HELP Ugent info needed ~ How many/MOST Years Out!?

mommy3x
on 6/14/07 6:07 pm, edited 6/14/07 6:32 pm - Longview, WA

Okay I thought you may all be able to help me or point me in the right direction for more info?? My husband is trying to be supportive in my decision to have WLS but he keeps asking me how many years out is the most one has lived after Divided RNY (Open)? You see he only knows two people who have had surgery and he is basing his opinion on them one is 18mon out and has many complications (actually just had a repair done). The other is only about 12mon out and has had nothing but problems/complications too. He is worried I will give up my relatively okay health for this WLS and with 3 very young children (1,2 & 5) he worries that I may die in 2-4 years. I tell him if I do nothing I may die in 2-4 years but I do have to say the fear has crossed my mind and would also like to know who the longest grad is....(years out) I say someone on here who is I think 7? I see Rosanne Barr and Carni Willison had it done one in 98 and the other in 99 so 8-9 years

gabbylotta
on 6/14/07 8:41 pm - Allen Park, MI
Hi there!  Just to let you know...... in answer to your question.. I had my open RNY December 2000. I have been out nearly 7 years.  I also have a very good friend that had the same surgery, same day and he is doing great.  My ex-husband's wife (yes you read that right) had the same surgery one year later.   Those are the STATs... now on to the emotional side of me... YOU have to do what is best for you and know one can give you an answer to that.  I think anyone that goes under this type of life changing surgery has fears.  I don't know if you believe in God.. but my suggestion to you is to pray about it.  Yes there are complications that can occur and no it is not an easy road (surgery) but there is a chance for complications in everything in life.  I told my husband (regarding surgery)..I am faced with risk every day, driving my car, walking across the street.. blah blah.   Read the posts on here and judge for yourself.   The hugest piece of advice I could ever give someone is to find a reputable surgeon.  Then when you go for a consultation take your husband with you.  Have a list of questions ready.  You are puting your life in the hands of this surgeon, find one you and your husband trust.   Why does your husband feel you will die in 2-4 years?  Hun, you could die tomorrow in a car accident... or heart attack (not to be mean.. but you never know!)... have faith..do a lot of research and do what is best for you!  take care.. God bless!!!! Tina
Patty_Butler
on 6/14/07 10:13 pm - Dallas, TX
I am almost six years out and doing great.  If it helps you any, my surgeon has been doing some form of WLS for almost 30 years and he has only had two patients die.  I'm not saying that there aren't risks involved - there are risks with any surgery but you have to weigh the risks of obesity related health issues and loss of quality of life against the risks of surgery and make an informed decision. My suggestion is to research diligently and really research the surgeon you plan to use.  There are many wonderful surgeons out there but there are also some who are in it for the money - and the experience of the surgeon and the quality of aftercare is very important. Patty
sallyj
on 6/14/07 10:57 pm - Spokane, WA
One of the problems you will face is that the surgery itself has changed over the year as has the follow-up.  They now know the importance of proper supplements and nutrition whereas before the focus was just on the surgery (which makes sense as the field was driven by surgeons!).  And even the surgery itself has improved along with improvements in medical technology across the board. So even though there are people 20 years out, the surgery they had and their follow-up treatment was not the same as what you would experience now.   But you should be able to Google bariatric surgery long term survival rates and get some researched information.  I would steer away from the individual stories because everyone is different.  There is always a horror story to be told or heard--and that is more spectacular than the everyday, boring, every thing is fine stories. If nothing else, have your husband talk with your surgeon about his concerns; they are valid and should be addressed pre-op. Good luck, Sally
Carlita
on 6/14/07 11:42 pm - N.F., PA

Hi there.  I can certainly understand your husband's fears - it is a scary thing having this surgery.  But sometimes it can be scarier not having it, too.  I personally know (including myself) 8 people who have had this surgery, the first of whom had it in 2001, and the most recent person just had his surgery in April of this year.  I work with four of these folks so I see them every day, and none of them have had major complications.  My son is one of them too, and he's doing fantastic, as am I.  The one gal who had hers in 2001 has had some issues with vitamin deficiencies (specifically iron and B12), but she has admitted to me that she isn't great about taking her vitamins.   The most important part of the initial process is having a great surgeon - someone who has done ALOT of these surgeries and has a fabulous success rate.  Make sure you find this stuff out - that is your best edge for having a successful surgery and post-op.  I can't stress that part enough.  Not every doctor who is doing these surgeries is a GREAT doctor, and that's what we want and need.  Also you mention that you're in decent health now, and that helps too.  People who start out with a lot of problems have higher risk. 

