Thoughts about a Suprapubic Catheter

Hi all,

I have not posted for a long time, but when my consultant suggested an indwelling Suprapubic catheter. I knew you lovely people would be able to advise me.

I am interested in if you have had this done how has it affected you?

How often does the catheter get changed and do you do it yourself?

Is there a way the urethra can be completely shut off to stop accidents?

Can I still swim with it (or rather sit in the hot tub)?

I am quite a fatty, would the incision be under my tummy fat or closer to my belly button?

Can you feel it does it cause pain?

How did you find the procedure of having it put in?

Many thanks in advanced,

Twist x

Hi Twistā€¦cant tell from your post or earlier ones, but are you male or female?

I ask cos it depends which you are as to how and SPC fits!

I`ve had one for around 8 years.

The incision is just above my pubic hair line. I`m a large lady and did wonder if it would work, but it does!

I have it changed more often than most ie 4 weeklyā€¦as it starts to fur up if left longer. You can`t do it yourself.

District nurses come to change it for me at home.

The catheter tubing is about 6 inches long, this attaches to a day or night bag. In the day, whilst in my wheelchair, it sits in a cloth bag I have hanging on my wheelchair arm. It is very comfortable.

Otherwise people can have it strapped to their leg. I found this unsuitable.

Occasionally it can by passā€¦ie empty the natural way. It often does this when I am sitting on the commode. I still wear pads, as they make me feel secure. You can get small leaks.

The SPC can cause bladder spasmsā€¦I take Betmiga to calm it.

It is possible to have a valve fitted to the end of the catheter and not use a bag. This way you could go swimming without anything being exposed.

I cant normally feel the SPC in place and it doesnt hurt. But when my dog jumps on me, it does make me flinch!

The key to keep your bladder flowing well is to drink lots of tap water.

Is there anything else you need to know? The op usually entails 1 night stay in hospital.

Comparing my life now with an SPC, as to how it was before when my mobility was almost zeroā€¦100% improved!

Boudsx

Dear Twist,

My wife Kym had a suprapubic catheter inserted a few years back and we had similar anxieties and questions before we agreed to it !

Initially we were like ā€¦ do we need this / uncertain about the benefits - afterwards ā€¦ it did help and we felt it was right that we went ahead with it.

The catheter got changed every 6 weeks or so. Sometimes it needed to be changed more frequently, when it wasnā€™t draining properly, sometimes we were able to get away with it not being changed for a period of between 2-3 months but that was rare. The district nurses do the catheter changes and flushes. Asked nicely, the carers would do the flushes for us.

I donā€™t think the urethra can be shut off, we were told there could still be minor leakage that way and my wife continued to wear pads after its fitting. Also when the catheter was misbehaving and blocked etc, there still needed to be the other way for liquids to make an exit.

We were told that swimming would still be possible, the lead to a leg bag might just need to be firmly attached so a hot tub ought to be possible I would have thought ā€¦ we never tried it ourselves.

My wifeā€™s incision was just below the belly button. It has to be in a certain place youā€™ll find!

Kym did just feel it when she had a catheter change but it would be a minor sensation she would always shrug off as being nothing to worry about. She was also under anaesthetic for the op of the SPC incision - I remember in most cases, patients arrived early AM and left late PM, all done and dusted in a day. In my wifeā€™s case, they kept her in for 24 hours longer for observation just because she had other underlying health conditions but it was a pretty straightforward procedure.

Hope that helps!

Best, Matt

Thank you so much for the information, I am female. I feel very nervous about taking this step, I am pretty mobile and it has been suggested I should use a valve rather than a bag. Currently, I do ISC but problems with my hands mean it is very awkward. Thank for sharing your experience.

Hello Twist

I had an SPC about 3 years ago for 6 months and I hated it.

I was encouraged by everyone who had positive things to say about theirs and went ahead because, like you Iā€™d been doing ISC for some years and my hands were getting worse so thought it would be easier. I also thought Iā€™d be able to use a flip/flo valve so wouldnā€™t need to worry about a leg bag.

I had the operation in March and stayed in just overnight. I had the staff fit me out with a valve. What no one had considered was that until the wound is healed up completely the valve wouldnā€™t work. In the car on the way home from the hospital I just began leaking (then flooding) from the wound.

So I was stuck with a leg bag for at least the beginning. In fact I didnā€™t try a valve again until just before I had the SPC removed, I wanted to make sure I could still hold urine without being incontinent (I could).

I straight away had trouble with the wound dressings, super sensitive skin gave me allergic reactions to most types. Eventually I found one that didnā€™t. But I had a wound infection that just wouldnā€™t clear up regardless of treatment creams. I was forever seeing the nurse at the GP surgery (we are of course on first name terms now!). In fact when I saw the urologist, just before it was taken out, she told me the infection could be sorted just like that with some silver oxide (I think it was).

I also had a series of UTIs the whole time pretty much I had the SPC. 5 separate infections in 6 months. No sooner did I get clear of one bacteria, then I got another (or an underlying one reared up again). I had the catheter changed fairly frequently, often as soon as I tested clear for UTI (you canā€™t replace the catheter while having a current UTI!)

Every time the catheter was changed I had the most horrible painful spasms. I was so envious of everyone who had nice easy, ā€˜barely felt itā€™, changes.

