Bowel cancer
posted by jk5724
19 October 2013

Stoma Care

Last reply: 4 years ago

Hi all, I'm taking the plunge and bringing up the topic of stoma care. I had an operation for bowel cancer which invaded the pelvic area requiring the removal of my womb ovaries part of a kidney, part of the large and small intestine as well. I am on a course of chemo therapy at present and will have radium as well.
While the surgeon and oncologist have not given any prognosis regarding life expectancy they both said that even advance cancers now respond very well to treatment and I know they are looking at my case in a positive way, as I also am.
I have a stoma and received help from specialist stoma nurses while in hospital - I adjusted very quickly to to idea of it and became proficient in looking after my personal hygene etc.
So what's my point? Well since coming home I realise that its quite a job getting supplies of bags, and all the sprays and things to go with it. At first the hospital put me in touch with a company who supplied this stuff - I then had to get a prescription from my doctor and send it to them along with a cheque for prescription charges. I ended up with too much of one thing and not enough of another. So I changed to getting supplies from my local chemist this required that I go in and let them know reference codes for each item so they could order in. On one particular day I spent an hour waiting in the doctors in order to get a prescription for supplies.
Another time I ordered a repeat prescription on a friday and was told on monday I didn't give them enough time and to come back.
In my opinionall this beaurocracy around these prescriptions is a waste of time and energy on my part and on the part of the G.P's as well (who by the way has been very supportive of me during my illness - no complaints there).
Why are they not availabel free to bowel cancer patients at a point of distribution (like the chemist)? Its the only way we have to go to the toilet - no one else has to jump through these hoops to answer the call of nature.
After all I only use what I need to use - I dont think there is a call for them on the black market so I wouldn't see why I should require any more than is necessary - what would you be doing with them anyway?
What does anyone else think? Am I making a mountain out of a molehill?



commented by Irish Cancer Society
25 October 2013

4 years ago

Dear JK5724,

Thank you for your posting I hope that you will hear from other members of the message board soon. I am sorry that you have experienced a lot of difficulty in accessing stoma supplies given that you are also trying to recover from the surgery and trying to adjust to the many changes that this has brought to you. Please feel that you can call us on the National Cancer Helpline where you can speak confidentially to a cancer nurse and we may be able to advise and support you further. We're here Monday to Thursday 9am to 7pm and on Fridays from 9am to 5pm, and our number is Freefone 1800 200 700.

Kind regards,

Cancer Information Nurse

commented by sooty
25 November 2013

4 years ago

Hi jk5724,
I know this is a while since you posted so I hope that you are having more success in organising your stoma supplies.

I too have bowel cancer and an ileostomy. When I left the hospital after my op the stoma nurse put me in touch with a local stoma nurse (kinda like a district nurse I guess). She came to my house to check up on me for the first few weeks after my op. She also gives me my prescription for my stoma supplies. It was great to have the extra support for the first month or so.

Maybe you could contact the stoma care nurse in the hospital where you are receiving your treatment?

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