Long term catheter - female


I am reaching out hoping to hear from anyone with experience of caring for someone with a long term catheter (female).

It seems there are certain conditions that occur as a result of long term catheter use and some of them are not very pleasant e.g. UTI.

I am hoping to hear from anyone who has experienced this and may have tips on how UTI can be prevented.

Also there is a condition PUBS (Purple Bag Syndrome) whereby the cathether and catheter bag turn purple (or blue) due to some bacterial infection/reaction in the bladder.

Some say it is “harmless” but when Mum gets it, she seems to be in terrible distress and seems to have stomach cramps etc.

This has been treated several times with antibiotics but seems to come back and no one has been able to help us in finding ways to reduce the risk of it coming back as frequently as it does.

It is most uncomfortable for Mum and for us as carers as we feel so helpliss.


Hi ManjiB

I’m so sorry to hear about your mum’s problems. I wanted to reply to try and bump this up a bit higher in the forum, see if we can bring it to the attention of someone who has any tips.


Hi @AshleyTH,

Thank you for your thoughts. I am sure if there is anyone out there experiencing this, they will respond. I have noticed there are some very generous people out there willing to share and pass on their words of wisdom.

I thought I would try to reach out as there is no need to suffer in silence. Also, I feel that sometimes, if you start a topic, it may trigger thoughts in others who may not have been willing to discuss it etc.

This has been a major headache for us because the only reason Mum is on a long term catheter is because she has not been able to get the PT and other help towards independence. Clinicians are reluctant to sign her off due to lack of proof/demonstration of her cognitive skills.

The GP keeps saying the district nurse can visit, but I am looking for preventative solutions or to take her off the catheter and maybe get her to use a commode.

I managed to get the GP to come and do a home visit and maybe during the visit she might spot something that might be a contributory factor.

Let’s see how things go.

Best wishes,


Hi @ManjiB

I’m not sure I can really help but I know that when my Mum had a catheter in the early stages of being in hospital, she had numerous UTIs (it seems to be par for the course). She was forever on and off antibiotics for them and in a lot of pain.

She is being discharged next week and while she still has urinary incontinence, she has been using pads for this for some time, which will continue when she is at home (we will be looking into incontinence support in the community). Is there any reason they are leaving the catheter in rather than using pads? As you say she has carers who would be able to change them - and while it’s far from ideal, it would avoid all the infections (and believe me, I’ve had one and I have not known pain like it. It was debilitating - no one should describe UTIs as “harmless”!)

It’s horrible feeling so powerless to help but hope you can get things sorted.

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Hi @ManjiB , we had a lot of issues when Mum came out of hospital with her catheter - and not a lot of information to help us manage it. She didn’t have UTIs - but it kept blocking and we continually needed the District Nurse to come out and flush through or replace.

With regard to having it removed it seemed no-one wanted to take responsibility for it - GP said District Nurses needed to authorise - they said GP. In the end a very kind District Nurse who was visiting for something else, saw how distressed Mum was and put wheels in motion for a TWOC (Trial Without Catheter) - which thankfully was successful.

I joined the Bladder and Bowel Community Support Group on Facebook which proved to be very helpful. They have over 17k members and freely offer support and guidance which may help with your queries. Maybe worth a try.


Best Wishes, Karen


Hi @Joanne99 ,

Thank you for your response which is very helpful.

Firstly I wish you and your Mum all the best and hope everything goes well with your Mum when she is discharged. I think it is great she is not having to use the catheter as it seems to be one of the most unpleasant things that one might have to use. If your Mum is able to communicate it will help as she can alert when she needs changing or help. Unfortunately, my Mum only makes noises which alerts us that she needs help, but it’s a guessing game as to what she needs help with though we are getting better at pin-pointing the need.

Yes, Mum has carers but post-stroke, all the professionals have been reluctant to do anything positive in terms of help. Their (the professionals) attitude has been containment rather than improvement and rehab. They seem quite “ignorant” (I don’t mean this in a rude sense) about a lot of things that a stroke sufferer needs help with and no one wants to take responsibility. So there are times when we get bounced around between services e.g. GP to DN and DN to GP or GP to social services etc.

Mum is only on a catheter because the immediate post-stroke diagnosis/prognosis was this is an elderly patient with comorbidities and little (I won’t go as far as to say “no chance”, though it felt that way) chance of recovery to any sort of meaningful life. They had essentially assigned her/categorised her to palliative care.

We have had to fight and push so hard for any help we have been given. The default answers are along the lines:

  • she is elderly and weak and it would be stressful for her to undergo tests
  • she is elderly and this is normal for someone of her age
  • she has vascular dementia and her condition is likely to deteriorate or she is deteriorating! On this I have to say as someone, along with other members of my family who has cared for her for nearly 3 years, she is actually improving, not deteriorating!

At the last home visit from the GP which I had to insist on as they wanted to do a tele consultation, she repeated the above despite seeing how much better Mum was looking and despite declaring all her tests are showing there is nothing wrong e.g. bloods, BP, cholesterol, liver etc. all normal, yet she is deteriorating?

In brief she is still with catheter because no one has done the trail without catheter. The GP is not very interested and seems to offer minimal support and is not at all proactive.

After the response to my post, I am pleased to say I have more information and feel I can go to the GP and DN better armed to request a trial without catheter.

The only problem might be that they will point to the fact Mum is still unable to walk as a possible blocker. Mum has not stood up though we transfer her to a recliner chair during the day. She wears incontinence pads as well as catheter.

Thanks for the positive vibes and support from this post.


Hi @Craftchick,

Thank you for your response Karen. Very informative.

Yes, we also get blocked catheters as well as UTI. We thought the blocked catheter was as a result of the UTI but from what you say, maybe this is not the case. When we ask no one seems to offer a definitive explanation. We get blue/purple bag and blocked catheters and then we get DN’s trying to help replace catheter and often struggle as Mum is not comfortable with the process and the invasive nature of the device.

I will see if I can get one of our more sympathetic DN’s to consider helping with the TWOC – no one has offered it to us yet despite many DN’s having been to visit and to replace the catheter many times over the last 3 years or so. As with your Mum, this is a very distressing time and even now, the only thing the GP has offered is a long term low dosage anti-biotic course as a preventative measure – no mention of TWOC (the cynic in me thinks they might not even be aware of the TWOC, since they simply refer us to the DNs at the first opportunity).

I am not on Facebook, but this forum has already been very helpful and so my thanks to all who have replied, including you, @Joanne99 and @AshleyTH.

Thank you everyone and best wishes.


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Hi @ManjiB ,

There is also a non Facebook main site which has a lot of useful information - this may help


Best Wishes, Karen

Hi @Craftchick

Thank you for the non Facebook link. Very useful.

Best wishes,