My course of illness with Ormond's disease
How it all began – 1996
I have been suffering from Ormond's disease since 1996. It all started with severe back pain. Since I was still working as a locksmith at the time, I initially thought I had stood up at work. But the pain became stronger and eventually almost unbearable. In addition, nausea was added.
I went from doctor to doctor, but no one could tell me where my complaints came from. It was only after about half a year that I came to a urologist who took various X-rays. It was clear that my left ureter was narrowed at one point and my left kidney was already almost twice as large as the right.
The doctor initially suspected that kidney stones had gone off and had clogged the ureter. I was just happy and grateful at the time that after such a long time a possible cause for my pain had finally been found.
The urologist transferred me to the deaconess hospital in Mannheim, where I was admitted to the hospital. There I lay with unbearable pain. I was given a ureter rail so that the urine could drain from the left kidney.
The drain worked again afterwards, but the pain persisted. The doctors continued to assume that kidney stones had detached and caused my discomfort.
After some time, however, it turned out that there were no stones. The ureter rail was removed again. A short time later, the kidney jammed again and I got a splint used again.
This procedure was repeated several times.
Eventually, a magnetic resonance tomography was prompted. During this examination, it was recognized that unusual connective tissue had formed in the back of the abdomen. On the images, the contrast agent clearly showed how this fabric was represented.
The next day, the doctors told me during the visit that I suffer from Ormond’s disease – a very rare disease.
Much more was not explained to me at first.
The doctors then began a high-dose cortisone treatment. I was given 100 mg of cortisone three times a day. As a result, my pain became a little more tolerable, but the kidney was constantly jammed.
The Operation 1997
On New Year's Day 1997, the pain again became so severe that I couldn't stand it anymore. I went to my urologist, who transferred me to the deaconess hospital again.
I finally became Dr. Chada operates. My ureters were moved to the front abdomen.
After the operation, I thought,
“Now you finally made it. Now you are finally pain-free.”
But unfortunately, I was happy too soon.
The pain did not disappear permanently and the disease repeatedly occurred in violent flare-ups. With such a thrust, the affected tissue becomes inflamed, and in my case, it also occurred that this tissue continued to grow.
I was told by the treating doctors that this tissue could not simply be completely surgically removed, since it was intertwined with nerves, blood vessels and other structures or was closely connected to them.
Further course of illness
In 2006, I got another strong boost. The tissue had spread further and affected other areas in the abdomen.
During an MRI examination, it was found that Ormond's disease compressed, among other things, the abdominal artery and vessels in the area of the legs. Also in the area of the spine I had increasing discomfort.
For example, if I only stood on one spot for five minutes, it could happen that I could hardly turn left or right afterwards. It then took some time and took exercise to get better again.
Even at night, I often woke up because of severe pain in the back and flank area. Then I had to get up and walk a few meters until the complaints subsided a bit.
I often felt like my whole back and abdomen were being blocked.
Since you couldn’t just remove the changes surgically, I had to learn to cope with this situation.
Of course, I was thinking about whether the disease could spread further and possibly affect other organs or structures.
Ormond's disease can be a very distressing condition. Just when you think it's finally gotten better, a new boost can come.
Despite my own difficult experiences, I would like to encourage other sufferers: the course of the disease is not the same in every person. My experience cannot be automatically transferred to other patients.
Therefore, hope should never be given up.
May 2009 – a positive course
In May 2009 I finally reported on a positive development.
By that time, about three years had passed since my last bigger push. The changes caused by Ormond's disease had even partially receded.
The abdominal artery was hardly compressed and the vessels that lead to the legs were no longer so badly affected.
For me, that was a huge success.
Of course, it would have been beautiful if the disease had fully receded. But after all these years, I was very happy that my condition had improved so much.
In the many years with the disease, I had learned to live with the disease and not constantly fight against it.
For me personally, that was a very important point.
I began to question my own life and my dealings with my body. I realized that I had often crossed my own boundaries in the past and had not taken the signals of my body seriously enough.
For me personally, the disease also meant looking at my life and my priorities. This is my personal experience and not as a general explanation for why people fall ill.
2011 – again a heavy boost
Unfortunately, I was happy too soon.
In 2011, a heavy boost came again. This time, the abdominal artery was again severely affected.
In an angiography, it was found that the aorta was significantly constricted. Therefore, an operation was planned for June 2011.
The Great Operation on 7. June 2011
On the 7. June 2011 was finally ready: I was operated on at the aorta.
The operation had become urgently necessary, because I could only walk very short distances. Climbing stairs was almost impossible and the pain could hardly be endured.
That's why, on the one hand, I was of course tense, but on the other hand I was also happy that something was finally being done.
The operation lasted about six hours.
When I woke up after the operation, I was in a lot of pain. Nevertheless, I was relieved, because the doctors explained to me that the procedure had been successful.
According to the doctors, my aorta had been almost completely compressed at that time.