You will also probably see a lot of debate about OPEN versus LAP surgery.  Personally, I favor LAP because of the shorter recovery time and basically no incisions to be concerned about.  I would not have had my surgery open.  But I was lucky to find an extremely highly recommended and trained surgical team who only do these surgeries LAP.  The woman surgeon I had trained under one of the best in the country at this (Dr. Philip Schauer-my son's surgeon). Keep checking things out to your complete satisfaction and dont' settle for less than the best.  You have all my best wishes. Carlita

I Chick
on 6/15/07 12:18 am
I just hit my 7th postop anniversary this past Monday. Feel free to read my profile for the complications i've developed that did not appear until year 6. I've done everything right, and it still happened. I'd never say dont have surgery, but statistics are finally starting to show up about some postops who are developing these types of complications years down the road. Most people however, are absolutely fine :) It's rare..but it is happening. Good luck! I Chick
Jennifer R.
on 6/15/07 1:53 am - Spartanburg, SC
just went to read your profile and it is blank under story and blog sections? what kind of complications did you have 6 yrs out? thanks!

                      Jen 
  

daffodil
on 6/28/07 9:56 am - zion, IL
I Chick, I personally appreciate your candor and honesty. Sometimes when I feel a strange feeling, twinge or pain, oftentimes I will come to the boards to see if someone else is having the same issue to know whether I should make a call to my surgeon. I hope to see you posting more often. Thanks! Sue
Judi J.
on 6/15/07 12:57 am - MN
im still preop too but can i chime in anyway? (rhetoricalquestion im going to) what surgeon are you considering using? in my area, we have an rny-mill type surgeon who has many patients with problems. then we have a couple of highly qualified, surgeons who haven't had near the amount of problems and *****quire lots of educational classes before they cut. talk to your hubby about these things, and please take a second look at the surgeon's record if you are planning on using the same one as the 2 people you know who have had issues. ill go back to my lurking preop status now :) judi
I Chick
on 6/15/07 2:46 am
I dont know if you meant my blog was blank..but it isnt..and others have read it with no issue..but if you cant and you were referring to my complications this is a post I made to the boards and the one that is in my profile.. I barely drink, never did really. I've taken my vitamins faithfully AND diligently for 7 years. I take the right kind of calcium. I take 3 prenatals I take b12 shots I take my iron. I eat high protein/good carbs/lots of fruits and veggies. I drink my water. I exercise. I have a b1 (thiamine deficiency) I have b12 issues (didnt develop those until October of 2006) I was diagnosed with Nesidioblastosis. I am anemic. My profile is empty. I left OH in Fall of '04 and took my profile with me. I don't have time to sit and type it all out right now but I also didn't think i'd post about this or meet up with such negativity from some about being honest. My postop health at this point is what it is. It's not from not taking vitamins and not drinking water ..or drinkinig soda or drinking alcohol. I NEVER had issues until my 6th year. I guess I dont understand why people who are having issues and are honest enough to talk about it are greeted with hostility. I've never been mean to a soul here or unpleasant..but I think I should be able to talk openly and honestly about what i'm dealing with in the same way some people talking about the bowel habits they are having, or marriage problems or someone asking them when they are due. Are those types of subject more important? or is it because my mentioning it makes people uncomfortable? See the latter I CAN understand..there is nothing wrong with what my issues are or others making people nervous..I never gave any of this a thought until it happened. I figured I was "in the clear" at 6 years out..most people *****plied to the thread are 2 years and under for the most part..some are longer out..but you need to realize I am SEVEN years out.that is much further out than most... For me, it is what it is..I deal with it..I dont come here asking people to do anything for me or pray for me..I saw a thread about someone having complications and I mentioned mine..thats it..it's really not that complicated. Some people didnt like what I said or that I said anything that all..I cant help that..and I wont apologize for being hoonest about what I deal with..I feel like my issues are imiportant especially to ME.. Ok so let's see what I deal with... Froom Wikipedia..

