edited by Bill Olson

Bev's Story

My name is Beverly J. Doucette of Marinette, Wisconsin.

I suffer from a disease called Adhesion Related Disease (ARD).  I have been instrumental in starting the International Adhesion Society with Dr. David Wiseman, Ph.D,. of Dallas, Texas -- and a woman from Minnesota, who also suffers with ARD.  Please familiarize yourself with this disease by going to: http://www.adhesions.org.  Although there is no known cure -- nor even an effective treatment for ARD -- I did undergo surgery in New York City on April 22, 1999, in an attempt to have my attached internal organs separated -- with the hope that surgery would offer me the only chance to survive this disease.  To date I have been able to live a normal life, instead of being totally incapacitated by ARD after having suffered with it for 14 years!

Since then, I have been able to volunteer as an IAS outreach worker, and I have been instrumental in assisting many other ARD sufferers to find this same surgeon; because he is the only surgeon in the USA with the skill needed to separate attached organs -- with any hope of keeping them separated!!  He has offered me the chance to experience life once again.

With the exception of two people, all my communications and assistance has been through the use of the Internet.  I have never met any of those I have assisted. 

The majority of those I assist are located within the United States; but I also assist people in other parts of the world.  Currently I reach out to and assist ARD sufferers in securing the best standard   of care they can receive with this disease.  I also offer them education and support.  In addition to the United States, I have been effective in helping people in Ukraine, Australia, England and Canada.

My personal fight with ARD:

Thank-you Helen, Anne, Laura and everyone else who has had the courage to reach out and touch the lives of fellow sufferers of adhesion-related disease (ARD).  Let's build this thing!  Let's pray for strength, let’s pray that progress in treating ARD will give others, who suffer as we have, another chance at life!!  I WAS dying as I lay on my couch.  I was not able to eat.  I vomited all the time.  And last September I became intolerant to ALL of my medications.  I couldn't have a regular bowel movement without the use of laxatives.  I couldn't sit for more than ten minutes without being in excruciating pain. 

In April of 1999 I went outside only two times... to travel to New York for surgery. I went from my bed to my couch... took pills... waited.  Oh God how I waited for 7 PM to come so that I could take my heavy dose of sleep/pain pills and go to bed again!

I remember looking outside and my husband asking me if I wanted to try to take a walk.  I was too weak and he knew that; but I said "No" because it looked like it was going to rain... it looked cloudy... not very inviting to me.  But you know what friends?  My husband said the sun WAS shining and there wasn't a cloud in the sky!  But, by the grace of God, it looked uninviting to ME!  I didn't have to suffer the reality that I was just too ill to even take a walk outside.  What a good God I have.  He didn't want to tempt me, I guess.  But I really think he didn't want to hurt me even more!  Social life... no, not interested... couldn't eat or sit anyway.  I hadn't sat at my own kitchen table for the past two years.  If and when I did eat, I reclined on the couch!  I loved my husband and three children so much, but I was ready to go because I was just so tired... just so tired... not unhappy... not unloved.  I was just ready to sleep forever; and not continue to lay and watch life go by.  Even that didn't matter anymore.  I was just sooo tired! 

What IS life if it isn't living?  What was the highest quality of life for me at that time?  What did I wish I could do to, at the very least, feel like there was some quality in my life... something to look forward to?  My wish was simply to just be able to get up in the morning and move about.  No vomiting... not a lot of pills... to be able to eat something.  And now I have this… and much more!  Now I am able to do almost anything a "normal" person can do!  Even though I had lost five years of my life, I couldn't be any happier with the life I have now!!

I can eat and eat and eat... unfortunately.  I include that here in that I am lacking the self-control needed to NOT enjoy food so much now!!!  Poor me, huh!!!  NO CHEESE; because cheese is so constipating!  I will forever be afraid to eat cheese.  And I live in the dairy state, WISCONSIN!!  So I won't be doing any commercials, I suppose!!

The other day I mentioned to my husband how bright the sun was shining -- as we were preparing to take a drive -- with ME sitting up in the FRONT seat... not laying in he back seat with pillows!! WOW!!  Now that IS life!!! 

I notice all the little things now; but to me they are the big things.  I went to the grocery store and shopped last week... alone!  Two weeks ago my husband said he was getting tired and was going up to bed.  I said, "Ok, honey, I'll be up in a bit... when I finish puttsing here."  He stopped and looked at me.  Then he looked at the clock.  It was 10 PM!!  We both started to laugh!  HE was going to bed, and I was staying up!  Then we hugged... and I started to cry.  I mean REALLY cry!!  You see, I WAS STAYING UP!!!  That's all... something so simple; but to me it meant LIFE! 

