Had Stomaphyx consult today - real info to share

Greetings everyone.  I want to share my experience from visiting my surgeon and discussing stomaphyx today.  My surgeon is Dr Albert Wetter in Burlingame, CA.  He did my original surgery in March 2000 - lap gastric bypass proximal RNY.  I weighed around 325 and was down to 225 in about 8 months.  Stayed there for a couple years, had two children and lost site of the pouch rules.  I never had complications, so I experimented with food too much and liked discovering what I could get away with eating - like chocolate, sourdough bread, etc.  Anyway, over the past 4 years I've gained back half of what I lost.  I feel like I can eat anything and it just goes right through.  I feared I had stretched my pouch so I tried diets but nothing worked.  I finally researched and learned about stretched stomas.  That sent me back to my surgeon. I saw Dr Wetter on July 16th and he sent me for an upper GI.  I did the barium test and the Dr. in radiology showed me my pouch was still post-op size (about 3-4 oz I think), but the fluid was running straight down to my small intestine.  He couldn't estimate the diameter of the stoma, but he said it was roughly the same as the esophagus.  So, here's what I learned today from Dr. Wetter: - He and a colleague had training on stomaphyx last week - Only a couple other Drs have been trained on this exact procedure - It's for stretched pouches, but can also work for the stoma - Using a tool at the end of a scope, they cinch inside folds of the pouch and "pin" them.  The tissue stays together with the pins and some scarring.  I imagine it like the top of a draw string bag.  If you were to close it then pin the folds at the top, it makes a ring of little folds. - Although my pouch does not need to be smaller, it will make mine smaller because to do this at the stoma requires using the pouch tissue - In the case of patients who have stretched their pouches significantly, several circles can be made in the walls of the pouch - each one reducing the size of the pouch - for my procedure, he estimates it will only take about 20 minutes - general anasthesia is necessary because the scope is so large and the patient needs to be still and completely relaxed - Dr. Wetter and his colleague will only do these at the hospital with an overnight stay initially - They have a list of many patients who are waiting to have it done and they expect to have the equipment next week - They have not worked out the billing yet, but they expect it to be $10-11k all-inclusive - It is unlikely that insurance will pay for it because it is not a standard "revision" that is medically necessary - We are going to try with my case though because there is a medically compelling story (I was had the original surgery becasue it was necessary based on BMI and comorbidities like apnea, gerd, back/knee problems.  I was successful and followed the plan - losing a significant amount of weight.  My stoma is stretched but the pouch isn't.  The apnea, etc have returned so this would solve the problems) - If I am denied, I'll appeal, but I have one other option I forgot to discuss with him about combining it with a hysterectomy.  Then the hospital stay would be covered and I'd only need to pay his fee...  As a last result, there's always a credit card... So, Dr. Wetter said I may be his first patient for this.  I'm open to it.  I know there will be a long line later. I have more I can share later about what I plan to do differently this time and what I've learned about insulin levels and such.  For now, I just wanted to get some facts out there.  I think the insurance issue will be disappointing for many.  I was one who had no delay in my approval for initial surgery, but that was Cigna and now I have Aetna PPO.  This sounds more like "optional" in their eyes, so it will take some work to change their thinking.  I'll keep you posted on my experience. ~Shelley

Shelly - Thanks for the helpful information about your visit.  I hope you can get an insurance approval.   Please write when you find out how that goes, & when you will be scheduled for the procedure.  Any sharing you have about how you will eat afterwards will be great too.  The post op diet is liquids, juices, protein drinks, soups & very soft foods.  It is helpful that most are saying they are not as hungry after the procedure is done.   I am scheduled for the 22nd, so we'll see.  Amy

It's definitely liquid diet for a couple weeks to be sure everything heals okay.  It also sounds a bit fragile and my surgeon says we need to "baby it" the rest of our lives if we want to keep the weight off.  He had a lot of good information about new studies on insulin levels in overweight people and how we just can't tolerate any carbs.  He said I'll need to stick to a strict high protein, 3 meal a day, no snacking diet.  I was able to do it before when I felt full.  I hope I can stick with it longer this time.

