Re: Deborah Contacts Needed

[Guest guest]

Pam..

I am confused...we have talked before but after scanning this again

today and reading the update I have a question. I am posting to the main

board cause others may wonder the same thing. One place you say you had a

reversal...I took that to mean your stomach was back to how it was before

surgery...but then in your update you mention revision not reversal and that

you still have a cigar shaped pouch. So you just got a revision not a

reversal? What exactly did he do for you on revision that helped you get

better? Thanks for taking the time once again!! Hope all else works out

well for you!!

Holly in Illinois

BMI 52

[Guest guest]

Dear Deborah,

I am 17-18 months post-op. My experience with Dr, R's MGB has been a mixed

bag. I have written an 18 month journal which includes many problems which

" can " but do not usually occurr. The journal turned into more of a " novel "

once I started typing it so I warn you....take it with you into your

" library " (ours is my bathroom, if I can get the door shut before the herd

of wild poodles join me!) and settle in for a long read.

Since several pre-ops and even a few post-ops have requested a copy of my

" Dying To Be Thin " missive I am posting it once more to the main board.

Please pay particular note to the UPDATE info at the bottom of the jjournal.

If after reading it you have more questons please call me @ or

e-mail me with my name & /or Journal in the subject line. I will be

unsubscribing to the main list but will stay connected through the post-op

list.

Dear Janet,

Pam in NC here. I had MGB surgery on1-4-99. My pre-op wt. was 318, my

lowest wt. (anorexic) was 143 and I am currently holding between 16-170

since my MGB Reversal on October 24, 1999.

Awhile back I posted my journal entitled Dying To Be Thin which details my

experiences over the past 18 months. It is very long, but I am including it

in this message. If after reading my " War & Peace " version of MGB surgery

experiences you have any questions, please call me or e-mail me

and I'll try to answer them or point you to someone who can.

Dear Gang,

I've been away from the computer and group for so long that I hardly know

where to begin. What I am attempting to do in this message is detail my

experience with MGB surgery, how my life has changed because of it and where

I am now.

Before I get into details let me say unevquivocally that I feel Dr. R is a

top notch surgeon who will do everything in his power to see that things go

smoothly and any problems which do arise are handled expediently.

None of the problems I have/had since my surgery are the result of poor

medical care by Dr. R or Durham Regional. I apparently am in that 3% of

patients who have been through this surgery and developed serious

complications that were not easily or quickly manageable.

My surgery date was Jan 4, 1999. I weighed 318 pounds pre-op. My hospital

stay was only 2 days and I had relatively little pain after the first day or

two. My at home recovery seemed to be going well too. The juice and

" liquid portion " of my diet were not difficult to maintain (But then I've

always been a juice drinker). By the end of the first month I was able (Dr.

R quit reading here.....) to eat a few bites of (ground) of turkey and

steak. The second month I started adding additional foods a few at a time.

Everything seemed to be going well, except that I was disappointed with my

rate of weight loss. It seemed like everbody else was losing faster. I had

to keep reminding myself that everyone's metabolism has its own natural

pace: some lose 2-3 pounds in a day or two and then don't lose for another

week; some lose steadily at about 1/2 to 3/4 pound a day.

I really didn't notice much visual change or clothes size changes until the

end of the 2 - 3 month. After that initial period I averaged 1-2 dress

sizes per month. This was with almost no exercise other than walking and

occasionally water aerobics. ***No-No # 1: Don't sabotage your progress by

skipping exercise. Even if it's only walking down your block or back and

forth around your neighborhood, DO SOMETHING. This is one of those don't do

as I do, Do as I say.... Now my weight loss is stabilized but the rapid

weight loss without a regular exercise routine caused me to lose not only

fat but muscle.

February 1999: By the end of Feb. I was having a lot of stomach

discomfort/pain and was getting nauseous. Dr. R and my family Dr. conferred

and I started on Reglan, Propulsid, Prilosec, Zantac, Actigall....you get

the picture.....if there was a " stomach " medicine out there I tried it.

During this month the only things I could eat were Frozen Lemon Slushes and

Dill pickles.

