My name is Isabelle and I am 45 years old.
In 2012, I went to the emergency room three times with severe stomach pain. Nothing was found. The only thing noted was that my white blood cell count was 11,500, which is high for someone who lives a healthy lifestyle, doesn’t smoke, and doesn’t drink.
I then had an abdominal and pelvic ultrasound, which showed that my appendix had more than doubled in size. I was sent to the hospital, where they were hesitant to operate. My friends and family encouraged me to have my appendix removed, as it is often responsible for many ailments. So I insisted a little with the doctor who saw me.
Appendectomy in June 2012. And in early July, during the post-operative appointment, the verdict came: peritoneal pseudomyxoma.
I was then referred to a specialist center where the doctors put me at ease. I had surgery + HIPEC on August 22, two years ago today.
They removed my omentum, gallbladder, ovaries, and fallopian tubes, and cut out a small piece of my colon.
I spent seven days in intensive care, then one week in a “regular” hospital ward.
The nurses (most of them, anyway!) were really great, and some of them showed real empathy, which made those difficult days a little easier!
Looking back on those two weeks in the hospital, I can say without hesitation that the most painful part (contrary to all expectations) was the feeding tube. The rest was always bearable. Afterwards, it’s extremely important to listen to your body and respect its needs, dictated by the severity of the operation and the HIPEC. And react quickly to the slightest warning sign: one night, 10 days after my discharge, my temperature rose to 39°C. My family immediately took me to the hospital. I had sepsis, most likely caused by the catheter (as I had been fed parenterally).
One month later, I was taken back by the fire department for another week-long stay, suffering from referred pain following a hematoma in the Douglas pouch (we thought it was a heart attack).
A month later, I had an intestinal obstruction. Back to the hospital for another week. This obstruction drained all my energy!
And that’s when I really realized that there’s no point in rushing things. Otherwise, our bodies immediately remind us that it’s too early to do this or that!
Today, two years later, my concern remains persistent (but manageable) stomach pain and having good bowel movements.
I haven’t been able to return to work, as I can’t sit for long periods of time. My life is different, but life is beautiful! And I prefer to talk about what I can still do rather than what I can no longer do.
You always have to stay positive and keep moving forward. Have confidence. In yourself and in others. I strongly believe in the power of positive thinking.
Many thanks to the surgeons and all the medical staff at the specialist center. And to my loved ones, who have been amazing. I was lucky to have them by my side. I noticed that some people who come for surgery and live very far away are not so lucky…
And also, well done and thank you to the AMARAPE team. It’s good to be able to read testimonials and discuss these rare diseases of the peritoneum. A big thank you for your work!