Re: SprayGel Hope
From: carynlruzich@comcast.net
Sun Jun 8 18:55:29 2008
Adhesions can happen to men (even though I've never known one), but the majority ARE woman. I have theorized that it has something to do with hormones. All I know is it's an overhealing process and something fuels their growth. I wished medicine cared as much about adhesions as they do cancer and diabeties.
>-------------- Original message --------------
From: tarahopkins@comcast.net (T-Hop)
Donna - adhesions do not only affect woman, they also affect men and to the same degree. If you happen to be a "person" who forms scar tissue this badly, they you end up in the cycle of surgery/pain meds/possibly feeling better for a time/bowel obstruction/surgery, etc. I, myself have been all over the country and had 15 surgeries, majority laparotomy because they also could not get in through a laparascope. The 15 doesn't count the ancillary surgeries for insertion of port-a-caths, etc. I have a doctor in NYC now. Dr. Joel Bauer---not the greatest bedside manner but works miracles with his hands.
>-------------- Original message --------------
From: krdfld@aol.com
Donna,
I wish you good luck. Your story is so familiar, I've had 24 abdominal surgeries for the removal of adhesions and their related complications. I'm in so much pain everyday it takes my life over. What are you going to have done in Germany? Who are you seeing? If you don't mind telling me. I'm desperate. I've gone from the East coast to the West coast having surgeries along the way, and they can't get in with a laproscope, they have to do the laprotomy every time. I keep hearing I'm the worst they have ever seen. I don't know what to do, HELP!!
Kathi
-----Original Message-----
From: IAS Admin (Tracy) <tracy.joslin@adhesions.org>
To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>
Sent: Mon, 2 Jun 2008 9:03 pm
Subject: SprayGel Hope
From: "Donna Johansen" <donnajohansen@telus.net>
Subject: Re: SprayGel Hope
Hi Debbie,
The more I hear from people who suffer from this the more I think all
doctors need to be tied by their noses and drug to Germany to see what is
going on there. What the hell is wrong here? I have a theory. This is for
the most part a woman's issue. It isn't so very long ago that breast cancer
wasn't taken seriously. A woman's issue.
I am scheduled for knee replacement in the summer but it has taken me a long
time and in the end I had to insist. In addition to the adhesion nightmare
I am dealing with end stage arthritis throughout my spine and knees. A
study in my area (Vancouver, BC) found that men were taken more seriously
and given their needed replacement before women were. Women were and are
made to suffer more.
Debbie, I have started writing to the local papers (no success getting them
published yet) as this needs to be heard about. We need to stand up for
others so they can get the help too. I am leaving here for Germany on the
6th of June to the great thanks of my family. It wasn't a piece of cake for
them as they had to mortgage a house. The fact they would do that for me
just makes me stand in awe of them all. But, what about those who can't do
this with family funding? I know that should I be left on my own much
longer I would go downhill. I have gone one year with very little solid
food. The nutritional drink is my buddy but most of the time I cannot even
take that. I am vomiting violently at any hour of the day and night.
Sometimes nothing comes out but the heaves go on anyway. I made rhubarb
crisp this weekend as I thought my family would enjoy it. I couldn't resist
and had a few spoonfuls. Just craving food is such a rare thing for me. I
was sick so sick that I spent the night regretting every mouthful.
All the tests have turned up negative but I wonder why I cannot have a
regular bowel movement? My doctor says "you sure have a slow bowel"!!! I
have lost over 65 lbs in one year and the barium they forced me to have is
still sitting in my bowel. That was over 6 weeks ago!
They know I have an adhesion problem as they went in to see, in March. My
adhesions have melded with my bowel, urethra, liver, and abdominal sidewall.
It was so bad that the OB_GYN wouldn't attempt it. But ever since then they
tell me I have to live with it and everything I tell them they don't
attribute it to adhesions - it's something else! The thing that really bugs
me to hell is that they won't find someone else who can do it so the work
can be paid for.
I am sorry for the long book here. Just living with this awful illness is
slow torture. I would love to be involved in helping others when I get back
on my feet. We need to put fire under the asses of the governing boards
that are not approving medical substances such as SprayGel.
More surgeons need to train in this method.
I will say good bye. Thanks for writing and all the best in your search for
truth.
Donna
-----Original Message-----
From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
IAS Admin (Tracy)
Sent: Monday, May 26, 2008 12:31 PM
To: Multiple recipients of list ADHESIONS
Subject: Spraygel Hope
From: dlbaranes44@yahoo.com (Debbie Baranes)
Subject: Spraygel Hope
I just wanted to first say thank you to all the people who repled to my
posting.Since my last post I have been back to Dr. Secken and back to
my surgeon who did my last surgery, I have also been in touch with the
capps coordinator in Florida. I had a small bowel series and it came
out negative thank God for that, no obstruction at this time.Since last
Monday I have been waking up with such pain in my back I cant move It
hurts to breath, sit, walk. I have to reach for my pain medication
before I can get ouy of bed, then I roll over and drop my feet to the
floor.Since I also have buldging disc in my lower back im not sure if
thats the problem since my GP seems to think buldging disc do not cause
pain.Well if they dont cause pain then why did I get approval for
selective nerve blockers, I hope it works, I am schedualled to get these
June 11.
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