we don’t have to accept it) that longer-term post-ops are most likely to get relevant support from other longer-term post-ops, then a lack of attendance of longer-term post-ops can certainly cause a person to feel this way.

This sentiment is the reason why I’ve been reluctant to attend my surgical support group in the past. I don’t mind sharing my experiences with newer post-ops nor do I mind answering questions. I’m also not shy about sharing my experiences but it does get a little lonely at times!

I can clearly recall one meeting where I mentioned being able to eat fairly heartily (for a bariatric surgery post-op) to which many of the fellow group attendees were incredulous. This wasn’t any sort of intentional alienation, but the differences in our experiences meant that many of the attendees were simply unlikely to relate to my experience.

Why is this even important?

While I think that online and peer-led support communities are important, I also think they can be a danger zone for misinformation. Some groups are very vigilant about ensuring accurate information is disseminated. I’ve seen others that have no such vigilance.

Heralding back to my last post, the world of bariatrics is still largely un-standardized. We each have different sets of rules and, because of this, we put a lot of stock into peer support. We are constantly asking questions, comparing programs, troubleshooting within the patient community. I cannot count how many times I’ve had to tell someone on my Facebook Page (urge…no, beg really!) to seek out the advice of their bariatric or medical professional. But we cannot assume every peer-led support group leader is adequately educated to do that. I’m not even sure if I am!

That’s one reason I think surgical support group is worth fighting for. It puts professional bariatric staff face to face with patients. And if we can get the model of a fully inclusive support group right (that is, a support group where pre-ops and post-ops of all surgery ages feel topics are relevant and helpful) then I think information flow will improve on several levels.

Stay tuned for the final part in this series where I will make some recommendations, based on what I’ve heard from longer-term post-ops and I’ll highlight several support groups I’ve found that sport impressive long-term attendance.

About the Author
Nikki Massie is a professional writer based in Baltimore, Md. She underwent Roux-en-Y gastric bypass surgery in 2008. She also lives in Baltimore with her two daughters, dog and cat. To learn more about Nikki, please visit her blog www.bariatricfoodie.com.



13 Comments for this Post
  • Crystal Vania
    October 29, 2013 at 10:14 am

    I am an 8 year post op who regained most of my weight. I am back on the journey to lose again. I have found that my surgeon’s office is reluctant to help me. Maybe they don’t know how to help me? I am not sure. I feel it would be helpful to have a separate support group for people at least two years post op.


    • Nikki Massie
      October 29, 2013 at 1:04 pm

      I think part of it is that, as a realm of medicine, bariatrics is pretty young I believe and the science is constantly changing so that people who had surgery 20 years ago aren’t quite the same as 10 years ago as five years ago as today. So I think that definitely plays a part.

      I’m not so sure I agree that there needs to be two separate surgical support groups. I think some do an additional group for long-termers but I think having long-termers and newer post-ops in the same room has a lot of benefits, not the least of which being an accurate and realistic view of life after bariatric surgery! I think many misperceptions about this life and lifestyle exist simply because people don’t talk openly about things like regain and eating capacity and such. So I think being together in support group could go a long way toward facilitating that.

      But at the same time to get long-termers in the room, the group has to be relevant to those post-ops. That’s why I said in my first post that I think a big part of making it better is asking for what we need! If we need to talk more openly about regain without fear of judgment we have to ask for that. It’s hard and uncomfortable but I think all post-ops deserve to have access to this tool (support group) to help them on their journeys!


  • Danielle G.
    October 29, 2013 at 11:53 am

    My support group has started offering a Veteran “Class” for people 2 years+ to assist with maintenance or address regain that last about 6 weeks. We also have a wide-range of attendance of support groups and many long-term post-ops still attend.


    • Nikki Massie
      October 29, 2013 at 1:05 pm

      Wow, I’m so glad to hear that!

      Would you be interested in talking to me about your group? I’d love to include some of your insight into my last blog post, which is still in production! I think the support groups who desire a larger long-term post-op attendance rate have much to learn from those that already do.

      Let me know if you’re interested in being interviewed!


  • Midge
    October 29, 2013 at 12:54 pm

    That’s what I have found wrong with having a hospital and surgeon’s based support group……we seem to cater to newbies and rarely see a long term post op! Other than myself…when the long termers do come, they are so ashamed..it is heart breaking. They are a unique and under-served segment of the bariatric movement. I wish I could do more, but I am limited to the the patients who come to support through the practice at the hospital. Thank you Nikki – you bring these difficult facts to a very bright light.


