I failed, not the surgery.

I just want to be clear about that.  But my story is a bit unusual.  Anyone out there willing to read my story and maybe offer some help?  Here goes:
(I'm sorry if you've read this thread on another forum...wasn't sure where it would fit and I need some help and advice if anyone's willing to give it a try!  Thanks for your patience!)

I had a great surgeon but l had my first bowel obstruction while I was still in the hospital recovering from my RNY surgery. (This was May 2007)
Seven months later, I was diagnosed with breast cancer, then thyroid cancer.  I had to have a double mastectomy and chemotherapy.  As I was going through this, I was also diagnosed with Sjogren's syndrome.  At this point, losing weight was not exactly my top priority.  I ate what I could when I could and didn't feel bad about it at all.  I was looking death in the face and losing weight just didn't matter all of a sudden.  While all of this is going on, I was rushed into emergency surgery to fix a hole in my stomach.  Next, the bowel obstructions began.  I think I had a total of about six.  I just don't have the exact number in front of me.  I know I was in the ER about every 2 months throwing up bowel contents because I was obstructed.  After each surgery to correct the obstruction, I would have to have surgery to fix an incisional hernia that would occur afterward.  It was like some horrible never-ending cycle of surgeries.  I finally had a huge piece of mesh put into my abdomen that seems to have stopped both the obstructions and the hernias. Fast forward to today.  I haven't had to have surgery for about a year and a half now.  I am also in full remission with no signs of cancer, thank God!

Here's where I failed:  

Not only did I fall back into my habits of extremely poor eating but because of my Sjogren's syndrome, I am unable to eat without drinking at the same time.  As I understand it, Sjogren's is a type of autoimmune disorder that attacks the mucous membranes of the body.  My mouth gets terribly dry.  Eating without drinking isn't do-able.  So here I am, having gone through a hellish couple of years but glad to be a survivor.  Unfortunately, though I actually took all of my weight off and then some (because I was so sick) I have now put all but about 50 pounds back on.  Because of my surgery, I now have no valves just a hole at the bottom of my pouch which has stretched to probably at least something closely resembling a regular stomach and because I have to drink while I eat, the food just gets "washed down the drain" and I feel as though I haven't eaten a thing within 15 minutes of having eaten a meal.

I'm under the impression that surgery cannot be reversed unless it looks like you'd die without it being done.  (Is this true?)  The insurance that I have now will not cover any type of bariatric procedure.  I am hypoglycemic, considerably malnourished, anemic, have to receive B-12 injections....but not about to keel over.  I'm afraid if I'm like this now, I'll be in a world of hurt in 20 years.  So, if I'm only experiencing the "cons" of the surgery but none of the "pros", I want to have it reversed.  Can this be done?  Can anybody help me?  I'm not trying to scare anyone off or even badmouth the surgery.  I just happen to be one of the few people who had a host of traumatic health complications some related to the surgery and some not.  My weight gain is completely my fault, though I feel helpless to be able to effectively use this tool now because of my inability to eat without drinking...not to mention the fact that my pouch has grown considerably.  (this has been confirmed with my many abdominal procedures)

Anyone?

All the best to you all...I hope your experiences are all what you hope them to be.

Jennifer

I'm sorry you've had so many problems.

RNY can be reversed.  It's a complicated procedure and not all surgeons are qualified for perform it.  Because it's complicated and risky, those that do perform it usually won't do so unless it's medically necessary.  Have you consulted with a bariatric surgeon?  What did he/she say?

Have you talked to a surgeon about a possible revision to DS?  That might be a better option than just a reversal.

No RNY patients have a pyloric valve, we all just have a small hole at the bottom of our pouches.  You say yours has stretched "probably" - do you mean your stoma has stretched or pouch has stretched?  Has that been confirmed by a an upper GI or endoscopy?

You say you are malnourished and anemic.  Are you taking vitamins?  What are you taking?

you state with your medical condition your mouth gets extremely dry and that is why you drink with your food. Is it just because of your mouth being dry? If so, could you not swish your mouth with water and spit kind of like mouthwash instead of swallowing it? that woudl prevent it from washing the food from your pouch and would put fluid into your mouth. It might not be the most appetizing thing but it would keep you fuller longer and may make some of your issues go away. I know someone at my support group mentioned they love spicey food and use milk like mouthwash to curb the hot feeling in their mouth but they don't swallow so they don't wash out the food.

I"m glad you've come away from cancer a survivor! I hope you can find a way to make life liveable for you.

Biotene is a great sort of Liquid-moisterurizer. I'd suggest having two little dixie ccups next to you at the dinner table. It would be not very lady-like (and you can tell from my screen name that I am a stickler for lady-like behavior).... however you could take mini-sips of the biotene, swish swish swish and then spit in the other cup. (indelicate, but when needs must!!!)

Jennifer, first *HUGS*

You don't sound like a failure, you sound like a SURVIVOR. You've been through hell, and you're still here and still kicking.

NONE of us know the future. If we all had a  crystal ball, when we were looking into surgery we woudl have used it to see "if I got surgery A, what would be my fate" and the same with all the others. In your case, I think that your crystal ball would have demanded waiting until you conquered the cancer to focus on the weight loss.

Interesting enough, I was looking up that Sjogrens just yesterday. I suffer from a similar issue due to my meds making all of my mucous membranes dry. Very dry mouth, dry eyes, dry everything. I don't drink with my meals, and perhaps you can work towards getting away from that.

Everyone's pouch matures to a larger size than immediately postop

You might make a choice to work on finishing your meals off with a very moist food item (slices of cucumber).... perhaps the first week, you might set a timer and say, I'm going to go 10 minutes without drinking, and then I'll drink 3 oz of water over the next 20 minutes. Pu**** back week after week, with absolute liquid rewards at the end of your imposed dry-mouth period. Or if you can't do anything else, then dice up a cucumber, adn eat one little dice/slice for every "thirsty" signal until 30 minutes are up.

Focus on getting a handle on maximizing the tool you have. If your stoma isn't stretched and you just have a larger pouch than you used to have, that might be all to the good. You're going to need to approach this carefully and thoughtfully, and even if you only get ten or 20 pounds off your frame by doing your best to embrace the rules, that's still a load literally off your back.

Cancer is my biggest fear. I know that anyone with RNY is at a severe disadvantage when it comes to dealing with that awful disease, andd the chemotherapy makes the choices of food very hard. Ultimately you have to find the thing that is going to make your recovery best. I remember when my mum was sick with chemo, I researched the highest calorie protein shake, and came up with dozens of ideas that would tempt her palate. It's about health, and eating during chemo is one of the biggest issues ever.

Share what you are eating with us, join the daily eats threads, and see if you can figure out a few ways to cut back. You don't have to go whole-hog from day one, you need to pick one thing you can change (and drinking with and after meals is what I'd suggest) and get GOOD at that, then pick something else that you can do to improve your weight and give your overloaded system a lighter load by having a lighter body.

Good luck. My heart goes out to you.

I understand so much of what you are saying.  I felt exactly the same way after my first surgery.  I had all the negatives and none of the positives, except in your case I wouldn't say that you failed.  You had a series of extremely bad things, totally out of your control, that happened to you.  You did the best you could with what you had.  I don't know that you could have done anything different.
I don't know what can be done for you but in a perfect world it sound like the best thing for you would be a sleeve.  With your health issues maybe malabsorption may not be the best thing for you.  If you had your stomach back the way it was, with the pyloric valve in place, but much smaller, you would have restriction to keep you satisfied but you would be able to absorb all the medication you may need now and in the future.
I truly hope all your health problems are in the past and things are good for you going forward.