It almost sounds like the pouch regenerates or somehow wants to stretch back to it's original capacity.  I guess baby it means to not overstretch it.  I wonder what happens to those clips that hold the gathers in the pouch?  Do those plastic clips stay in the pouch?  Do they dissolve?  I think that's true about the carbs.  My body seems to crave them badly.  I don't crave as badly when I use soluble fiber supplements.  The insoluble supplements (psyllium) don't work as well.   For me, eating just 3 meals is hard because I hate being hungry!  I guess for my 2 wks post op, I will try to stick with protein drinks, soups & some apple juice.   My doctor suggested watery oatmeal, liquidy mash potatoes.  He says nothing hard to pull those clips. I do wonder those if there are foods that are not helpful to healing, like acid foods, tomato soup, citrus juice. Amy

Thank you for sharing.  Best of luck to you.

Thank you Shelley for the information  I will definately be going ahead and having this done ,at the moment I am selling my home and plan to have a nice holiday after the stress of moving and everything else thats been happening lately. I will be going to Europe to have this done as its not available here in England ,I wonder why its so expensive in the states ?it costs only $4500 in Europe .... hey maybe it would be cheaper if you flew over here and had it done if your insurance doesnt cover you ?Just a thought !!!  Amy please let me know what you doc says when you go and visit ,and could you ask also how long the StomaphyX would last for ?  Love Susie x

Hi Susie, I definitely recommend you wait until the stress is over to do it.  I realized over the past couple years I really need to work on my stress and emotional eating.  I'd like to blame the weight gain on the big stoma, but it's also a result of poor choices. I did ask about how long the stomaphyx is supposed to last.  It's supposed to be permanent but it's fragile.  It can be stretched and the pins can be knocked out from eating too much or eating the wrong foods.  I'm a bit nervous about that, but I plan to stick to the rules this time around. As for cost in the US - I think we can safely blame it on our corrupt health system.  Everything is ridiculously overpriced because of things like malpractice insurance (sue-happy society) , overly-bureaucratic insurance system, and lack of insurance for the poor (and resulting abuse of the emergency room service as a result).  I wouldn't mind a trip out to Europe, but it's too tricky now with kids and work.  I'll fight for insurance to cover it and get creative if I have too.  I'm fortunate enough to be able to come up with the money if needed, but I'd rather spend that on cosmetic surgery later.  :-)

Shelly, will you have to have any post op care?  Thanks.  Amy

Absolutely.  I want to take what I've learned into the process this time.  I want nutritional counseling (although I know the stuff - I just need to LEARN how to follow it) and emotional counseling.  I'm a stress eater.  I am the most blatant chocoholic you'll ever meet.  I'm considering hypnotherapy to work on that one.  My surgeon wants to see this work too.  He knows I cheated my first operation.  Something went wrong with the stoma, but like people who never had surgery, it is still possible to lose wight if I were eating 1000 calories a day.  I snack and that causes complications with blood sugar levels.  I'm not diabetic, but I'm sensitive to sugar.  There's a hormone that's released when insulin levels go way down that helps burn fat.  I don't let me body get to that point much because I snack.   As a side note, my pouch is only 3-4 oz.  Yet, I ate an entire cinnabon the other day in one sitting with no problem.  It goes straight to my intestines.  But, I know one of those has something like 750 calories, 24 grams of fat and over 100 grams of carbs.  And it's definitely not the only thing I ate that day.  So, why?  Lack of will power.  That's what I need work on.  I've seen people here say that weight loss is a choice we make ever day.  For some of us, it's a tougher choice.  Everyone has struggles in life, this is mine.  Some struggle with money, abuse, drugs, difficulty learning, but food is my struggle.  Everything else has been easy. I recommend if you are putting a lot of your own money into it, invest a little on the non-surgical aspects.  I may be lucky and have some insurance coverage (don't know yet), but I'm also blessed to have not struggled in other ways so education and  professional success were easy for me and I can afford to do whatever is necessary.  I truly thank God for that.  I'd love to hear from anyone who's learned to truly change their habits and way of thinking.