Hope For Those Who Suffer From Adhesion Related Disorder.

Egrets...This Doesn't Happen Everyday!

My friend, Marti, was visiting the Botanical Gardens in Ft. Worth and captured a live egret which was standing among the bronze sculptured egrets! What a cool shot...but even cooler when the egret dipped into the water, helping himself to a goldfish! Photos copyright ArtbyMarti

Doctors: Bound by Secrecy? Victims: Bound by Pain!

Doctors: Bound by Secrecy? Victims: Bound by Pain! is the story of Melissa Steward's illness: Adhesion Related Disorder. Originally diagnosed with Crohn's disease and treated with corticosteroids, Melissa's life came to a standstill due to agonizing abdominal, pelvic and back pain, along with suffering continual bouts of vomiting. Believing Melissa had been misdiagnosed, the Steward family would soon learn that walking the ropes of medicine and doctors is a vexing experience indeed. Countless doctors expected the Steward's to accept Melissa's "illness" as one of pain and misery, which had to be tolerated--handled by corticosteroid pills and antidepressants.

Today Melissa is out of bed and living her life to the fullest! Victory came through love, anger, laughter, perseverance...and by finally meeting a doctor who knew how to help Melissa out of her painful existence! May the story of Melissa's courage inspire you!

You Have The Right To Receive Pain Medication!

(Or, so they claim.)

It was 4 am, Melissa was in agonizing pain, the freeway was, (for the most part), empty, and the needle on the speedometer was etching toward 95mph. My foot to the pedal & hands firmly gripping the wheel, both controlled by the painful moans that emitted uncontrollably from Melissa's voice. She was in horrific pain. The ER that we had come to trust (after others had failed her miseraby) was a 20 minute drive away....and I was trying to make it in 10.

"Ohhhhhh," she moaned, "can you go any faster?"

This scenario had happened way too many times and we had finally learned that a full blown bowel obstruction was the culprit behind these episodes of excruciating pain. Melissa had called me at 11:00 pm that evening and warned me: "I'm starting to have pain in my stomach...but, I'm hoping it will pass." Stinker that she is, she suffered for hours before finally calling me at 4 am..she just couldn't take the pain any longer...and the vomiting had begun hours earlier.

A security man stationed outside the ER rushed over to our vehicle as we pulled in. He got a wheelchair, helped Melissa into it and took her away. By the time I parked the car and got inside, Melissa had already been taken behind the secured doors. I rushed to the counter and told the policeman at the desk that it was my daughter who had just been brought in. He hit the button to unlock the doors and I made my way to the back.

A nurse was taking Melissa's blood pressure (which was high), as Melissa continued to moan. We were then ushered into a small room. Another nurse came in, assured Melissa they would get her some medication, along with taking down the information about Melissa's 'history of illness and pain.'

Armed with all the knowledge, the nurse left the room....minutes ticked away.....we heard other people moaning in pain....minutes ticked away....I looked into the hall but there were no nurses or doctors to be seen or found....minutes ticked away. I looked at the clock. We had been there 25 minutes, yet no one was coming to help. Melissa continued to moan.

Soon 40 minutes had passed. I searched the halls and finally found a nurse. "I think my daughter has been forgotten," I complained, "she's in a lot of pain!"

"We're short handed. I'm sorry. We've called for help and we've paged the doctor, but we can't administer pain meds until the doctor gives the order."

"Can you call him again?"

"Okay, I will," she replied.

I made my way back to Melissa. She continued to moan and thrash about the bed. A lab technician came in and attempted to draw blood, but she failed to hit a vein. Promising she wouldn't miss the second time, she tried again and succeeded. She filled vial after vial after vial.....

"What's going on here?" I asked her, "We've always gotten prompt attention before."

"I'm not sure," she answered, "Someone should be in soon though."

As she left the room I saw a framed "pain" notice that sat on the cabinet. I picked it up. It was a group of yellow smiley faces, all lined up on a numbered scale, only none of the smiley faces were smiling. Starting with the number "1," the first smiley face looked rather droopy, his eyeslids hanging down, with lips to match.  As the droopy smiley faces progressed toward the number "10", the grimaces had turned to exploding pain....the yellow faces changing from vibrant yellow to light pink, rose, then finally crimson red. Smiley faces number 8, 9 & 10 were only a distant memory of what they had once been, not even a pale hint of sunshine yellow remained.

The text above the smiley/painful faces reflected bold type:

YOU HAVE THE RIGHT TO RECEIVE PAIN MEDICATION!

Below the smiley faces, there was a long explantion that went something like this:

"It is our policy that medication for your pain is promptly administered. Pain causes stress to the body, which delays healing time. Pain can also lead to more complications in the body, therefore pain medication will be promptly administered. You will be asked about the severity of your pain. The sliding scale above is a good tool that you can use to explain your pain to the doctor."

