Recent Posts

(deactivated member)
on 5/4/10 3:40 am - Makawao, HI
Topic: RE: PLEASE LISTEN TO ME

Well this is crazy.  Why didn't I see this prior to surgery. Now what? 
Elizabeth N.
on 5/2/10 7:17 am - Burlington County, NJ
Topic: RE: PLEASE LISTEN TO ME
****hugs**** Hey Amy, would you like to talk by phone? If so, click on "contact" and send me a PM.

I'm going to be in MT for most of the summer, but on the other side of the state. I dunno if we could work out a way to meet in person.

Did you connect with Beth and Vitalady?

I hope you are getting the message that you are not alone with what you're facing. You are not crazy. There are people out here who are also having problems and who are working on this stuff, looking for answers and for people who can help.
AimsMcB
on 4/28/10 2:35 pm - Billings, MT
Topic: PLEASE LISTEN TO ME
 Do NOT get this surgery or any weight loss surgery.

Read up on "NIPHS" or post bariatric surgery hypoglycemia.

I am 5 years post op.

I have seizures.

My blood sugars drop to lows of 26 for NO reason.

I eat right.

I don't drink alcohol.

I consume enough water.

I have a diploma in fitness and nutrition!

My short term memory is very very bad.

I had a GREAT career and now I am soc. sec. disability.

The ER doc. I  saw at the hosp. in BILLINGS (the only hosp. here that does this surgery) for one of my complications (two nice ugly ulcers right where my pouch meets my intestine) had NO CLUE what gastric bypass was and I had to explain it to him!!!  Then go back the next day still vomiting blood.  (About 6 months ago)  got to see my surgeon then........

I carry water in my purse, in my car, in the trunk of my car and of course I am at home with water all the time.

I cannot touch sugar, unless I HAVE to swi**** around my mouth because there are no glucose tabs around to save my life and keep me from passing out or having a seizure.

I cannot touch almost anything they say you can after this surgery.  I live on rabbit food.  

I shake, I tremor, I am afraid to drive, (I shouldn't drive!)

I have had three big seizures and smaller ones.  One was a reallllly big long one.

I've ridden in an ambulance more times than I care to count - and from my ex-workplace.

It has caused me so many problems you will never know.

PLEASE DO NOT MUTILATE YOUR BODY IN ANYWAY PLEASE 






M M
on 4/27/10 6:02 am
Topic: RE: 5 yrs out/severe health issues due to this mutilating surgery
 I tried to "friend" you months and months ago.... I remembered an old post of yours.

I have hypoglycemia and neurological problems.

I feel your pain.

Please keep in touch?
Elizabeth N.
on 4/27/10 1:26 am - Burlington County, NJ
Topic: RE: 5 yrs out/severe health issues due to this mutilating surgery
Well, I'm glad you got that reminder email! Here's hoping this can be the start of finding some new information and connections that might help you get a lot healthier and more comfortable than you are now.

Yeah, I knew you meant IU's on the D lol, lots of people do that typo, and a surprising number of people don't know the difference.

You do not sound healthy enough for a revision fersure. You'd have to get the bleeding stuff under control and get your blood all built up, at a bare minimum, before you could dare consider such a thing. Your body needs good nutrient supply to be able to function, much less withstand such an enormous surgery. Plus there are very few surgeons who are competent to do such a procedure. If that ever looms in your life for real, do your research and go to one of the truly world class docs, no matter how far you have to travel to do it. Dr. John Rabkin in San Francisco is one name that comes to mind as a true giant in the field.

Unfortunately, it sounds like your stomach might be damaged enough that a revision wouldn't help much, from what you're describing here. BUT if it could heal enough to change that picture, it's something you might keep on a way far back burner in your mind. MAYBE.

Please don't recommend the lap band either. If you start looking at lap band complications, you'll discover that they can be just as heinous and deadly as anything the RNY can do. It's NOT just a snip to remove thing, not at ALL. The lap band needs to get off the market yesterday. It's horrible, too.

There are two "newer" WLS procedures--that aren't really all THAT new--that are vastly superior to both the RNY and the lap band (or non adjustable band too). For restriction only, there's the vertical sleeve gastrectomy or VSG, and for restriction plus malabsorption, there's the duodenal switch. I don't know if anybody in MT does the VSG, but I know nobody there does the DS. There's a VSG forum here on OH where people could give you some links to information about that procedure. It seems draconian because it involves removing almost all of your stomach completely. But you know, surgeons have been doing that for other health issues (cancer, ulcers, etc.) since, oh, the 1950's or so. So there is actually a LOT of evidence to show that people can live just fine with only a little bit of stomach, and even with none at all if necessary.

In the VSG (which btw is the first part of the DS--I'm living with a small fraction of my former stomach too and love it), the surgeon basically takes out the whole outer part of the stomach, leaving a long thin tube. The stomach inlet (esophagus) and outlet (pylorus) remain intact and "in the loop" in the normal way, so the anatomy remains normal. You get permanent restriction (although the restriction does diminish somewhat over time) and fully normal function. No band, no adjustments, no stricture risk, etc.