March 1999: Nausea and constipation continue. Began a series of tests,

Edoscopy, ERCP, Flex. Sigmoidoscopy etc. They found no leaks but did find a

" marginal " ulcer had formed at the edge of the new stapled stomach where it

was joined with the new small bowel connection. The excess bile " pools " in

the indention between this area and erodes the stomach lining.

Treatment of this ulcer which was not responding to conventional medications

resulted in a cauterizing of the bleeding ulcer during an endoscopy with

biopsy.

April 1999: Ulcer somewhat improved. Still a lot of foods I can't eat,

some because they make me sick to my stomach and some that have just lost

their taste. I was a meat and potatoes girl before surgery (and in our

house gravy was a " beverage " ). Since this surgery (up to this point) many

of the foods I loved before are no longer palatable to me: Potatoes

(Mashed, Stewed, (months later, fried), Catsup (which I ate with almost

every dish) would sit and go bad before I could finish the bottle.

May 1999: Staying fatigued, noticed some weakness in my left arm and leg,

couldn't sleep, depression returning because I was sick and tired of being

sick and tired. Dr. R told me to use the " nibble & graze " eating

method----meaning 6, 8, 10 small meals/snacks a day instead of 1 or 2 big

meals.

June 1999: Epigastric pain gone; severe constipation set in requiring

frequent enemas and Citrucel and stool sofetener. (See Nov/Dec for details

for more information on bowel habits)

July 1999: Getting ready to start back to work in our local school system

after a two year absence; excited about going to summer conference. Felt

great, was able to eat small portions (2-3 bites)

Got to summer conference and had to introduce myself to people who hadn't

seen me for a while. Heck, I didn't even recognize myself when I'd glance

in those floor to ceiling minors along the halls.....But, boy did I look

good! Talk about an instant ego boost.....the looks from people who knew me

(and especially from those who didn't know me before the MGB) were a

trip......It really added to my confidence level. About 80 lbs lost.

I hit the sales racks and went clothes crazy.....By this time I was down to

a size 20/22 and sometimes an 18.

***NO-NO # 2: Buy only a few essential items a month. I now have a closet

full of " professional " type clothing, most of which have never been worn in

sizes ranging from 22-12.

August 1999: School began on August 1 for teachers (I was a vocational

guidance counselor). The first couple of weeks went well, but I found I was

once again not able to eat. Everything made me feel like I was going to

throw up and I literally could not stand the thought of any type of " real "

food. I did manage dry Mixed Baby cereal (box), applesauce, popcorn with no

butter. Bread was extremely difficult to digest and didn't really taste

well either and the fresher the bread the worse the wadding up like paste in

your mouth. I was lucky to be able to eat 300 calories a day.

September 1999: Problems increasing. Totally fatigued, mental clarity

fading fast, increased migraine HA,

We went home for my Brother-in-Laws funeral and family members were so

shocked at my appearance that they called my husband Bobby aside and asked

him what was going on.....I looked so out of it to them that they thought

intervention was necessary.

I had to go into the hospital for 3 units of blood because I was so severely

anemic, all my electrolytes were out of whack, my protein levels were in the

pits, my potassium was off the bottom scale, etc. I litterally did not

have enough strength to walk by myself to the car from the Dr.'s office.

When I got to the car and got the door open I had to use the steering wheel

to help pull me into the car and then reach over with my right arm and lift

my left leg into the car.

October: This is the month where it all reached a boiling point and

something had to be done or my doctors tell me I wouldn't have made it

another week or two.

I was hospitalized at the first of October for more tests and to try to

build up my potassium via IVs since my body was not absorbing any

protein....even from the vitamins. *No-No # 3: Do Not Forget to take your

Vitamins DAILY!!!!!!

During this hospital stay the results of an upper GI with Small Bowel follow

through showed that my stomach was not emptying. What food I could choke

down just sat in my stomach. The Gastroenterologist who saw me said I had

" stomach paresis " which means basically that my stomach wasn't getting

signels to move the food on.

By October 22 when I went back to see my Family Doctor the results of my

Chem-7, Smack 20 and whatever other hundred things they tested for showed

drastically low numbers in all categories, especially, protein, potassium.

