Re: RNY - My Opinion - LONG

[Guest guest]

--- In duodenalswitchegroups, " Frannie Gomez " <CMKFK6@y...>

I often have orange, oily, oozing

> liquid which is difficult to control.

Frannie,

what you describe is exactly what I experienced when I tried

that medicine that prevents fat digestion, and it ran thru me. Have

you tried a low fat diet?

Also, it may not be much consolation, but RnY patients have bowel

problems sometimes too, and with your history it's possible you would

have had problems no matter what surgery you had done.

And keep in mind that 9 months out is not *ALL* that long.....You may

still have improvements coming! We can hope, huh?

regards,

[Guest guest]

Frannie,

I am sorry that you are having such problems with diarrhea

etc. The " oil slicks " must be greatly distressing and I can see why you

do not like the surgery because of that.

The problem with being able to eat a lot of food I don't totally

understand that as being a problem. If you were not continuing to loose

weight, I could see that being very worrisome, but since you are loosing

weight I am not sure why it upsets you. I think you are probably

hungry--truly hungry (since you are still loosing weight it means you

actually aren't overeating [i think]).

Am I right that what I am hearing is that is scares you that you

continue to be hungry. You wanted the surgery to make you full when you eat

a little bit of food. Could you speak to Dr. Gagner nutritionist about this

(maybe over the phone)? Maybe there are foods that you can eat that will

make you feel fuller faster? If you can find away to relax about the amount

you can eat--knowing that your hunger is legitimate and that you are still

loosing weight , then that might make it less frightening. I do think the

food eating problem would probably be the same with the RNY--because if you

are eating a lot when you have the RNY, from what I hear, you would be

stretching the pouch and it would get bigger--so you will be able to ear

more or you might cause other problems (or throw up a lot.)

Part of this procedure is reversal. If your diarrhea et. al. is

so severe maybe the doctors can change or reverse that part of the surgery

(just a suggestion.) I know that no one would want that to be done but, it

does sound awful. There is a post-op list. Maybe they can make some

suggestions to help with this problem. I do wish you all the best. I am

very glad that you posted your problems and I hope that you understand that

my suggestions (which are uninformed--since I am pre-op) are only an

attempt to help you through the distress that I hear in your post.

Dbbr

At 05:09 AM 10/15/00 +0000, you wrote:

>To everyone who wrote to me about my post regarding the survey Vickie

>posted.....Thank you for your nice

>remarks to me. ly I was very hesitant to write my answer since I

>know that I am definitely a very

>minority opinion. I voted that if I knew what I know now would I

>still have the DS, a RNY or no surgery. I

>said that I would probably have the RNY instead of the DS.

