Adhesion Related Disorder (ARD) This section is dedicated to the those who suffer from adhesions, as well as those who have suffered. These are the Faces of ARD.
ARD sufferers do not carry the illness on their faces. Thankfully, they can still smile! The sufferer often "looks" fine. Inside, however, organs are compromised and not working properly. ARD causes pain and symptoms that are not visible on the face of the sufferer. Those who are fortunate enough to enjoy good health should weigh their words carefully when someone is ill. Avoid saying, "You look fine" or, "You sure don't look sick." Those comments, while often said in innocence, are painful to those who suffer. The words sting, as the sufferer feels as though there is an insinuation he or she is not sick. If a person is in a wheelchair, cast, or has some other medical contraption, there is a visual message we all recognize which normally gives us pause, followed by compassion. Instantly, we recognize limitations and struggles. For the person suffering an internal illness, life can throws some pretty hard balls. Not only does the sufferer deal with an agonizing illness, but often deals with disparaging comments and looks of skepticism based solely on the appearance of one's face. Please see the "Images of Adhesions" section to help understand the internal pain and struggle an ARD sufferer deals with each day. Surely these images will help us to understand that a person can appear beautiful and smile, but there can be unimaginable pain and suffering for the person who suffers from ARD. As in the words of John Bradford: "There but for the grace of God, go I."
The faces below represent people who currently suffer or have suffered this debilitating illness. Their smiles reflect a fighting spirit! Please note: The months or years reflected on the images are as of date the images were added to this website. If you are an ARD sufferer, or former sufferer, and would like your photo added, please send an email via the comment section and instructions will be provided for you. To the reader: please scroll down to read the story behind the faces you see here.
My ARD Story: My life changed drastically on Aug. 20th, 2015. I had an emergency surgery for a twisted ovary. My left ovary had twisted and flipped upside down due to a cyst. The cyst ruptured during surgery, as I was told, and untwisted my ovary. I was stitched up and sent home. I told I was fine and would recover easily in 3-5days.
I never recovered. Instead, my health depleted; a little worse with each day. I couldn't walk for nearly a month. I was told to see a GI doctor. That appointment was scheduled 6 months away. I couldn't leave my bed from the agonizing pain, daily nausea & vomiting--to the point of dehydration. I was having IV infusion appointments 3-4 days a week because I couldn't keep any food down. I was going to the ER in tears at least twice a week for months on end because of the horrific pain, and the nauseated misery. I saw four different doctors who all pushed me aside. Depression: seek a psychiatrist. Drug Seeker: addict. Nothing is wrong with you. All of my tests MRI, CT scans, ultrasound after ultrasound sound, showed nothing other then a cyst or two. I was put on so many different medications to try and I endured test after test.
My life revolved around IVs in my arms and carrying a barf bag with me 24-7. No medical professional listened, only a referral to a GI. But then he couldn't get me in for 6 months. Desperate for any relief, I went for a holistic healing, and she gave me a card to a famous surgeon, Cameron Netzats. I made my appointment and he actually listened to me, prescribed me pain meds and scheduled a diagnostic laparoscopy.
Feb 3' 2016...Time for surgery #2. Turned out, I had massive scar tissue damage. My ovaries were attached to my uterus and bowel. I was also diagnosed with Allen Masters syndrome. Two extremely rare diseases and I was just lucky enough to have both. Spider web of scar tissue covers my insides. Netzats removed all the scar tissue, stitched me up, and I actually finally had some relief from the pain. Unfortunately, the nausea & vomiting continued. But, within a week I could walk without excruciating pain. I finally felt like maybe there was hope for me. Just maybe I could get better, have a normal life again...
I was wrong. Within the second week, I had the worst menstrual cycle I've ever had in my lifetime, or so I thought. Each one is agonizing and I don't leave my bed unless it's to go to the ER. I scheduled an appointment and was told the first few cycles are just bad and it should get easier and less painful. I was given a prescription for oxycodone. It never got better. The pain, nausea, vomiting, only got worse--not just around my menstrual cycle, but each day....I just got worse. Still no doctor listened. All passed me to the side, billed me more and more $$$$, yet offered me no release from this suffering.
The debt piled up higher and higher. I relocated from California to Florida so my parents could help me and my small struggling family: my fiancé and my 4-yr old daughter.
Finally I had a diagnosis, so I couldn't be told nothing was wrong with me. I found a GI doctor, crossed my fingers, and prayed he'd find something that could explain my constant nausea vomiting, and pain. MRI... normal Endoscopy... normal Colonoscopy... normal
I was told the culprit of the nausea, vomiting, chronic pain was the adhesions... and there was nothing else he could do for me other then prescribe medication to try.
Next idea: Gyno surgeon appointment. Possibly missed endo? This doctor suggested induced menopause treatments and told me as nice as possible if Cameron Netzats couldn't help me, how was he going to? He explained as nicely as possible the cure for adhesions only causes more adhesions and would most likely make my condition worse, with a higher risk for a bowel obstruction.
Pain management... I've tried so many medications that I have my own pharmacy at home. The best pain relief I've had came from Butran patches, but they made me so exhausted that I slept nearly 12 hrs a day or more; they also made my constipation worse and I had to discontinue them. I currently take zofran for my nausea vomiting and oxycodone for pain. My doctor is still working with me to find a long term treatment plan. But I will most likely live the rest of my life on opiates.
Hopeless... I went from a happy working mom to permanently disabled. I can't stand longer then a few minutes at a time. I can't use the restroom without horrible pain. I can't go out without a wheelchair anymore. I used to go for long walks daily. I can't eat out without feeling embarrassed due to my inability to keep food down. I loved to dance, but now I fall and can't get back to my feet without help.
I've had two partial obstructions and I'm praying I don't get another or need more surgery. The pain is agonizing, the nausea, migraines, etc. I've only suffered a year now and I don't know how anyone can live years and years this way. All of you have inspired me to stay strong, because this disease has broken not just my body but also my spirit.
This story was added to the website June 8, 2016 Dandi: I'm 32 years old and for the last 13 yrs I have been fighting doctor after doctor trying to figure out what was wrong with me. It all started 14 yrs ago when I had my daughter via C-section. At my 6-week check up, I told my OB I felt like something was poking me inside. She dismissed it, saying it was just from my nerves being cut and I would be fine. Well, by the time my daughter was a year old, I felt "different." There was a new kind of pull when I moved that I had never had before. Three years later, my daughter now four, I was in basic training for the USAF when I felt something pop inside me during PT. When I looked down, I was lying in a puddle of blood. The AF hospital performed an ultrasound, said I had just started my period, gave me a shot of morphine, then sent me back to the barracks. Strangely, only three weeks later, they gave me a medical discharge.
A year later, I opted to have my tubes tied simply because something inside me feared the unknown. I didn't want to risk getting pregnant again. The GYN who performed the surgery said: "Some things don't look quite right inside, but you will be fine."
Trusting the "medical professionals," I, once again, went about my life and accepted the random pains as they came and went, believing this was "normal." By the time my daughter was eight years old, the pain had become so excruciating, I had multiple visits to my primary care physician. Without performing a single test, he told me I had Crohn's disease. He then referred me to his "buddy" who was a gastroenterologist. Scopes and biopsies all came back negative for Crohn's. Over time, these tests were repeated twice more. Just as the first time, these tests returned negative for Crohn's. However, both doctors swore I had Crohn's.
Over the last few years, the ER almost became a second home. Soon, the ER doctors began to treat me as if I was crazy. Worse still, my own mother began to believe I was being "overdramatic." Finally, I was admitted for a small bowel obstruction. I thought for sure I would finally get a real answer, but boy was I wrong. After five days of bowel rest and antibiotics, I was sent home once again under the label of a "Crohn's flare."
I NEVER felt that was the right diagnosis and the last two years have been the worst of my life! The ER visits rapidly became more and more common, to the point that I was actually in there every week for six weeks before they admitted me again for a small bowel obstruction. Again, 5 days of bowel rest and antibiotics, then sent home again with the same "Crohn's" label.
Less than a month later, my pain was back, but now it was different. Because the pain was unbearable, I was unable to even sleep. No matter what I tried: ice packs, heating pads, adjusting the way I lay in the bed, absolutely nothing worked. I had now gone weeks with no rest. Pain continued to send me to the ER. One of those visits will forever be etched into my mind: it was the fourth of my weekly visits. I was left in the lobby in a wheelchair waiting for a room. Sharp pains, much like labor pains, would come and go. I'd do my best to just breathe through them, but about 30 minutes into my wait, the pain became constant. I was literally crawling out of the wheelchair gritting my teeth to muffle my screams as I writhed around in pain. Finally, when I almost passed out, my mother got up and asked for help. They immediately took me back to a room. I was given morphine for the pain and it numbed every part of my body EXCEPT my abdomen! Still unable to sit still because of the pain, they sent me for an ultrasound. I remember BEGGING the tech to help me as I sobbed uncontrollably. Simply the touch of the dopplar on my abdomen made me cry out in more pain! Unbelievable, I was informed of a "clear ultrasound," and that nothing looked abnormal. I was then sent for a CT scan. It too came back clear. By this time, they had given me the pain med Dilaudid, and I was finally somewhat comfortable. Once again, I was sent home. Not even twenty minutes of arriving home, I received a call from the ER. They said they reviewed my CT results again and found the start of an abscess. I was informed that if I spiked a fever, I was to return immediately. Well, weeks went by without a fever, however, the pain was consistent. Then, my PCP said he had looked at my CT scan himself and he didn't see an abscess, just an ovarian cyst.