Nesidioblastosis is a controversial medical term for hyperinsulinemic hypoglycemia attributed to excessive function of pancreatic beta cells with an abnormal microscopic appearance. The term was coined in the first half of the 20th century. The abnormal histologic aspects of the tissue included the presence of islet cell enlargement, islet cell dysplasia, beta cells budding from ductal epithelium, and islets in apposition to ducts.

By the 1970s, nesidioblastosis was primarily used to describe the pancreatic dysfunction associated with persistent congenital hyperinsulinism and in most cases from the 1970s until the 1970s, it was used as a synonym for what is now referred to as congenital hyperinsulinism. Most congenital hyperinsulinism is caused by different mechanisms than excessive proliferation of beta cells in a fetal pattern and the term fell into disfavor after it was recognized in the late 1980s that the characteristic tissue features were sometimes seen in pancreatic tissue from normal infants and even adults, and is not consistently associated with hyperinsulinemic hypoglycemia.

However, the term has been resurrected in recent years to describe a form of acquired hyperinsulinism with beta cell hyperplasia found in adults, especially after gastrointestinal surgery.. From the New England Journal of Medicine.. http://content.nejm.org/cgi/content/short/353/3/249 That's a link to a study done by the New England Journal of medicine in regards to post gastric bypass patients developing Nesidioblastosis. From Wikipedia in regards to the Thiamine deficiency

Beriberi is a nervous system ailment caused by thiamine (vitamin B1) deficiency; its symptoms include weight loss, emotional disturbances, impaired sensory perception (Wernicke's encephalopathy), weakness and pain in the limbs, and periods of irregular heart rate. Edema (swelling of bodily tissues) is common. In advanced cases, the disease may cause heart failure and death. The origin of the word is from a Sinhalese phrase meaning "I cannot, I cannot".

Contents

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[edit] Causes

Beriberi is caused by a lack of thiamine. It is common in people whose diet consists mainly of polished white rice (which contains little or no thiamine because the husk, which contains most of the thiamine, has been removed) and in chronic alcoholics with an inadequate diet; it is also a known (though rare) potential side effect of gastric bypass surgery. If a baby consumes the milk of a mother who suffers from thiamine deficiency, the child may develop beriberi.

The disease has been seen traditionally in people in Asian countries (especially in the 19th century and before), due to those countries' reliance on white rice as a staple food.

[edit] Symptoms and effects

There are two forms of the disease: wet beriberi and dry beriberi.

Wet beriberi affects the heart; it is sometimes fatal, as it causes a combination of heart failure and weakening of the capillary walls, which causes the peripheral tissues to become waterlogged. Dry beriberi causes wasting and partial paralysis resulting from damaged peripheral nerves. It is also referred to as endemic neuritis.

[edit] Treatment

Treatment is with thiamine hydrochloride, either in tablet form or injection. A rapid and dramatic recovery within hours can be made when this is administered to patients with beriberi, and their health can be transformed within an hour of administration of the treatment. Thiamine occurs naturally in unrefined cereals and fresh foods, particularly fresh meat, legumes, green vegetables, fruit, and milk.

Read for yourself, research as much as you can. Ask your doctors, ask more doctors, remember, it's not because of non compliance or from not follwoing orders..lots of us are having problems because of malabsorption and because our digestive tracts were rearranged.

I'm happy to be thinner of course, but I wish I wasn't having to deal with this..it isn't fun for anyone dealing with this..it's scary...but by not talking about it doesnt mean it doesnt exist.

I'm not going to bore you all, and whine (not my style)..hell I don't even complain. But I wont allow people to treat me like a leper because I have issues.

none of us are immune. so for every person who thinks it cant happen to them..I sure hope thats true..but remember..we've all had this surgery which makes us all susceptible to these problems..just keep track and if you notice anything out of the ordinary..please get it checked out immediately!

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