Ascites and Pleurx

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I’m 44/F and was diagnosed a year ago with bowel cancer that had already spread to the liver. My primary tumour was removed surgically and I’ve had chemotherapy and a procedure called SIRT to address the liver tumours. I have been able to cope with this whole process so far but recently have been suffering from ascites (presumably from the toll the SIRT took on my liver.) I’ve found this one symptom the most debilitating of this whole journey and it severely restricts my quality of life. My body feels stretched to the point of where I feel like I’m going to explode, I walk hunched over and can only have small meals.

I’ve had two “drain” procedures so far which I found painful and fairly traumatic and the fluid comes back after around two weeks. I am currently trying spironolactone to see if that helps with relieving some of the pressure but after three days I don’t see an improvement yet.

Because the ascites came back twice already the radiologist is suggesting an indwelling catheter (Pleurx) but I don’t know anyone who has experienced this personally. Is anyone here able offer their experience in terms of what it’s like to have one of these? Is it painful or uncomfortable (such as when sitting up or moving your abdomen), does it hurt to drain? Or do you just get used to it like a Portacath? I am just trying to understand this process a bit more before what seems like a frightening experience - but the overnight stays in the hospital for paracentesis were very painful and difficult for me to deal with. In theory it seems less invasive than repeat visits for drains but I am quite nervous. 

Likewise does anyone have experience where diuretics work? Maybe three days of a high dose (200mg) isn’t enough time to tell, please let me know if you’ve had luck with these and how long it took for you to find some relief. I wouldn’t be so bothered by all of this but the pressure around my abdomen is unbearable. 

Thank you for your advice and experiences.

  • Hi  

    I feel for you , I really do as it’s a side effect we have had to deal with a few times in different ways . Post surgery my mum had post op ascites for six months and had to wear maternity clothes , she has remained on spironolactone ever since .
    She currently has fluid swelling around her ankles and when suitable uses an additional diuretic and I notice a difference within a few days to a week . But the second diuretic really does cause so many toileting issues we have given up on it . Partly due to her mobility .

    I can’t answer your questions but I totally agree the discomfort side is not very pleasant for people .

    You could ask if you found it uncomfortable can it be removed . Our helpline staff might be able to ask the nurses  if they have come across it . 0808 808 0000.

    Take care ,

    Court

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