Please please please can anyone help I’m at my wits end, last week district nurses were unable to replace my in dwelling catheter because I was having bladder spasms and expelled 3 in 5 days with the balloon still inflated. I have now been given medication to calm the spasms but it appears I’m now left with a battle to get another one put back in. I’ve been referred to the “continence” nurse who will I assume talk about pads…I don’t want to talk about pads…I want my catheter back. After only a week of living with urine soaked clothes,sheets etc and the total humiliation of it all I just can’t carry on.
I had catheter for 3 years, Yes there was the occasional problem back flowing usually when it was due to be changed but no infections. They are talking as if people who can actually urinate aren’t given Catheters…I’m wheelchair bound and completely reliant on careors to for all personal care and use of comode. That’s why I had a catheter, I have MS
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Hi Dograbs
The continence nurse should have a microgram of tact and sensitivity.
Mine was compassionate and commented on the mess a breech birth made down below.
If you attend the continence clinic then let them know how upset this has made you.
If not then (removed by moderator) them right off.
It’s not as though you can get a repeat prescription.
When you are showing bravery in the face of adversity it should be met with praise and admiration.
You have them from me.
C xx
Hi Dograbs, I can sympathise with you…I had an in-dwelling catheter for 5 months, before I went for supra pubic one.
I was so uncomfortable and couldnt sit easily.easily.
Like you, I am a full time wheelchair user.
Have you thought about an SCP instead? They are much better to cope with. I still bypass sometimes.
Ask me anything you like if you need more info.
Boudsx
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Hi
It is useful seeing your post. My brother wants a catheter fitted. He is completely bedridden and also reliant on others. He only has 4 carers a day so they aren’t always there when he needs to go. He has been trying to use urine bottles but he finds it hard to hold them as his hands crunch up and stop working. He is having to wear pads and isn’t keen as it makes it uncomfortable moving on the bed. We have been told a catheter is likely to get infected and the bowel and bladder person says he does not need one ( despite getting urine all over his bed regularly which is horrid for him) It sounds like other MS users have a catheter fitted and it makes life better. Would you recommend an in dwelling one for someone in a similar situation?
Sorry not very helpful for your question. Good luck with your fight to get the one you like put back in. It does seem to be worth fighting for what works best for you.
May I also ask what care you have in place as we are struggling to find care that meets all his needs?
Anne
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sorry for not replying earlier, I have only just sorted out the new format of the forum; as my hands do not work too good I have to rely on the microphone option to send messages now. I finally was able to get my catheter put back in The continence nurses authorised it. Unfortunately you do have to to battle for everything. An SCP is a suprapubic catheter. It is better that you have a look on the Internet for an explanation of the difference between the two types of catheters.
As far as my care plan is concerned I am completely self funding, no I am not rich! But I do have a pension from my 41 years work as a telephone operator! Therefore I get no help whatsoever financially from anybody. I need two carers four times a day as I cannot wash myself dressed myself feed myself… my savings are very nearly gone and I haven’t a clue what will happen to me when they are gone. I worry about it day and night.
I hope that you get things sorted out for your husband and you manage to get the right type of Catheter to suit his needs. Do you have a look on the Internet for the explanation of the different types of catheter is it is easier than me trying to explain as I might get it wrong and mislead you.
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Hi
I’m so glad you got the catheter fitted back in again.
It is my brother that has MS and he sounds similar to you. He also has a pension from working as a researcher in the university. He is 51. He has 1 carer 4 times a day now but this is not really enough to meet his needs. Up to now he only had one in the morning and his wife did everything but it was too much and she is suffering severe depression and left briefly to stay with her daughter. I think they had both been hiding how bad it was because of money worries. My brother is now forgetting things so he is finding it harder to sort things out. Your speech messaging is a good idea. My brother uses Alexa to do things for him such as open and shut curtains, turn lights on, open the front door, answer the phone. It gives him a bit more control. Speech typing is also a great idea. It is really good to reach out to other people and hear how they are managing. Do you ever get outside? What kind of wheelchair works for you? Do you have 2 carers each time so they can use a hoist? My brother doesn’t move from his bed at the moment and I am trying to change that as it won’t be very good for him. My brother also has high functioning autism and find social interactions hard which adds another layer of complication.
I hope your money situation works out - I presume the government have a duty of care to you and once the money runs out they have to take over. Care act 2014?
I am so impressed you are keeping in touch and helping others as well. Thank you. You are very kind xxxxx