So again, I wanted to trust the medical professional, so I scheduled and appointment with a gynecologist that he recommended. I did my best to wait out the next eight weeks. Valentine's weekend, 2016, I was EXHAUSTED! I felt like I had never felt before and I had fever. Since my period had started, I just assumed it was that or a stomach bug of some sort, however, the pain was so intense, the only slightest relief I could find was standing in a scalding hot shower. After two days of misery, my BF convinced me to go back to the ER. This time the CT scan showed a softball size abscess in my pelvis!
I was admitted to Surgical ICU and the surgeon placed a drain with the hope of being able to avoid surgery. But, after four days, it was still 3/4 of the original size. Surgery was recommended, so I agreed. I was told the surgery would be about 2.5 hours, but it ended up taking over five hours.
After surgery, I was informed that the adhesions were so bad that my internal organs were NOT recognizable! The surgeon also found a SUTURE from my c-section still inside me after almost 14 yrs. This suture had created so much inflammation, which fed the growth of adhesions. Ultimately, I lost 2.5 feet of my small bowel, 6 inches of my large bowel, as well as my right ovary.
Yes, I was ALIVE, but I never thought I'd be celebrating my 32nd birthday with an ileostomy bag on my side! Pathology came back on everything they had removed and, once again, I was NEGATIVE for Crohn's! As crazy as it sounds, the doctors continued to stick with that diagnosis! I finally convinced my PCP that the Crohn's diagnosis is wrong! Now, in about four days, I get a chance to try and convince my GI doctor the same thing. Wish me luck, as this has been one rough road. I just want to move on with my life! Heck, I'm seriously thinking maybe med school!
This story was added to the website April 2015. My name is Ryan Whitmire. I am currently 27 years old and live in Texas. My battle with ARD started when I had an exploratory surgery for an unknown bowel problem in 2005. Once they took my entire large intestine in 2006 is when the adhesions started to really take me over.
I have had a total of nineteen surgeries for adhesiolysis ranging from both open to laparoscopic procedures. I am currently battling an obstruction that I have had, or that first showed on a CT scan, since September 2014. I've been to the point numerous times, as I am now, where I cannot stand upright, vomiting is continual, and I live in agonizing pain. I have to see a pain specialist once a month where he gives me two narcotics just to be able to function. It gets scary to the point where I have insomnia, afraid of something happening internally in the night to where I won't wake up the next morning or not. I make sure that I always wear a thick enough mask when I'm around others so that they are unable to see the tears from the agonizing pain that I am always in.
I have been to so many doctors in the past that will look me in the face and say there is nothing that needs to be done surgically, that it is not a life-threatening ailment. When I would actually get lucky in an emergency room and get admitted, they would only admit me NPO (nothing by mouth) and tell me that would fix the bowel obstruction since it would give time for the bowel to rest. Then when it came for them to discharge me, I'd be in a much worse condition than when I showed up. It's like a (un)merry-go-round, just a constant circle and repeat of events.
UPDATE: Ryan was able to make his way to Germany this year for surgery with Dr. Daniel Kruschinski. His outcome: a new lease on life! Read more at this link: www.facebook.com/CureRyansARD/?fref=ts
This story was added to the website, June 8, 2016. Demarus, as shared by his sister, Crystal: I took my brother to the ER for abdominal pain and vomiting. They ran tests and said he had ascites, so they sent him home with water pills. Three days later, he was still in pain, so I took him back to the same ER and they admitted him. They thought it was cirrhosis, but the tests determined it wasn't. Said he has hepatitis C, but never received any treatment for it. He was in the hospital thirteen days and he gets a blood clot in his lungs. They never gave him blood thinners prior to that. They said his esophagus had ruptured, so they patched it back up. Finally, he gets discharged, but still no diagnosis. We were told to follow up with a GI specialist, so I took him. She didn't do anything, but said they need to drain the fluid from his stomach. She increased the dosage on the water pills. However, he was still in pain and his stomach distended. He still can't eat or drink anything from the vomiting. We went to a different ER and they admitted him, immediately thinking it's cirrhosis as well. But, it wasn't. After five days they sent him home with no diagnosis. The next night, I took him to another ER and they did the same, but this time he didn't get admitted, only gave him pain meds and sent him home. I forgot to mention he has no insurance or Medicaid to pay for this, so they made it quite clear there was nothing they can for him without it. All of them.
About four days later, he's on the floor crying in pain. Around 1 a.m., I took him back to the first ER and they said he's constipated and gave him a prescription for that. We go home, but he's still up crying, so I find another ER to take him. They said his stomach was inflamed and he was bleeding on the inside, so they took him back to the first hospital we went to. They admitted him again on September 3, 2015. This is the fourth time being at this hospital. They're running all types of test and say they can't find anything. However, he now has a blood clot on each lung, but he can't take the blood thinners until they can stop the bleeding. He gets moved to ICU on the cardio floor and still nothing.
Now, they thinking it's cancer, so they finally decided to do surgery on September 24 or 25th. The surgeon said his organs on the inside are frozen and it's irreversible. That's it.
The tissue the surgeon took was too small to determine cancer or a diagnosis. At this point, he's malnourished and has lost a ton of weight. They don't know what else to do. Now, he has a blood clot in each leg along with the other two, because they stop giving him blood thinners. He was denied for Medicaid six times and any other insurance I applied for. Today, December 2, 2015, he still is in the hospital with no diagnosis and malnutrition. They said there's nothing more they can do and he's dying. They're trying to send him to hospice with no diagnosis. All I know is, he has a frozen abdomen. He never had any surgeries prior to the one when he was told about the frozen abdomen. My brother is 27 years old and still fighting for his life. Please keep him in your prayers.
This story was added to the website March, 2014. Shawn: My story began in 1997 with severe abdominal pain. I was rushed to the ER where it was determined that I needed my appendix removed. When I woke from that surgery, I was informed my appendix was fine, but it had been removed.
The doctor did find some fluid in the abdominal cavity, but didn't take a sample, as I had not signed a consent. I was given a couple of weeks to gain some weight, as in their opinion, I was not strong enough to survive another surgery right away. The lab results indicated I was either bleeding internally, or had cancer.
Following up with my GP, his first statement was: "Those idiots! Did they ask you when you had your last period?" He sent me for an ultra sound which showed no fluid present and all lab work was normal.
I started gaining weight and life was going in the right direction, I thought.
It took a few years before ARD presented its ugly pain. My GP suspected adhesions, but wanted to wait and see. I was told to have faith; he had seen miracles in the human body--once a human body grew new loops in the bowel--formed to bypass a blockage.
So, I prayed.
Waiting was a very painful couple of years, as my GP would not prescribe pain medication, as it would cause constipation. At this point, my tummy could not be touched lightly without horrible pain.
Many times I was put in the hospital, spending weeks at at time to clear blockages. I could have nothing by mouth, eating only senokot, lactolose, on IV fluids and morphine. I quickly learned that soft foods and liquids were my friend; it was how I controlled my pain. After losing another 25 pounds that I could not afford to lose, I felt I needed a second opinion.
The new GP gave me Fentanyl pain patches and sent me to see a gynecologist for the female pain I was experiencing. The gynecologist did many tests and eventually performed laparoscopic surgery. She found everything in my abdominal cavity glued together. She asked me how I was even walking! She cut the nerve in my leg to prevent the adhesions from finding the artery. My bowel was also kinked at the appendix scar. I was put on birth control 24-7, as she determined my uterus was bleeding into the abdominal cavity. Unfortunately, none of this stopped the adhesions.
I was admitted to our small hospital with pain around my liver area and was quickly transferred to a city hospital for a CAT scan. There, I was kept for 2 weeks; morphine on board to curb the pain. The surgeon felt it would be too risky to do another surgery, yet I was taken to the operating room for a D&C procedure. I was then informed they had the wrong patient. I signed myself out the very next morning and headed back to my GP.
He decided I needed a hysterectomy.
A gynecologist agreed to perform a total hysterectomy (abdominally) and also remove all the adhesions. The next day, I was informed that no adhesions were present. I was sent me home throwing up. His "prescription" was only advice: drink apple juice.
On day 13, post-op, I was admitted to hospital to clear a bowel blockage. I was then referred to a gastroenterologist who informed me that I had IBS (irritable bowel syndrome) and that I did not eat enough fiber. She stated that lack of fiber would cause harm to my bowels. I started taking benefiber, which ended up forcing me to wear Depends, but I was afraid to stop the benefiber, per her warnings.
I could not pass anything and my tummy blew up. My poor husband! I was now diagnosed with a paralized small bowel, I was now on a liquid diet and became so weak, I weighed only 90 pounds and could no longer even bathe myself. This lasted 2 years.
I tried everything that offered hope: acupunture, visceral massage, energy work, chiropactor care, nothing helped. At one point after vomiting bile all night, I was taken to the hospital were lab work indicated gall bladder. This specialist, that I waited months to see with great hope, did not even open my chart when I told him of the adhesion surgeries. Instead, he went into a rampage, yelling at me that I was just addicted to surgery! I started crying and left the office immediately.
