My Suprapubic Catheter Surgery

by Carrie Beckwith Fellows

My Suprapubic Catheter Surgery

Eight months ago, my Urologist suggested I get a suprapubic catheter (SPC) to improve my quality of life. Due to my Ehlers-Danlos Syndrome (EDS), I have numerous urological issues including an overactive bladder, urgency and retention, recurring Urinary Tract Infections (UTIs) and pain caused by over-zealous mast cells in my bladder wall. Despite the problems my EDS causes with surgery and healing, I agreed and began counting down the days until my procedure.

It Was Time For My Bladder To Retire

To complicate things, I tested positive for MRSA before my procedure. It was ‘colonising’ which meant the bacteria was sitting on my skin and, although not causing harm, there was now a risk of developing an actual MRSA infection from the surgery. I spent four days scrubbing myself in the shower and rubbing special cream in my nose to try to kill off the bacteria.

My surgeon visited me on the morning of the big event and explained what would happen plus any risks involved. He described how the bladder sits behind the pubic bone so he would fill it with fluid to make it rise up in order to get the catheter into the best place. I went to the toilet for the final time and thanked Dennis, my troublesome bladder, for his loyal service.

The surgery went well. The first thing I said to my wife when I woke up was “I don’t need a wee!” She was hoping for “I love you” - but after two years of constantly feeling like I was ready to burst, my overriding thought was how amazing it was to feel my bladder finally relax. Still a little dazed from the anaesthetic, I took a peek at my new tube and was surprised to see what looked like a dishcloth stuck to my ‘personal space’. The bright blue dressing was hugging my catheter, which I aptly named JCB - Jay Cloth Boris.

It Took A Little Time To Get Used To My New Bladder Buddy

It took a few days to get used to my suprapubic catheter (SPC). I bought a padded tote bag, which could hang on my wheelchair, to carry my urine bag in.

It took a few attempts to work out the best way to place the newest addition to my medical tube collection in bed but I looked forward to bedtime for the first time in years. Once I was tucked up in bed, I knew I could relax as I wouldn’t be getting up for a wee every few minutes. On the third day, I realised I hadn’t even thought about going to the toilet. In the past I had to remember to self-catheterise every few hours because I could retain a lot of urine. I was over the moon with my new SPC and was already feeling the benefits.

Not Everything Went Smoothly

The main reason I got my SPC was so I would not be in pain and feel like I need the toilet whenever I lie down. Unfortunately I do still have this issue. Some nights my catheter rubs on my bladder wall giving the sensation of needing the toilet. Other nights it digs into the bottom of my bladder due to my small size and wonky insides. This can be quite painful, especially when I lie on my back. If I lie on my side, the awkward position of the stoma means it doesn’t drain well. Sadly I am in just as much discomfort in bed now as I was before my SPC.

Despite carrying out the preventative treatment to clear my skin of MRSA bacteria, I was unlucky that it still managed to get into my catheter site. I woke up one day in a great deal of pain and went straight to hospital where my site was swabbed for MRSA. Blood tests showed I had an infection so I was given a course of antibiotics and the swab confirmed MRSA. The infection got quite bad and I became ill quickly. I slept all day and was too exhausted to get out of bed. The pain was bad and I questioned whether it had been worth it. How was this improving my quality of life?

It Was Worth It In The End

But now the infection is clearing and, despite the difficulties, I am still glad that I had the procedure done. The infection will clear and there are some options to help reduce the discomfort of the catheter inside my bladder. I don’t spend all night back and forth to the toilet anymore so I am no longer dreading going to bed. Car journeys aren’t spent crossing my legs desperately looking for a public toilet every ten minutes. I no longer have to self-catheterise, causing pain to my heavily damaged urethra.

I’m still trying to find the right urine bag for my needs and I’m a bit scared about my first catheter change but, overall, I am really thankful for my suprapubic catheter.

Carrie Beckwith Fellows

About the author

Hi I'm Carrie, I live in rural Northumberland. I have complex health issues including severe intestinal dysmotility and bladder dysfunction caused by Ehlers Danlos Syndrome. You can follow my blog at www.ruralteacake.com.

Recent Comments

  • Pamela Rickers

    Thanks Carrie for such an informative piece. Having had bladder issues myself for many years I can empathise with a lot of what you describe. 'How you you have both retention and urgency?' I was often asked, even by doctors. I'm crossing my legs here imagining your pain. Well done!

