Re: Re: Incisions in my post -ectomy scar tissue - TIM, please read this too!!!

[Guest guest]

Hi ,

Thank you very much for this very interesting information! I looked up the term

Septrafilm and found out over here in Holland (perhaps in other parts of the

world/Europe as well) it's called Seprafilm and wow, if I had known about that

stuff before...

I will send the specialist who's going to remove the scar tissue an e-mail

asking whether he knows Seprafilm and whether he has used it before and whether

his experiences are good or bad (should he be familiar with using it).

Tim, as you are now awaiting your surgery: I certainly would discuss this stuff

with your surgeon. Of course I don't know the pro's and con's yet, but I think

it's a pretty good idea using this (if possible with an -ectomy).

Thanks again,

Isabella

________________________________

From: ANGELA BAKER <kotacj@...>

achalasia

Sent: Saturday, December 13, 2008 3:03:14 PM

Subject: Re: Re: Incisions in my post -ectomy scar tissue

isabella- I work with surgeons. one doc uses septrafilm to help with scarring

and adhesions formation. since scarring and adhesion are the result of an

inflamatory response I wonder if this could be of help to you. also I wonder it

some type of low dose of a swallowed steroid, wouldn't help slow the

progression? my son swallows flovent to help inhibit eosinophils in his

esophagus... angela

Re: Re: Incisions in my post -ectomy scar tissue

Steve,

Life must be tough on you, never seeing the positive of any person in the world,

especially never seeing anything positive in any doctor.

By reading this post of yours, I think you try to help me? I believe you don't

understand what happened to me before? Have you followed my story and are your

therefore well enough informed to state the things you state here?

Well, in short this has happened to me before: I had an open myotomy performed

13 years ago. It helped me very well, but after giving birth to both my sons,

things went wrong again and I had a re-do of the myotomy Jan. 5th 2007.

Unfortunately this one didn't work and left me with only one other option, which

was the esophagectomy I. I struggled whether or not to go for it, but decided to

give it a try, since living on fluids only isn't my idea of great quality of

life, neither is living with terrible spasms day in day out. There were a whole

lot of things I weighed and that made me come to the conclusion I was best of

having that -ectomy done.

I was told upfront scar tissue could become an issue and recovering would take

about a year.

Now I am 8 months post -ectomy and I am still recovering. It is very normal to

have plenty dilatations for scar tissue after an -ectomy. Once you need as many

as I am needing right now, there are other options to consider.

Sure there is the risk of perforation, but when you know enough about scar

tissue at the adhesion area, you know that there is so much tissue, that risks

are very small.

My doctor has treated over 1000 -ectomy patients so far and all of them made it

and all of them are doing fine. In fact I am doing great as well, during the

days the scar tissue doesn't bother me. That's why they are helping me, to get

the scar tissue to stay away as soon as possible and to get me off the J-tube (I

need that during the nights still and during the days I am closed up).

I could get negative, but it would bring me nowhere. My docs informed me upfront

before going in for my -ectomy and they informed me now before undergoing any

new treatment. I didn't go through the -ectomy thing to give up after 8 months!

I just need to hang in there a bit longer and life will start over again for me.

It's a matter of staying positive and hanging in there.

It's too easy to give up. Life is too precious to do that. I am too young to

give in. My husband and kids deserve a healthy mother.

In my case there is no need to be afraid. Sure I might get a perforation. But

hey, I might get hit by a car tomorrow as well...

Isabella

[Guest guest]

Hi ,

It's me again... I already got an answer from my doctor. He told me he didn't

think in my case it was going to work, since after an -ectomy the scar tissue at

the adhesion area is formed because of lack of oxygen at that space and the

Seprafilm would work against other reasons of formation of scar tissue.

Hmmmm, that's a real pity, it sounded so great!

But thanks again for posting your advice!!!

Love,

Isabella

________________________________

From: Isabella Arnold <arnoldisabella@...>

achalasia

Sent: Tuesday, December 16, 2008 8:43:06 AM

Subject: Re: Re: Incisions in my post -ectomy scar tissue - TIM,

please read this too!!!

