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Gastro Problems

K

kramerdog

New member
This is from a frustrated CF parent. My 24 y/o son
has had only gastrointestinal problems so far, several
backups/cleanups yearly, one emergency surgery for a blockage, and a few other surgeries for gallbladder, etc.

The normal routine is that he gets a flu or virus, starts
to get dehydrated, we rush down to the hospital, and then
wait hours or days while nothing or almost nothing is done.
I am talking about several of the top CF centers in the
country - child and adult.

There seems to be no communication between the staff members; he can be told to go ahead and eat at 9 am and
at 10am be told by another doc that they are considering
surgery. It is EXTEREMELY frustrating and upsetting!!!!
Particularly because they don't like to give pain meds
because it masks sympotms, so he is often in excruciating
pain for hours.

Does anyone have any advice? I'm wondering if we should
look for a private gastoenterologist with some CF knowlege instead of going to a CF center. This last hospitalization ,at a "World Class" center was the last straw.
 
K

kramerdog

New member
This is from a frustrated CF parent. My 24 y/o son
has had only gastrointestinal problems so far, several
backups/cleanups yearly, one emergency surgery for a blockage, and a few other surgeries for gallbladder, etc.

The normal routine is that he gets a flu or virus, starts
to get dehydrated, we rush down to the hospital, and then
wait hours or days while nothing or almost nothing is done.
I am talking about several of the top CF centers in the
country - child and adult.

There seems to be no communication between the staff members; he can be told to go ahead and eat at 9 am and
at 10am be told by another doc that they are considering
surgery. It is EXTEREMELY frustrating and upsetting!!!!
Particularly because they don't like to give pain meds
because it masks sympotms, so he is often in excruciating
pain for hours.

Does anyone have any advice? I'm wondering if we should
look for a private gastoenterologist with some CF knowlege instead of going to a CF center. This last hospitalization ,at a "World Class" center was the last straw.
 
K

kramerdog

New member
This is from a frustrated CF parent. My 24 y/o son
<br />has had only gastrointestinal problems so far, several
<br />backups/cleanups yearly, one emergency surgery for a blockage, and a few other surgeries for gallbladder, etc.
<br />
<br />The normal routine is that he gets a flu or virus, starts
<br />to get dehydrated, we rush down to the hospital, and then
<br />wait hours or days while nothing or almost nothing is done.
<br />I am talking about several of the top CF centers in the
<br />country - child and adult.
<br />
<br />There seems to be no communication between the staff members; he can be told to go ahead and eat at 9 am and
<br />at 10am be told by another doc that they are considering
<br />surgery. It is EXTEREMELY frustrating and upsetting!!!!
<br />Particularly because they don't like to give pain meds
<br />because it masks sympotms, so he is often in excruciating
<br />pain for hours.
<br />
<br />Does anyone have any advice? I'm wondering if we should
<br />look for a private gastoenterologist with some CF knowlege instead of going to a CF center. This last hospitalization ,at a "World Class" center was the last straw.
 
P

Printer

Active member
There is a Gastro/CF Researcher at Beth Israel Deaconess Medical Center in Boston. He is the Dr that first connected Pancreatitis with CF.

His name is Steve Freedman. I would suggest that you Google him.

The phone # at BIDMC is 617-667-7000.
 
P

Printer

Active member
There is a Gastro/CF Researcher at Beth Israel Deaconess Medical Center in Boston. He is the Dr that first connected Pancreatitis with CF.

His name is Steve Freedman. I would suggest that you Google him.

The phone # at BIDMC is 617-667-7000.
 
P

Printer

Active member
There is a Gastro/CF Researcher at Beth Israel Deaconess Medical Center in Boston. He is the Dr that first connected Pancreatitis with CF.
<br />
<br />His name is Steve Freedman. I would suggest that you Google him.
<br />
<br />The phone # at BIDMC is 617-667-7000.
 
K

kramerdog

New member
Thanks for the info!! We are in Philadelphia but perhaps I
<br />can contact the doc for a recommendation. Thanks again!
 
P

Printer

Active member
It may be worth your time to come to Boston to see him. He is world reknown in Gastro/CF.
<br />
<br />Bill
 
C

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kramerdog</b></i>

This is from a frustrated CF parent. My 24 y/o son

has had only gastrointestinal problems so far, several

backups/cleanups yearly, one emergency surgery for a blockage, and a few other surgeries for gallbladder, etc.



The normal routine is that he gets a flu or virus, starts

to get dehydrated, we rush down to the hospital, and then

wait hours or days while nothing or almost nothing is done.

I am talking about several of the top CF centers in the

country - child and adult.



There seems to be no communication between the staff members; he can be told to go ahead and eat at 9 am and

at 10am be told by another doc that they are considering

surgery. It is EXTEREMELY frustrating and upsetting!!!!

Particularly because they don't like to give pain meds

because it masks sympotms, so he is often in excruciating

pain for hours.



Does anyone have any advice? I'm wondering if we should

look for a private gastoenterologist with some CF knowlege instead of going to a CF center. This last hospitalization ,at a "World Class" center was the last straw.</end quote></div>

Many CF patients, due to the sheer number of possible complications and hospital visits, have experienced awful hospital stays made worse by miscommunication. After nearly four decades of having this disease, I have learned that I have to advocate for myself - on every level - especially in the hospital, where you never get an answer unless you've asked fifty times.