  • Richard Nock

    Hi,

    I have eds hypermobility type and autonomic dysfunction so my spc had to be fitted using anaesthetic in the spine which was also difficult because of compressed discs but they succeeded.

    I have had some issues since it was fitted a little over a month ago but they usually are nothing compared to before it was fitted. My only concern is that the wound which wasn't healing brilliantly due to my eds has now started to tear and it appears that something is building out of the relatively small wound which I will see the gp about tomorrow but I wanted to ask if you had any experiences of wound tearing at around a month after your spc was fitted?

    Thanks again for sharing your experience and I hope you don't mind me asking you more about your experience.

  • shona wilson

    Tomorrow i have my SPC and i have to be put too sleep i also have EDS my bladder is floppy and i have nerve damage so i cant actually feel the urge too wee. this issue stated so quickly that i didn't really have time to take it in. the reason i have to be put too sleep is because of my epilepsy and heart issues i am really scared and i cant find a bag to put my catheter bag but i'll keep looking.

  • Stephen

    I just had an SPC placed in. Had one before years ago. 3 surgeries for urethral structure. Now urethroplasty needed. I still feel the urge to urinate. Is this normal at the beginning. Didn't remember this feeling before. Surgery delayed due to blood thinnners. So I'll have this for a while.

  • Frederick Potthoff

    I have a spc for over 3 years. So far so good. Hang in there. Hope it gets better for you.

  • Fran Town

    Had my SPC fitted last Friday after 3 years of needing a wee up to 4 times an hour, and horrendous bladder pain. I am in z wheelchair most of the time due to spinal problems but do potter round the house on crutches. Friday was horrendous but hoped would all be worthwhile. Still getting lots of pain in bladder and feeling as if it is going to burst when need bowels open. Is this common. I also have felt as if z needle sticking in me when sitting on hard chair or standing. Does this was or do I need to ask someone about it. It's god not to keep needing the loo but not yet found a convenient place for leg bag as big built but fairly short legs. Nightime was difficult as found had to sleep sitting up or leg bag wouldn't drain into night bag as leg tilted backwards when lying. Arthritic knee distorted as needs replacement. Have to wake husband up if need to move or go to bathroom as can't reach to disconnect it myself. Was hopingvthos was the miracle I needed but at moment not so sure. Feel more if an invalid now than before. Was hoping to be able to go swimming again but have Bern told shouldn't be in water for any length of time. What is easiest way to have a shower, should wound be covered and how do you dry leg bands. Trying to devise a device so a waist strap of some sort will take most of weight as bag when using crutches. I feel for all of you. Hope someone can give me some advice as to living with this.

  • Holly Kingsley

    I had an SPC placed 2.5 weeks ago due to neurogenic bladder and retention. I am having continued mild brownish bloody discharge when I change the dressing twice daily. Also a pinching sensation to the left of the insertion site. Wondering how long before the drainage stops. Has anyone else had this issue?

  • Holly Kingsley

    One more thing... I have found a belly bag (1000 cc) that I wear discreetly under my clothing. Prefer this to using a leg bag. I use a bed bag during the night.

  • Hi @Stephan.
    The urge to urinate can be caused by bladder spasms, which unfortunately can’t be controlled. Make sure your catheter isn’t blocked and is secured properly. If it continues please seek advice from your medical practitioner or specialist nurse.

  • Hi @Fran,

    You can still swim as long as the skin around your catheter is healed, clean and dry. When you go swimming, it’s important to check that the
    catheter is securely positioned. A good option is to disconnect the drainage bag, and add a catheter valve put at the end of the catheter to prevent leaks.

    Afterwards ensure your catheter site is clean and dried thoroughly. Good hygiene is paramount to avoid infection (you might like to discuss this with your healthcare professional).
    Once clean and dry, avoid the use of scented creams or talc and ensure the catheter is securely positioned to prevent dislodging. You might like to consider having a spare set of leg straps and then allowing 1 set to dry whilst wearing the other.

  • Hi @Holly

    Some people can experience a heightened sensation around the suprapubic site – this usually reduces with time. The catheter site may produce a discharge for a few weeks – which usually dries up – but for some people this may continue and it may need a simple dressing to cover it. It’s best to speak with your healthcare provider about your options.

  • Gloria

    I had a spc fitted 5 wks ago. Can I ask anyone if a catheter can be too big. Im only a small person and sometimes when I sit down or lay on my back im uncomfortable. Is this normal.

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