I was thrilled to find your organization on the internet. I just entered "adhesions" and there you were. Helen--you sent valuable information to me. Bev-- you contacted me and referred me to Pam since you were traveling to Germany. I feel that you are telling my story. I have been an LPN since 1975 (working as a secretary now, less stress), but I feel I have enough medical knowledge to make an informed decision about what kind of surgery I need and who should do it. After reading about your experiences as well as checking out other sites for info, I am very confident in Dr. Reich and Dr. Redan. I have had abdominal pain off and on since I was 15 years old until finally at 40 years old my appendix ruptured. I had heard over the years after many tests and laparoscopies that I needed counseling, there is nothing wrong with you, etc. After the appendectomy, more adhesions formed until causing extreme pain this year. Although I was told it was a tumor, turned out to be adhesions causing a cyst of fluid.
Bev, I love your sense of humor. I am the same type of personality. Even through all of the terrible things you go through, you see the humor in some situations. The hard part is trying to live day to day when you feel like crying because you go to sleep and wake up feeling the same--in pain, nauseated, just not yourself and not able to do all of the activities you used to do.
Thank you so much for sharing your experiences and information with me. I have to wait at least 1 more month to heal from this surgery before Dr. Redan can operate.
I will continue to check the message boards. Knowledge is power.
At Thu, 21 Sep 2000, Helen Dynda wrote:
>At Thu, 21 Sep 2000, Bernie and Beverly Doucette wrote:
>I had surgery under Dr. Reich on April 22nd, 1999. I am doing
>wonderful. It took about four months before I actually started to gain
>energy back and have the surgical pain completely subside ( and you can
>bet that during that four months, I was SURE my surgery had been a
>failure!!! ) BUT it was not!
>Even though I do experience a dull ache in my lower right quadrant, it
>is not something I even pay attention to! I am NOT on any medications, I
>can do EVERYTHING that I want to do, I DO NOT do sit ups, or run...but I
>don't want to... and I am 50 years old, so why the heck should I, if I
>don't want to!! My goodness, I lost five years of my life to this
>disease and that was only the time lapse between my adhesiolysis of 1995
>and this one in 1999...I have been battling ARD for 14 years total and
>too darn many surgeries!
>What I CAN do now is touch my toes, sit in a chair for over 10 minutes,
>ride in a car, I can actually hop in and out of our van, get in and out
>of bed and the bathtub, go shopping alone, eat in a restaurant, dance,
>eat " normal "...AND even nasty fatty foods, have Bowel movements...get
>up at 6am...go to bed at 10pm...sleep like a rock, as I am on the go all
>the time, that is when my husband lets me sleep!!! :-) ( Bev winking
>Now, some of those things may not sound too significant to others, nor
>to you Kathy, but to me they were all things I could NOT do for those
>five years...for those five years I lived on about 22 pills of various
>kinds per day. Were they prescribed that way, no, but due to my pain
>levels I took them when I needed them, and over a five years period of
>taking pills like that you tend to burn out your esophagus and stomach
>lining, thus you begin to build what is meant by the " Related " in
>Adhesion Related Disease!!
>I added GERD ( gastroesophageal reflux disease ) to my already growing
>number of diagnosis's. I started to show signs of liver and kidney
>toxicity due to the overwhelming amount of medications flowing through
>my system...but so what, with no indications of any medical intervention
>for me for my ARD, what difference did it make how I would die
>physically as I was already slowly dying inside! This is just NOW
>starting to clear up and I am off the Prilosec ( and I learned how to
>deal with GERD through the IAS support group here!! ); but this was NOT
>related to my ARD though...based on the Drs. I saw. ( Bev laughing at
>this absurdity, man IF I knew what was causing all this, why couldn't
>they see it! Talk about..well never mind! )
>Then the bowel problems started, not only the chronic pain, constant
>gnawing to sharp pains in my abdomen, but that ever present low back
>ache ( had to be a back or disk problem, the nuerologist said, I won't
>tell you what I said to her, but I never did have any tests done by her,
>you can bet!! ) ( I shudder as I think about it and this isn't too
>pleasant to be thinking back on either, maybe THAT is why ARD patients,
>who have recovered, don't do this, hmmmm!! )
>I could tell when the stool was actually trying to pass through problem
>and painful areas in my intestines ( even though I didn't know at the
>time that narrowing and very severely attached intestines all pulled out
>of whack, wrapped together like a string of wieners and dropped into a
>sack and encased in adhesions PLUS my lower right intestine was upside
>down and crossed over my entire abdomen and attached to the oposite wall
>is the best way to describe what Dr. Reich separated!! ) This is what
>was causing it at the time. I DID know there was something slowing and
>almost stopping my stool from passing through my intestines though
>without question!!! And the pain was so overwhelming that I would get
>nauseated just from trying to go to the bathroom! And to add insult to
>injury, pain medication has the side affect of constipation, ( Yup, just
>like a good marriage my friends, to have and to hold!! ) Sooo, now add
>that to stool that already has a few obstacles in the way and I can tell
>you it was nothing short of an Olympic maneuver to even have a bowel
>movement when you're living with ARD!!!!!! Once completed...I would have
>won the GOLD no doubt!!! So you start to take laxatives...then you start
>to go from constipation to loose stools...but that's ok, that's " IBS "
>Irritable Bowel Syndrome "...But this was NOT related to ARD though,
>based on the Dr's I saw. ( Bev laughing at this stupidity now, as it
>was getting pretty deep everytime I went to see my Dr.or Dr's office,
>heck, I left wondering why I even went in the first place!! )
>Then, suffer chronic pain 24 hours a day seven days a week, taking pills
>constantly, vomiting constantly, carrying a plastic bag, for obvious
>reasons, everywhere you went...IF you did happen to go out, ( which sure
>wasn't much in my case!! ) forget sleeping as even though you took five
>sleep pills and a pain pill every two hours throughout the night, you
>were never rested when the morning sun came up, and you saw it come up
>as you beat the sun up every morning due to lack of sleep from pain!