Dr. Bowen (PCP) was so concerned that he called Dr. R on Saturday and Dr. R

arranged for me to have my surgery reversed on Oct 24. We drove straight to

Durham Regional Hospital and within an hour I was prepped and ready for

surgery. The revision went smoothly and I was home 2 days later.

Everything seemed to be going fine. I still have to take 3 phenergren a day

along with Zantac and Prilosec if my stomach is acting up.

I still could not eat....even the thought of food made me want to

gag....forget Ensure, Boost etc...they were so rich I couldn't tolerate them

either.

During my DRH stay I had to recieve 4 more units of blood. I lost 80 pounds

between late August and October when they un-did my bypass.

Everyone asks if I would do it all over again given the

problems/complications that have arisen. My answer is that if this surgery

only affected me and it came to a point where I wanted it done or re-done as

the case may be I would still be in favor of the procedure.

However, my husband feels differently. He is now vehemently opposed to the

procedure...He says he would rather have a healthy 300 + wife than an

anorexic skeleton or someone whose 158 pound weight loss left no quality of

life to be able to enjoy the " new " me.

Our daughter who at age 17 also had the surgery performed ( June 1,

1999) She has had excellent weight loss results (100 lbs) and now wears an

11-12 jeans, and a medium/large shirt. She has had a great deal of residual

pain, feels generally yucky, has had an appendectomy and gall bladder

surgery since her June operation.

September and October were my worst months...I was literally a walking

skeleton with just barely enough strength to " shuffle " across a floor. I

had to hold on to someone or something to step up on a curb going into a

store etc. The only thing that didn't happen was that my depression was

relatively moderate considering the fact that my life and health were

(again, literally, and without trying to sound overly dramatic) hanging in

the balance. My family physician, during October told me he didn't think I

realized just how sick I was. I guess he was right. It wasn't until late

December, after my revision and when I was once again healthy enough to

begin to understand the gravity of the situation necessitating the reversal

surgery that he confided that he really thought I might not survive if

something weren't done immediately. Feeding tubes were discussed (even

after the surgery...see paragraph below) but on Saturday, October 23, after

reviewing my latest lab (Chem 7, and 14 dozen (so it seemed) tests HE

phoned Dr. R and aprised him of the situation. Dr. R immediately called me

and we determined that I would be driven to Durham early Sunday morning and

would have reversal surgery that same day upon arrival.

At my lowest weight prior to the revision I had lost down to 145 lbs. Now I

am holding steady between 160 -170. I can eat again thanks to Remeron (an

antidepressant which also stimulates appetite ..considered a bad side effect

for most people, but was part of what I needed to stimulate my appetite) and

erythromycin (an old-time antibiotic which has as one of its " side effects "

stomach cramping). That's what I need to get the food moving. The

combination of the two have really helped. I can now eat pretty much any

thing I want, but just in small portions. Dr. R's " nibble and graze "

philosophy has served both and I well since my revision.

November and December were spent trying to regain enough strength to lead a

normal life instead of having to hang on to something to step up 2 very

short steps, up on a curb etc....I literally did not have the strength to

lift my legs. I could not pick up or hold anything with my left hand and

arm because they were so weak. It took all the energy I had just to walk

from my bedroom to the living/dining/kitchen.

Since Jan. I have been improving. I am much more stable on my feet now, but

still have to be careful about tripping or falling. My sense of equilibrium

is still a little " iffy " at times, especially on downhill slopes and uneven

ground. It has been (and continues to be) a slow process but I am hopeful I

won't regain all my weight.

Here are a few more general observations and recommendations from me to

everyone having this surgery.

****Read everything you can (good, bad, indifferent). Realize that the

disclaimers on the website about MGB being major surgery with the potential

for life threatening complications, some of which can be anticipated and

some of which may not have been enumerated is true and be prepared for all

contingencies. The human body and medical science (even in the most skilled

hands of surgeons like Dr. R are a crap shoot at times.

*****Don't assume that because the first month or two go smoothly that the

battle is won. Maintain a vigilant " follow up " plan with Dr. R and your

primary care physician. Make your family and immediate support group aware

of the danger signals in the event they " sneak up " on you like they did me.