Hi ,

Thank you very much for this very interesting information! I looked up the term

Septrafilm and found out over here in Holland (perhaps in other parts of the

world/Europe as well) it's called Seprafilm and wow, if I had known about that

stuff before...

I will send the specialist who's going to remove the scar tissue an e-mail

asking whether he knows Seprafilm and whether he has used it before and whether

his experiences are good or bad (should he be familiar with using it).

Tim, as you are now awaiting your surgery: I certainly would discuss this stuff

with your surgeon. Of course I don't know the pro's and con's yet, but I think

it's a pretty good idea using this (if possible with an -ectomy).

Thanks again,

Isabella

____________ _________ _________ __

From: ANGELA BAKER <kotacj@...>

achalasia@grou ps.com

Sent: Saturday, December 13, 2008 3:03:14 PM

Subject: Re: Re: Incisions in my post -ectomy scar tissue

isabella- I work with surgeons. one doc uses septrafilm to help with scarring

and adhesions formation. since scarring and adhesion are the result of an

inflamatory response I wonder if this could be of help to you. also I wonder it

some type of low dose of a swallowed steroid, wouldn't help slow the

progression? my son swallows flovent to help inhibit eosinophils in his

esophagus... angela

Re: Re: Incisions in my post -ectomy scar tissue

Steve,

Life must be tough on you, never seeing the positive of any person in the world,

especially never seeing anything positive in any doctor.

By reading this post of yours, I think you try to help me? I believe you don't

understand what happened to me before? Have you followed my story and are your

therefore well enough informed to state the things you state here?

Well, in short this has happened to me before: I had an open myotomy performed

13 years ago. It helped me very well, but after giving birth to both my sons,

things went wrong again and I had a re-do of the myotomy Jan. 5th 2007.

Unfortunately this one didn't work and left me with only one other option, which

was the esophagectomy I. I struggled whether or not to go for it, but decided to

give it a try, since living on fluids only isn't my idea of great quality of

life, neither is living with terrible spasms day in day out. There were a whole

lot of things I weighed and that made me come to the conclusion I was best of

having that -ectomy done.

I was told upfront scar tissue could become an issue and recovering would take

about a year.

Now I am 8 months post -ectomy and I am still recovering. It is very normal to

have plenty dilatations for scar tissue after an -ectomy. Once you need as many

as I am needing right now, there are other options to consider.

Sure there is the risk of perforation, but when you know enough about scar

tissue at the adhesion area, you know that there is so much tissue, that risks

are very small.

My doctor has treated over 1000 -ectomy patients so far and all of them made it

and all of them are doing fine. In fact I am doing great as well, during the

days the scar tissue doesn't bother me. That's why they are helping me, to get

the scar tissue to stay away as soon as possible and to get me off the J-tube (I

need that during the nights still and during the days I am closed up).

I could get negative, but it would bring me nowhere. My docs informed me upfront

before going in for my -ectomy and they informed me now before undergoing any

new treatment. I didn't go through the -ectomy thing to give up after 8 months!

I just need to hang in there a bit longer and life will start over again for me.

It's a matter of staying positive and hanging in there.

It's too easy to give up. Life is too precious to do that. I am too young to

give in. My husband and kids deserve a healthy mother.

In my case there is no need to be afraid. Sure I might get a perforation. But

hey, I might get hit by a car tomorrow as well...

Isabella

[Guest guest]

isabella- I'm sorry for the dissappoint. I'm not giving up on other

possiblities. I'm going to ask around and see if some of the docs I work with

have additional ideas. do they use much hyperbaric in europe. I've seen

gangrenous digits improve using hyperbaric. oxygen under pressure. usually

reserved for the bends after scuba diving accidents but now are finding

applications with tissue profusion and wound healing...angela

[Guest guest]

Dear ,

Thank you so much for trying to help!!!

Indeed they use hyperbaric over here as well, I've been told about that as well.

