Hungry? Not losing? Gaining? Dirty little secrets - (a bit long)

[Guest guest]

Dear Carol,

Sad to see that you have come exactly to the place in life that I have been

since about 15 months post op for me. Exactly the same journey, I could

have writen your post myself. I have long since had to come to the same

conclusions you have drawn and tried to find a way to live with it all. I

did not get what I paid for, I feel, when I laid down on the guerney.

Other health events have eclipsed that and somehow I have found a way, with

a little help from a power greater than I, to rejoice in the ground I have

gained, the health I have been given etc. It is not easy, but it is doable.

My heart goes out to you because on this issue it appears that we could be

joined at the hip.

Dan Slone

Surgery 5/2/2000,Yahoo Msg navwriter

AIM Navwriter58, ICQ 260890468

Hungry? Not losing? Gaining? Dirty little

secrets - (a bit long)

I think a member or two might have gingerly mentioned not too long ago that

there is a problem that sometimes happens with our surgeries that few docs

acknowledge, and seldom advise of as a possible occurrence.

I think it is now time to come out of the closet and shine a bright light on

this dirty little secret. Last week I flew to Seattle for an endoscopy and

consult with Dr. Ki Oh bcuz I have NEVER felt much restriction from my

pouch. I

have been SO frustrated when others talk about being absolutely stuffed on 3

bites of something. I have not been stuffed on even 10 times that much. My

first

solid (soft) food meal was 12 oz (some are supposed to eat only 1 oz; my doc

said 4 oz) and I COULD have eaten more--I was not full, or even satisfied. I

stopped eating bcuz I knew I wasn't supposed to be able to eat that much.

My surgeon turned a deaf ear to my complaints and pleas. He didn't exactly

say it was " all in my head. " Members of support groups, both online and in

person did, tho, intimate that it had to be " head hunger. " And that was both

hurtful and discouraging. I have spent the better part of the past year and

a half

believing that I am no better now than I was pre-op: unable to control the

cravings and eating more than I should. And hating myself and my failure

quite

thoroughly.

Well, guess what? The scope showed my stoma is 3 times the size it should

be.

Therefore pretty much rendering my pouch non-functional. Nothing wrong with

the POUCH: it's still just 15 cc. But the stoma is too wide and doesn't keep

the food in the pouch. It just pours right thru into my intestine; hence, no

fullness, no satiety, and the urge to keep eating and eating and eating.

Becuz the stoma has a tendency to relax/stretch somewhat over time of its

own

accord, it is extremely important that the bariatric surgeon make it as

small

as possible. In Dr. Oh's opinion, judging by my stoma size after a little

less than 2 years, it was probably made a bit too large in the first place.

The

rest of the bad news is that the anastomosis is so close to my esophagus

that

there is absolutely no room to do anything about it: can't move it, or put a

silastic ring on it, nothing. I am doomed to be hungry the rest of my life.

Am I

mad? Try royally PI - - ED ! Am I going to do anything about it? Don't

know.

Right now, I'm just struggling to accept the facts of life, so to speak. I

am

relieved that the stoppage of my weight loss is not " all my fault. " But I am

just devastated that I will probably NEVER be able to get to goal -- at 70

lbs

more to go. I can go more distal, which will give me some greater

malabsorption, but it won't do a thing about the large stoma or the hunger.

Another misleadig " fact " that was presented by my surgeon prior to my

proximal RNY was that the average weight loss is about 70-75% of excess

weight. Dr.

Oh says that that figure is for patients with DISTAL procedures. The amount

for

proximals is about 50-55% net loss bcuz of the usual amount of regain.

So, dear friends, let this be a clarion call warning. If you are struggling

with slow or stopped weight loss, or regain; if you are constantly hungry;

if

you have never or have at some point become unable to feel satisfied or full

after a meal (a normal meal for a bypass patient)--maybe you should get

yourself

scoped and see what's going on with " the mechanics " as calls them.

Sometimes something can be done about it. Sometimes, as in my case, not.

And PLEASE pass this info on to any other lists you subscribe to, so the

word

gets out. I would that not one other person suffers what I have gone thru

for

so many months, thinking all kinds of terrible things about myself, my lousy

willpower, my lack of moral fiber, my character defects, etc etc. If you

know

a pre-op considering this surgery, please tell him or her that this is a

possible outcome, and that they should query their surgeon closely, in

advance,

about what size stoma will be made, and where, and what can be done should

there

be a failure or relaxation or stretching of the stoma. They should know that

if a doc says that would not happen, he's not telling the truth or he's got

his

head in the sand. And if there are any pre-ops lurking on this list, be

warned as well.

I am not saying that I would not have had the surgery had I known this was a

possibility. But I would have CERTAINLY done more and better research, and

would have made sure that my surgeon would guarantee that my " mechanics "

were

constructed in such a way that it would not be impossible to rectify the

problem.

Carol A