Re: Will this never end?

Wed Aug 6 11:50:47 2008

I wished Dr. Oz would tackle this issue as well. Not too sure if we'll get a response from Oprah either. I did write her a couple years back about people living with ostomies and never heard back. Of all the talk shows out there, no one has ever had a show on ostomates. I've had one for 30 years and I know I've done my share of educating the public, but I know there are millions of ostomates out there and most people know nothing about them. I do realize they are doing less and less of them today, but none the less, we're still out here and it's like one big secret that no one talks about.

I have always wanted to write a book. Maybe this is what I need to write about. Although I've had more than a few medical crisis over the years (enchephalitis as a child, ulcerative colitis as a teenager, a diseased gall bladder at 22, then the adhesions started. At 41 a total hysterectomy with so many adhesions, the gyno almost couldn't do the surgery) adhesions have been the constant.

I write alot professionally and writing a book has long been my dream retirement plan. Maybe it's something I should seriously consider at this point in my life. I know I would need to do a lot of research beyond my own experience. It's something for me to think about.


>-------------- Original message --------------
From: (Sandi Hoover)

I too would like to see more national coverage of this disease. It is far more serious than what the medical community takes it for. I have written to Oprah and Dr. Phil but have never heard any response. I wish Dr. Oz would give it some attention. There are some really good doctors who are not afraid of tackling these adhesions however it is very cost prohibitive for those people who don't have insurance or who do have insurance that won't support out of the network treatment. I have suffered with adhesions for 21 years now. I have had one 3 and one half hour surgery to free them up some 10 years ago...they are back full force and now I try deep tissue massage as well as really watch my diet...I do best with taking lots of probiotics and soft foods...I always end up a mess when I go off the wagon to eat normally.

>-------------- Original message --------------
From: Start composing a letter to Oprah with a brief history about yourself and the lack of medical help and education. I will try to get an address or e-mail we can send them to and let everyone know what it is. Kathi

-----Original Message----- From: To: Multiple recipients of list ADHESIONS <> Sent: Sun, 27 Jul 2008 6:53 pm Subject: Re: Will this never end?

I am in. Let me know what to do!!!

-----Original Message----- From: To: Multiple recipients of list ADHESIONS <> Sent: Sat, 26 Jul 2008 10:24 pm Subject: Re: Will this never end?

I think that's a great idea! I'll write Oprah because it's going to take a high profile celeb or show to do this disorder justice. How about 20/20 or one those national news shows.

Until I found this site a few months ago, I really thought I was pretty much alone. My mother had a lot of problems with adhesions from several bowel surgeries, but I thought that may just have been hereditary.

Now I know it's a much bigger issue and the number of people suffering is unacceptable. Not only does our quality of life suck, but it hurts our loved ones, make life so much harder for us to function in the world and medicine has little to no help for us. And I think it's time something be done about it.

So, I'll do my part and write Oprah and maybe look into ABC or NBC network news shows and write them as well. I'll reference this support group and hopefully more of you will follow through and do the same.

When I was younger (I'm 47 now and have been suffering since my teens) the only reason I even knew anything about adhesions was because my mother suffered from them and had many surgeries just for adhesions. But if you've never known anyone who has suffered from these horrible buggers you would think you're dying at times. I knew all about them and I still get feeling that way when they get really bad.

So let's do! Let's start a campaign to get this disorder recognized and who knows maybe even make change in the medical community. I, too, have had ignorant doctors tell me adhesions don't cause pain and it was all I could do to restrain myself. Obviously these doctors shouldn't be practicing this kind of medicine.

I am also disturbed by the medical communities laze farre attitude about adhesions. I know for a fact that treatment for adhesions is extremely costly and not as rare as one would think. So why doesn't medicine recognize the problem and put some research dollars into finding a way to halt their growth? If we really want to control our medical costs, coming up with an effective adhesion treatment would save 100's of millions of dollars a year.

I'll work on a letter in the next week and if anyone is interested, I'll send them my letter. I'm sure there's a whole lot more we can do and like Kathi said, we need to do it together to be heard.

Let me know what you think.


>-------------- Original message --------------
From: I've tried writing to Oprah and Tyra to get our messaged for help out there. Maybe if we all wrote to them they'd take us seriously. Kathi

-----Original Message----- From: IAS Admin (Tracy) <> To: Multiple recipients of list ADHESIONS <> Sent: Mon, 21 Jul 2008 9:27 pm Subject: Will this never end?

From: [] On Behalf Of Sent: Friday, July 11, 2008 9:51 PM Subject: Re: Will this never end?

Krys, Yes it's very good to share and I'm sure that I'm not the only one that knows exactly how you feel. I've been fighting this hell myself off and on now for the last 30 years and I've heard I'm a hypochondriac, it's all in my head and I can't tell you how many times I've been told that adhesions don't cause pain. I believe it's time for everyone who's going through this should write to Oprah so we can let the world know about adhesions and how they can make our live's a living hell and maybe just maybe get the medical community to do more research to find a solution so that all who suffer from ARD can have a better quality of life. Wendy

Subj: Will this never end? Date: 7/3/2008 4:44:58 P.M. Central Daylight Time To: Sent on: From: (Krys Chamberlain) Subject: Will this never end?

I have just had a wonderful holiday in Cyprus but the journey home was like the trip from hell. I thought, after 7 years that I understood what triggered an attack and have avoided those foods. I am beginning to think that food has nothing to do with it because I get the attacks regardless of my diet. The day before we were due to return home was uneventful. Went out for a meal and all I had was a mushroom starter. Harmless enough you would think but the following day I got the familiar gripy pains. I had to endure 3 hours at the airport and then a 5+ hour flight with the pains. My doctor has prescribed anti spasmodics, analgesia, anti-depressants and anti emetics. Nothing works and I wonder if life is worth it with a future of agonising pains to look forward to every day. I sometimes think that the only light at the end of the tunnel is that the pains don't last forever and I do get a break from them.Sorry if this sounds like a self pitying rant but I know you will all understand what I am feeling and it's good to share, isn't it?


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