>DISCLAIMER!!!!!!!!! This is my experience and

>I share it in the hopes that no one will send me nasty e-mails, call

>me a liar, disparage my comments, make

>fun of me, belittle my situation, or discount my experiences or put

>down my feelings and dismiss my

>words. I hesitate to post this becasuse all of the above has

>happened to me when I have said

>something which was not status quo or glowingly enthusiastic about

>the DS. Please!!!! I think the DS is a

>great operation and should be available to more people but knowing

>what I know now and based on my

>experiences, I think I would opt for the RNY though I do not

>encourage others to blatently have the RNY

>or DS. I am 9 months post op, had the Lap BPD-DS with Dr. Gagner in

>New York City (I live in Florida

>and traveled 1300 miles for the DS) At the time I felt that it was

>the best choice for me AND I could

>make it happen with my insurance and the fact that I had family in

>New Jersey. Those were the bottom

>line factors for me. I was so sick that if I had had to have the RNY

>I would have-I had to lose the

>weight and I was willing to do whatver it took to have the surgery. I

>had options which are not available

>to other people-they may want the DS but it is not feasible for

>financial, insurance, or logistical reasons. That said,

>I felt that I did not want to deal with dumping, didn't want the food

>restrictions, wanted to eat a

>normal meal-in short all the positive aspect of the DS. I had severe

>diverticulosis, Irritable Bowel

>Syndrome, and Spastic Colon so I felt that the possibility of

>diarrhea and loose stools post op was

>something I could handle since I already handled it. Also the fact

>that people reported foul bowel

>movements and gas was something else I thought was normal-doesn't all

>elimination smell? So what would

>be different? I could not picture myself eating 2 tablespoons of

>food and call it a meal and never eat a

>piece of cake or pie again, always be in fear of hidden sugars and

>dumping syndrome, and possibly having

>less weight loss. I made an informed and educated decision to have

>the DS and did so on January 6, 2000

>at a weight of 375 pounds and BMI of 64. Today I weigh 235 pounds,

>have lost 140 pounds in 9 months

>and have gained a health that I haven't had in years. I am so happy

>that I had the surgery and will live

>with my choice of the DS-it is not a bad decision, I did what I

>thought was right for me. But the

>question was would you do it over again? Yes, in a heartbeat. It is

>just that I would not be so negative

>about the RNY and would seriously consider having that operation

>instead. I have diarrhea and loose

>bowels everyday, sometimes 6, 7, or 8 times. I read that even if the

>DS patient did have this problem

>initially, after about 6 months most people stabilized and the

>problem went away. But this has not

>happened FOR ME. I will go 3 or 4 times before I leave the house in

>the morning and continue all day long. Sometimes I am at the

>gym walking on the treadmill, have a strong urge to evacuate and

>literally have to jump off and run to the

>bathroom. Sometimes the power behind the pressure is so painful and I

>have to tell you that I have not

>made it to the bathroom in time. The smell is so powerful and strong

>that I have not been able to find

>any spray or substance to neutralize this odor. When I walk down the

>hallway in my house to use the

>bathroom, I can smell the lingering odor. Sometimes when I come out

>of the bathroom my daughter says

>she can smell the odor " around me " The gas is explosive and also

>extremely offensive; sometimes I think

>itis gas but feces comes out. I often have orange, oily, oozing

>liquid which is difficult to control. The

>other night I had so much gas, it would come out like " wet

>rasberries " (don't mean to be gross) and there

>is this oily stain on my underwear. When I woke up in the morning I

>felt something warm, smelled

>something awful and just " knew " . I got up from my bed and there was

>orange, oily stains all over the

>linens (which did not come out in the wash) I am very tired of it

>all yet perfectly resigned to this

>part of my life. I knew that it was a possibilty, and I thought that

>I might have more problems since I

>had bowel problems pre op. But I guess I hoped that if I had this

>situation, it would only be temporary.

