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.
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, we may quickly feel sympathetic toward the person. We recognize their limitations and struggles. For the person suffering an internal illness, life 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.
The faces below represent people who currently suffer or have suffered this debilitating illness. Their smiles reflect a fighting spirit! This page is new. 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. (The stories will be added as I receive them).
The faces below represent people who currently suffer or have suffered this debilitating illness. Their smiles reflect a fighting spirit! This page is new. 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. (The stories will be added as I receive them).
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.
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.
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!
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.
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.
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!
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!
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.
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.
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!!
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!!
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.
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.
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!
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/
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/
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.
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.
I am awaiting another adesiolysis in September.
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.
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!!!
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!!!
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.
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.
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.
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!
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!