When I saw the urology surgeon at the 6 month review, I told her all the trouble Iā€™d had. She offered to sort out the wound infection, or she said ā€˜I could just remove it now!ā€™ I said ā€˜yes please, just get rid of itā€™. I went straight back to ISC with no problems**.**

Then last November I broke my femur (sorted with a plate screwed into my hip and knee) and had an indwelling Foley catheter for the time I was in hospital and then in rehab. By chance, I had an appointment with my lovely urologist while I was in the rehab unit. As at that point the physiotherapist told me Iā€™d be unlikely to stand and transfer independently, we agreed that Iā€™d have another go at an SPC. I got as far as the pre-op before Covid hit, then all non-urgent surgery was put on indefinite hold. In the meantime Iā€™d learnt to stand and had the indwelling catheter removed. I decided to leave my name on the SPC waiting list anyway while I went back to ISC.

Subsequently, Iā€™ve begun to experience what I think are bladder spasms. So I thought having an SPC plus bladder spasms is likely to make me bypass the catheter and need to use incontinence pads. (Defeating the object really of the SPC!) So decided to try for a phone appointment with the urologist, which was arranged very speedily by her secretary (Covid has actually led to some improvements in getting appointments if phone calls are all thatā€™s needed imo).

We agreed on my own feelings, that bypassing would be likely with an SPC, therefore urodynamics would be useful before I went ahead with surgery. So she took me off the list for SPC and put me on one for urodynamics (this will detect spasms or otherwise). We then discussed anti-cholinergic drugs to stop spasms, several of them Iā€™d tried before and had bad side effects. She then agreed one called Trospium might work, so Iā€™ve been using that. It seems to help a bit.

So this is clearly my own personal experience. Many people have SPCs and get on with them perfectly well. Many people use flip/flow valves on their SPC (you need a slightly longer catheter output lead to use one so you then have a small problem of how to tuck that away).

Good luck with your choice.

Sue

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Hi Sue,

Thank you for sharing your experience. I am really not sure what to do. You have highlighted some issues that I had no idea could happen.

A lot of thinking to do.

Thanks

Twist

Hi again, Sue`s experiences are quite rare. Most folk I know with an SPC say they are happy with itā€¦teething problems can be sorted.

Of course there are pros and cons. Weigh up your situation and see how the pluses go against the minuses.

I know I am 100% better off with mine.

Can I answer anymore concerns for you?

Boudsx

Hi Twist

I had one put it in a few years ago. Naturally I was reluctant to do this, but actually I prefer it much more than ISC. Itā€™s made life much simpler. I have mine changed every 6 weeks, and a district comes out to do it. You can have it changed more or less frequently. It never hurts, not even when changing it. I think where it goes depends on where your bladder is - mine happens to be lower than most.

Good luck if you decide to go with it.

Dan

Hiya.

I had my Suprapubic Catheter fitted nearly 4 years ago. It has been a lifesaver for myself. I used to go ā€œnaturallyā€ at any time which was very embarrassing. I sometimes have a little leak now and again but wearing a pad sorts that out.

I had mine done using Local Anaesthetic as I wanted to stay awake. I didnā€™t feel a thing and the Dr who did the op talked me through exactly what was happening. Like Bouds said the hole is just below where my pubic hair stops. The whole op took about an hour.

Hope this helps.

Shazzie xxx

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Hi Shaz, how you doing chick?

Boudsx

Hi Twist,

Iā€™ve had my SPC in place for about 8years now, it was the best thing Iā€™ve ever done!

I had an overnight stay in hospital & came out the following morning. The follow-up appointment was, I think, about 4weeks after. The small incision is approx. half way between the top of my pelvic bone & below my naval. I have it changed by the district nurses between 10/12weeks. The change, for me, is painless & done very quicklyā€¦the nurse is with me less than 20mins. start to finish. You could have a flip-flo valve attached to the end of your catheter which would enable you to empty your bladder as & when needed.

Hope that helps!

Rosina

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Hi Matt,

Thank you so much for sharing. I am finding this a really difficult decision to make.

Twist

Thank you, one of my biggest concerns is that around 5 years ago I had a lead implanted for a sacral nerve stimulator trial, I ended up with a severe infection and I see the similarities with something being half inside and half outside is worrying me.

My problem is 90 % of the time I canā€™t go for a wee at all and then the other 10% I have a spasm and just go, I have taken medication for bladder spasms before I think it was called Solifenacin but it made me incredibly dry - Mouth skin eyes so much so I could hardly talk. So could I ask if your medication does the same?

Thank you for taking the time to help me.

Twist

Thank you, Dan, for your reassurance.

Twist

Thank you Rosina for your help.

Twist

Hello all

This is my first post as Iā€™ve just joined, like twist, Iā€™m having to consider a SPC and Iā€™m also really worried about it. I get recurring infections and really bad bladder control, Iā€™m in a wheelchair but can still transfer to the loo(and hopefully make it in time) Iā€™m now more concerned as I thought the use of a valve was a matter of choice and not dependant on other issues. Does anyone know the reason for being unable to use the valve as opposed to the bag?

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Thanks dizzy, from reading all the comments it seems the best way to go.

Hi Twist,I have a spc about 7 yrs it gets changed 6-8 was,unfortunately my changes are horrendous,I have now be prescribed morphine to helpā€¦would I still have it done I think I would, but no one has mentioned belly bags which I use , as the name suggests itā€™s worn round the tummy,I hate the leg bag so uncomfortable.hope this helps.

Sue

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Hi, I`ve tried oxybutynin, vesicare and solifecaninā€¦but betmiga is best for me. I get no side effects from this. I take 50mg a day.

Boudsx