What I am going to say next will sound melodramatic to most and

hypochondriacal to others, but it is what I believe with all my heart (hind

sight being 20/20 as they say): HAD IT NOT BEEN FOR MY MONTHLY, and

sometimes bi-monthly, VISITS WITH MY FAMILY DOCTOR I MIGHT NOT BE ALIVE TO

BE TYPING THIS JOURNAL.

*****Don't " beat yourself up " if your weight loss doesn't seem to be going

as fast as others who are posting their results. The " old hands " will tell

you we have all had to fight the comparison/envy game. Everyone's body

responds differently. Some lose 1/2 to 3/4 pound daily month after month.

Others may not lose for a week and then suddenly realize they have lost 3-4

pounds.

*****Take pictures at least every 3 months. You will be amazed at the

difference and the progress you are making will be more obvious to you in a

photo than by looking in the same mirror every day.

*****Do not be afraid to query Dr. R about any problems you are having. If

something can be done to fix them, he will know what that is. It may take

several tries of different options but he will be with you every step of the

way IF YOU STAY IN CONTACT. This is another one of my don't do as I do, Do

as I say edicts.

*****Take advantage of the support group of pre- and post-op patients.

We've been there and done that, and we may have insights which can help you

over the rough spots. Even those of us who have moved on with our lives and

may not spend as much time on line or answer every query will help if asked

directly. Sometimes the sheer number of e-mails if you are an active member

of onelist are so daunting (especially to those who may not be feeling well)

that it's too overwhelming even to begin to answer them. Those of us

old-timers though can usually point you to one or two others who are or have

experienced the same things you may be facing and you can write them

directly. Personally, I will always take time to talk to someone if they

phone me or even if they call and leave a message if I am not home, I will

return the call within a day or two.

Below are a few of the questions which have been e-mailed to (my

daughter, age 18 as of 4-3-00) and myself. My answers will be OUR

experiences and may or may not happen the same way with you:

Q. How long had I been thinking about having this operation?

A. I was familiar with the " old " Roux-en-Y (? sp.) operation and began

looking into possibilities other than diets, meds, nutritionists etc in

early August of 1988 shortly after my mother died of a pulmonary embolism

after years of hypertension, phlebitis, congestive heart failure and even

sudden cardiac death experiences. My father died at the age of 52 of a

heart attack. As my daughter is fond of remarking " Our gene pool sucks! "

and I knew I had to do something. Since I was already on disability leave

from work I thought this would be a good time to explore possibilities.

Q. How did you hear about Dr. R and the MGB

A. I looked up Bariatric Physicians on the Web and began scanning the info

about each and the " programs " they advocated. I wanted a physician

relatively close to home and found 2 in Charlotte and Dr. R in Durham. I

actually had an initial visit with the surgeon in Charlotte, but he only

performed gastroplasty (stomach stapling) and did not advocate " by-pass "

surgery at all. Even he wasn't aware of Dr. R's procedure until I told him.

Next I read and re-read everything I could that Dr. R had on his web site.

Then I called his office and lo-and-behold the great man himself answered

the phone (he even postponed temporarily leaving the office to go by a chain

saw in preparation for a hurricane that was approaching). We talked about

30 minutes and I decided I definitely wanted a face-to-face appointment.

The rest, as they say, is history.

Q. Was it extremely hard to do the juice thing for the first month or so.

A. Nope. This was the easy part for me but then I've always loved juice so

this wasn't a real hardship. I did miss the " chewing " aspect of eating and

when I started dreaming about Banana Nut Muffins I decided to " go off the

wagon " and eat one. It tasted every bit as good as I expected but it took

me 4 days to finish one muffin.

Q. Do I miss eating any foods? Have your tastes changed?

A. During the several month period when I couldn't eat because of the ulcer

and later on the severe malnutrition and nausea I really missed enjoying

food (any food) period. I guess it was at this point that I realized just

how much of my life and itenirary revolved around meals, food, and snacks.

Now that I can eat again without pain and limited nausea (controlled) I am

once again getting pleasure and appreciation from food.

