For

[Guest guest]

Dear ,

I have had no experience with the surgery you may be facing, but I do

wrestle with frequent bouts of gastroparesis.

I have a question you might ask your GI team of docs. Since they now

have the so-called " gastric pacer " that seems to work well for emptying

the stomach contents, is there anything on the horizon for the rest of

the digestive tract? Of course, if your colon is becoming necrotic, this

would obviously not be appropriate, even if available.

I have read that there have also been successful bowel transplants,

though rare. If I remember correctly, the surgeon who invented the

gastric pacer is in Kansas City. Perhaps you could arrange a

telephone-teleconference with him, with you, and with your physicians.

He certainly must be a creative thinker, very willing to think " outside

of the box. "

(I don't remember his name, 'tho Beth from Maine may have consulted him

in the past. Beth, are you out there? We miss you! I am sure your

doctors know this innovative surgeon.)

I echo Alice's concern about the rigors of surgery on the mito body,

especially after having met you at the UMDF conference three months ago.

There are many others here very knowledgeable about all of the various

feeding tubes, and I think you may already have one. If I were your

physician, I would wish to see you stronger physically before attempting

major surgery. However, I realize fully that this surgery may be the

best solution for you.

Also, I know that the gastric pacer is a miniminally invasive surgery,

with placement of tiny elecrodes that stimulate the stomach to empty.

Are there areas of your colon that are the proven slow spots, or is the

entire organ far too slow? I am just thinking out loud here. Could

electrodes just be placed along the problem areas of this tube called

the colon?

Especially given your youth, maybe they could try a lesser route. So

many advances are always on the horizon, perhaps even gene therarpy in

your lifetime. I truly think that will come.

I send you every good thought, and many prayers, .

I was especially appreciative of Barbara's description of her feelings

going into major surgery. I think that our intellect and our

emotions--not just our bodies---must be prepared for surgery, especially

one as invasive as that which you face.

Please get as strong as possible, in every way. Having said that, I

believe that you are already a very strong person, having lived with

this disease with all the eveident grace you radiate...

God bless.

Love,

S.