It seemed to me that no one in the ER needed a sliding scale smiley/grimace face chart by which to explain their pain, as the sounds of moaning and groaning came from every cubicle!! But, where, oh where, was the (bleep) ER doctor who we were to hold the (bleep) smiley face chart up to in order to explain Melissa's pain??!!

The moans coming from the man in the cubicle next to us had grown louder. In between his moans he had started to speak:

"I NEED A DOCTOR!" and then I heard him moan again, "ARRRRRRRHHHH, (BLEEP, BLEEP, BLEEP) I NEED A (BLEEP, BLEEP) DOCTOR! ARRRRRRRHHHHHH!"

Melissa continued to moan, but she looked at me and said, "God, mom! Find a doctor for that guy!"

I took off, looking for an ER doctor. I found a nurse. She was young, but obviously already hard of hearing, as she sipped coffee, oblivious to all the moans that seemed to vibrate all around me.

"EXCUSE ME," I stated, "Is there a DOCTOR in this ER??!!"

"We've called him. Not sure where he is, but I'll page him again."

"Aren't we in the TRAUMA unit?"

"Yes."

"Well, for God's sakes, you have to PAGE a doctor??!!"

"We can't do a thing until the doctor gets here. You might want to file a complaint, as he is supposed to be here."

I walked back down to Melissa's cubicle, moans following each step that I made, other family members peering into the halls, all hoping to be the first one to lasso anything that even remotely looked like a doctor...and in my mind I could see every patient rising from their beds, moaning and groaning, making their way into the hall, each holding their gown tail with one hand and their smiley/grimace face chart high in the air with the other, hoping against hope that they might catch the attention of an ER doctor...or perhaps, anyone!

By now it was 6:30 am and we were still waiting. Melissa wasn't thrashing around as much, (we had been praying for the pain to stop) and the man next to our cubicle wasn't yelling (or cussing) quite as much as he had been (we had been praying for him as well). In fact, he had suddenly gone silent.

"That guy got quiet. Is he still alive other there?" Melissa asked," Or did he just pass out from the pain?"

"I'm not sure."

A nurse walked in to take Melissa's blood pressure. "120/70!....HEY!" she exclaimed, "that's a huge improvement! You must not be having as much pain as what you'd been having; Dr. Black should be in any minute. He's finally arrived."

Within a few minutes a huge African American man walked into the room. "I'm Doctor Black," he stated in a deep throated voice that seemed to rise from the bottom of a canyon. He towered over Melissa's body and continued, "Are you in pain?"

"I was HOURS ago," she answered flatly, not the least bit intimidated by the huge dark mountain that hovered over her.

"Oh...I'm sorry you had to wait so long. We're going to send you up for an x-ray. Think you've got a bowel obstruction, huh? Wait right here."

"Oh, I'm sorry you had to wait so long," Melissa mimicked after he left the room. "Wait right here??!! Just where the (BLEEP) does he think I'm going to go??! GAWD! Can you believe they have the GALL to have that stupid pain chart in here? Why can't I just get my own morphine drip and IV equipment and keep it in the refrigerator at home?! GAWD! These (bleep, bleep, bleep) freakin' doctors and hospitals are a royal pain in the a**!!! I mean, if it's 4 in the morning and you show up at the ER, you're in PAIN, okay??!! If you're moaning like a wild animal, you're in PAIN, okay?!! If you're.....

I interrupt: "And if you're in pain, you have the RIGHT to receive pain medication! That's the policy here. The smily chart says so. Of course, that doesn't mean you're going to receive any, but you have the right to receive it....."

Melissa grins

"You're better now, aren't you?" I ask.

"Yep, yep, yep. I'm still having some spasms, but the horrid pain I was having is over...I can handle these small spasms. Lord, I was about to die! And a lot of good it did to come here!"

A man walked into the room: "Hi, I'm from xray...gonna take you upstairs. Dr. Black says we need to get you on up...said you might have a bowel obstruction. Those darn thangs are serious business, you know?"

Melissa looks at me and rolls her eyes.

We both grin at each other.

Glory be! Help, at last!

*I've received a couple of emails from people who have read the book and have asked if I can "tell more" about Melissa's journey with ARD. This incident is one. Since many of you who have read the book have suffered (or are suffering) from adhesions, please consider sharing some of your own incidents with others. I will be glad to add your comments/brief incidents on these pages. Just email me!

Pulled This Way And That! The Pain of Adhesions!

