Re: New to forum
From: Ms Lee (leenoga@cfl.rr.com)
Mon May 1 21:46:40 2006
God Bless you Stephanie,
Your right and a big hug welcome! You have NO idea how many people here
understand what you are going thru. You are not alone.
If you are financially resourced there are surgeons outside of the US
who can use adhesion barrier products that have been successful for
some, not all.
If you are like most of us who cannot come up with 10-15K, I would
suggest you get a referral to a pain management clinic or talk to your
Doctors about pain medicine to take the edge off. You sound exhausted
and beat down, and we all get into that space.
Doctors do not like to do surgery on us because the risks are high and
you really do not want surgery because the problems will return. Surgery
causes adhesions, and adhesions warrant surgery and the cycle has to be
stopped or you have to be cured or try to be cured so you do not form
adhesions [out of the USA surgery.
Did your Surgeon or your Doctors do any tests during your problems? Even
if they do not do surgery, your pain may be something other than
adhesions. The problem with us adhesion folks is that it is the first
thing the Doc's want to diagnose our complaints with. Yes, we may have
adhesions but we may also have other things brewing that do warrant an
investigation.
You may have partial bowel obstructions, if you do then you may need to
change what foods you eat [low residue, low fiber] your not knowing what
it could be does not help you make life style adjustments. We do not
realize it but we all exacerbate our own condition out of ignorance. If
you start to identify what sets your pain off, you can adjust and try to
minimize the irritation.
You could have other issues as well...
If I were you, I would want a full diagnostic work up, if all the tests
come back negative I would then accept the adhesion diagnosis. I would
also consider some pain management so you can take the edge off. Pain
management gave me my life back and made a world of difference.
DO not expect open arms and kissies from the medical teams.....unless
you have a honey pot Doctor..LOL...for some reason the Doctors have a
hard time putting us on pain management. I would just ask my family
practice Doc for a referral to a pain management clinic if he is not
willing to write. Your adhesions are a long term problem and family
practice Docs do not like handling pain management long term...it can be
way out of their comfort zone...
This is all merely my opinion, every one is different...you sound
absolutely exhausted. DO NOT give up, there is quality of life for
people like us where surgery is NOT an option.....
This DOES NOT all fall on medicine. YOU have to work just as hard to
cope with your reality [inoperable] as you expect them to manage your
disease and pain...it is a 50/50 working relationship...
My life changed once I accepted my disease and stopped hunting for some
miracle Doctor to make this all go away. Reality is I am inoperable, no
surgery unless life or death.
I channeled that strive for solution into total acceptance. It was
medicine that decided on pain management so that I would be as active as
I could be without constant needless suffering for doing so. That was
the deal I made with my Doctors.
That was the beginning of my path towards acceptance.
That was when I took control of my life back
We are here for you!
Much Love,
MsLee
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