The pain just kept getting worse. With nothing to lose, I went to see a homeopathic doctor who started me on a medication. In a few months, I could eat a little solid food, as my bowels had started to function. She also had me wrap in cold pressed castor oil flannel wraps with my heating pad at night and had me take Epson salt baths everyday. She also told me that my spine was not straight, or centered, and she sent me to a chiropractor.
My tailbone was pinching my left side and this 78-year old chiropractor removed the adhesions rectally. He was a 3 hour drive away so I had to live in motel rooms over a period of 2.5 years. Dr. Smith also straighened my spine and very gently massaged my bowels and with his help was able to eat a little more solid food.
A dear old friend told me about a pain doctor that would take walk-in appointments. I had trigger point injections in my tummy, back, gluts and tailbone. This did help, but it was still very painful to sit, and it was over an hour drive, so I had to stop.
An MRI report stated that my sacrum was out of alignment. My GP sent me for a pundental block which only numbed my right leg and groin area. Among all this, my family GP passed away. While at physiotherpy to strengthen my pelvic floor, I felt like there were large stones in my tummy. I called another GP in hopes of being seen immediately. This doctor referred me to a bowel surgeon. That was 3 years ago and I still have no appointment!
I then asked to be sent to the Chronic Pain Clinc and was accepted in a few months to see a pelvic pain doctor. He determined that I was twisting internally and injected botox. I was sent for a Psoas Block, which did not help, but did increase the pain!
For 7 years I had not been able to attend a functions for our youngest son. I decided-somehow-I was attending his Pond Hockey achievement night. There, I met a lady whose mother had died from ARD. She told me how many surgeries she had, and talked about a TPN Port where nutrients were given to bypass the bowel. I was terrified by the story and knew I desperately needed help or that would be my destiny.
I was telling this lady about a newspaper article my aunt had sent me of a young man that was fund raising to go to Germany to have adhesion surgery. My GYN was pretty sure the carbon dioxide gas was the culprit for the return of the adhesions. Dr. Kruschinski, who was the doctor in the article, does not use gas. I had researched Dr. Kruschinski, but with not having worked for 7 years, this was just too much money. My husband had open heart surgery and we had gone 4 years with him not well enough to work, so this seemed like the answer but there was no way we could even borrow the money. I decided that I would write a letter and send it to every non-profit organization I could find.
That next week, I was touched by an angel, Lorellie. She was a neighbor who was aware of my illness. She had already gone to her church and they were planning a fund raiser for me. All my prayers had been answered.
I emailed Dr. Kruschinski and much to my delight, he answered the next day. So I started planning the trip to Germany. Alberta had a devasting flood while I was planning and unfortunately, with so many people without homes, the church had to cancel the fund raiser. Someone heard of my dilemma and offered to lend me the money. This all happened within 2 weeks, so more prayers had been answered.
I spent two weeks at Dr. Kruschinski's beautiful Klink and had my surgery and the second look. All the nurses and staff were so kind. I felt like I was with family. That was 7 months ago. I am thrilled to report, my bowels are functioning and I am on the mend. The adhesions had grown down to the sacrum and pulled it out of alignment, so that is my only pain now.
I think about being ill for seven years, in so much pain, vomiting, not being able to have a bowel movement without severe pain. Dr. Daniel Kruschinski is a hero and should be awarded with honor for his accomplishments. He has dedicated his work to those who suffer with ARD. Dr. Kruschinski has given me back my life! My family and I are thankful beyond words and we will continue to bring awareness to this hideous disorder. We continue to praise Dr. Kruschinski. Dr. Kruschinski, and his lovely wife Christine, continue to answer all my questions and have continued to be there for me. I am truly thankful!
This story was added to the website March, 2014 Bridget:
Hi, i'm 47 yrs old and I have suffered with adhesions for about 15 years. As a teenager, I endured heavy menstrual cycles, severe pains and PMS. After the birth of my son in 1993 (c-section), years later the pains got worse. A couple of doctors ignored my pain; tests were normal. Finally, a doctor said I had endometriosis.
A hysterectomy was performed, and a lot of adhesions were removed. I thought I was free from pain. Years later, I started having severe pain in my abdomen, back, legs and hips. Sometimes, it was difficult to walk or sit, especially if the sciatic nerve start hurting. My stomach would bloat up so bad. I was extremely tired; it has just taken a on toll on me.
This story was added to the website, January 2014. Janie (mother of Laynie): I wish so much I had heard of this sooner. My daughter, Laynie, passed away on December 1st, 2013. She was 4 years old. The cause was a small bowel obstruction due to adhesions.
My daughter was born 10 weeks premature. She was born with a right sided diaphragmatic hernia which she had surgery for when she was 5 days old. She also had a fundilplicatio and g-tube placed (which was removed when she was about 2 years old). We were never told that scar tissue might cause problems. I have such guilt because I didn't know this was happening to her.
Laynie started complaining of stomach pain on Friday, November 29th at about 9 pm. We took her to the ER thinking that her appentix had ruptured. They did x-rays. The doctor said she had gas and gave her pain and nausea medicine. She was still very uncomfortable on Saturday. I thought she just needed to walk around to get the gas out. Her face started to look grayish. I took her back to ER at 3 am Sunday morning. The same doctor from previous night requested a CT scan which revealed the obstruction and the diaghragm re-herniated. She was transferred because the hospital did not have pedi surgeon. By the time we did get to pedi surgeon, he could not help her. 80% of her bowel was no good. Her heart stopped.
She passed away at 1:30 pm Sunday. She had fought so hard through her life, to be where she was. We were prepping her to start public school. I just don't understand why they didn't know what was wrong at the first ER visit. I can't get past it.
This story was added to the website, October 2013. Constance (Connie): Around age 13, I was stricken with my monthly cycle which rendered me bedridden for a week or so with cramping, vomiting, horrible pain, and bowel trouble.
By tenth grade, I had undergone two D & C surgeries. I was advised to have a hysterectomy by the doctor who said I would never be able to have children.
I was always extremely physically active and otherwise healthy. I could run for ever-ride horses, bicycle, hike, swim, and dance all night.
I did have the first of my two children at age 21 and the last at age 23 1/2. I decided to have my tubes tied. Later, while serving in the military, I was diagnosed with endometriosis. I was surviving that one week a month by taking codine, Percocet, anti-inflammation meds, etc.
Then, I had a partial hysterectomy. My heart stopped during surgery and my recovery was much longer than usual leaving me weighing only 90 lbs and living on soup broth. The horrible abdominal pains, cramps, bowel problems all returned.
Six years later, I could no longer endure the pain that seemed to be ripping and tearing the inside of my body. I found a doctor who agreed to perform exploratory surgery. I awoke to him saying "I hope we are still friends" and then he told me that he removed my left ovary due to severe scar tissue buildup.
Then in 2008, I suffered a broken rib and subsequently again in 2009, a crushing injury to my sternum which resulted in the breaking of two more ribs during an on the job training course. Since then I was forced to retire.
My abdominal pain and labored breathing have rendered me basically housebound. I have made countless emergency room visits only to be shot full of pain meds, maybe talked to by a doctor who says you need to follow-up with your primary care doctor. I do, they run the same tests (CT'S, MRI'S, Ultra sounds, X Rays, Blood tests, colonoscopy, stomach acid/bacteria tests, change in diet, etc. year after year.)
One time, I had life-I felt the earth beneath my feet as I soared cross the fields. I galloped my best friend "Blue" into the wind and cannon smoke. I danced, held my children and assisted others...
Now I can barely go for a walk, talk for any length of time or dream for tomorrow...but I want to!!
This story was added to the website October, 2013. Kelley: When I was 19 years old, I was diagnosed with Endometriosis. I had my first surgery and started my first round of Lupron injections. Lupron throws your body into menopause, which ceases your period. Shortly after I stopped the Lupron, the pain came back. About six months later I went in for another endo surgery. When my doctor talked with me after the surgery he mentioned they had found some adhesions and took them down as well. I had never heard of adhesions and it was explained to me that adhesions were actually scar tissue. This was the first time I had ever heard of them and I had no idea that I was entering into a nightmare.
Over the next 6 to 7 years I began the cycle of living with pain, having surgery, Lupron injections, and as soon as the Lupron was stopped the pain would begin again. Each time the surgeon would go in, they would also take down adhesions. I ended up having surgeries twice a year during this time. At one point I was rushed to the hospital, as I started to have horrible pain that felt different than anything else I had experienced. They found I had a large cyst on the left ovary and it had to be removed. So, another surgery. Finally, my doctor felt that we had tried everything that was available to fight the endometriosis and I agreed to a full hysterectomy. I was 27 years old and had not had any children. At this point in my life I had been living in pain so long that I did not have any hesitation in having the surgery and being rid of the pain that endometriosis caused.
I thought this would be the end of the pain. And, for a short period of time, it was. I started having pain again, but with this pain I also experienced extreme nausea and vomiting. Again, I was in and out of the hospital. This was being caused by adhesions (I have to say that I am one of the lucky ones because my doctor always believed that adhesions were causing my symptoms and my pain. Unfortunately, this is not the case with most adhesions sufferers). So again a cycle emerged: excruciating pain, constant nausea and vomiting, countless trips to the emergency room, partial and complete bowel obstructions, long stays in the hospital and surgery after surgery. I never got more than 6 months relief after the surgeries. As time went on, the relief became shorter and shorter.
Approximately 12 years ago my large intestine stopped working completely. I went through numerous tests. I was diagnosed as having colonic inertia. Basically, that means that they don’t know why it became paralyzed. So, I had a subtotal colectomy and they removed all but about 4 inches so that I did not have to wear a bag.
