This afternoon I read Karla's Story - from the adhesions quilt

From: Wally (wallamara@hotmail.com)
Tue Dec 11 00:04:38 2001


This afternoon I sat down to read Karla’s story. There wasn’t a lot of personal stuff in there, but enough for me to understand the emotional and physical pain this woman has had to endure over most of her adult life.

This is the story of a life that could have belonged to anyone of us who has agreed to have surgery, trusting that the medical profession knows best, and always has our best interest at heart.

We have been brought up to respect the medical profession. After all, they have spent years at university and as interns in major hospitals gaining important experience to help them become the specialists we can trust as knowing how best to deal with illness and disease.

We have become “conditioned” into believing these professionals have high standards of ethics and morals, when they diagnose our illnesses, give us their learned opinions and ensure us they have the necessary skills and knowledge to perform the surgery they are sure will solve our problem.

So why is it that so many of us don’t feel that we have been cured? Why is it that we suffer unexplained pain that is waved away by these same medico’s as incidental, a nuisance side affect of their “successful surgery”.

If we continue to complain that things don’t feel right a number of things happen, they will pass us along to another “medical specialist” who is better equipped to deal with our new “problem” or tell us that perhaps we just need to have some “therapy sessions” or see a councillor to help us “deal” with our apparent depression which has manifested itself by having us believe that we are worse off than when we started.

Still others will send us off for a battery of tests, each appearing to back up that they have completed their task and that all is right and that we have no cause to complain. Occasionally they will look over their surgical notes and suggest that there was a “little scar tissue”, but nothing to worry about really, because everyone knows that adhesions don’t cause pain, they are simply a nuisance that sometimes makes the surgeons job more difficult or more of a “challenge” because they have to first cut their way through these adhesions to get to the organ that “appears” to be the cause of the problem and the reason for surgery.

This “little bit” of scar tissue to us is devastating, it is the beginning of a long battle to have our pain recognised as something more than something that is “just in our heads.” The fact that this scar tissue is “invisible” to all the known scans & x-rays available we can feel betrayed, we aren’t saying that surgeons and doctors are failing us on mass in duty of care, BUT that there is still an extraordinary amount of miss-information and a small amount of ignorance to just how much the pain can interfere with a patients every day life once adhesions have formed.

Those of us who have adhesions have many horrific stories to tell, relating to their treatment by doctors, surgeons and nurses after a surgery has been performed and considered to be successful. Adhesion tissue begins to form almost immediately after a surgery has been completed BUT it can take years before a patient will finally be diagnosed with suffering severe pain as a result of adhesions.

Another important point needs to be highlighted here; adhesions don’t always form as a direct result of surgery. They can be the result of a heavy bow to the abdomen such as hitting the steering wheel in a car accident or after an inflammatory type of infection or disease. In the research I have so far carried out in this subject has highlighted an interesting couple of factors. Almost 85 to 90% of adhesion sufferers appear to be female and have either been delivered of a child by caesarean section surgery, or have a previous diagnosis of endometriosis. In other instances, such as mine endometriosis is only discovered after surgery to remove my ovaries. They were completely imbedded in adhesion tissue and invisible to the naked eye. Pathology testing revealed the presence of this disease. It is quite possible and probable that the disease is still buried in areas still filled with adhesion tissue.

What appears to start out as a familiar story with Karla takes on a sinister number of twists and turns, circumstances and mistakes made that have added up to put Karla in the terrifying position she finds herself in today.

No longer for Karla is the quest for surgery simply a crusade to find relief from unbearable life altering pain, it has become a matter of life and death. Karla has come to crossroads in her lifetime on a number of occasions already, each time placing her in another situation where the medical treatment she received put her closer to the collision course she knows she is now on.

Karla has accepted that she is closer now to death rather than life and has made her peace with God, however there is one link that keeps her fighting until she gets to that final collision point. It is her precious only child, and her two surviving grand daughters. It is for them, that Karla clings to life by her fingernails.

After years of not knowing enough about her own medical history, and not questioning why at the age of 31 she required a hysterectomy, simply trusting that her doctors knew best. As she again trusted that her doctor did his best for her when she woke to find that she no longer had a bladder but would live the rest of her life with a urostomy. Just recently she discovered that her bladder had been removed because it was encapsulated in adhesions, and if these had been removed, her bladder could possibly have recovered, and didn’t really need to be removed.

Karla’s story is at the extreme end, a woman who has endured so many surgeries; she has lost count, and wiped the memory of many out of her mind. Karla’s story could end up being ours too, any of us who suffer with adhesions, those bands of tissue that grow inside our bodies, twisting, distorting and covering our otherwise healthy organs. We are told that adhesions don’t cause pain, well Karla will argue otherwise as do all of us who have endured this invisible curse that rules our lives.

Unless adhesions have attached themselves to an organ, distorting or pulling it out of shape there is no sign of them unless a surgeon uses a laparoscopic incision and a small camera too peek inside the abdominal cavity. Then and only when the surgeon cannot perform a procedure because of the density of these adhesions does he/she admit to their existence and how they can inhibit the ability to successfully complete the surgery.

Many surgeons and doctors are of the opinion that adhesions don’t cause pain and therefore are of little significance

On reading back through my words, I have discovered that it sounds like an out and out attack on doctors, surgeons and the medical profession in general. That isn’t the message I am trying to convey, but it is how many adhesions sufferers begin to feel as they visit doctor after doctor in a search for relief from torture.

The purpose of our story is to highlight to all that it is an individual’s responsibility to fully understand a procedure as well as the possible consequences of it before we agree to sign the form that states we understand and accept this responsibility. Don’t sign it because the doctor on the other side of the table has all the degrees etc hanging on the wall next to his desk, sign it because you have had a frank and honest discussion with the doctor, your spouse or partner and have thought about it carefully yourself.

