Moving on from bowel cancer

You can find lots of useful information about life beyond bowel cancer on our website, including our Living well booklet.

FlossieM

Fistula care/dressing

I wonder if anyone can help.
My 89 yr FIL had bowel cancer several years ago and following chemo, radio and permanent colostomy has been ok since.

However, he has a rather unpleasant perinatal fistula which drains constantly (like a slow running tap) very smelly discharge. It can also become blocked and need clearing.

Until now his wife has changed the dressing for him (Biatain) which has worked well. It was needing changing every 2/3 days. The viability nurse at the hosp taught her.

Now however she is in hosp with UTI and delirium and it is clear she won’t be able to do this anymore.

The GP surgery want him to come in every day to have it changed. At weekends they have made appts for him at the nearest surgery that’s open, which is miles away. The nurses are hit and miss with changing it properly and twice this week it has fallen off within hours.

My FIL does not drive and we are not able to take him every day forever. They said he has to get a taxi. He can’t afford that on his pension.

This is really getting him down. The surgery say he can’t have home visits because he can walk, although is 89, wobbly and frail. He already copes with his stoma, it’s so unfair he now has this too.

Has anyone else been in a similar position? Is there anything we can do? If he could have home visits and they did it properly he would be fine and they’d only need to come 2-3 times a week.

I’m at a loss. Any suggestions most welcome 🙏

Tracey47

Hi @FlossieM sorry to hear about your mum and hope she gets better soon. With regards to your FIL have you thought about contacting his viability nurse or stoma nurse they may be able to arrange district care and be more helpful and understanding. :x:

FlossieM

Thanks Tracy. We weren’t sure what to at all. He doesn’t really involve us in what goes on so it’s quite difficult to support him sometimes!. I will ask him about a stoma or viability nurse. Trouble is it’s quite a few years since his op and he’s been coping well until now so I don’t know if that means he’s been discharged or if he always has direct access to the hosp team? I’m guessing he must have to the stoma nurse though?

Liz Blakelands

@FlossieM Hi I'm sure anyone with a stoma can have access to the stoma nurse. If he isn't the GP practise should be able to arrange contact with them. His GP practise don't sound that helpful. It seems astonishing that they expect a frail and wobbly 89 to get to a surgery miles away at weekends. I would suggest speaking to the practise manager, with your father in law present if possible and explain to them exactly what the problems are. Sometimes the problems need to be really clearly spelt out to stop decision makers assuming all will be fine.

Please let us know how you get on.
All the best
Liz :x::x:

annie50C

Has he got a seton in place @Flossie ? as that is a very simple procedure which clears it up pretty immediately and can be left in indefinitely? he wouldn’t need any of those visits and it heals. Maybe he has one but just thought I would mention it xzx Annie

debs247

If it’s a perianal fistula then it’s the tissue viability nurse that should support you with a treatment plan. There should be one In the The community that your GP or nurse can contact for you. Since he has had it a number of years There are lots of new treatments that may help.
Has he had the fistula explored to see it there is a reason it hasn’t healed?
I would also speak to the district nurse team leader/manager and try and get the support at home and go to pals if necessary.
Also is it you speaking to the nurses or you FIL? If it’s him then you explaining the issues may be better from you.