I want to enjoy the time I've been given. 

Please offer support, educate your selves, share your stories -- anything you can do to reach out and give hope and a chance for LIFE for all adhesion sufferers... for all who suffer pain for whatever the reason.  For God's sake, if for no other reason, do it for yourselves!  We now have our first grandchild, our little Jacob!  Not only can I think about traveling to visit him, but I can cuddle him for hours, walk him, rock him.  And I can plan for a future of enjoying everything a grandma wants to do with her first grandchild!!  I have that now!!  It has been a year and a half since my surgery.  Will I continue to be an adhesion survivor?  By November I will know the answer.  For now, I'll simply enjoy what I have been given and take each day ONE AT A TIME!

Update: January 2002:

Having been cued to the fact that the "Hospital Consent to Procedure and Operation" form states that all complications of the procedure must be fully explained to the patient prior to the procedure being completed on the patient, 99 percent of ARD sufferers we are aware of did NOT have post surgical adhesions discussed with them, nor had they ever heard the word adhesions and non were offered an alternative method of medical intervention prior to any of their respective surgeries, me included!

GOD BLESS EACH ONE OF YOU!

Bev

Robin's Story

My first C-section started my adhesions in Oct. 1983. But I didn't know what it was then.

I had another C-section in Nov. 1984.  In August of 1985, I had laparoscopic surgery. They found and removed scar tissue.  In July 1987, I had my 3rd C-section, had my appendix removed and my tubes tied.  At that time, the doctor said that I had a lot of adhesions. 

In early 1993, I began having pain.   Tests revealed I had a cyst on my ovary, and I was scheduled for laparoscopic surgery, but the day I went in to do the paper work, the doctor told me I looked too good for surgery, but come back if I had any more pain.

I was back the next week and the week after that until he told me I was a woman and I should expect to have pain.  I lived in pain for more than a year, having tests to rule out everything!

Finally another doctor did a total hysterectomy in 1995.  It took almost a year to recover, but I still had some pain.  I just lived with it as long as I could, then I saw different doctors and had a ton more tests done.  The doctors thought it was all in my head, but one agreed to go in laparoscopically to "see" what was going on. 

He opened me up and found a ball of adhesions the size of a large orange.

The doctor came to see me in my hospital bed and said, "Well, it wasn't all in your head; there really was something there."

My pain was greatly reduced after that surgery, but it was still there.  Of course I went to a different doctor that did more tests! 

In June I found a wonderful caring doctor that believed me right away when I said I thought it was scar tissue.  Three days later he did laparoscopic surgery to remove the scar tissue. 

The surgery took two and a half hours, and I was pain free for 3 months. 

What a wonderful time. 

In late Sept. 1999, my pain returned. 

I have been trying to find a doctor to help me, but there doesn't seem to be one that thinks I am a good candidate for surgery, they just want to treat me with pain meds.  But now my primary care doctor thinks I am addicted to pain meds.

I thank God for my husband and kids – for all of their help and support.  They have taken over all of my chores since I can’t do much any more.

I am a patient of doctor Korell in Germany.  I had my first surgery with him on November 20, 2000.  I had a lot of adhesions, and he spent an hour and a half removing them.  My second laparoscopy was on November 27, 2000.  I had 50 percent adhesion return.  He was very confident that I would only have about 15-30 percent return after the 2nd surgery.  I still had a little pain, but nothing like I had before.  Most days, I didn’t take any meds for the pain.  I felt I had a new life. 

After four and a half months, I started having more pain.  Eight months later, I was almost back to the same amount of pain I had before my trip to Germany.  I found a new doctor that was willing to do surgery locally, but he wanted to open me up.  I was having trouble sleeping and trouble with my bladder, all from the adhesions.  It was a daily, sometimes hourly fight to live without pain. 

I had open abdominal surgery on August 15, 2001.  The doctor was certain that this would be my last surgery for adhesions.  But five months later, I am in severe pain again.  I am frustrated.  This is not the life I intended on having.  At this time, I am trying to raise the money to return to Germany for surgery.  I have a letter into my insurance company, hoping, praying that they will cover surgery in Germany. 

I have decided that I will start raising money for surgery in Germany.  I am determined to return.  I don't care how long it takes to get there.  I feel that doctor Korell is my only hope of becoming adhesion free and pain free. 

My love always,           

Robin