Unfortunately, my symptoms returned, as did small bowel obstructions and more surgery. For the longest time I kept thinking I was doing something wrong during my recovery process and that I was causing these adhesions to grow back. If only I could do it “right,” then this wouldn’t keep happening. It took me a long time to realize that I wasn’t doing anything wrong; there wasn’t anything I could do to prevent this. But, it didn’t stop me from blaming myself. I think the emotional stress and depression is every bit as painful as the physical symptoms. There were so many times that I didn’t know how I was going to be able to live with all the suffering ARD gives you. I hate to admit it, but there were times where I really wanted to die. This was just another gift that ARD gave to me.
A few years after my subtotal colectomy, my nausea and vomiting began to happen all the time–every single day. After more hospital stays and test, I was diagnosed as having idiopathic gastroparesis (fancy way of saying they don’t know why I have it). Since there is no cure for this I began living on a low residue diet and ended up spending month long stays in the hospital on IV antibiotics, TPN, and pain relief. They were able to find a medication (that is not FDA approved) that helps with my stomach emptying. During all this time I still had to go in and have lysis of adhesion surgery. The adhesions would get so bad that I wasn’t able to stand up straight; the adhesions kept pulling me forward. I was unable to move without feeling like all of my insides were being ripped away from my stomach lining. This was always a sure sign that they were getting really bad. I had been living with constant pain for so long at this point it felt normal to me.
A few years ago, I was surfing the web and stumbled across Dr. Daniel Kruschinski. He was the first doctor I had found that specializes in adhesions and was successfully treating them. I emailed him and he got back to me by the next day. I was shocked. I read up on him, his technique, and felt like there was hope for me for the first time ever. I was directed to his patient contact list and I began talking with some of the women who had been to him. While each woman had their own experience, the one thing each said was that they would do it all over again because these surgeries with him gave them all an increased quality of life.
OMG, I felt like there was a chance that I wouldn’t have to suffer for the rest of my life. I talked with my family and my husband and everyone was so excited. The only downside was that he was in Germany and insurance wouldn’t cover surgery with him. My family assured me that we would make this work. Unfortunately for me, within a week of finding him, I had another bowel obstruction and ended up having to have surgery. So, I sort of filed him away for the next time. Because, at this point in my life I knew there was going to be a next time-I just didn’t know when it would be.
The last few surgeries in the United States were so hard and I didn’t receive much- if any-relief from them. The majority of my surgeries have been full laparotomies. The first few were horizontal incisions and they were done by my bikini line so the scars weren’t too bad. It got to the point though they weren’t able to reach everything they needed to, so the rest have been vertical incisions. Needless to say, my stomach looks like a road map!! I have had a total of 21 surgeries in the United States.
2011 was the start of what would become the worst two years of my life. I was getting sick and sicker. Nobody wanted to operate on me anymore unless it was life threatening. I was in and out of the ER frequently due to partial bowel blockages. But, I couldn’t get admitted because they weren’t full blockages. Up to that point, my quality of life kept going down and down to the point of basically being bedridden off and on. The pain was unbearable – the nausea was unbearable – the vomiting was unbearable.
My diet consisted of Slurpee’s because it was about the only thing I could keep down. I prayed that God would bring me home because I couldn’t bear living like this anymore
I contacted Dr. Kruschinski again and sent him my operative reports from the last few surgeries. He agreed to help me. This was in September of 2012. The hardest decision for me was feeling like I was worth spending the money to go to Germany. My husband told me that we couldn’t afford for me not to go. I was so afraid to get my hopes up – my expectations were very low, but I did have some hope.
I went to Germany in October of 2012. He was able to take down 80% of my adhesions. 20% were in the small bowel and it would have risked my life to try and get those. I knew after the first surgery that something was different inside. I remember standing in my room and lifting my arms above my head and I felt something. I panicked at first because I thought I felt pulling but then I realized that I felt my abdominal muscles. OMG, I can’t remember the last time I could feel those! Everything felt loose – I could actually twist and move without hurting.
It’s been over a year since I went to see Dr. K in Germany. It was so difficult for me to believe the women who had gone before me that these surgeries really did bring them relief but now I was one of them who was experiencing this relief. What they said about it drastically improving the quality of their life was true. I am experiencing this for myself.
My life today is drastically different. I’m not perfect, but the quality of my life is better than I could of every hoped for. I have a friend who calls it her “new normal” and I think that is the perfect description. I have not vomited one time since I went to Germany. I don’t experience daily nausea. I don’t have unbearable constant pain anymore. Most of all, I am able to participate in my life again. I get to do all the things most people take for granted – cooking, laundry, etc. (still don’t like folding it though lol). If I say I am going to be somewhere, I actually show up. I don’t have to worry about being too sick to do what I say I am going to do. I get to physically and emotionally show up for the people I love.
I am so unbelievably grateful to my husband and family for all of their support - to Dr. Kruschinski for being such a gifted surgeon and not giving up on us adhesion sufferers - to the women on his contact list who shared their stories with me - to the people on “Lets find a cure for adhesions” facebook page for opening their hearts to me and sharing their lives – whether it’s a good day or not - to my “healthy” friends who kept on loving me even when they didn’t understand.
To anyone who is suffering with ARD, I promise you there is hope out there. If anyone reading this has any questions or would like to talk, please don’t hesitate to email me at: firstname.lastname@example.org. *See Kelley's video below:
Note: This story was added to the website July, 2013. Corry: Ik zal in het kort mijn verslag doen over mijn operatie. In 1992, 1993, 1996 en in 1998 heb ik een sectio caesarea ondergaan. Bij inspectie van de buikholte werden er geen bijzonderheden gezien, met name geen adhaesievorming. Er is toen, tijdens de vierde sectio caesarea routinematig een sterilisatie verricht, middels partiële tubectomie beiderzijds. Daarna heb ik eigenlijk altijd buikpijnklachten gehouden. Een en ander resulteerde in een opname begin 2000, waarbij een volvolusligging van het coecum werd gezien. Deze is toen goedgelegd en er is tevens een appendectomie verricht. Er wordt gesproken over adhaesievorming tengevolge van de vorige operatie. Het gevolg van de laatste operatie, is problemen met de darmperistaltiek. Mijn dikke darm is gedeeltelijk aan iets anders vast gehecht door adhesievorming. Ik heb medicijnen, te weten, movicolon en hedera helix compositie druppels. Dit voor de darmpassage, aangezien ik anders chronisch verstopping heb. Tot op de dag van vandaag blijf ik me afvragen of een doktor mijn probleem kan "genezen".
With help from Christine, the above has been translated to English:"I just want to give a short report about my surgeries. In 1992, 1993, 1996 and 1998 I had c-sections. During these surgeries and the inspection of the abdominal cavity, there were no reports about adhesions. When I had the 4th c-section in 1998, a partial tubectomy was also performed. Since this surgery, I have abdominal pain. In 2000 my symptoms got really bad and I had another surgery. During this surgery I got an appendectomy and the surgeons also found adhesions as a result of the former surgery in 1998. Since that, I have severe problems with constipation because my bowel is partial fixed on the abdominal wall. I have to take several medication and laxatives like „Movicolon“ and „Hedera helix“. I am always questioning myself if there is any doctor who can heal me.
Note: This story was added to the website July, 2013. Sharon: I am a 49 year old Alaska native woman who was finally diagnosed in 2012 with massive pelvic adhesions. It started in 1995, five years after my second C- section. I also had appendix taken out and a hernia repair in my history.
I was told by my gyno doc that if it had been found the first year, I wouldn’t be going through what I am now. I hope these stories will bring awareness to pelvic adhesions and help a person before it gets bad. It seems like it came out of no where. One day I started having pain in my right groin. There were days that it didn’t bother me the first 10 years. Gradually I found out the every day things that would make it worse. When I was at my worse, I would cry out in pain. It came to be such that my family and friends just ignored me crying out because it was normal for me. What was embarrassing, was crying out in pain in public places. I would have people gathered around me asking what was wrong. I was seen by doc after doc in the Alaska native hospital. Even psychiatric docs. The hospital sent me to at least 4 outside clinics during the years including pain management, sports medicine, and chiropractors. After being seen by a new doc I was told I was an enigma and there is nothing else they can do.
I went thru many type of meds, nerve meds, antidepressants, inflammation meds, different types of pain meds and none would help 100%. I had a couple more surgeries that a doc thought was causing the problem but none was ever done using laparoscopy. I had every test done including xrays, ultrasounds, , full body scan but again laparoscopy was not one. Finally, in 2012 I had to have my tubes and ovaries taken out because of a rare type of breast cancer. I moved to Minnesoda during this time and that is when a laparoscopy was done and the ob doc found the adhesions.
I was so happy to have found what has been causing me all this pain since 1995, but that was short lived. Although the cause was found, getting it fixed is another ball game. Finding a doc that knows about them is another problem. I have since moved to Texas and being on medical financial help, I am limited to what doctors I can see. So far every doc I've met tells me “I've heard of pelvic adhesions, but I need to do some research.” Of course they never do. I bring paperwork into them that I have researched. I am still looking for answers to help me with this pain.