  • Nikki Massie
    October 29, 2013 at 1:09 pm

    You bring up such a good point. I was worried that in doing this series I’d be perceived as villainizing surgical support groups and/or their leaders. I have the utmost respect! For the staff who lead groups, you often do so on top of very long days and you do it because you care about your patients successes and well-being.

    And I do understand that you have to serve the group you have before you and often that is a group that is predominantly new(ish) (first 18 mos. post-op). That’s why my next post is going to be rather long! I have some definite ideas, from what people have told me, on how to start to reverse that trend. I hope some of them are helpful.

    It comforts me that there are caring people like you who want to see support group work well for all post-ops. Thank you for all that you do!


  • Carley
    October 31, 2013 at 12:38 pm

    I enjoyed your articles on this topic. As a director of support groups for a bariatric clinic it helped me understand why patients may be reluctant to come back to support group. At our practice we offer three different support groups; one of them being maintenance or >2years post-op. Our goal is to support patients through their entire journey; before, during and after surgery, with no end to when patients can receive support. I can tell you our maintenance group is just as well attended as the other two groups.


    • Nikki Massie
      October 31, 2013 at 1:31 pm

      Hi Carly,

      I’m so glad to hear you say that!

      I think it’s so important to have that focus on maintenance. It confuses so many people. I get a lot of questions about it through my blog and I can’t really answer them well because I’m learning myself. Many times I will ask my nutritionist or surgeon if questions come up frequently enough.

      From my experience, many people are simply afraid. They are afraid of food. Afraid of failure. Afraid of going back to the life they once had. And fear makes you act in ways that you don’t always expect. It would seem that we’d gravitate toward group if we feel we need help, but instead so many stay away because they either fear judgment or fear confirmation of what they already know: that they aren’t on the right path.

      THANK YOU for being so supportive to your patients. I think that because you do that, you have this amazing opportunity to connect with them and learn from them what it takes to make total lifestyle changes.


  • Jill Williams
    October 31, 2013 at 2:47 pm

    My post-op group was very helpful to me the first year and then I had many of the same feelings as noted above (not focused on those who were longer-term post-op, did not address fitness and plastic surgery options that we now a part of my life, etc).

    I run a support group specifically for newly post op (1-18 months) when the most rapid weight loss occurs (as well as some plastic surgery options), and I am putting together one for 3+ year post op to assist with weight regain and other issues that come up after the initial weight is lost.

    When I had my DS 15+ years ago, I truly wanted something that addressed the emotional, physical and relationship issues that happen with rapid weight loss, so that I is what I set out to do. It is a lifetime commitment to our health and always remembering that the surgery (of any kind) is a TOOL, not a cure!

    I am grateful for the gift of the DS every day, and at 130 lbs live a wonderful life (much more so then at 330)! Thank you so much for this blog series – it is so important!


    • Nikki Massie
      October 31, 2013 at 3:58 pm

      Hi Jill,

      Thank YOU for taking charge. I know you’ve probably heard that saying, “be the change you want to see.” I think that’s just what you did. And that’s not easy!

      I’d love to know more about your current group and the progress of the group you’re forming for longer-term post-ops.

      You can click on my name to contact me if you are so kind as to stay in touch! And I’d love for you to check out Bariatric Foodie as I talk a lot about realistic approaches to life after weight loss surgery there as well as on my Facebook Page and on Twitter.

      Thanks for your input.


  • Michele
    November 1, 2013 at 9:52 pm

    I am going on 6 years post op in January and have kept the weight off. I used to attend meetings for some time but then I had friends who asked me about having the surgery. They had so many questions and some I even went to info meetings with for support. I can say the three friends I had helped are keeping their weight off! Surgery is just a tool but I always stress you have to be committed to changing your lifestyle for this to work! I am happy to say I was 250 pounds before and am currently about 136 pounds and in a size 6 (I do fluctuate up to 145 pounds). I never thought in my life I would wear single digit clothing and that keeps me going! I moved from the state where I had my surgery but I am not ashamed to tell people I had gastric bypass and find I do a lot of educating more than anything. Despite some severe issues afterwords, I still would do it all over again! Thanks for allowing me to share my story!
    Michele


  • Kathy
    November 6, 2013 at 11:53 am

    At our Bariatric Center we offer support groups 4 times a month. One of these support groups is a Veteran’s Support Group for patient’s post-op 18 months and out. We have been offering this for a few years now and started it for the exact reasons you gave in this article. The needs, wants, and concerns are very different and we found that the support groups were taking up more time with the newly post-ops and not the long term patients.
    Great article!


    • Nikki Massie
      November 6, 2013 at 1:28 pm

      Kathy, that’s awesome! What I love about what you said is that you noticed a trend and made a change to help serve your patients better. That’s so great.

      Thanks for sharing!



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