After this big surgery on March 17th 1998 the surgeon told me, that without the surgery I would have been dead during the next 1,5 hours due to not-diagnosed ruptured appendicitis, severe peritonitis and sepsis. I took me a long time to get out of this life-threatening situation and after 5 weeks with ICU and hospital stay I was able to go home. The first day I came home I got fever some hours later and it stayed over night with abdominal pain, nausea and cramping. So the next day I went back to the hospital and they put me on TPN for 2 weeks and gave me antibiotics and pain meds. The symptoms were better so they send me home. Some days later the pain came back, the cramping, the nausea. I couldn´t eat, I have been constipated. So I went to my GP and he said: "Maybe you cannot deal with all the experiences you´ve made? You nearly died and this is a lot to handle! Do you want some pills to feel better in your mental condition?" WOW, I had abdominal pain! And no mental problem! I didn´t want a prescription so he sent me back home.
So I went to a gastroenterological doctor and he said "Well, you might have adhesions due to the peritonitis and the laparotomy. But there is nothing I can do for you because there is nothing that helps!" I asked if there would be a way to remove those adhesions but he claimed that this would not help. I should drink enough water and eat more oatmeal for breakfast and that would help enough! I tried. I drank 3 liters of water every day and I tried oatmeal as well. (For everyone who doesn´t know how oatmeal makes your intestines feel if you have really severe adhesions: imagine a huge gas bomb..in your intestines. At one point you really don´t know what to do of PAIN!).
I went back and told the doctor that there is no way to "handle" it with oatmeal. He got a little bit upset and pronounced that I´d seem to be a little "depressed". He gave me a prescription for laxatives and sent me home. Some weeks after my first and second hospital stay I had to go back to the ER. I was totally constipated, vomiting, nauseated, I had crampings and I had to vomit after ever little thing I ate or drunk. I had to go back 7 times from March 1998 to Dec 1998 and the treatment was all the same..every time: TPN, enemas and back home after two weeks. The same in 1999. The more times the doctors saw me the more upset they got with me. From their point of view I was a young girl with some stomach pain and some more depressions. They also mentioned, that I seemed to like to get that "attention" or if it may be possible to have some eating disorders? "You know...some little girls like to vomit after a meal...!"
My little need of "attention" ended up in a bowel-obstruction in January 2000. Due to ADHESIONS! They found my abdominal cavity filled with adhesions and conglomerates of them. So no surprise I was chronical constipated, vomiting, cramping for 2 years.
They did a laparotomy again and safed my life and I went back home 3 weeks later.
I was full of hope that this nightmare would have ended at this point...but it did not.
2 months later it started all over again and even worse. When I tried to drink a little glas of water I had to vomite some minutes later.
So the doctor-appointment-marathon started again. And changed into a new circle of doctors because the "old ones" said they would not be able to help me.
One gastroenterologist told me that he would refuse to treat me until I would have met a psychotherapist. To make sure that I don´t have "phantom pain". He also added that it wouldn´t be enough to see the psychotherapist one or two times. No, I would have to go there 10 times and before he wouldn´t accept me to make an appointment with him again. He also sent me to a food coach who told me that I should drink more water (I drank 3 liters a day at that time), asked me if I would have ever tried oatmeal for breakfast ("this is proofed to help!!") and that I should prefer carrot cake instead of normal cake. Nice idea...if I wouldn´t have stayed away from any sugar, cake, cookies, chocolate etc for the last year to avoid constipation! And because it is very sad to vomit your birthday cake or chocolate anyway..
When I saw the psychotherapist, she wanted me to make a "pain diary" every day, on which I could write down on which level my pain is depending of what I am doing. Short end of the story: after the 10th appointment she told me: "You are not a patient for me. You are definitely a patient for a surgeon. This pain isn´t in you head! It is true pain in your abdominal area!" What a surprise..
I went back to the gastroenterologist (who seemed to be a little irritated about the "psycho-outcome") and he told me:"Okay, if you REALLY WANT to have a surgery to remove those adhesions, I will give you the referral to the hospital!"
It may sound crazy, but I was happy to be able to get surgery!! Because I just wanted to get some help!!