I'm seen at one of "the best" hospitals in the country and have gone through the ringer just trying to get answers to the most basic questions.

I have a blog, and if you care to read about some of my experiences as a CF patient (it's not a CF blog per se, but my CF plays a huge role in my life), you might get some ideas on how to navigate through the murky waters.

Here's the address - and I've defaulted to select the category "HEALTH" so you can see a bunch of posts on health topics: <a target=_blank class=ftalternatingbarlinklarge href="http://sproutingdaisies.wordpress.com/category/medical/
">http://sproutingdaisies.wordpr...com/category/medical/
</a>
I hope that my experiences will somehow help you in getting around all the madness. Good luck and if you have any specific questions, ask away. Chances are, some of us will have some sort of answer for you.
 
C

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kramerdog</b></i>

This is from a frustrated CF parent. My 24 y/o son

has had only gastrointestinal problems so far, several

backups/cleanups yearly, one emergency surgery for a blockage, and a few other surgeries for gallbladder, etc.



The normal routine is that he gets a flu or virus, starts

to get dehydrated, we rush down to the hospital, and then

wait hours or days while nothing or almost nothing is done.

I am talking about several of the top CF centers in the

country - child and adult.



There seems to be no communication between the staff members; he can be told to go ahead and eat at 9 am and

at 10am be told by another doc that they are considering

surgery. It is EXTEREMELY frustrating and upsetting!!!!

Particularly because they don't like to give pain meds

because it masks sympotms, so he is often in excruciating

pain for hours.



Does anyone have any advice? I'm wondering if we should

look for a private gastoenterologist with some CF knowlege instead of going to a CF center. This last hospitalization ,at a "World Class" center was the last straw.</end quote>

Many CF patients, due to the sheer number of possible complications and hospital visits, have experienced awful hospital stays made worse by miscommunication. After nearly four decades of having this disease, I have learned that I have to advocate for myself - on every level - especially in the hospital, where you never get an answer unless you've asked fifty times.

I'm seen at one of "the best" hospitals in the country and have gone through the ringer just trying to get answers to the most basic questions.

I have a blog, and if you care to read about some of my experiences as a CF patient (it's not a CF blog per se, but my CF plays a huge role in my life), you might get some ideas on how to navigate through the murky waters.

Here's the address - and I've defaulted to select the category "HEALTH" so you can see a bunch of posts on health topics: <a target=_blank class=ftalternatingbarlinklarge href="http://sproutingdaisies.wordpress.com/category/medical/
">http://sproutingdaisies.wordpr...com/category/medical/
</a>
I hope that my experiences will somehow help you in getting around all the madness. Good luck and if you have any specific questions, ask away. Chances are, some of us will have some sort of answer for you.
 
C

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kramerdog</b></i>
<br />
<br />This is from a frustrated CF parent. My 24 y/o son
<br />
<br />has had only gastrointestinal problems so far, several
<br />
<br />backups/cleanups yearly, one emergency surgery for a blockage, and a few other surgeries for gallbladder, etc.
<br />
<br />
<br />
<br />The normal routine is that he gets a flu or virus, starts
<br />
<br />to get dehydrated, we rush down to the hospital, and then
<br />
<br />wait hours or days while nothing or almost nothing is done.
<br />
<br />I am talking about several of the top CF centers in the
<br />
<br />country - child and adult.
<br />
<br />
<br />
<br />There seems to be no communication between the staff members; he can be told to go ahead and eat at 9 am and
<br />
<br />at 10am be told by another doc that they are considering
<br />
<br />surgery. It is EXTEREMELY frustrating and upsetting!!!!
<br />
<br />Particularly because they don't like to give pain meds
<br />
<br />because it masks sympotms, so he is often in excruciating
<br />
<br />pain for hours.
<br />
<br />
<br />
<br />Does anyone have any advice? I'm wondering if we should
<br />
<br />look for a private gastoenterologist with some CF knowlege instead of going to a CF center. This last hospitalization ,at a "World Class" center was the last straw.</end quote>
<br />
<br />Many CF patients, due to the sheer number of possible complications and hospital visits, have experienced awful hospital stays made worse by miscommunication. After nearly four decades of having this disease, I have learned that I have to advocate for myself - on every level - especially in the hospital, where you never get an answer unless you've asked fifty times.
<br />
<br />I'm seen at one of "the best" hospitals in the country and have gone through the ringer just trying to get answers to the most basic questions.
<br />
<br />I have a blog, and if you care to read about some of my experiences as a CF patient (it's not a CF blog per se, but my CF plays a huge role in my life), you might get some ideas on how to navigate through the murky waters.
<br />
<br />Here's the address - and I've defaulted to select the category "HEALTH" so you can see a bunch of posts on health topics: <a target=_blank class=ftalternatingbarlinklarge href="http://sproutingdaisies.wordpress.com/category/medical/
">http://sproutingdaisies.wordpr...com/category/medical/
</a><br />
<br />I hope that my experiences will somehow help you in getting around all the madness. Good luck and if you have any specific questions, ask away. Chances are, some of us will have some sort of answer for you.
 
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