-----Original Message----- From: krdfld@aol.com To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Tue, 8 Jul 2008 1:23 pm Subject: Re: Fentanyl Patches and Actiq - Some questions
Caryn, I'm not looking to argue with you. All I ask is you watch what you post. Maybe you don't realize the way you came across. Kathi
-----Original Message----- From: carynlruzich@comcast.net To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Tue, 8 Jul 2008 1:17 pm Subject: Re: Fentanyl Patches and Actiq - Some questions
Kathi,
?
How many times do I have to say I DO NOT HOLD ANYTHING AGAINST PEOPLE WHO FIND RELIEF FROM NARCOTICS NOR HAVE I DISCOURAGED THEIR USE.? THEY SIMPLY DO NOT WORK FOR EVERYONE.?
?
My experience is different because of the ileostomy and a motility disorder and excessive adhesions.? I have been to the University of Michigan, Mayo Clinic and Cleveland Clinic and there has been no effective treatment for my motility disorder.? The only option they have is to cut the bottom of my stomach open so the contents enter directly into the small intestine.? That is not a real option.
?
This forum is supposed to be for people to talk about their experiences and share them with others.? If you are going to comment on posting, be sure to read carefully what someone has written and stop reading more into it then there is.? I NEVER said people who use narcotics are bad.? I said they do not work for me and many like me.? Re-read my postings and respond to what I said, not to what you think I said.
?
Caryn
?
?
>-------------- Original message --------------
From: krdfld@aol.com
Caryn,
It's great if you want to suggest something that has worked for you, but please don't discourage something that work for many or makes life tolerable. Your not the only seasoned veteran of adhesions out there, I myself have 22yrs of this with 24 surgeries. Adhesions?alone may cause motility problems which many manage by medicines also. Please just be carefully about how you come across, people on narcotics get treated like junkies by people who don't understand adhesions, they don't need to be attacked by someone in the circle of pain.
Kathi
-----Original Message----- From: carynlruzich@comcast.net To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Tue, 8 Jul 2008 1:49 am Subject: Re: Fentanyl Patches and Actiq - Some questions
With an ileostomy AND adhesions AND a motility disorder,?the intestional tract can easily be sedated by narcotics.? Narcotics affect the function of the GI tract, even for people without adhesions.? That's why they usually won't let people leave the hospital before they have a bowel movement.? Anesthetics and narcotics have similar affects on the body; they slow everything down.?
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So, for me, narcotics will shut down my digestive track in a matter of days.? And to set the record straight, once and for all, I never said narcotics were bad.? What I said was, for me, and many like me, they cause more problems than they help.? I have tried many narcotics over the years and they all have this affect on ME.? I can and do use them post-op with great relief, but am not able to tolerate them for more than a week without problems.? I did a fentyl patch a few months back and I thought I was going to die within two days.
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If they work for you, that's wonderful.? I am not anti-drug.? If something helps you, use it.? All I know is that it is common for narcotics to require higher and higher doses the longer you are on them.? If you don't experience the slowing down of the GI tract, you're one of the lucky ones.
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I have suffered from adhesions for over 30 years, so I am a seasoned veteran and I know the hell they cause.? The ileostomy, which I have had for 30 years is my lifeline.? And living with an ileostomy comes with a price.? Some medications aren't? even properly adsorbed; they actually come out in my pouch in the same form they went down my throat.
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If you can manage your pain with narcotics you are one of the lucky ones.? Also, a lot of doctors, especially in the metro detroit area will not prescribe narcotics for long term use.? Even the pain clinics won't.?
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My only hope is that they find an effective treatment for this hideous disorder in my lifetime.? And may God Bless all of us who suffer.
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Caryn
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>-------------- Original message --------------
From: "IAS Admin (Tracy)" <tracy.joslin@adhesions.org>
>
> From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
> rjtucker@peoplepc.com
> Sent: Sunday, June 22, 2008 7:24 PM
>
> Subject: Fentanyl Patches and Actiq - Some questions
>
> I'm curious. What does an ileostomy have to do with tolerance of narcotics?
> I had an ileostomy for over a year before I was reconnected and was on
> serious opioid and other narcotic pain control during the whole time and
> beyond. Is this something that is specific only to you? I sure wish the
>! ; baths I take would do for me what they do for you!!!!
> Reba
>
> -------Original Message-------
>
> From: IAS Admin \(Tracy\)Date: 6/20/2008 6:58! :28 PM
> To: Multiple recipients of list ADHESIONS
> Subject: Fentanyl Patches and Actiq - Some questions
>
> From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
> carynlruzich@comcast.net
> Sent: Wednesday, June 04, 2008 9:30 PM
> To: Multiple recipients of list ADHESIONS
> Subject: Re: Fentanyl Patches and Actiq - Some questions
>
> You absolutely develop a tolerance to medication over time. That's the
> problem with narcotics. Once you start on them, you have to continue to
> increase the dose if you stay on them any length of time. Narcotics are not
>! ; a lon g-term fix. They are a short term treatment option or an end of life
> thing.
>
> I can't tolerate narcotics for any length of time due to an ileostomy, so I
> use heating pads or warm baths or hot tubs. Floating in my pool also can
> relieve my pain. The act of stretching your ! insides out and soaking in
> water seem to help me as much as pain medicines. I also can't wear form
> fitting clothes. My pants or jeans have to be very loose, nothing tight
> around my waist. I even cut the band on nylons when I have to wear them.
> My underwear are a size or two bigger than I need. Everything I wear has to
> be loose. Lucky for me I work at home and don't have to get dressed
> everyday. I also wear alot of casual dresses.
>
> Best of luck to you,
>
> Caryn
>
> > Sender: DWRon@aol.com (Ron/Barbara Paul)
> > ! Subject : Fentanyl Patches and Actiq - Some questions
> >
> > Wanted to know how high a dose of the Fentanyl patch and Actiq can be
> > safely given to someone who suffers from tugging pains. Does the body
> > develop a tolerance over time?
> >
>
&! gt;
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