I am wheelchair bound for most of the day now. Since my laparoscopy, the pain has increased to my left side now and I can really feel the pulling in my abdomen. From what I read, I may be one of the lucky ones so far in that it is not obstructing my bowel. Hmmm...one of the lucky ones. My pain is 24 hours a day now! It's kind of like a bad stomach ache all day and night. If I eat too much, walk too far, stand too long, sit too long, then I get these lightning-type pains that last for hours or days. So, most of my day is spent lying in bed with my legs propped up over my chest. That seems to help. The pain meds don’t work 100%, but they do help when I'm at rest. Im still trying to find answers. I want to try and help someone with pelvic adhesions before it gets as bad as mine.
Note: This story was added to the website January, 2012.
Laura: At 17 years old, I began bleeding, which lasted 21 days. I started looking for help, as I was having a lot of pain, thus I knew something was terribly wrong. I learned an ovarian cyst had burst. I had laparoscopic surgery and the doctor found that my fallopian tubes were full of scar tissue (adhesions). He informed me that I would not have normal periods, nor would I be able to conceive a child on my own. Three weeks later, surgery was performed to clear my tubes. This surgery was done via a bikini cut, which is similar to a c-section incision. I was also started on clomid to begin ovulation. A year later, I gave birth via c-section to a full-term, healthy baby girl. I was then told I would not be able to conceive on my own and that I should not worry about pregnancy. However, ten months later I conceived and gave birth to a healthy baby boy (thank you, God!) also via c-section. Sadly, I continued to have abdominal pain. So, again, I had to look for help. Fifteen months after the birth of my son, I had a partial hysterectomy. That was in 1997. After that surgery, I didn't have too many problems, but I did have pain inside, especially when I had a bowel movement; I would completely buckle over from the pain. In 2009, I began to have more severe pain. I lost several jobs due to illness. Again, I learned that an ovarian cyst had burst. I was on pain medication and anti-diarrheal meds all the time. The rupturing of the cyst landed me in the hospital for three days. During this time, I learned I had adhesions. In September, 2010, the doctor removed the adhesions but explained to me that the adhesions were very bad. I had a slow recovery, but everything seemed fine until 2011. One evening I went out to a concert and all was fine. The next morning, however, I was suddenly struck down in severe abdominal pain. Since that day, things have only gotten worse. I now not only have pain with bowel movements, but also when I urinate. Bowel movements feel as though my insides are being pulled completely apart! I cannot be intimate without experiencing pain, as adhesions have also affected my vagina. I cannot lift my grandson or one of my precious twin nephews. Attempting to lift anything over a few pounds causes severe pain. I cannot stand for any length of time and I have difficulty and pain when attempting to climb stairs. Something as simple as vacuuming can cause severe pain. I cannot even enjoy a drive that is very long, as riding in a vehicle also causes more pain. I have not been able to work since 2009 and I currently take around 6-T#3 a day, as well as other pain meds. This is not the life I had planned. I am currently waiting to have another surgery, which will be my second, to remove the adhesions. I have been told that two doctors will perform this next surgery.
Note: This story was added to the website January, 2012.
Chrystal:It all started 2 years ago after giving birth to my angel, Jocelyn Rose, via emergency c-section. I was suddenly debilitated from upper abdominal pain. I am unable to go to the bathroom without obscene amounts of magnesium citrate and suppositories. I deal with constant nausea, am unable to pass gas, have ripping bloating, I am unable to eat solid foods, and I look 7 months pregnant! These are just a few of my many symptoms, yet no doctor cares and no tests have been performed except for a CT, which of course, came back completely normal. I know ARD is my problem! I could type on and on while screaming out in pain and agony from my life that I'm missing out on, but it doesn't matter. It doesn't matter to the health care professionals, then it shouldn't matter to me?! This IS my life and I want RELIEF!!! But I'll never get relief...I'll just become another unheard of ARD death statistic! Thanks doctors!
Note: This story was added to the website November, 2011.
Michael: I am 37 years old. My problems began March, 2011, when my physician diagnosed appendicitis. I was admitted to the hospital and underwent laparoscopic surgery to remove the appendix. Abdominal pain started immediately, only the second day after surgery. The doctor dismissed this pain and said it was a normal occurrence after surgery. On the third day after surgery, I was dismissed. Then, four weeks of complete torture! Pain occurred after every meal and lasted for hours. Several times I went back to the hospital, however, they refused to do anything until, in April, I was brought in as an emergency case. Then, they found an intestinal obstruction. I was taken in to emergency surgery and underwent laparoscopic surgery, once again. After the surgery, I felt relief from the pain. No one told me the cause of the pain, so I thought my problems were over. Five weeks later, the pain was back!
I decided I should try another hospital. There they told me I had gallbladder problems. So, in August, I had a third laparoscopic surgery to remove the gallbladder! After surgery, they told me of my adhesions and explained they had removed them along with the gallbladder.
Finally, I knew what had been causing my pain. They told me all about adhesions-as far as they knew, that is-and explained that no doctor has a weapon against it. They explained that surgery is the only way to remove adhesions, but surgery brings with it a chance of more adhesions.
After the last laparoscopic surgery, I felt better for the first two months. I hoped the pain was gone and would not start again. However, I was wrong. Today, I withstand the pain with pain medication. I also try not to eat much with the hope I will not get another intestinal obstruction again. The doctors advise no further laparoscopies due to the risk of getting countless more adhesions. Never before in my life had I had abdominal problems.
Note: This story was added to the website September, 2011.
Rosemary: *Note: Though my adhesions and pain may have started after appendectomy surgery, my health tumbled completely out of control in 2000.
The year is 2000. My husband retired April 1st of that year. On April 4th, I was told that I had cancer. In one phone call, all of our retirement plans went up in smoke.
So started twelve long years of absolute HELL.
On May 31st, I had a total hysterectomy for endometrial cancer. I awoke in the hospital screaming. (I have to say, I screamed on and off after that day; that is, until I found Dr. Kruschinski). To explain: I was in pain after the total hysterectomy. I had every test in the book to find out what was causing my pain, but nothing showed up. They did a laparoscopy through the naval, but could find nothing. The original hysterectomy ran left to right across my lower belly. When the laparoscopy didn't show anything, they decided to open me up again, only this time from naval to pelvis. When I awoke the doctor said to me. "I can find nothing that could cause the pain that you describe." They brought in other hospital specialist’s to look at me, but no one could find what was wrong. Finally, as they didn't know what was wrong with me or what to do about it, they put me on strong pain killers (which were not at all helpful) and sent me home.
My family doctor put me on morphine, but only enough to bring the pain down to a manageable level, but I had no quality of life. I could not walk or sit for any period of time without the pain reaching unbearable levels. I spent the next three years lying in a recliner 24 hours a day, popping painkillers and often crying my eyes out. On occasion, I would be admitted to the hospital for a couple of days and would have more tests to see if they could find anything that had been missed before. Of course, they found nothing. Then, I would be pumped full of morphine and sent home to my recliner. During the first 7 years I wore out 4 reclining chairs! I could not take care of myself and had a "Home Care Worker " come in every day to help me bathe, clean our house, and do other chores as needed.Throughout this time, I was rushed by ambulance three times to the emergency department for suspected bowel obstructions, only to have the same results as before. During the following few years, I was sent to the gastroenterology department, where one specialist did his tests and found that I had Crohn’s disease . He prescribed the appropriate treatment—pills. When this did not help, I was sent to another GI specialist who did his tests and diagnosed that I was allergic to milk products, and again, prescribed the appropriate treatment—pills. When this did not work, I was sent yet again to another GI specialist who was sure that I had bowel polyps, and again, prescribed the appropriate treatment—more pills. Again, it did not do any good what-so-ever! I saw most of the specialists in the hospital and had every test they had to offer that bore any relationship to my described symptoms. In most cases, the specialist wanted to do their own tests and not rely on the same test performed by somebody else, so I repeatedly had tubes put down my throat and up my backside. I had MRI's, Cat Scans, Barium X-rays, X-rays for this and X-rays for that. I had my urine tested, my poo tested and I was put on special diets. I took so many pills with so many bad side effects—many of them giving me diarrhea—thus I had to know where ALL of the public toilets were located in our city before I dare go out to a doctor’s appointment, or anywhere else for that matter. This went on for a few years. I was sent to see a Dr Brown, the "BIG WIG” in pain treatment in our local hospital, but all he did was lecture me on living with pain! This is not something I wanted to hear at all! I was sent to Toronto to the Wasser Pain Hospital, a world renowned hospital for the treatment of all kinds of pain. There, they decided that I needed Botox injections (which our Insurance did not cover). We asked twice about any side effects, but they did not seem to want to answer that question, so that ended our relationship with the Wasser Hospital. You name it and I had it. When all of these treatments didn't work, I was told that it was in my head and they gave me an appointment to see a psychiatrist. After months of treatment by them, and some devastating effects from some of the pills they gave me, they came to realize that I was not crazy either!
Not one single doctor mentioned adhesions at any time!