So for now they are starting off with cutting away the tissue; if that doesn't

work they put the stent in; if that doesn't work we indeed still have got the

hyperbaric option as well. I don't know much about it, we haven't spoken a lot

about it yet, but indeed I know it's another possibility. Since I hope the

cutting on Jan. 7th will help me, I hope I don't need to consider other

treatments...

At the moment I am in my hospital as I need to go in for my next dilatation in

about 3 hours. Earlier this morning I went to see my nurse practitioner. I had

my tube infected again. Cause that the infection returned so quickly is that my

body responds to meds differently nowadays than in other people (because of the

completely renewed digestion system). The PPI's (Nexiums) conflicted with the

antibiotics I got. I left enough time (recommended by the pharmacist) between

the PPI's and the antibiotics, but still they had the antibiotics disfunction. I

stopped taking the PPI's 3 days before my a.b. treatment would stop and it

started to function, but of course way too short a time. So the infection

returned.

I have now been given a new a.b. treatment for 2 weeks. Should the infection

return again, I am to take these antibiotics untill the tube may be taken out.

Cause of it is a mechanical infection. It's the body's response to the tube, the

body wants to kick the thing out. So it's no bacterial infection, but a long

lasting mechanical one. Interesting, eh? My family doc was very reluctant

(understandable) concerning new antibiotics, but he hasn't got enough experience

with these type of things. So it's a good thing I can always see my nurse

practitioner (and than tell my family doctor, who is really willing to learn

from my case).

When I spoke to Carlo earlier this morning (Carlo is the n.p.) he told me they

treat me differently than the other -ectomy patients that have to deal with scar

tissue. It happens more often. I belong to the group where dilatations can give

the answer, but where indeed very many dilatations are needed. There are about

one to two hands full of people in my hospital that need about 40 or more and

I'ld belong to that group, if they didn't try something else for me now.

They decided to start other treatments on me (the cutting and perhaps stent)

since there is a huge difference between me and the other patients they have.

They have cancer, I had achalasia. the difference is that I went in to get out

with better swallowing. The cancer patients " never "   had issues with that and

therefore are less worried about their swallowing problems. I found it very good

the hospital recognised the problems the scar tissue causes in me, other than

the fysical problems. And though I just mentioned this hospital has one or two

hands full of patients like me, they do have many many -ectomy patients and my

specialist treated over 1000 already. Carlo told me they didn't start the

cutting way because they didn't see another way out, but simply as they don't

want me to have to go through this all any longer, regarding my history and

regarding my age. It's such a good feeling to be in such a caring place!!!

Hmmm, I think I'll have a walk through my hospital now...

Thank you so much for trying to find other options for me, !!!

Love,

Isabella

________________________________

From: ANGELA BAKER <kotacj@...>

achalasia

Sent: Wednesday, December 17, 2008 2:48:18 AM

Subject: Re: Re: Incisions in my post -ectomy scar tissue - TIM,

please read this too!!!

isabella- I'm sorry for the dissappoint. I'm not giving up on other

possiblities. I'm going to ask around and see if some of the docs I work with

have additional ideas. do they use much hyperbaric in europe. I've seen

gangrenous digits improve using hyperbaric. oxygen under pressure. usually

reserved for the bends after scuba diving accidents but now are finding

applications with tissue profusion and wound healing...angela

[Guest guest]

Hi Isabella

Good Luck on your Dilatation this afternoon. Boy you are going through it aren't

you. So sorry that you have a mechanical infection with the J-Tube. I have a

problem with the MRSA in the same place and understand your concern. Medics have

told me that as long as I have a foreign body through my belly I will continue

to have problems but I can deal with that. However, I have to face tomorrow and

any possible treatment myself. I will have a new J-Tube inserted (possably a

longer one with a bigger bore), have a Gastroscopy done to see what is going on

inside and to evaluate what treatment options I have and have that treatment at

the same time while sedated. Good Luck for later.

________________________________

From: Isabella Arnold <arnoldisabella@...>

achalasia

Sent: Wednesday, December 17, 2008 11:50:14 AM

Subject: Re: Re: Incisions in my post -ectomy scar tissue - TIM,

please read this too!!!