My tastes have changed drastically. For the first time in my life that

I can remember a bottle of Ketchup had to be thrown away because it spoiled

before I could finish it. My husband (once I was better) joked that they

probably should have just hooked me up to a ketchup IV since I used to have

a little food with my ketchup instead of the other way around. I was a meat

and potatoes girl....it is just within the last couple of weeks that I have

been able to eat baked potatoes...in fact the more bland the food, the

harder time I have eating it....go figure! I tend to go on binges of eating

primarily one thing until I'm tired of it and then I move on to a new food

" addiction " . Right now, I'm ending my Waldorf salad fixation period and am

into steak (with BBQ sauce instead of Ketchup) and salad with Country French

dressing. It is only within the last month that I have been able to eat

ground beef. For months I couldn't tolerate meat (or vegetables for that

matter) of any kind. I lived (if you can call it that) on dry Mixed baby

cereal, dill pickles and an occasional bite or two of raisin bran or corn

flakes....complete with protein powder as a condiment on all the above. My

craving for sweets diminished, but I couldn't get enough salty foods. I

don't know that there is any medical significance to that (other than the

obvious fact that protein was obviously lacking), but that's the way it was.

Q. Did you have any side effects and how long has it been since your

operation.

A. The side effects I experienced you've already read (provided you've

stuck with this " War and Peace " version of my life since MGB surgery. My

surgery was on Jan. 4, 1999. My pre-op weight was 318 pounds at 5'5 " . My

short term goal was to get below 250. My mid-range goal was to get below

200. My long term goal was to be able to wear a size 16 or less. 's

long range goal was to be a size 11-12 or 9-10. She had surgery on June 1,

1999. Her pre-op weight was 252 at 5'7 " . She now wears a size Medium/Large

shirt and size 11/12 shorts, jeans (depending on the make). Her new

swimsuit is a size 12 and her dad may not let her out in public because she

is a " killer " in the looks department now. She was always pretty, but now

heads turn when she walks into a room. I'll try to get her to scan in a

picture from her prom in April of 1999 and a current picture soon.

Q. How has it changed your life.

A. The most drastic changes other than health wise which you've already

read about involve my relationship with food. I don't spend 3/4 of my time

figuring out where and what I'm going to eat next. I have had to develop

new interests. Until the health problems cropped up, I enjoyed being able

to do things that " normal " size people think nothing of: Going to Carowinds

or a fair and actually being able to fit into a ride; shopping in clothing

departments I haven't visited since high school; being able to leaf through

a Roaman's or Lane catalog and then chunk it in the garbage can,

because I can buy clothes in almost any store now; fitting into a booth in a

restaurant; being able to go through a turnstile at a concert hall or

amusement park without " lifting and throwing " my stomach over the bar and

hoping it would turn!

It has also been a blast seeing the reactions of co-workers or

others (including family) who haven't seen me in several months. They are

literally speechless and most don't recognize me until I speak to them or

re-introduce myself.

Less positive changes include major hair loss (I look like a chemo

patient), the slow recovery from my anorexic weight loss and protein

deprivation resulting in severe anemia. I also think that I look 10 years

older than I did when I weighed 300+. My face is thin now but it seems to

have lost its youthful appearance. I look 46 now but then, I am 46 so maybe

my age has just finally caught up with me. It's also time to consider a

panniculectomy to get rid of the excess stomach pouch....I only look 3-4

months pregnant now instead of 12!!!! I look pretty good with clothes on,

but the " saggy, baggy elephant " look is obvious when the clothes come

off....One more reason to make sure you establish SOME TYPE of EXERCISE

PROGRAM for post-surgery.

My body thermostat seems to be out of whack too. I stay cold, chill

easily and dress in 4 layers of clothes. There have only been two days this

spring that I have worn a short sleeve shirt. Oh well, maybe my air

conditioning bill will be considerably lower this year......I'll keep you

posted.

Q. Would you do it again knowing what you know now?

A. If I were single yes, but I couldn't put my family through what they

have had to deal with over the last year ever again if I have any control

over the situation. My husband (for whom my weight has never been an issue

in his love for or attraction to me) says he would rather have a 300+ pound

wife who had some quality of life, than a " skeletal...or worse mate.

says she would not recommend the procedure although all her labs look great,

she has not experienced hair loss and can eat anything she wants. Her

current problems are more the result of her appendectomy and gall bladder

surgery than the MGB.

