What a difference a tube makes...24 l... - Multiple System A...

Multiple System Atrophy Trust

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What a difference a tube makes...24 little centimetres (Supra pubic Catheter) !

Boyyo profile image
7 Replies

Hello All,

I mentioned that J was going to have a catheter fitted and thought I'd post how it went and what we've learnt so far.

As always, I appreciate that every person's different but here's our story so far with this new addition to the family.

The operation was completed 72hrs ago in Salisbury Hospital by Melissa Davies and her team, all went well and J was home within 6hrs of the op. The anesthetist gave J a spinal anesthetic, instead of a general, which was basically a less invasive form of epidural which J had had when giving birth to our son. It worked well and took less time to recover from.

The catheter insertion site is small and all you have is a single plaster to cover whilst things settle down, and this was changed by a district nurse who visited home after 48hrs. They will do another dressing change soon then follow up with a full catheter tube change at home in early January.

The mechanics are quite simple. A small diameter tube comes from J's lower belly to a fitting where a small 'day' bag is attached and held onto her leg with two small velcro straps. The bag has a drain to use during the days if required.

At night, the drain fitting of the day bag is joined to a longer tube and 'night bag, which also has a drain on it. After attaching the 'night' bag tube to the 'day' bag you simply open the 'day' valve to let any wee that flows during the night, pass through the 'day' bag and into the 'night' bag.....simples!

The biggest impact is sleeeeeep....you get more of it🙂

At night we've had twice as much in the first 72 hours, as J's not going to the loo despite having pads on. And not wearing pads, ever, makes a huge difference too. The hassle of applying them (which I did) and then actually using them without getting them caught on legs etc, is removed entirely. Upon these small levels of stress is depression born....and that's now gone.

We only awoke in the night to double check things were OK, and that the wee was flowing as it should, and it was.

The daytimes are also better, where J doesn't need to constantly be at the toilet door as much.

I still need to be there to help her to use the loo and empty the bags etc, but much less. That said J has said that there does seem to be a sense of needing to wee the old fashioned way, but I'm thinking that maybe there's and element of muscle memory and that will disappear eventually, but we'll see.

Anyway, it's a better place to be in and William (Willy) is a welcomed new member of the family ☺

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Boyyo
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7 Replies
Niknak74 profile image
Niknak74

It's really good to hear positive experiences like that so thank you Boyyo for sharing :)

Glad things are better for you and J and getting some better sleep does make a huge difference to managing all of this!

Hellebelle profile image
Hellebelle

Hi, glad to hear things are going well. Anything that makes like easier is always welcome!

Sending all good thoughts to you both.

Helen x

Andrashko profile image
Andrashko

Thank you for your experience in this. I'm sure we will be headed that direction soon enough. It's nice to know what to expect.

Boyyo profile image
Boyyo in reply to Andrashko

Hi Andrashko,

No problem, it's what this forum is all about I guess and it's been a real help to J and me. Sharing these small bits of info seems to take the edge off some of the challenges that pop up and there's generally at least one person who's experienced the same thing as you or your husband.

Hope all is OK, best wishes.

heysunshine profile image
heysunshine

Glad to hear you are both having a positive experience and getting more sleep! That's what I found was the bonus for me and hubby! Being more rested, I'm much less likely to get cranky!Since C has had one since August we found all went well. This allowed him to enjoy our daughter's wedding without having to worry about bathroom issues.

We have been experiencing the catheter getting blocked about every 3-5 days in the last month and have to call the VON on-call nurses to come and complete a catheter change. We are in the process of exploring why it's becoming blocked so frequently. He seems to have a lot of sediment in his urine, but no signs of an infection?

Never thought I'd know so much or care so much about the colour and consistency of urine or frequency of bowel movements??? So much we take for granted about the functioning of our bodies until they no longer function as they should!

Sending good thoughts and blessings to you and J.

CreativeOne profile image
CreativeOne

I had my radical prostatectomy and wound up with a permanent supra-pubic catheter (SPC) in 10/2015. The SPC takes some getting used to, but it works very well for me. I, too, have had some problems with blockage, and it appears that mucus is the cause for me. I spoke to the doc and got a liter bottle of 0.9% sterile Sodium Chloride Irrigation solution and some syringes with a special tip and a 70ml capacity. I can disconnect the belly bag (big improvement on the leg bag) and insert the tip of the syringe into the catheter end and flush the tube and my bladder with the solution, then let it all drain into a bag or the toilet. I can do this rather than replacing the catheter. In time, you could be taught how to change the catheter yourself. I change my own every month now. I've been doing it for 5 years. Yes, sleeping through the night is fantastic! I used to be up 4 - 6 times a night, not any more. I've actually logged 11 hours straight of uninterrupted sleep, but mostly it is 8 - 9 hours.

Boyyo profile image
Boyyo

We're nearly two months in and to be balanced about my previous post, it wouldn't be right if I didn't let people know that things haven't yet gone to plan.

Things are much better now that J has the Suprapubic catheter, but there have been issues which haven't made it the perfect transition.....yet!

The first two weeks went well, with the bag being filled fully at night with one or two visits to the loo, or a wet pad which apparently is normal. Then as time passed J had some pain and was put onto antibiotics for a possible internal infection.

The term 'passing by / over' is something that we have become used to as it's the term for when urine doesn't pass into the bag but instead goes old skool and passes through the Urethra.

Apparently this can happen and is possibly due to catheter positioning in the bladder.....bladder spasms....tube blockages.... infections. So we're working our way through the possibilities.

I need to repeat that the catheter has positively impacted J (and me) because our sleeping is so much better and J doesn't need to hover around the toilet all day 'just in case'.

The mechanics of the catheter i.e. emptying the bags, changing the bags etc are all quickly learnt and not difficult. I can also change a Tena pad in less than 10 seconds 😊.

Tip....we found it much easier to simply remove day bag at bed time and fit the night bag, instead of attaching the night bag to the day bag in series. It's just less 'stuff' for J to be worried about whilst sleeping as the night bag stays outside the bed.

So, J is now due a catheter change in two weeks and has antibiotic cream on the catheter exit point just to clear up a small infection.

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