Do we not attend the office of a doctor often wearing our emotions on our sleeves? Don’t we often beg for release from our pain, suffering and endless interruption to our lives? We have to stop that kind of consultation and behaviour, it is time for us to start looking out for ourselves in a new way. Emotions are a volatile mix, a dangerous way for us to approach a person who has the potential of helping us or making our situation better or maybe worse. Don’t misunderstand, I don’t believe that surgeons intentionally agree to perform surgery on us as a way of making money, some agree because of our emotional state and perhaps may be unaware that our emotional state has influenced them feel that they must try something, anything that might provide a slim chance, a small glimmer of hope that perhaps this surgery, just this one more may make enough difference to us, might be able to make the pain bearable, enough for us to get on with our lives. I know that in my own experience I have been told, this surgery might not rid me of all pain, it may not remove any at all, there can simply be no guarantee’s.

It is time we stopped approaching doctors in this state! It is time to educate ourselves, read any information we can find, ask questions and make informed and sensible decisions about our treatment without letting our emotions overtake, making decision making an emotional one, instead of a rational and educated one.

Surgery, cutting into human flesh causes scarring, the incision line is a scar, from the outside scars are merely raised bumps in our flesh, sometimes ugly because the wound was jagged, or perhaps the flesh being burnt caused the scars. In all cases the outward sign is this scarring is limited to the damages area. It may perhaps prevent the full and easy movement of a limb; it may feel numb, so therefore dangerous if it was to receive another injury.

Inside our bodies, scarring is different. Instead of it simply repairing an open area of skin & tissue as it does on the outside of our bodies, scarring or as it is more properly called adhesions grow to protect an organ or area from a foreign element introduced to the internal area.

Adhesions form for many reasons; it can be the result of infection such as that from a burst appendix. The fluid released into the body shouldn’t be there, so the body will begin to protect itself by immediately growing scar tissue which firstly must find something to hold on to and then protect the area of contamination and then it must find somewhere else to adhere to, making it strong to protect us from this “invader” or foreign body. Our own blood left behind in the abdominal area during surgery, or simply the touch of a surgeon’s instrument as it works in the confined area within our body can cause it.

So adhesions have formed to protect our internal organs, what’s wrong with that? It is our bodies’ natural way of protecting us, how could this cause other problems? It causes problems in the area that these adhesions have adhered to. It can pull the organ out of shape, it can pull the organ into another area of our abdominal cavity, and it can cause that organ to become inflamed and irritated. When adhesions cause these sorts of problems we then feel pain. The pain can vary in intensity and length, each of us can handle it in different ways, many of us in the beginning accept it and absorb it into our being, we get on with life and we ignore it. Then one day it all becomes too much, we realise that we no longer control the pain, the pain controls us.

Once the pain takes control of us, our lives change. It isn’t just us as individuals; it is we as members of family, as friends, as a wife, as a husband, as a sister, as a brother as an employer or as an employee. Pain takes over us, sweeping us off our feet and into the turbulence and waves of our lives, tumbling us, making us loose a sense of who we are and where we are, the waves crash over our heads, adding more pain and more disorientation. We loose sight of the beach, of safety and the true sense of who we are.

Our whole life is overtaken by the pain, how much it hurts, what it stops us from doing what we love, how we make our living, it invades our sense of worth and our ability to be a mother, wife, husband, sister, brother whatever… this is who we become, this is why we go from doctor to doctor, hospital to hospital seeking an answer demanding our pain be given a name and accepted it as the cause of who we have become. For some of us, it is a matter of the recognition, a matter of giving the pain a name, a reason for the way we feel and the way we have to live.

Why is it in this time of such advancements in medicine, the number of diseases discovered, defined and possible cures sought and found, why is it that adhesions have been ignored? Why does the medical profession by and large view it as simply an unfortunate side affect that has no cure, and doesn’t deserve the zeal and determination afforded to other painful conditions in the search of a treatment and cure? Why have we been left to be thrown around still caught up in the surging waves, living in a world of pain with little hope of reaching the beach and safety?

So we arrive at this point realising that in order for us to have hope, in order for us to live until the answer is found, we first have to make the broader medical community aware of the devastation that adhesions cause in our lives.

We are not attacking, we are not blaming, and we are simply looking for an answer, for a consistency and continuity of care in our personal lives. Please, we want to be contributing members of society, we want to be an active participant in our families lives, all we want is the ability to rejoin humanity with dignity and pride.

In my own experience and from what others have indicated that surgery would only be performed if a life threatening event happens, causing them to act quickly to save our lives. Surely it makes more sense to look for a way of reducing the occurrence of adhesions rather than waiting for a life-threatening incidence? It is time for us to assert our convictions and concerns about our circumstances, it is up to us to find a way to make the medical world to sit up and realise how important our illness is.

I often find it unbelievable that governments haven’t looked at the figures concerning repeated surgeries on the same patient because of adhesions. Often testing is repetitive, including numerous x-rays, ultrasounds and CT scans’ to name a few. The purpose of our book is to motivate adhesions sufferers to take better control of their health and medical care to offer alternative ways to live with pain on a day-to-day basis.

It’s time for us to be more active in our daily pain therapy and find alternative ways to deal with it and reduce our need for high doses of pain medication that can often leave us with clouded thought processes and can interfere with our memory retention and reflexes. The suggestions within these pages are of our own design, having been derived through natural process and absorption of new layers of pain added as Karla & I have discovered as a natural progression and escalation of our pain and disabilities.

--
P.S. I'm not a doctor or medical person, just a fellow
adhesions sufferer who really wants better treatment
for us all.

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