SprayGel Hope

From: IAS Admin (tracy.joslin@adhesions.org)
Fri Jun 20 20:53:33 2008


From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of T-Hop Sent: Friday, June 06, 2008 7:13 AM To: Multiple recipients of list ADHESIONS Subject: Re: SprayGel Hope

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 Sender: "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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