Dear Karen,

It's bad enough that adhesion sufferers are pulled nine ways to Sunday inside their bodies due to adhesions, but the story of your daughter and the fight for her health made me realize just how we are also pulled nine ways to Sunday with the medical profession! The story of your daughter's fight sounds just like my own. Doctors have pulled me every which a way, but they have no solution for the agony of adhesions. They will always operate and I'm afraid that I've been a fool for allowing it. I know adhesions only get worse, but when you are in pain, you always hope that the 'next' surgery will be the one that really helps. Thanks for writing the story. I cried a million tears, but you made me laugh too and I needed that! I am ordering another one for my mother. I'm really happy for you and for Melissa. I hope SprayGel can one day be used here or maybe I can go to Germany in the future. HUGS, Liz.

Thanks Liz....

Indian Wisdom.

Thanks to my friend, Carolyn M., for passing this along:

There was an Indian Chief who had four sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.

The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall. When they had all gone and come back, he called them together to describe what they had seen. The first son said that the tree was ugly, bent, and twisted. The second son said no it was covered with green buds and full of promise. The third son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen. The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfillment. The man then explained to his sons that they were all correct, because they had each seen but only one season in the tree's life. He told them that you cannot judge a tree, or a person, by only one season, and that the essence of who they are and the pleasure, joy, and love that come from that life can only be measured at the end, when all the seasons are up.

If you give up when it's winter, you will miss the promise of your spring, the beauty of your summer, fulfillment of your fall.

Moral: Don't let the pain of one season destroy the joy of all the rest. Don't judge life by one difficult season. Persevere through the difficult patches and better times are sure to come.

Live Simply. Love Generously. Care Deeply. Speak Kindly. Leave the Rest to God.

Happiness keeps You Sweet,Trials keep You Strong, Sorrows keep You Human, Failures keep You Humble, Success keeps You Glowing, But Only God keeps You Going!

Endo. What Do We Know?

If you spend time researching endometriosis (endo) websites, you'll often find a very common theme:

Endo causes pain, and endo causes adhesions.

What you won't (or will rarely) find is this:

Adhesions cause pain and endo causes adhesions.

Is it possible that multitudes of women are being mislead? No doubt, there's some severe cases of endo out there, but how many women have lost their lives to "endo," resigning themselves to a life of pain and misery, when the real culprit behind some cases of excruciating pain, vomiting, difficulty breathing, migraines and back pain is actually "adhesions"?

In Melissa's case, two separate surgeries in the USA, performed by different surgeons, resulted in endometriosis being excised, adhesions being acknowledged and removed, but she gained little to no relief from either surgery. The subject of her "condition" was soon centered around endometriosis. The operative reports, however, noted "dense adhesions." Furthermore, one surgeon had stated: "The biggest issue is adhesions." At a later date he said, "We need to 'treat' you for endo."

Endometriosis is said to be a "puzzling" illness. Perhaps one piece of the puzzle that clearly fits, but many doctors fail (or refuse) to connect, is the fact that adhesions are a major contributor of debilitating pain and symptoms in many cases of, quote, "endometriosis."

Laparotomy. Laparoscopy.....Terminology.

The educated patient knows what to expect prior to surgery. However, when you're sick, you're certainly more vulnerable and less likely to ask "in depth" questions about your surgery, especially if it is your first surgery. Most surgeons want you to be informed and will explain, in detail, their surgical procedure. However, there are others who may see no need to explain a thing. It's important to learn medical terminology long before you are being rolled into the operating room. 

What's the difference in laparotomy compared to laparoscopy? Do you know? If not, you need to know, as surgery is trauma to the body, which results in adhesion formation (scar tissue) as the body heals itself. It is best to avoid a laparotomy, if at all possible.

Laparotomy: A surgical incision into the abdominal cavity through the loin or flank.

Laparoscopy: An operation in which a laparoscope is used, as in an examination of the liver or the surgical treatment of endometriosis. Sometimes called keyhole surgery.

Laparoscopy is the least invasive type of surgery, and the most desirable (if at all possible) should you have to undergo abdominal or pelvic surgery.

Thomas and Hero

Thomas and Hero dropping in. Just to add some sparkle to your day!

Scanning the Globe For The RIGHT Doctor!

How naive I was when Melissa became ill. After all, you go to the doc, get a prescription, go home, crawl into bed, and follow the doc's instructions...simply enough! In a few days, you are back on your feet and all the prior misery is a distant memory.

But, what happens when you don't get well? 

Well, that's when you go back to the doctor. Again, and again, and again. Soon, he (she) thinks you're "imagining things" or you're "depressed." You're given a little pep talk and a prescription for an antidepressant.

You protest: "BUT I'M NOT DEPRESSED! I'M IN PAIN!"

"Well, this should help," he says, as he hands you the prescription for the antidepressant, his ears and actions on auto-pilot.

You leave his office, (perhaps in tears), maybe not even realizing that you are getting ready to embark on an arduous journey to 'find the right doctor,' 'one who will listen'....maybe even one who will care?