>My doctor seems to think that most people have problems and I am like

>all the rest-which I know is not

>the case. I know too many of you who do not have this problem-but it

>is a reality for some of us-please do

>not write off my experiences. Also, another reason I would choose

>the RNY rather than a DS is the fact

>that after many months of interacting with so many RNY post ops, I

>see that the reports of food

>restrictions, dumping, and horrible limitations are greatly

>exaggerated. Too many of these post ops

>report a return to a regular diet and unlimited food choices after a

>period of time. They also eat more

>than 2 tablespoons of food for a meal and most do enjoy full variety

>and freedom of food choices. The

>perception that the RNY people are to be pitied or laughed at because

>they eat so little simply is not the

>reality-kinda like the misconception that all DS people have diarrhea

>and foul stools-(most of you know

>that that is not the norm either). I am NOT happy with the quantity

>of food that I am able to eat. I now

>know that realistically the RNY also have unlimited food choices,

>too, albeit they have to be more careful

>and usually eat small quantities of sugars. This would be very

>welcome for me. The first 6 months post op

>I, too, seemed to have a decreased desire for the sweets, junk and

>large portions of food. But for the

>past 2 months I have been able to eat increasingly large amounts of

>food and I do not laugh about it,

>revel in it nor gloat over this fact. I am not happy that I can (and

>do) eat 20 Toosie Roll Midgies, 20

>Hershey Kisses, a whole bag of potato chips, soup, salad, sandwich,

>chips, fruit, and an our later, feel

>hungry again. I find myself hungry physically and mentally, too. I

>go to the refridgerator and look for

>food. Start to eat this or that, snack on junk, and then eat dinner

>on top of all of this. I know that some

>days I think I am eating a lot but in reality I am not. But there are

>too many times that I think I am

>eating too much and I AM. I do not like how much I am eating and the

>capacity is starting to worry me. I

>am losing weight but that is not the issue-if it was then nothing

>would be bothering me. I don't like the

>behavior which the DS is lending itself to FOR ME. I know, I know, so

>many of you do not experience this

>but I am and I don't think I am the only one. I wish that I could eat

>a 6 piece nugget meal and be full-I

>am not. I am back up to eating some things like before- Not the huge

>quantities like an entire half gallon

>of ice cream in an evening, but I can eat a half dozen cookies, a

>glass of milk, more cookies, and then

>dinner. This is not what I wanted. I thought that with 4/5 of my

>stomach gone I would not be able to

>eat this much. My stomach capacity was measured on the OR table to be

>left at 100 cc. How can I eat so

>much? Now to be honest, there are some days when I can't eat very

>much and I fill up very quickly and

>thus eat only small quantities. But right now I am alarmed at the

>behavior I see and the capacity to carry

>out this destructive behavior. I know that so much of this is my

>compulsive overeating and food

>addiction, but I thought I had had this beat. After all I went

>through and also my experiences the first

>6 months post op. But I can see that this is a problem for me and

>that the forced small quantities of

>food inherent with the RNY (but that do increase in time to a much

>more palatable amount) might have

>been a better option for me. At this time a year ago I admit that I

>did have misgivings about the BPD-DS

>because of what I had read that people could eat large quantitites of

>food and still lose weight-I was

>uneasy, but the reasearch proved this to be true and I read that the

>huge quantities of food were really

>just normal size meals; I was willing to go this route. So in this

>area, though, I am having a real struggle

>and I feel so sad and beat. I am trying to overcome some of the

>emotional and mental stress regarding

>this aspect of my life. So, maybe you all have a better understanding

>of why I would choose the RNY if I

>knew then what I know now. But at the time I truly felt I made the

>best choice, today I do not regret my

>choice of the BPD-DS, and am trying to make the necessary adjustments

>to fully enjoy the new life I have

>thanks to the Weight Loss Surgery. No matter what I have gone

>through or what will happen in the

>future I do not regret for a moment my decision-it is just that I

>certainly have a more balanced and

>realistic view of both operations and that has really come about by a

>tremendous amount of personal

>contact and interacting with all post ops, keeping an open,

>nonjudgmental attitude towards others, and

>being realistic and using common sense in my observations and ability

>to see, understand, and appreciate

>all sides of all the coins. I know this is so long but felt like this

>might benefit some of you pre ops or

>those of you out there who are going through what I am (and are

>afraid or ashamed to admit what is

>happening to you-you are not alone, just in the minority!!) Please

>feel free to e-mail me privately if I can

>help you with more (!!!!) information. I would also like to say that

>I have tried every dietary modification

>and suggestion to relieve some of these problems, can not afford to

>fill any prescription drugs that might

>help (but also would compromise weight loss) so have bought an $8

>bottle of generic FiberCon to see if

>this will help (and preliminary results are mixed). Counseling is

>also not an option since the insurance will

>not cover it and I don't qualify for other assistence programs. (I

>have gone back to OA though)......... So thanks

>for any suggestions you might have, but I probably have tried them

>all and they just aren't helping me. I

>am not being cocky or obnoxious-this is not my intent and those of you

>who know me would agree. Sometimes there just aren't easy answers or

>suggestions, ....just support. Frannie

[Guest guest]

Frannie.....Thanks for your very honest and vulnerable post about your

experience. I am a pre-op and really appreciate the opportunity to hear

about everyone's journey--the good and the bad.

And....I hope things get better for you!

=====

H

San Francisco Bay Area

mailto: hillsmith2000@...

__________________________________________________

[Guest guest]

Frannie -- Thank you so much for writing all this down. And thank you

for having the courage to post it. Bravo!

I nominate your post as required pre-op reading. You reinforce the

fact that WLS is a tool, not the total answer. The operation is on our

GI tracts, not our brains, and success comes with changes in both

locations. The brain changes are the hardest ones, I've found.

