Support Group Drama: Advice Please

Please read the following situations that occurred at two separate locations which will remain nameless and tell me how you would handle it.

 

Situation #1:

-I went to a support group at a facility that performs Revisions and DS and introduced myself as a Band to DS patient.

-I stated that I regained due to band complications (the surgery failed the patient).

-The moderator then proceeds to tell the group that if they don’t continue to diet & exercise then they will be unsuccessful (the patient failed the surgery).

-This comment made me feel as if I was being seen as a patient in denial. I don’t have anything against patients who have a hard time changing their behavior after surgery but that wasn’t the case with me. I wasn’t able to keep down solid protein which led to vomiting on almost daily basis. I wasn’t able to get in a lot of exercise because of the consistent port site pain.

 

Situation #2:

-I moved on to another support group at a facility that performs Revisions and DS and introduced myself as a Band to DS patient.

-I stated that the reason I felt that DS is the best choice for me is because I wanted a surgery that would give me the best chance at losing all of my excess weight & the least chance of weight regain.

-A patient stated that they were interested in DS but decided against it because they were told that it causes a lot of side effects.

-I stated that the surgeon can decrease the amount of complications by making a longer common channel.

-The moderator completely disregarded everything I said and proceeded to inform the group that DS has the highest complication rate. She also said DS patients take 15-20 pills a day, have bad body odor, constant diarrhea and end up blind!!!

-This comment left me shocked & speechless. I would expect an ignorant comment like that at a place that doesn’t offer DS as an option but I was at a facility where DS is performed by an actual Veteran DS Surgeon.

 

What would you do in these two separate situations?

What would you say in your response exactly so that you can state the correct information while remaining calm & respectful???

 

Sorry for the long rant. It’s just that I wish I could get support at the support groups instead of being blamed for my regain & being treated like DS was a bad choice.

 

Mika

I would have totally lost my cool in both cases and told the facilitator they were misinformed and spreading urban legend rather than listening to their patients who have lived it. Now, you can write to the surgeon and program managers of these practices and relate what you heard and how it made you feel. State that their facilitators are misinformed and not providing the support they should be.

--gina

 

My support group is mostly DS people.  And it is a great group, but it is full of strong minded people with firm convictions/opinions which can be tense and over bearing at times.  But we are all pro-DS, and this makes a big difference.

Now when a moderator says things like you mentioned in your second meeting... and they work for a facility that performs DS surgery, I would write a letter to that facility's doctor(s) and explain what you were told by their employee.  It really could be nothing more than a training issue.  At the very least, I would point out that inaccurate information is being provided to potential patients in these meetings, and revision patients will be lost because of this moderator.  Nothing gets their attention more than the revenue hit. 

And then I always put a note that I feel compelled to notify people of this unprofessional behavior on the obesity web sites that most future patients troll looking for guidance and information.  Again, pointing to the hit on the revenue stream.

I don't know why there is such a rift between the RNY and DS people.  I think most RNY people get very jealous when they are given correct information about the DS and how it works (because we tend not to tell them the down side of the DS).  But the amount of crap people spout about the DS, and the horror stories they tell about DS patients gone wrong, is on the verge of urban legend proportions.  I've had RNY surgeons tell me outrageous stuff about how the DS kills people.  And there has never been a RNY patient who abused their surgery and body and died because of it?

I now make it my mission to get accurate information out there any way I can.  The lack of knowledgeable medical professionals and unique nutritional needs is one of the huge negatives about this surgery – IMHO.  I’m changing that one person at a time.

 

 

Situation # 1- Ignore and move on

 

Situation #2 - Since this is a hospital that offers the DS, they should not have support group moderators, paid or volunteer, spewing misinformation. 

I would make sure I had the name of the moderator, date, time, etc.  Next, I would find out who runs that hospital's Bariatric Program.  Write a letter detailing the incident, and request a response, heck, I would even go so far as to request a meeting.

Find another support group. 

These people obviously are not being trained properly.  

 

 

I would complain to the hospital administrators about their choice of support group leaders.  Believe me, they don't always know what's going on in their own house!

Here's one that slayed me the other day on another forum.  A support group actually had this person as a scheduled speaker on how to avoid regain.  Her secret?  Cat poop!  She keeps it with her at all times and sniffs it when she gets hungry.....  I would have paid to be there in person.

Here kitty, kitty, kitty!

WHAT? Cat Poop!!!? That is disgusting not to mention harmful. There are bacteria that are harmful to humans in cat poop. What a fruit loop. 

Personally I think fruit loop is too kind.

 

I think she's full of that stuff she keeps in a zip lock in her purse.

It was her idea on aversion therapy.  Easier than hauling around a car battery with jumper cables?  I laughed when I read that.  I can't believe that someone let an individual discuss this with patients - at a meeting representing a medical facility no less!

nope none of that suprises me because drs say crap like that all the time....I live in a state that the ds is not done, those 2 letter elicit fear in the bariatric community, fear of death, complications (death is a bad complication-LOL), crapping your pants 25 times a day, bed ridden, on and on...and i take much more than 15-20 pills a day.....11 are RX.......hence I don't go to wls support groups in my state or the other 3 surronding states-DS is a baddddd thing....so I had to fly to have my surgery, I knew it would be like that and frankly I don't care, i know i did the best thing for me....and btw I am a band to ds revision, you cant compare the quality of life...that choke chain will be gone, you can eat, but you may not ever have that feeling of fullness....as i don't.....permanent band damage.....among other things the band damaged....good luck to you

#1. Diet and exercise is needed for a crapband and rny because the stupid surgeries dont work. I think this is a way of selling a useless surgery and making $$ to do so, and then having an "out" when it fails.

#2. Support facilitators ate trying to sell their services. My guess is that this facility does the DS, but does not do them well. I think the DS does have the highest complication rate (no doubt it is a complex surgery), we do take lots of pills, but what the heck about the other stuff!

I would never be afraid to put a facilitator on the spot and argue their so called facts. And I would gladly give everyone in the room this website and the proboards website and encourage everyone to do their own research.

But really, this is exactly why I have never attended a support group. Everything you could possibly need is online.