I was 20 years old and suffering 24/7 without a break!
When I got admitted to the hospital for surgery things changed: the surgeons started talking at me "Well you are just constipated, you have to vomit after you eat and you have abdominal pain. From our point of view this isn´t enough to do surgery. If you would have another bowel-obstruction it would be worth it to do surgery but from our point of view it isn´t worthy now."
What?? Here I am, with pain, not able to eat, chronical constipated, rectal bleedings because of it, with pain and cramping every day and you are telling me this?? They spoke with my parents as well and my parents started to agree with them. I still wanted to have surgery because I felt this would end up really bad and I also didn´t know how to handle or survive this disorder. I needed help! The clinical staff talked insistently to me and same did my parents. So after some days I felt BAD because I still wanted to have that surgery. I felt like a stupid little girl who is exaggerating the symptoms and worst thing: I started questioning myself and my pain. So in the end I accepted my subordinate role and quit the surgery ( I knew it was a bad decision but I wasn´t strong enough to keep standing).
Before I had this ruptured appendicitis I was very active and did a lot of sports. When I was 3 years old I started Ballett, some years later horse-riding, I played Violine and when I was 12 years old I started fencing. After my first year (when I was 13 years old) I reached a level on which I was on place 2 in my state ranking list and I got invited to the National German Championships of Fencing (ranking 27 of Germany in my class of age). Until 1998 I continued to be that successful and on my last championship before my appendicitis I was on ranking 1. I also got my trainer license and gave fencing lessons to kids twice a week and had my own training units round about 6 hours a week plus championships and high-performance sport courses on the weekends.Then my life changed because of a little organ called Appendix.
I had to quit all my sports and I had to quit fencing as well. First when it happened I had the hope that I would be able to continue after some time of break but it did not happen.
Because my days and my whole life ended up in daily constant pain, cramping, nausea, constipation, vomiting...24 hours a day, 365 days a year.
I went back to school and everyone was expecting me to fail but I did not. Looking back I really don´t know how I did it but in 2001 I graduated with high-school diploma.
Since I was 5 years old I wanted to become a surgeon. I did everything over the years, I went to the public library and got every medical book they had and learned..beside school and sports.
When I graduated in 2001 I had to face the fact, that I wasn´t able to go to Medical School to become a surgeon, because my body wasn´t able to handle it. And on the other side I had to get some money to support my family after the financial crash of my parents in 2000/2001. So I decided to become a midwife because I thought it would be as close as possible to a doctor. (it wasn´t and from the first day I felt that this wasn´t the right choice and not my "place to be", but sometimes life doesn´t give you choices).
In 2004 I graduated from midwife (yes, I finished this graduation which started in 2001 and ended in 2004, but don´t ask me how. Several times I was crying before I had to go to my shifts because I didn´t know how to handle it all. I couldn´t leave the apartement withput pain meds and it was more an existing from one day to the other..but no living). The years of my education for midwife were hell but I had to continue for many reasons. From the end of 2003 my symptoms got more and more worse and I knew where it would end..but I hoped I would be able to finish my graduations first. It worked, but in 2004 after the examinations I had my second bowel-obstruction.
This time I also got a huge wound infection in my laparotomy wound. The doctor removed the agraffe in my wound in two spots and opened the tissue with a scissor. He said" You don´t need an anesthesia because this wound tissue is fresh and doesn´t hurt either! And when the pus comes out it shouldn´t hurt anymore!" The pus flowed out..round about 150 ml, so a lot! But the pain was horrible..after he emptied the holes where the pus has been in he checked the muscle fascia with a cotton-stick to see if the bacterias got into the abdominal cavity. Everything without anesthesia. I didn´t scream because I always want to be tough, but the woman who was laying in the bed next to me said, that my whole face was grey when he left the room after this procedure. And I was done.
The surgical wound had to heal open by itself and I had to purge and tamponade it on my own at home for the following weeks until it would be closed.
I survived the first life-threatening situation in 1998 but in 2004 I was still in another life-threatening situation because of Adhesion Related Disorder. And no one was willing or able to really help me at that time.
This is me when I was doing Ballett at pre-school age