The research on the VSG as WLS is still very recent, so there's no good longitudinal data yet about how effective it is for keeping weight off. It looks like the statistics are going to be similar to the bands, with somewhere around 50% excess weight loss maintained at five years out. That's nothing to sniff at, although for very obese people, it's not sufficient to give truly long lasting major health benefits. I had 240 pounds to lose and would NOT have been happy if I'd had to keep living at 100-plus pounds overweight. I was way too sick with comorbidities for that to have been sufficient.

The malabsorption component of the DS is quite different from the RNY. We malabsorb different nutrients than RNYers do, and in differing amounts. The intestinal restructuring appears to have major effects on metabolism that have to do with a lot more than just causing malabsorption. That's why the DS is so profoundly effective at curing type II diabetes, significantly more so than the RNY. It appears to be about which parts of the intestine are bypassed for food.

Your blood sugar issues are not uncommon at all in longer term postop RNYers. It's a kind of truly godawful reactive hypoglycemia and not a type of diabetes. From what I've read from folks who suffer with this, I think I'd take back my diabetes (and I was on insulin for over fifteen years, had complications starting, etc., so this is a strong statement for me) than to try to live with what you've got. Melting Mama has horrific issues with this, along with neurological stuff that basically has given her a seizure disorder that nobody can figure out how to treat effectively. She lives near Boston, has four little kids, and had to surrender her driver's license. She is SO trapped at home and so restricted. It's miserable. She's doing research and networking like crazy about this stuff and would be very happy to hear from you.

You mentioned eyesight problems. Does anybody know yet what's causing that? Are you deficient in B vitamins? Vitamin A?

Would you care to share about your supplement regimen? Lab results would be helpful, too. I'm already quite certain that a change in your vitamin D stuff would be useful. You mention 20,000 IU's of D daily, correct? What kind of D supplement are you using for that? I'm aware of a 10,000 IU D-3 tablet that is a freakin' nasty horse pill, and so I wondered if maybe you were using those. They SUCK. I dunno how you could get them down with a RNY pouch and ulcers and crap. Yucko. Vitalady's 50,000 IU capsules are about the size of my little fingernail, and they are capsules, not tablets, so they go down easy. They are super absorbable too.

There is such a thing as a vitamin D infusion, too. A lady on the DS board is getting those and hoping to correct a really bad D deficiency-bone loss cycle.

How about calcium? Those suckers are always horse pills too. Plus lots of WLS people take the wrong kind of calcium and don't absorb it--AND get kidney stones from it. We do best with calcium citrate, which doesn't need any stomach acid to speak of for absorption. There are liquids and powders available for that.

Okay, I'm writing another book, so I'll shut up. There is a failed WLS forum here where you might cross paths with some folks with issues like yours, and a complications forum: http://www.obesityhelp.com/forums/failed_wls_second_time_aro und/
http://www.obesityhelp.com/forums/complications/

I think I linked Vitalady's and Melting Mama's sites in my other post, right? Michelle and Beth are fine folks who are very devoted to helping people in trouble. They have lots of information to share (from the medical literature) to pass on to docs who are open to learning more about this stuff.

If you'd like to post some details about your lab results (please give normal values as well as your results, since "normal" can vary from one lab to another) and what you're doing for supplements, I might be able to give you some input here.

Don't give up hope. There is more that can be done. I'm sure of it.

BTW there is one "good" thing about being on disability: Medicare is portable insurance. You can go anywhere in the country to get treatment and Medicare will cover it, as long as the docs and treating institutions take Medicare. You are not stuck with staying in any particular location. Travel is difficult and expensive, but it's a lot more doable than having to pay cash for cutting edge medical care.
AimsMcB
on 4/26/10 5:04 pm - Billings, MT
Topic: RE: 5 yrs out/severe health issues due to this mutilating surgery
 Thank you for replying to me.

I see a primary care doc for the vits. and vit blood draws (I don't trust the weight loss clinic here anymore) - on the vit d I meant iu not mgs LOL... so many meds so many mgs....

I was not aware of more reports coming out of complications of longer term RNY post-ops.  Will def. research.  The only reason I came to post is because they reminded me it was my bypass birthday.

Feel free to post back to me any and every link you have if you have any because I want to know.  Hell, I am even losing my memory because of the malabsorbtion of vits.  

I'm on soc. sec. disability now too - thank you gastric bypass.

I pushed this surgery for 2 to 3 years.  I was trying to convince my teen daughter to get it while I had to good insurance that covered it.  I am SO THANKFUL she didn't!  I used to tell ppl that I would have the surgery 50 times over again because I was so hap hap happy.  No more of that!

I highly recommend lap band to anyone and everyone because with the simple snip of a pair of scissors or whatever those surgeons use it's off for good.  I won't get reversed.  I know for a fact in my heart of hearts I'd die on the table.  