>Roll over in bed, forget it...pain! Lay on your back, forget it, sleep
>with four pillow behind you, so that the adhesions didn't pull so much
>when you moved, might offer some relief, but never for too long....so
>you're so tired all the time....but that is simply " Chronic Fatigue
>Syndrome " you know...and you know who said it too!! NOT from ARD
>though!! ( Bev laughing here!! BUT they were right on this one, it WAS
>chronic fatigue all right!!!)
>Now, before there was an International Adhesion Society, it was each man
>for himself...to figure out what was not only wrong with them, and that
>was NOT an easy task as many many Dr's as well as surgeons have told me
>that simply because you have had umpteen surgeries for adhesions, that
>doesn't mean that adhesions cause pain or even problems for that matter.
>( And one of those claims was made to me at the Mayo clinic in
>I credit my medical background and stubborness to actually saving nme
>from accepting more surgical procedures as they sure were offered every
>time I went to see a Dr. Had to be a surgical case as nothing ever
>showed up on diagnostic testings! Have to have a " look see " (
>diagnostic surgical procedure ). I stopped that fast as it didn't take
>me long to figure out that this wasn't the answer...my pain always
>returned and even greater pain levels resulted following that surgery
>that was supposed to help me...and still no reasons for that new pain.
>Always starting over...doesn't take a rocket scientist to figure out
>that, if all diagnostic testing results in negative findings, and a
>person has a history of adhesions, well, maybe it IS adhesion related
>pain and problems...and maybe not, but in my case, no surgeon was going
>to ever touch me again unless they - at the very least - KNEW about the
>word adhesion, could show knowledge in the area of adhesions and prove
>to ME that they could actually offer me something different in a surgery
>to help me...as well as offer me a real chance to get well, if that even
>existed in the world!
>And it did exist...many times as I lay on our couch suffering, I would
>say to my husband that it irritated me that NO ONE seemed to be looking
>into how to fight adhesions. It was like I was left to drift on a raft
>in a sea of no return...so alone and just waiting to die...and he would
>always answer me this way, " Honey, there has to be someone out there
>who IS doing something about adhesions. We just haven't found him,
>thats all. Something will come our way, just trust that!! "
>Once this society was formed and functioning, due to the efforts of Dr.
>David Wiseman and others, on January 1999...
>the world opened up! Cat lines, postings, conversations with others who
>suffered adhesions, my GOD we were everywhere!! Helen, Anne, Laura and I
>laugh when we talk about how we thought we were the only ones who
>suffered with adhesions, this rare disorder...elusive disease...and when
>I say " only ones " I mean we thought that each of us was the only one
>with this disease...then there were four, then five, then a hundred and
>now thousands...talk about choosing the most fitting introduction for
>this society..." You are Not Alone " !
>Then a name popped up, a surgeon who WAS trying to figure these
>adhesions out! A surgeon who WAS trying special surgical techniques to
>help us...a surgeon who DID actually understand and actually " think "
>like an adhesion! And a surgeon who in fact could offer me the best
>chance for a RECOVERY from an adhesiolysis - by NOT suffering reforming
>attached adhesions after the surgery. Too good to be true? Well, all I
>can say is...this has been the longest period of time I have gone
>without that 'ol familiar pain starting up again, and I take each day at
>a time, little by little my fears are going away, I am starting to be
>filled with real thoughts that I am cured, I enjoy life to the fullest
>and maybe, just maybe...that most precious surgeon, my dearest Dr. Harry
>Reich..did the job the right way!
>I am off now to go get groceries, and then bike riding with my husband
>after we go out to dinner with our daughter...and we are first time
>grandparents, so I'm going shopping all afternoon for baby Jacob...BUT I
>must add that Dr. Reich cannot do everything with his adhesiolysis. You
>see, just before my surgery with Dr. Reich, my husband asked him if he
>thought I would be able to cook and bake following my adhesiolysis with
>him. Dr. Reich said he couldn't see a reason why I couldn't cook or
>bake...and my husband was so happy, as I had never been able to cook or
>bake BEFORE I had adhesions...so my husband thought Dr. Reich was more
>of a GOD then I did...and I sure did think that and I still do.
>Dr. Reich...you're my hero! May you and Dr. Redan continue to touch
>these lives as you have touched mine...let no man put under what GOD has
>joined together!! The Dr's to watch for are: Dr. Reich, Dr. Redan, Dr.
>Korell and Dr. Semertzides - as these surgeons have shown a knowledge
>that is unsurpassed by any others when it comes to ARD. And many, many
>people are a walking testament to what these Drs. will do for adhesion
>sufferers through their surgery!
>So, you see Kathy, you now have hope, a path in which to follow, and
>most importantly a chance for recovery, and I AM a true testament of all
>that my dear!!
>In friendship and peace
>>----- Original Message -----
>From: Kathy L. <email@example.com>
>To: Multiple recipients of list ADHESIONS <firstname.lastname@example.org>
>Sent: Wednesday, September 20, 2000 10:41 PM
>Subject: Dr. R and R
>Thank you ladies for giving positive feedback about these two doctors. I
>am in the process of trying to have surgery by these doctors in October
>or November and it is good to see that there have been successes. I am
>not naive enought to think that all of my problems will be solved, but I
>do think that this surgery will take away the pain that is unbearable;
>the pain that keeps me from functioning each day and enjoying life. No
>one is going to feel 100% everyday, but we all want some sense of a
>You are all wonderful, caring people, thanks again!