Hi there, I just found you all today, and after reading so many emails
regarding pain, surgeries, and adhesions, I can honestly say I never
realised just how many people share so many of my problems. It's really
hard reading all these stories, because there is so much pain , and not
half as much understanding from many of the Surgeons that have been
generous enough to give us this lifestyle and throw in all the
complications that go with it, then have the nerve to tell many it is
all in your head, or it's not that bad, ect. I feel your pain and share
so much of what many of you have gone through, and it's places and
people like you that make all the difference to me. My family have been
great, but how can they understand what I'm going through and feeling ,
when even I can't at times. I am very fortunate now because I finally
found a Specialist who not only believes in me, but who has helped put
me back together as best he could, so that I can have some type of life.
After 20 surgeries , many I didn't think I was going to make it through,
and many where the doctor did only enough to fix part of my problems ,
but left my insides in such a mess that just kept snowballing into more
problems for me. One surgeon had to cancel the surgery he was
attempting to preform because I had over 50 adhesions to my bowels
alone, and they were stuck to my bladder, pelvis and vaginal vault. So
he spent 4 hours trying to undo as many as he could, the problem there
was that adhesions come back and some worse that they were. After a
hysterectomy, then radiation, another major surgery to remove what was
left after the radiation had fried my insides together, ilea conduit,
two bladder repairs, stints, two hernias, and finally a koch pouch, and
many other surgeries I am finally as good as it will ever get. I have
pain from the time I get up till I go to bed, nausea, trouble eating and
finding food that will stay down,and a koch pouch that I have to empty
every 3 hours, even through the night. I still consider myself lucky,
and after reading so many of your stories , tell myself there are worse
off than me. My motto is 365, one day at a time. There is not a day
that goes by that I don't thank god that I am still here and seeing my
sons grow up, and enjoying my grandson, who makes me feel so glad to be
in his life and see him grow. So many of the stories I read had me
sitting here crying over all the pain and lives that have been altered
forever, and when I hear someone complaining over the littlest thing, I
feel like telling them to be thankful that's all they have to deal with.
I sit here happy that my koch pouch was successfull , and that I found a
doctor who was determined to give me back my life , and though he cannot
fix all the mistakes and screw ups by many other surgeons, he also does
not make excuses for them either. In the end I cannot do any bending,
lifting, or stretching of any kind, and my medication consists of
Demerol, Ms Contin, Statex, Lectopam, Mobicox, Imovane & the Estraderm
Patch . I will have to have more surgeries down the road, even though
my doctor says that it will be very dangerous for me , due to all the
mesh that I have inside of me makes it almost impossible for them to
open me up. Anyways I just needed to get this off my chest, and if I
can help anyone else in any way, please don't hesitate to email me . I
think I will sleep a little better tonight because I know someone
besides me knows what I am going through and actually understands too.
Thank you again for that.
Donna Nash