You want to hear something amazing?  When I first got my ulcers - or they first started bleeding and affecting me I was vomiting non-stop for a whole day and night.  It wasn't the normal eat it barf it comes up the same way barf.  It was weird.  So I went to the ER of the hosp in my city that performs the surgery.  The doctor had NEVER HEARD OF IT!  I had to explain what the procedure was!  He sent me home and thought nothing of it.  Well, I was back the next day - vomiting constantly still.  Blood.  FINALLY they get the surgeon who did my surgery to do a (oh god here goes my memory) - the opposite of a colonoscopy -- the down my throat thing.  I saw the ulcers on the tv monitor.  Horrible.  They thought I had a "hairball" blocking my opening - no, two ugly ulcers.  I used to eat seeds and nuts and other types of meat - heck I can feel everything I eat scrape against these ulcers because they are right there by the opening to my intestines.  I'm screwed.

But anyway - I need to try to sleep.  Had to wait for things (meds and vits)  to go down before I lay down to sleep.

Thank you again for responding.

Sincerely,

Amy



Elizabeth N.
on 4/26/10 3:14 pm - Burlington County, NJ
Topic: RE: 5 yrs out/severe health issues due to this mutilating surgery
Dear God in heaven. I am so sorry, again :-(.

Now that I've read this post, I want to really encourage you to connect with Beth, if you don't know her already. You two have a lot in common.

What kinds of specialists are involved in your care?

There is more stuff coming out now about these types of complications in longer term RNY postops, as I'm sure you're aware. You are not alone in this. More and more reports are getting into the medical journals.

One question about your supplements: What kind of vitamin D are you using? The prescription oil based stuff? Or dry D-3 as cholecalciferol? We don't convert the D-2 (the prescription kind) into D-3 any more because of the part of our intestine that was bypassed. We need dry D-3. I have to take 150,000 IU of the D-3 daily (three small capsules) to keep my D hovering in the low 40's, which is okay but not great.

There are a number of very supplement-savvy postop RNYers on the RNY and main boards who might be able to give you some input about possible changes to your supplement regimen that might help. In particular I'd like to mention Vitalady. You can contact her through her website, www.vitalady.com . She is not a medical professional, but she and her husband have both lived with very distal RNYs for the better part of 20 years, with accompanying problems, and have learned about life-saving and life-sustaining supplementation from the ground up.

I apologize if these are people you already know. My heart goes out to you and I would like to help you find ways to improve your situation if I can.
Elizabeth N.
on 4/26/10 3:01 pm - Burlington County, NJ
Topic: RE: dont get this surgery
Hi there Aims. I just dropped by to check on a post I put up here a few days ago and saw your post. (I grew up on the other side of the state, come from a ranching family.)

I am so sorry you've had such a dismal outcome with your RNY. Do you have support or connections with any other people who are in your same boat? There are a fair number of folks with huge problems who post on some of the other boards here on OH, if you would care to get involved with some folks.  One I'd like to mention is Beth aka Melting Mama. She has some brutal health issues going on, ummmm, I think 4 years out from RNY. You could connect with her via her blog. URL is either www.meltingmama.net or www.melting-mama.net . She posts a lot on the main board here on OH.
AimsMcB
on 4/25/10 6:12 pm - Billings, MT
Topic: dont get this surgery
 it has wrecked my life/health.

get lap band
AimsMcB
on 4/25/10 6:11 pm - Billings, MT
Topic: 5 yrs out/severe health issues due to this mutilating surgery
 DO NOT GET GASTRIC BYPASS SURGERY.

GET LAP BAND IT IS REVERSIBLE.

GASTRIC BYPASS HAS WRECKED MY HEALTH AND MY LIFE AND I AM NAUSEATED ALL THE TIME, HAVE ULCERS IN MY POUCH, CONSTANT DIARRHEA, I CRAP BLOOD, HAVE SEVERE HYPOGLYCEMIA LEADING TO DIABETES TYPE 1, HAVE HAD SEIZURES AND I KNOW WHAT AND HOW TO EAT!!!!!  I DON'T DRINK, I CAN'T EAT ANYTHING WITH MORE THAN 10 CARBS EVER, MY VIT. D LEVELS ARE SO LOW (EVEN WITH VITS) THAT I HAVE TO TAKE 20,000MGS A DAY - WHICH I CAN'T STOMACH.  

GASTRIC BYPASS IS NOT WORTH IT GET LAP BAND.

cures diabetes? my ass. it causes it.  my staples are cheese, lettuce, carrots, grilled (and rinsed) chicken, glucose tabs, sugar (when needed and blood sugar drops to 30's or 20's for NO REASON) vitamins vitamins vitamins and pepcid constantly.  on the toilet ALL the time.
I'm also losing my eyesight.

Nice.

I made the biggest mistake of my life 5 years ago.  My birthday of death coming closer than it would if I were fat!




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