Regards -- Margie in Austin, TX

5'4 " , pre-revision 275#, 10/04/00 down 47#

RNY GB in 1987, revision to DGB/DS 02/01/00

Dr. Crookes, USC University Hospital, LA, CA

> To everyone who wrote to me about my post regarding the survey

Vickie

> posted... Sometimes there just aren't easy answers or

> suggestions, ....just support. Frannie

[Guest guest]

Frannie

If you feel so strongly about your problems with the DS why don't you

just have it reversed? There is no medical reason why you can't.

When Dr. Gagner went over my options last year, I fully understood

that the entire intestinal portion could be reversed. In fact the

stomach can also be revised to a pouch with a stoma. So in effect,

you can have it changed to a RNY.

If you are so unhappy, why don't you do something about it? You have

the right to a happy life. And if a RNY would make you happier, just

do it. That is one of the good things about the DS surgery. It can be

reversed or revised.

I wish you only the best in pursuing what will make you happy.

Marentes

BPD/DS 11/18/99 Dr. Gagner

Starting BMI 55 Now 33.5

Total loss: 120 lbs.

PS If you would like to email me pvtly on what you have tried, I

would be more than happy to see if I can come up with any new

solutions.

[Guest guest]

Robin,

I agree, but think it isn't possible for us to know the nature of that

therapy until after surgery and we can assess how the chemical changes are

affecting us. I think it may be different for a lot of people.

J

[Guest guest]

Mich,

My feeling is that out-of-control eating is in the head, and the DS,

RNY, VBG -- are not brain surgery ;-) No... I don't expect any surgery

to cure my compulsions in the long term.

Robin F

[Guest guest]

Kay,

I appreciate your post. And thanks for the hug.

There is a lot of 'true believer' mentality on other lists in which one

particular surgeon or procedure is deified and all others vilified. Since

many of us regained hope and started to relinquish some of our shame when we

found the online surgery mailgroups and web sites, I can understand why we

can be fiercely loyal to what we see as the pathway for our personal

recovery and healing. I appreciate being reminded that there are many paths

to finding our way out of the burden of MO, and more than one surgical

approach.

This list seems to me to represent the finest of qualities in support and

fairness. People share more than the superficial 'rah rah', and 'yeah'

here.. I treasure the creation of safety where we can post about our hopes,

fears and struggles. I know that some people are very uncomfortable with

any differences in opinion. However, I see that as a great strength of this

group.

And I agree that we are wise enough and caring enough to embrace and support

a member who is having a rough time. And we are wise enough and caring

enough to recognize that those whose words were harsh and seen by others as

hurtful are also a part of our group. I have inserted my foot into my mouth

often enough to consider asking for permanent removal of it at the same time

I have my switch. I don't want to be exiled for telling of any negative

experiences I may have had nor for a thoughtless or poorly thought out post

I might write when my foot is firmly planted in my mouth. (and yes, I am

still able to eat despite the obstruction <snort>)

In this medium of cyber communication, sarcasm and irony are almost always

interpreted as hostile, judgmental or critical. Speaking for anyone other

than ones self can come off as arrogant and uncaring.

Some of us are better and being supportive and accepting than are others.

And as hard as it may be to hear words I don't want to hear, I am trying to

stay open and receptive to all here.

In support,

in Seattle

----- Original Message -----

..The animosity that exhist between this site and Amos is

> repulsive.

> We are no longer kindergartners. This is not a case of my Daddy is

> better than your Daddy.We are adults making life and death decisions

> about our life.As we have experienced many times on many different

> levels " ONE SIZE DOES NOT FIT ALL " !I thought we were here to support

> each other no matter what the choice of surgery.That is what we say

> to everyone.Lets really band together and be what we say we are!!!!

> The other thing is,you guys don't seem to understand that Fran is a

> DS patient.Even though she has had a different experience than

> others,she is still a DS patient.We all keep posting asking why I

> can't find a negative experience.Well this is one.And what do we do

> try to make light of everything she says.How could you expect anyone

> to come forward with a problem.

> She needs support and understanding. Someone to be there for her

> and help her figure out what is wrong.

> What do you say gang. This is our opportunity to build the bridge

> between the two groups.Lets be the support we profess to be.Let's

> band together and be the support for all weight loss surgery we

> profess to be.If we band together and support each other we can make

> a much louder noise in our defense.

>

> Pushing soap box under Desk;

> {{{{{BIG GROUP HUG}}}}}

> Kay/MS