Q. Have the health problems you were experiencing prior to the surgery been

resolved?

A. Initially, my blood pressure was well within normal ranges without BP

medicines. However, in the last 3 months my hypertension has returned and I

am once again having to take medication. I also have experienced severe

edema in my legs, ankles and feet. At one point for over a month my legs

looked like gourds which were about to split open and my ankles swelled over

my shoes. Aldactone (a diuretic which depletes potassium less than others)

has helped as have Ted support hose.

Q. How much and how fast did you lose weight.

A. My weight loss averaged about 1/2 pound a day and I didn't hit a plateau

until about the 2nd month for a week or so. on the other hand lost

much more slowly at first, would go for almost a week without losing any and

then show a weight loss of 3-4 pounds. PLEASE DON'T GET HUNG UP ON THE

" POUNDS LOST MERRY-GO-ROUND.) Consider instead or at least in addition the

loss of inches and clothes size.

The moral of this whole dissertation is that no one knows what is right for

you but you. Only you can decide if the advantages outweigh the risks.

Those of you who are now in the pre-op phase have the advantage of having

100 or so people who are 6 mos. to a year post-op who can detail their

first-hand experiences for you.

The sample patient letter on Dr. R's web site was written by me, so I can't

say I didn't know what I was letting myself in for, but I honestly did not

expect to have the severity of problems that I did. Fortunately for most of

you who will choose to have this procedure you will be in the 93 - 95% of

patients who have few side effects or relatively minor complications which

can be readily solved. Just be aware that the other 7% of us are out here

and that you may fall victim to complications you never expected.

For those of you who are out-of-state especially.....It is ESSENTIAL that

you maintain frequent contact with both Dr. R and your Primary Care

Physician!!!!! Make sure your personal support group knows the danger

signs. Call Dr. R with any questions (no matter how trivial they seem). I

don't know when the man sleeps but he ALWAYS answers his pages and e-mails.

Good luck. I believe in Dr. R and his procedure! Nothing that happened to

me is the result of anything he did wrong, or sloppily or a reflection on

his surgical skill and his dedication to those of us the rest of the world,

including many in the medical profession have " written off " as hopeless.

Above all else, he wants prospective patients to have a complete, unbiased

picture of what lies ahead......Good luck to you all.

UPDATE - August 2000

For anyone who hasn't already given up on the 18 month odyssey postings,

here is the latest news from the Greer family.

My weight has stabilized at around 175. My goal weight (forget those

" insurance " charts of expected height and size) was the 160-170 range. My

main goal was to be able to buy clothes at " regular " shops. My strength is

back and until the last couple of weeks I've felt pretty good. Now I have

been diagnosed with Fibromyalgia (NOT a result of Dr. R or the MGB). I am

also once again experiencing significant depression and lack of motivation.

Add to that the edema in my feet and legs (they look like sausages about to

split) and I have a new set of challenges.

However, the good news is my staying within that 10 pound " comfort "

goal/zone has been much easier than I expected it would be, but I am still

being careful about what and when I eat. Dr. R's " nibble and graze "

philosophy has served me well.....I know I'm only going to be able to eat a

bite or two at any one time so I just " munch " all day long. Fortunately,

since my MGB with revision, I have discovered that the amounts of food I can

eat at one time are about the same and I am hopefully not " stretching " my

" cigar " shaped stomach.....but heck even that would be preferable to

inserting a feeding tube to get my protein and electrolytes absorbed like

they needed to be.

I am scheduled for plastic surgery (panniculectomy) this coming Wednesday,

August 16. It will be interestng to see what my weight is after they cut

off my stomach " apron " ......the only problem I forsee is " Where will I tuck

my napkin? " so it won't fall on the floor....LOL

If you have other questions please write back to my personal e-mail rather

than the whole e-board and I'll try to respond ASAP.

Pam in NC

Pre-Op Wt 318 @ 5 ft. 5

MGB Surg.= 1/4/99

Lowest Wt.= 143 10/99

Reversal of MGB= 10/24

Current Wt= 170-175, Holding healthy and happy