Finally on one visit by ambulance to the emergency department, a fairly young doctor, (a resident, I think) saw me, read my file and asked me to lie down and lift up my head. The pain almost made me loose consciousness. He then said, "I think that you have myofascial pain. Everyone looked at him as if he had two heads. None of the other doctors or my husband, or I, knew what he was talking about. But, he turned out to be right. By this time, my family doctor had increased the morphine I was on and finally I had some pain relief, but it took very large doses. By then, I was taking it "as needed." Then, we had a new doctor open a new Pain Clinic in our hospital. I was very lucky to get an appointment to see him. He agreed with the diagnoses of Myofascial Pain and made an appointment to use the operating theatre. He gave me injections (transvaginal trigger point injections) into the internal muscles that he thought were affected. And, THE PAIN STOPPED! He was injecting me with anesthetic and it worked like a charm. So, for the last 6 or 7 years I continued to get regular injections. For the first couple of years, he did the transvaginal injections, but as time went on, he was able to inject straight into the belly. Then, last summer he told me that for some time he had thought that there was another underlying problem, as well as Myofascial Pain—namely, adhesions. He said he could feel them inside. After a few weeks, he told us about this clinic in Germany where they deal with adhesions and he recommended that if I could afford it, I should go to Germany. He said I should see a Dr. Kruschinski to get the surgery to clear up the adhesions. He said the best part was that the doctor would use a spray shield at the end of the surgery and that would prevent the adhesions from coming back.
So, we looked into it and finally decided that even if we had to foot the bill ourselves we could not afford not to go. We contacted Dr. Kruschinski, and there began the most amazing hospital stay I have ever been a part of, or heard of, for that matter. Because of my pain and problems with walking and sitting for any length of time, we arranged with the clinic to have someone meet us and drive us to Braunsweig from the airport in Frankfurt. On the flight over the Atlantic, because I was sitting for so long, I had to get my husband to give me an injection of morphine (I had them straight into my belly) and the flight attendants were wonderful in making sure that I had all of the privacy I needed.
At the airport, we were met by a very nice young man with a big sign with my name on it and that is where the amazing part started. This young man took all of our luggage and put it into the car which just happened to be a Mercedes S J, and we started on our journey to the Clinic am Zuckerberg. As we were getting nearer to Braunsweig, his phone rang and it was Dr. Kruschinski wanting to know how long we would be before we arrived. Our driver told him about 45 minutes. A while after that, the phone rang again and we could hear the driver say about another ten minutes. The driver told us that Dr. Kruschinski was waiting to welcome us to his clinic. (He should have gone home a couple of hours earlier, as it was getting late. I found it amazing that he waited for our arrival.) We were taken to our room (the driver took care of getting our luggage to our room). All of the staff were just wonderful, they just could not do enough for us. The hospital was spotless; so clean you could eat your lunch from the floor if you wanted! The operating rooms were also spotless with all of the machinery just gleaming. My surgery went very well, but it exhausted Dr. Kruschinski! I had so many adhesions, mostly attached to the bowel, and he had to go so very slowly, as he was concerned about cutting into the bowel. So, the surgery took him a lot longer than he had anticipated. After 4 hours of concentration, he was so exhausted that he asked me if it would be okay if he briefed me in the morning. I agreed that it was time for him to rest. There was not a thing that Dr. Kruschinski did not do for me, including one night around 1 o'clock in the morning when I had a morphine withdrawal problem. The nurses just phoned him at home. When I apologized to him the next day, he told me that as long as he has a patient in the hospital he was available to them 24 hours a day. I was privileged to meet the most attentive, caring, thoughtful, meticulous, and compassionate man it has ever been my privilege to meet. He simply could not do enough for all of his patients that were there when I was there. We met patients from all over the world who had come to seek his help. We made friends with folks from the U.K., The U.S.A, Nigeria, and Sweden while we were there. It would seem (although I do not know for sure) that he handpicks his staff. I have never seen a better nursing staff. They work as a team and all like each other very much. They all look immaculate and are very professional, as well as friendly and caring. I share all this because if you have to have surgery, I highly recommend Dr. Kruschinski and his clinic. My adhesions have been taken care and I still have injections into the belly for myofascial pain. In this last year, I seem to be getting better and better. For the first time last weekend, I went to my daughter’s for the weekend. Although I took my scooter, I did NOT use it and that is the first time in eleven years! So, I feel that at last I am on the road to complete recovery! There is hope for all of us if we just keep trying to do our best and not lose track of the fact that we have to help ourselves, as well as do what the doctor tells us and that way will lead to recovery. However, we also often have to fight to find a doctor(s) who will truly believe us and help us.
For all of you out there with pain problems especially in the belly with adhesions, please do not give up. There is help out there in the name of Dr. Kruschinski, a better surgeon you will never meet! And, the most caring doctor. He is a marvelous and decent human being who knows the limitations adhesions cause. I thank God for him every day! Frequently, my phone rings from people who are in trouble. They are in a lot of pain and have been around and around the health systems and still have not found a doctor who can help them. I cannot tell them fast enough about Dr. Kruschinski and what a wonderful experience I had finally getting my adhesions fixed, and just plain old getting better! It is so wonderful to see a doctor who knew what he was doing and who cared enough to accept people from all countries. On the day we left the clinic, we went back to Frankfurt Airport the same way we had come—in the clinic’s Mercedes. Oh, I felt like a queen, but what a surprise when we went downstairs to get into the car, all of the nursing staff and some of the other people that work there, were all on the steps of the front door awaiting to send us on our way with hugs and in some cases kisses! Some of them had waited after their shift had finished and others had come in earlier than needed just to wave good bye to us. Indeed, it felt as if we were leaving behind family—truly wonderful people. I hope those who still need an answer are helped by my story. I love to share the fact that you can suffer so much that you think your life will soon end, but when you meet the right doctor(s), your life can truly mend!
Note: This story was added to the website August, 2011.
Melissa: I became ill at age thirteen. I woke up one day to abdominal pain, nausea and vomiting. The abdominal pain was excruciating. As days passed, I only grew worse. Originally, my mom thought I had a bout of the flu. However, each day I grew worse. After two weeks of pain and an inability to eat anything without vomiting, I was admitted to the hospital. Every kind of test imaginable was performed, but nothing led to an answer. Eventually, I was admitted to another hospital where a pediatric gastroenterologist performed an upper endoscopy. He diagnosed Crohn's disease. I was placed on 60mg. of prednisone per day and sent home. The prednisone seemed to be my miracle, at least at first. For two weeks I was able to eat and gained back some of the weight I had lost. However, soon the monster returned and the prednisone had little effect on the pain, nausea and vomiting. Several times I thought death was near, as the pain was unbearable. Years later we learned those episodes were full blown bowel obstructions due to adhesions. At the time, however, we were only told this "problem" is a result of the Crohn's disease.
My mom and I joined a Crohn's support group, only because my mom insisted. I only wanted to stay at home and be left alone, as pain ruled my life. It was at the Crohn's support group that mom began to believe I had been misdiagnosed. Mom was also studying a medical manual about Crohn's which also gave indication that I may have been misdiagnosed. Those two factors led us on a journey that no one would even undertake if they knew how trying and difficult it would be to finally get an answer.
Honestly, after ten years had passed, I came to the conclusion I would never be well. In fact, as I grew older and into an adult, I really couldn't even recall what it felt like to be healthy and have a life without pain. My mom continued the fight for me, as I was unable to battle this monster on my own. In 2002, mom asked a surgeon to do exploratory surgery and he agreed. (Other surgeons' had refused her requests and would even become angry when she asked because they said she was in denial of my Crohn's diagnosis.)
That surgery revealed massive adhesions on my female organs; portions of my intestines were stuck on my female organs. The doctor said I would be well, however, I knew immediately after surgery I was not well. We then flew to California for another surgery. That surgery was a nightmare, as the surgeon lied to us about having a bowel surgeon present for the surgery. (I had already been taken back for surgery under the premise that the bowel surgeon was running late.) Of course, that surgery failed as well, as I had been exploited. I was only a means of making money for the doctor. That particular surgery left me in such unimaginable pain that I was ready to exit this world. I was done!
Then, mom found Dr. Kruschinski in Germany and contacted him. My mom and dad made almost all of the plans before they even told me, as they knew I would not want to go. They were right! I thought my mom had lost her mind! GERMANY?! If I couldn't be helped in the USA, how could I be helped in Germany? I did not want to go! Three weeks later, we boarded a plane for Germany. I was sick as we boarded, of course, but in excruciating misery by the time we landed.
When I met Dr. Kruschinski, honestly it was the first time I had ever felt a ray of hope. He was so exuberant to help me that I really wondered if he was for real, especially for a doctor! ha! But, I was still scared. Two days later, however, surgery was over and immediately I could tell he did something inside me that the other surgeons had not done. It was a strange feeling, a soreness, but not the typical "dying-after-surgery" feeling I had dealt with from the other surgeries. I was able to move about two hours after surgery. Later, I was able to eat without nausea and vomiting. Did I dare hope? Honestly, I was terrified to think I might be well, as I was so accustomed to misery. (It is scary to get your hopes up, so I didn't dare!) That was in April of 2003, and, thank God, I have been well since. I thank God everyday for answered prayers, even though they were a long time coming. I thank God for Dr. Kruschinski, as he has looked beyond what doesn't work for adhesion sufferers and he has figured out what does work. I am thrilled to be a recipient of his hard work and out-of-the-box thinking.
My mom came home so excited for me that she began sharing my story with others. Eventually, she wrote a book about my illness, as she wanted to help others who may find themselves facing what we faced. I thank God that I have a mom who fought for me and never gave up hope. She is my angel on earth! I thank God for my dad, brothers, and sister. They all rallied around me and tried so very hard to see to it that I had a somewhat "normal life," even in the midst of such misery and suffering. I hated being a burden to them-though they always said, "You are a blessing, not a burden!" See, that is the kind of family I have! I am beyond blessed! My prayer is that anyone who is ill can have such a family, as an ill person needs someone to lift their weary head, to stand in the gap. If you suffer from adhesions, you have my sympathy. You are in my prayers. Maybe one day the USA will have a doctor like Dr. Kruschinski. He is a light in a dark place, making a difference in an illness that the majority of doctors just do not understand.
