Reading the various testimonials about discovering the disease helped me understand and comprehend what I was going to have to face. I now want to share my own testimony in the hope that it might help you in turn.
I started experiencing pain in January 2017 in the lower right side of my abdomen, around the appendix. It was a “side stitch” type of pain that initially appeared when I exerted myself while running. The pain lasted for 1, 2, or 3 days. At first, there were 2 months between episodes of pain, but over time, the pain became more frequent and lasted for a week or even longer.
One day, I was out running despite already having pain in my appendix. The pain increased significantly with the exertion, so I went straight to my doctor. I had no fever and nothing unusual was found during the examination, so appendicitis was ruled out and I left with a prescription for Spasfon.
The pain subsided with rest.
After this first episode, I complained again to my doctor about the pain, which was still present. What’s more, the pain had spread from my appendix to my liver.
Several tests were carried out: abdominal and pelvic ultrasound, kidney ultrasound -> nothing abnormal.
A blood test revealed elevated sedimentation rate and CRP.
Time passed, and then, in September 2017, I experienced severe pain on my entire side, especially in my liver. I couldn’t sleep because of the pain. It felt like a knife was stabbing my liver when I moved in bed, and I couldn’t breathe normally. That’s when I started to get really worried and knew that something was wrong.
Back to the doctor: chest, abdominal, and pelvic CT scan. Nothing to report, according to the doctor who performed the scan. Except for an effusion in the Douglas pouch.
Back to the doctor again and again: a consultation with a gastroenterologist is quickly arranged.
I see my gastroenterologist in October and he prescribes blood tests, stool culture, a colonoscopy, and a fibroscopy.
December 2017: the colonoscopy reveals a dilated appendix with a suspicious bulge. A laparoscopy is considered to remove the appendix.
An MRI scan of the intestines was prescribed and performed in January 2018: a tumor was discovered at the base of the appendix, but according to the radiologist, it was nothing serious or worrying.
Finally, on March 15, 2018 (just over a year after the pain began), I received a call from my gastroenterologist, who wanted to see me that day. After reviewing my tests and consulting with a specialist surgeon (my future surgeon), he told me that I had peritoneal pseudomyxoma.
For me, who was just supposed to have my appendix removed, it was a huge shock!
I met with my surgeon and the operation was scheduled for May 2.
I exercised intensely and ate a lot to prepare for the operation (to stay in shape while gaining weight).
The operation went well, and I was lucky because my ovaries and uterus could be preserved (which was not expected to be the case 90% of the time). I came out of it well, with only my appendix, cecum, gallbladder, and omentum removed, and a large gelatin capsule scraped off my liver. The HIPEC was performed during the operation.
Waking up was tough! Morphine syringe, Acupan, epidural, urinary catheter, nasogastric tube, three Redon drains in my stomach, an arterial catheter in my wrist, and two other IVs. Three days in intensive care, then transfer to a regular ward. The joy of a “bad trip” on morphine and Acupan (visual hallucinations, sweating, pain, general malaise). .
First time out of bed on the third day after surgery. Everything is tiring, even talking.
I lost five kg, and since I had gained two kg before the operation… it’s okay!
Two weeks in the hospital, and I’m doing well.
I’m 26 years old, I’m athletic, and most importantly, I’m in good spirits.
I fought with myself to force myself to get up as soon as possible despite the pain, fatigue, and huge scar that pulls and forces me to stay hunched over. I also forced myself to eat even though I had no appetite (I started eating again on the fifth day, starting with liquids then compote… very slowly because I had a lot of bilious vomiting).
Little by little, the medical equipment was removed (probes, arterial catheter, then an IV, then both… then the drains).
Returning home was difficult because I still couldn’t do much on my own! But little by little I made progress, and I slowly straightened up, even though it took a long time (about three months before I was upright).
About three weeks after the operation, the side effects of the operation and chemotherapy started to appear! Damn… alopecia, spots on my nails, reactions on my face (swelling of my forehead, mouth, cheeks…), hand-foot syndrome (swelling of my hands with redness and a burning sensation, especially in my hands). Then it passed (but it was too late for my hair).
I went back to work part-time on September 17, four and a half months after the operation.
Today, six and a half months after the operation, I am doing very well and have resumed all my sporting activities! I have a follow-up MRI in a week.
It’s a tough time to get through, but never lose hope in difficult moments!
I think having good support and staying positive are two things that are really essential for getting better as quickly as possible!
I wish lots of courage to those who are going through this, and above all, stay positive!