For the person who suffers from adhesion related disorder, yet has no knowledge they are suffering from adhesions, the journey can continue on for years...and years...and years. You will meet doctor after doctor, as you firmly believe that you are going to find the RIGHT doctor...the one who will know what is wrong in your body and will help relieve you of the agony you're in.

Unfortunately, for the person who suffers from adhesions, the "right" doctor is few and far between! While we search, going in and out of countless doctors' offices, we have no idea that we are dealing with an illness that is 'ignored,' and often a 'taboo' subject among physicians.

Looking back, there's no doubt in my mind that many physicians KNEW Melissa was suffering from adhesions, yet not one single doctor ever suggested 'adhesions' as a probable cause of her misery. Countless physicians had the results of her tests: her intestines were 'narrowed' (proven by repeated upper gi and small bowel series), she had continual vomiting, severe abdominal pain, and an inability to stand upright (adhesions constrict, which caused her to walk in a bent-over manner), yet countless doctors sent her on her way, telling her she must resign herself to a life of pain and misery, denying that she was truly 'ill', or reprimanding and insulting her for not 'accepting' at least one of the (conflicting) diagnoses that had been given, along with the 'treatments' that had been provided for her (steroid and antispasmodic pills).

It is my opinion that the doctors remained silent, due to the other knowledge that they had: any surgery to remove adhesions will only result in creating more adhesions! Since adhesions are bands of scar tissue, and the body's natural response to heal itself after trauma (surgery is trauma to the body), surgery to remove adhesions is a catch 22 situation; both for the sufferer and the performing surgeon.

Once we learned Melissa's pelvic organs were encased in adhesions (after her first laparoscopy surgery--photos from this surgery are in the book: Doctors: Bound By Secrecy? Victims: Bound by Pain!), it seemed only reasonable to me that her intestines must be involved as well. However, the surgeon who had performed the laparoscopic surgery disagreed. He insisted her continuing pain and problems were due to endometriosis rather than adhesions. 

"But," I asked, "what about the portion of the intestines that you photographed that was STUCK to her uterus?"

"I freed it up," he answered.

"But, what about the rest of the bowel. Did you check her entire bowel?" I pressed.

Well...let's just say that he wasn't too happy with my pressing questions.

Many doctors prefer the driver's seat. You're just the passenger. It doesn't matter where you want to go, where you want to stop, what you want to discuss about the trip, or where the journey is going to lead you. They have a firm grip on the wheel, they will decide the turns to make, where you are going, where you will stop and where you will end up.

Have you ever felt like you were being held hostage when certain people get behind the wheel? When my husband and I first married and went places together, he was always the driver. While I thought we were going on a relaxing and enjoyable trip...well, he had something totally different on his mind--a goal: "making time."

I recall his firm grip on the wheel as we traveled for hours on end, non-stop. As we flew through little towns, I would see cute little shops, roadside vendors, or perhaps (God forbid) a restroom. I would say, "Oh look, there's a cute little......", or "did you see all those tomatoes, peaches and....." and my voice would fade away as we "made time."

It never failed. As he continued on, pedal to the metal, (always well over the speed limit), he would reply, "You didn't want to stop back there, did you?"

When we  would reach our destination, my husband would proudly announce. "Well, we made it in x hours and x minutes."

(??????)

It didn't take too many months of marriage before I learned to say, "STOP the car!"

He did. And, we bought tomatoes and peaches. We went in shops. We used the restroom.

To this day he continues to announce, "We made it in x hours and x minutes," except now he adds: "of course if we hadn't stopped at that shop it would have been...."

For the person who suffers in illness, any illness, you must be an active participant in the plan for your health. If your pain is being ignored, you must take the wheel. If your pain is finally acknowledged and the source of the pain has been uncovered, it's okay for the doctor to be in the driver's seat, but the passenger should be able to ask "just where are you taking me?" "Is your recommendation/plan for my health going to HELP me?"

A doctor who has ears to hear his patient will apply the brakes. He (she) will allow you to be an active participant in the journey of your health.

Adhesions? Can They Be Seen?

I was asked today if anyone has ever actually "seen" adhesions. Unlike the Loch Ness Monster, whose sightings are in question, there's no question about adhesions! Though the subject of adhesions is often a hushed or taboo subject among many physicians, it is unlikely that there is a single physician who is not aware of adhesions or the resulting problems adhesions can cause internally for some people. (Note* Adhesions cannot be "seen" via standard medical tests, thus many people who may be ill due to adhesions may find themselves being "diagnosed" and "treated" for illnesses they do not have. (Diagnostic laparoscopy can detect adhesions.)

Because a picture is worth a thousand words, I took the photos from Melissa's first surgery to a professional who adjusted them to size so I could include them in the book. These photos unravelled years of frustration, pain and suffering, not only for Melissa, but for her family as well. The photos not only validated her pain and the horror she was enduring, they also revealed what was really going on in her body which subsequently led to an answer to her suffering.