Help improve understanding of Quality of Life issues in Pseudomyxoma Peritonei (PMP)

[AngelaPMPS]

Pseudomyxoma Survivor has been contacted by a research assistant at the Peritoneal Malignancy Unit at Basingstoke Hospital who is conducting an NIHR funded study in collaboration with the University of Winchester to better understand the quality of life of pseudomyxoma patients.

The team reviewed the literature and extracted a list of symptoms. They want to hear from patients to better understand the symptoms that are most important to pseudomyxoma patients and impact their quality of life.

If you would like to help with this research, please complete this survey from your experience: bit.ly/3KnXhe3

Thank you

[Bottle]

I would like to know if research is being conducted on the post op complications of the cytoreductive and HIPEC treatment. I had mine in August 2020. Since then I have a lot of complications. Three months later I was in hospital with bowel obstruction. I was on a low fibre diet for over a year. Then I became aenemic. Was told to eat anything to build my strength. Then I started to have severe acid reflux,plus the diarrhea, wind, not sleeping etc. The doctors prescribed several antibiotics for bacterial overgrowth, helicobacter etc. All made the problem worse. Eventually, I wrote to the surgeon who conducted the operation and explained my situation. I went to see him in April and was told it is the antibiotic that was prescribed to me at the time of my operation. I shouldn't have taken them for more than a year. I was told at the time of my discharge from hospital that I need to take them for the rest of my life as I have no spleen. I am still on a basic low fibre diet. I went to have some tests and scans two weeks ago. There were a few patients who had the operation and was having there yearly scan. I spoke with them and they all seem to be having severe gastric problems. Obviously this interfer with sleep, health, etc.

After three years I am beginning to accept that I may have to live with this. It's affecting me mentally and my relationship with my family and friends. I have been reading a lot recently on the HIPEC treatment and it seems that the disease itself and the treatment maybe the cause of the acid reflux.

I was wondering whether any research has been done to establish the reasons for the severe acid reflux. I assumed I was the only one with the problem, because I had no gall bladder. The surgeon said by stopping the clarythromycin, I should be ok. I am still limited to what I can eat. I am still exhausted. The gurgling in the stomach is not as severe.

I would be grateful if you could enlighten me. Is there a connection between the HIPEC and severe stomach acid.