Note: This story was added to the website August, 2011.
Cherie: My story started when I was a teenager some 30+ years ago. Yes, endometriosis was the start and I have been suffering ever since. I don't have the money to get to Germany and frankly I don't know that I could even make the trip or if I could even be treated since I feel that I am so complicated!! I have had over 14 major abdominal surgeries and have been told that I have a frozen abdomen. Suffer with ongoing temporary bowel obstructions and just generally have very little life beyond my own little world called home!! In spite of it all I try my best to be strong and enjoy the time I am given with my wonderful supportive husband and continue to pray for my miracle. God Bless you all and all who suffer from this dreaded disorder/disease!!
Note: This story was added to the website August, 2011.
Carrie: I was born with dueodenal atresia and had my first surgery the day I was born and then again at 3 days old for a revision. At 17 years of age, I had surgery to remove adhesions because I developed an intestinal blockage. In 2008, I developed chronic pain and was admitted several times with various intestinal complications. They elected to do surgery and found that I had extensive adhesions along with volvulus, a contained perforation and diverticulitis. They then revised my roux-en-y, which caused an incurable ulcer at the sight of the connection. This lead to me needing removal of 80% of my stomach in 2010. This has now caused malnutrition and absorption issues and 2 more surgeries to correct the original connections. Reading through my post-op reports it states: " We spent 45 minutes taking down adhesions to free the anterior wall. There were extensive adhesions. Specifically, the right upper quadrant was densely adherent to the anterior abdominal wall. The right lobe of the liver was densely adherent to the anterior abdominal wall, as was the patient's duodenojejunostomy."...etc. And here is more text: "We completed the lysis of adhesions which was extensive and undertaken in an open manner. This took several hours in total." This how the operatives read, yet the doctors have continued to tell me that adhesions was not my problem and that adhesions do not cause pain! Yet, look at my operative reports! I am so mad and frustrated. I am back to not being able to eat more than 5-6 bites and my weight is back down to 96lbs. I am in chronic pain. Even with the vitamin supplements, my energy level is very low.
Note: This story was added to the website August, 2011.
Christine: When I was 16 (13 years ago), I got appendicitis with all known symptoms. Three doctors said it was only gastric flu. One doctor asked me if I had love-sickness or a test in mathematics at school because for some "young girls" this would make for a stomach ache. I was given fever-reducing medicine, but my condition became worse with every passing day. My parents always asked if it could be appendicitis, but the answer was: we are the doctors and we know it´s not! And you are just a little hysterical parents. I lay semiconsciously in bed, and the pains that were so bad that I was screaming into my pillow. I know today that it was the moment when my appendix ruptured. At day 5, they decided to do surgery to rule out appendicitis. At that time, my appendix was found to be perforated. My abdomen was filled with pus and excrement. I had serious peritonitis. If that surgery had been just 2 hours later, I would have died that day (March 17th, 1998, is my second birthday!) Some time later, the daily pain continued. I could not move because of this pain and felt so ill every day. My intestines didn't work correctly and I could hardly eat or drink. In addition, I had rectal bleedings because my bowel was locked down. In that year, 1998, I was at the hospital seven times, but no one helped me. And no one understood me! They said there would be adhesions because of that distinctive peritonitis, but they would do no surgery before ileus because they said: "It wouldn´t pay to do it before!" I was told I should have to accept my illness. They sent me to a psychiatric doctor, as they claimed I was depressed and the pain was mainly in my head! I started doubting myself, my symptoms, my pain. I told myself I am wrong, even if I couldn´t move because of pain. In this situation, it is the worst thing someone can do to you, to say the pain is in one's head!
In 2000 and 2004, I had bowel-obstruction and laparotomies again. After that, I had abscesses in the surgical areas. I had no improvement. Of this time, I wanted to be finished with doctors because nobody believed me and no one wanted to help me. I had to justify myself always because ARD is not taken seriously and recognized by most doctors. To go out of the house or to try to work, I had to take many analgesic tablets. I suffered from permanent pain 24-hours a day and had abdominal cramps. To have any digestion, I had to take laxative and enemas. I had permanent nausea. I vomited after every meal and after every drink.
My father looked for help everywhere and he came across Dr. Daniel Kruschinski. I contacted him and described him my problems and he immediately believed me! I got an appointment very quickly and he solved the first adhesions in 2 gasless-lifting laparoscopies in November 2009. My whole abdomen was full of adhesions and the organs had tightly grown into each other. During the operations he couldn't see my uterus, ovaries etc. because they have grown so over in adhesions. Sometime, this still must be operated because I have what doctors call "frozen abdomen". I still know how he said after the first operation: "What have you brought us there?? A catastrophe belly!" in January/February 2010, Dr. Kruschinski operated on me further, as this condition is not rectified in one surgery. No other doctor would have touched me, as they turn away one who has frozen abdomen. In October 2010, I had more surgery with Dr. Kruschinski. I have now finally achieved a status in which I can eat and drink without having to vomit now. I even have digestion by myself! The pains are not completely gone, but what is still there is much more tolerable than before. This is very much a gigantic present for me that I have never expected! I am on the most right track to get my life back!
Note: This story was added to the website September, 2011.
Angela: At the age of 19, my appendix ruptured causing peritonitis. After the appendectomy, I complained about abdominal pain but my concerns were dismissed and the explanation given that my body had gone through a lot and that I was healing. Every two years, I was admitted into the hospital for severe abdominal pain from what I was told to be ovarian cysts, fibroid tumors, or endometriosis. I have endured approximately 20 hospitalization and 18 surgeries, including open & laparascopic surgeries. It was not until my 5th surgery my surgeon told me that he would be excising some adhesions, but not to worry. Never was I ever informed that adhesions can and will grow back and that each time they grow back the adhesions become thicker, denser and may cause debiliatating symptoms. The adhesions have compromised my female organs causing a hysterectomy before the age of 40. I have had multiple intestinal obstructions with surgical repair and have partial intestinal obstructions several times a year which seem to resolve themselves. My symptoms vary from abdominal tenderness, severe abdominal and back pain, chills, gastrointestinal upset, lethargy & sleepiness.
In 2007, after intensive research on the internet, I found a facility within another state that specialized in the treatment of adhesions. I immediately contacted the medical director by email. Within a short period of time, I received a call from the medical director. After giving him detailed information, which included explaining that I had a frozen abdomen, he suggested I send him my medical reports. A few days later, I received an email stating the medical director agreed to take me on as his patient. He wanted to begin the process of me coming to his facility for surgery to remove the adhesions within my frozen abdomen. Unfortunately, my insurance at that time was not participating with this out-of-state facility. Because I did not have the $32,000.00 cash for the surgery, I was unable to be seen by this provider. It was not until 2010 that I was able to go to this out-of-state adhesion facility. My insurance was participating with this facility, but this specialist insisted that I pay a down payment of $1,200.00 prior to surgery. So, not only did I have to pay out of pocket expenses for roundtrip airline ticket, hotel accommodations, transportation and meals, but also give this surgeon money prior to surgery. This was the last of my savings, as I am out of work out on medical disability, so my income has been greatly decreased.
I met with the surgeon two days prior to lysis of adhesions. He was very professional, kind, and reassured me that he had performed many surgeries on difficult frozen abdomens. Surgery day finally arrived. I was ready to regain my health and life back. I was put under anesthesia and it seemed like only minutes when I awoke. I was told by the surgeon that the surgery could not be done because I had a frozen abdomen! I couldn't believe what I heard and thought I was hearing incorrectly! When I questioned the surgeon about why he didn't remove the adhesions, I was told because it would not be beneficial to me to have the adhesions removed.
I can honestly say that I was in shock! I felt like I had been robbed. Robbed of the adhesions not being permantly removed from my body, robbed out of my last bit of savings and lied to. Now, it's another year and I am still struggling with the adhesions. I am still being hospitalized for partial intestinal obstructions, severe abdominal pain, back pain, severe constipation, nausea, vomiting, or intense abdominal soreness.
I truly believe my last hope is to be seen by Dr. Kruschinski of Germany. I have heard many great things about his technique removing adhesions from a frozen abdomen. I have read medical journals about his use of "Adhesion SprayShield Gel" and his success rate is over 85%.
Unfortunately, I am unable to afford the surgery in Germany and after mulitple levels of appeal, my insurance company continues to deny coverage for surgery in Germany. Ironically, they continue to pay a percentage for ER and hospital admissions, leaving me to pay my portion of the medical bills which is causing me to be bogged down by medical debt. I just want to be healthy and whole. I want to be able to have my life back; I want to be pain free! Update! http://enjoylifegirl.blogspot.com/
Note: This story was added to the website July, 2011.
Cindy: My first bout with ARD was in 2005 after a hysterectomy. I was in and out of the hospital from December 05 until May of 06 when I had an obstructed bowel. I then had surgery again in March of 2010 and again February 2011 for adhesions. The doctor said he did not want to do any more surgeries after the last one. I sure hope it does not come back. He put a film over were he cut to hopefully not have the adhesions come back. I have had so many tests and procedures trying to figure out what was wrong before they found out it was adhesions.