Dear ,

Thank you so much for trying to help!!!

Indeed they use hyperbaric over here as well, I've been told about that as well.

So for now they are starting off with cutting away the tissue; if that doesn't

work they put the stent in; if that doesn't work we indeed still have got the

hyperbaric option as well. I don't know much about it, we haven't spoken a lot

about it yet, but indeed I know it's another possibility. Since I hope the

cutting on Jan. 7th will help me, I hope I don't need to consider other

treatments.. .

At the moment I am in my hospital as I need to go in for my next dilatation in

about 3 hours. Earlier this morning I went to see my nurse practitioner. I had

my tube infected again. Cause that the infection returned so quickly is that my

body responds to meds differently nowadays than in other people (because of the

completely renewed digestion system). The PPI's (Nexiums) conflicted with the

antibiotics I got. I left enough time (recommended by the pharmacist) between

the PPI's and the antibiotics, but still they had the antibiotics disfunction. I

stopped taking the PPI's 3 days before my a.b. treatment would stop and it

started to function, but of course way too short a time. So the infection

returned.

I have now been given a new a.b. treatment for 2 weeks. Should the infection

return again, I am to take these antibiotics untill the tube may be taken out.

Cause of it is a mechanical infection. It's the body's response to the tube, the

body wants to kick the thing out. So it's no bacterial infection, but a long

lasting mechanical one. Interesting, eh? My family doc was very reluctant

(understandable) concerning new antibiotics, but he hasn't got enough experience

with these type of things. So it's a good thing I can always see my nurse

practitioner (and than tell my family doctor, who is really willing to learn

from my case).

When I spoke to Carlo earlier this morning (Carlo is the n.p.) he told me they

treat me differently than the other -ectomy patients that have to deal with scar

tissue. It happens more often. I belong to the group where dilatations can give

the answer, but where indeed very many dilatations are needed. There are about

one to two hands full of people in my hospital that need about 40 or more and

I'ld belong to that group, if they didn't try something else for me now..

They decided to start other treatments on me (the cutting and perhaps stent)

since there is a huge difference between me and the other patients they have.

They have cancer, I had achalasia. the difference is that I went in to get out

with better swallowing. The cancer patients " never "   had issues with that and

therefore are less worried about their swallowing problems. I found it very good

the hospital recognised the problems the scar tissue causes in me, other than

the fysical problems. And though I just mentioned this hospital has one or two

hands full of patients like me, they do have many many -ectomy patients and my

specialist treated over 1000 already. Carlo told me they didn't start the

cutting way because they didn't see another way out, but simply as they don't

want me to have to go through this all any longer, regarding my history and

regarding my age. It's such a good feeling to be in such a caring place!!!

Hmmm, I think I'll have a walk through my hospital now...

Thank you so much for trying to find other options for me, !!!

Love,

Isabella

____________ _________ _________ __

From: ANGELA BAKER <kotacj@...>

achalasia@grou ps.com

Sent: Wednesday, December 17, 2008 2:48:18 AM

Subject: Re: Re: Incisions in my post -ectomy scar tissue - TIM,

please read this too!!!

isabella- I'm sorry for the dissappoint. I'm not giving up on other

possiblities. I'm going to ask around and see if some of the docs I work with

have additional ideas. do they use much hyperbaric in europe. I've seen

gangrenous digits improve using hyperbaric. oxygen under pressure. usually

reserved for the bends after scuba diving accidents but now are finding

applications with tissue profusion and wound healing...angela

[Guest guest]

isabella- risk of infection is one of the main reasons docs didn't put a j tube

in my son. his is in his left nare. he tells me he no longer feels it. I wonder

if you would be open to this a a way to clear the infection as a short term

thing. I just can't see antibiodics taken by mouth as effective enough for you.

it would seem to me that you would be getting vancomycin iv if this infection is

recurrent. I know a tube in the nose really sucks and maybe your docs are

worried about a tube in your esopha