A bypass was placed to ensure the blood supply, among other things, to the legs and other affected areas.
About eight weeks after the operation, I was able to walk longer distances again. Climbing stairs was also possible again, without me getting the earlier severe pain in my legs.
This was a completely new way of life for me.
I was extremely grateful to the doctors for this.
And I always wanted to encourage other people affected:
The disease does not create you – you create the disease!
2014 – a few years after the operation
A few years after the major operation, I was able to continue to say that the procedure had been a complete success.
I was able to walk more routes again without having to stop constantly.
I was incredibly happy about that.
Unfortunately, at that time, stronger pain again occurred in the back, abdomen and testicular area. Especially the pain in the testicle area was sometimes very stressful.
I was therefore regularly treated by my pain therapist and received, among other things, blockages for pain treatment. In addition, my pain was treated with medication.
At times, this has made it possible to get the pain peaks much better under control.
During control examinations, the inflammation values were regularly checked. For me, it was especially important that the Ormond's disease did not continue to grow and did not affect any other organs or vessels.
At the time, I was also asked by another Ormond's disease patient if I was aware of a link between Ormond's disease and Borrelia. I didn’t have any information on this.
For me, however, this question again showed how many things around this rare disease were still unexplained.
2016 – another bypass operation
For a while I finally had some rest before the illness.
But then came the next setback.
The left side of my Y prosthesis was severely impaired, so another operation was necessary.
They put a so-called cross-over bypass from the right to the left. The operation lasted about two hours.
Before the procedure, I was only able to walk about 100 meters before I had to stop due to the pain.
After the operation, I was able to walk much better again and had significantly fewer complaints.
2018 – Heart surgery
In 2018, a new health chapter began.
At first I noticed a pull in my right shoulder. This pulling became stronger and stronger over time.
Finally, I went to my GP. Later, the pain in the chest area also became stronger, so I visited a cardiologist.
He immediately admitted me to a hospital based on the results of the examination.
On the same day, a coronary angiography was performed. It was found that two coronary arteries were closed or severely affected.
Shortly thereafter, an open heart operation was planned and successfully carried out.
In the period after that, my condition developed pleasingly stable. Occasionally I felt a slight pull in the chest, but overall I was very satisfied with the result.
2020 – a stent in the aorta
In 2020, I got severe pain while running again.
After about 200 meters I had to stop again and again.
During an examination with the vascular surgeon, it turned out that there was another bottleneck in the upper area of my aorta.
I then arranged an appointment at the deaconess hospital in Mannheim.
There I was inserted a stent about three centimeters long.
Fortunately, no major open surgery was necessary this time. The procedure could be performed via the right bar.
After that, I was able to walk longer distances again without having to stop constantly due to the severe pain.
2022 – Gallen colic and other serious illnesses
In April 2022, I got very strong bile colic. The pain was so severe that I had to go to the hospital.
There I first received painkillers, which made the symptoms a little more tolerable.
During an ultrasound examination, it was found that a gallstone blocked the bile outlet.
Unfortunately, it didn't stick with it.
In addition, I got heart problems. Since the hospital was not adequately equipped for my cardiac situation, I was transferred to another hospital.
That's where I was admitted to the intensive care unit.
Doctors determined I had suffered a heart attack. In addition, sepsis, pneumonia and heart failure were diagnosed.
I was given a stent to treat the heart problems.
Because of the pneumonia, I received high-dose antibiotics. In addition, I was given other medications to treat my other health problems.
In total, I was in intensive care for seven days. I then had to stay in the normal ward for another seven days.
It was only when my blood counts had stabilized again that I was finally allowed to go home.
The treating doctors suspected at that time a connection of the pneumonia with a previous corona infection or COVID-19, although my test had been negative at the time of the admission.
In May 2023, I was fortunately able to report that my situation was again largely stable.
After all the health problems of the past few years, I just hoped that some rest would finally come.
I personally have often wondered over the years what long-term consequences the many necessary medications and treatments might have had for my body. However, such an assessment always belongs in the hands of the treating doctors.
I have also lost my teeth in the lower jaw. That's why I was finally in treatment to have implants inserted.
My Life with Ormond's Disease
When I look back on my long path to illness today, many difficult years are behind me.
There were times of pain, numerous hospitalizations, examinations, medication and several major surgeries. There were always setbacks – but there were also moments when it went up again.
I have learned over the years that Ormond's disease is a part of my life, but not allowed to determine my entire life.
It is therefore particularly important to me to encourage other people affected.
Each course of the disease is different. Just because my illness has taken a certain course does not mean that it has to happen in another person.
Therefore, do not give up hope.
Inform yourself, get regularly examined, talk to your attending physicians and listen to your body.
Above all, however, try not to lose sight of the beautiful things in life despite the illness.
I have experienced many difficult situations and yet I have stood up again and again and went on.
And that is exactly why for me to this day:
The disease does not create you – you create the disease!