Note: This story was added to the website August, 2011.
Emma: First I knew of adhesions was following a laporoscopy last August - they found a load...ovary to chest & back and across my pelvic area......cause...unknown! I am awaiting another adesiolysis in September.
Note: This story was added to the website July, 2011.
Barbara: I had been dealing with what I like to call Phantom pain (because no one knew what it was) since 2000. In November 2008, I underwent an exploratory Laparoscopy. Adhesions were found around my left ovary and Sigmoid colon. In May 2010, I had a second Laparoscopy which revealed the Adhesions had reformed around my Sigmoid colon attaching it to my pelvic wall. I am praying for an answer here in the USA for all ARD sufferers.
Note: This story was added to the website August, 2011.
Sarah: I was 20 when i had my appendix removed. And, for a few weeks after, the pain was unbearable. I was sick, couldn't go to the toilet, so I was taken back into the hospital and put on IV antibiotics for 5 days. I hoped this would be the end of it, but for 2 years i was speaking to my doctor once a week. Still complaining of abdominal pain. I was getting really bloated at times. I couldn't eat much, as it caused me so much pain. I was told it was IBS and was sent for a colonoscopy to double check. That came back clear, BUT I was still told it was IBS. So for those 2 years I was trying different painkillers, diets, anti-spasmodic drugs, but nothing was helping.
Eventually, my doctor agreed to send me for an ultra sound scan. This showed I had a mass on my right ovary. As I had been suffering for so long the consultant decided as it was only a cyst, they would do surgery to remove it and that should be the end of it. I had the surgery Dec 2006. All I remember when I was coming around, was the surgeon telling me there was good news and bad news. The good news was there was no cyst. The bad news was all my pelvic wall and fallopian tubes had been covered in adhesion and one of my fallopian tubes had to be removed, as it was so bad. I was then told having children would probably never be possible for me, naturally. All this at 22.
Again, I thought it would be the end of it. But for the last 5 years i have still been suffering. I have had 2 more laparoscopies to remove cysts off my overy and to remove more adhesions in my abdominal and pelvic area. Neither have been succesful, so I have currently just finished my 2nd course of hormone injections to see if that will stop anymore growth, though I can safely say I'm still in the same pain as I was before. I'm still taking painkillers everyday, along with anti-sickness pills and tummy 'protectors'. I have also lost over 2st in the last 2 years from not being able to eat properly, and am now down to just under 9st. I try my hardest every single day to lead a normal life, but those who suffer from ARD know that it's just not possible. I just pray that they will find a cure for this so one day I can actually live my life, instead of just existing! My thoughts and prayers are will my fellow sufferers, they are all such a big inspiration to me. Together we will fight this!!!
Note: This story was added to the website August, 2011.
Grisel: I was a normal, healthy woman but nineteen years ago I suffered a punctured intestine as a result of a simple laparoscopy procedure. A few months shortly thereafter the unbearable pains started; this led me to have a radical hysterectomy at the age of thirty. The doctor found that I had endometriosis, as well as adhesions, which probably had resulted from the previous surgeries. Unfortunately, my time of bliss and relief from pain was short lived. A few months after that procedure, I started having the pains again. This has led now to nineteen years suffering pain almost on a daily basis. There is no warning for when it comes. I can be sleeping, sitting resting, shopping, or eating at a restaurant, and it just comes all of a sudden. Most of the time, it’s a dull pain and then sometimes it’s like as if someone was jabbing a knife deep into you and it seems nothing brings much relief. It doesn't help that another result of all this was IBS, which bring its own set of problems and pains on its own. I do not go to doctors much anymore, since I am tired of hearing them tell that my pains are a result of my adhesions and that I just have to live with the pain. I feel, no I know, that I have lost so much of my precious time and quality of life because of ARD, but I lean on my faith and family to help me get through and live my life as best as I can. I would have to say that one of the worst things of having ARD is that most of the time you look completely normal on the outside. I smile, and joke and try to be as positive a person as I can be, but many times behind the smile and the jokes no one would suspect that this body feels fatigued and longs for her heating pad so that she can feel some comfort. I believe that probably most ARD sufferers take some form of anti-depressant, not because we are crazy, but because after years of having this condition we are worn out and need a little help to stay more relaxed and deal with this burden. I pray that one day ARD will come to light so that more research is done to find a cure for us. I am grateful to my family who have walked this road alongside me and to those who work hard to bring ARD to the forefront.
Note: This story was added to the website August, 2011.
Megan: I was born with a distended bowel. There was a blockage of my intestines. Only option was surgery. At 7 days old, I had my first surgery where they removed 6 inches of my small intestine. My earliest memory of my "issues" that I can recall was at the age of 5. I would move a certian way or I would stand up too fast..before I knew it, I was buckled over in pain. Excruciating pain; and as quickly as these "attacks" would come, they were gone. We never really brought any attention up to these attacks since they never lasted more than a few seconds. I continued to live life with these little issues. 2006, my junior year in high school, I laid in bed that fall with overwhelming nausea and pain. Eventually, I passed out due to exhaustion. Next morning I woke up and all was well. March 7th, all I can remember is I was out with my dad trying to eat chicken. It was a relief, to say the least, to go home and sleep. After a few days of overwhelming nausea and pain I knew something had to happen when it didn't subside. Before I knew it, a quick call to dad, and I was on my way to the hospital. After 6 hours in the ER, I finally got to hear they were admitting me.After doing an exploratory surgery, the diagnosis was adhesions. Unknowing of what this weird stuff was, I took the diagnosis with a grain of salt. A year later I graduated from high school, where I found my now husband. Then, I was buried in adhesions again. I consulted my doctor again...June 7th, 2009 I was having surgery, again. As the doctor was leaving my room on the last day of my week long stay, he told me, "Pray...pray hard that they don't return." June 26th, 2010 my husband rushed me to the ER again with overwhelming nausea and pain. Diagnosis? Partial intestinal blockage. Doctor after Doctor. No one offered me hope. "Go home and suck it up," is what a lot of friends and family said. That is easy to say if you are not the one whose life has been halted due to this debilitating illness. I have hopes of one day living my life free from this pain and misery. UPDATE, UPDATE!! Megan is finally FREE from the pain of adhesions! WooooHooooo! Please see video below. Very happy for you, Megan!
Karen, I just want to take a moment and sincerely thank you from the bottom of my soul. Truly, without your help, I probably would have lost my life, my son would be without a mommy. It is because of your support that I am standing here today to give my son a hug, to give my husband a kiss, and to give my family my hand as we pray for all others suffering with this illness. Thank you so much Karen for your hard work, your sacrifice, and your support. Sincerely, Mina Bonocore *See Mina's before video below:
Note: This story was added to the website August, 2011.
DeLayne: My adhesions started April 21, 1984. It was supposed to be an exciting early morning 12:31 AM. I had just had a c-section due to the fact that I had placenta previa and a tiny little boy was born. I was awake during the c-section and I remember being in the recovery room when all of a sudden the nurses were yelling to get the doctors back ASAP. Come to find out the placenta had grown to the wall of the uterus. I was cut back open about nine times trying to stop the bleeding. Finally as I was about to die to save my life the did a partial hysterectomy. I ended up having to have nine pints of blood. In 1987, I got real sick and swelled up like I was pregnant and found a new gyn. I was told I had endometriosis they removed my right ovary. When I got a copy of the path remove it said it was not endometriosis, but did not say anything about what it was. Then in 1990 it all started again and I had to find a new gyn as the other had moved away. When they got inside they discovered that my left ovary, appendix, and colon had all grown together. The removed the left ovary and appendix. I went nine years with no problems. In 1999, I went back to the last doctor’s office to find he had retired. The new doctor who took over basically told me I was crazy and just wanted drugs. He referred me to different doctor who just read my medical info and never saw me that I was just a hypochondriac. So, I when I went back to the doctor who referred me he told me I should just be happy with my swollen and hurting belly and go layout at the beach and be a beached whale!! Finally in 2000 I found a new doctor with insurance change who did the surgery and he was the one who told me I suffered from adhesions. It was then I realized I had adhesions all along and no one told me.
The symptoms came back in 2002. Again the doctor who did my last surgery retired. I saw another doctor in the group. He did laparotomy surgery in January with the new doctor. The day after the staples were removed I turned over in bed and I had a pain like no other. From February till May I was in his office weekly. He too thought I was being a hypochondriac wanting drugs. My mom finally went with me to an appointment and he said it must really be serious if mom is here. He finally said he would go back in, but this time laparoscopy. He could not believe how much the adhesions had grown in that short of time. After this he knew I would not be in his office if I really did need to be there. I was back again in 2004.
From 2006 to 2009 I had 9 surgeries, all this with just starting a new job in 2005. I couldn’t figure out why I was so sick all of a sudden. I did lots of internet searching and researching. I think I might have figured it out I had been on hormones since I was 25. The scare of breast cancer and hormones made my gyn change me to a soy based one. I was put on them in 2005. I took myself off them in late 2008. I did have to have surgery in July 2009. My time in the hospital each surgery was anywhere from 10 – 15 days in the hospital each time. In 2008 I was there 24 days. I had to go back for 12 more days after my incision busted open. Had my last surgery July 21, 2009, only spent 3 days in the hospital this time. I am on count down I am on day 670 surgery free and 60 more to go to be surgery free 2 years!