The challenges of suprapubic catheter care

Saturday 20th June will be two years since I was fitted with my suprapubic catheter. The majority of the time it has been good with successful catheter changes and minimal complications. However, from early 2019, I’ve encountered further complications with several trips to A&E and admitted for a couple of minor operations.
If you regularly read my blog, you’ve probably seen me sharing my catheter dramas on my monthly summaries. But if you haven’t and would like to know more, here is my challenges of suprapubic catheter care.  

Regular suprapubic catheter blockages

Since I first got fitted with my suprapubic catheter, I usually got the catheter changed by a district nurse every eight weeks. However, following initial complications by district nurses in February 2019, complications continued three more times in summer 2019.

Every sixth week, my catheter became slightly blocked and my bladder went into spasm, causing me to wet myself. Therefore, I called the nurses to have it changed early. On two occasions, it’s been a success but the third time, the nurse failed to get it out. She was reluctant to keep trying and told me to head to A&E.

So, I travelled to the hospital, got myself admitted then sent to a ward. The consultant came and changed it with no issues. I asked whether I needed an appointment with the consultant to find out why I keep getting this complication every six weeks. He suggested botox in the bladder, but I need to go through my GP and get a referral.

Once I got home, I phoned the GP who referred me to the urology clinic at the Alton Community Hospital.

A couple of weeks later in October, the catheter got completely blocked, resulting in needing it changed again. Three weeks later, it began bypassing again meaning I needed another change.

In addition, my urine smelt unusual, which made me think I had a urine infection. I sent a urine sample to the doctors to be tested.

While at the surgery, I asked the receptionist to chase up my referral to the urology clinic so I can discuss these complications with a consultant. It turned out the referral was never made despite asking 5 weeks ago. I was very pissed off.

On the plus side, when I got home, the doctor phoned to confirm I did not have a urine infection.

In November, I had three more blockages resulting in three more changes and was still awaiting an appointment with the urology consultant.

Chasing urology referral

I received a referral letter eventually but when I went online to book the appointment, the next available appointment was in March 2020. I definitely wasn’t going to wait that long. I left a message on the online system explaining my situation and that I needed an urgent appointment.

For about two weeks, I still received no contact. I then phoned my GP again to see if they could chase it up and they offered to send another letter. The following day I called the admissions team at Basingstoke hospital and explained my situation and the lady that spoke to me said that I should be on an emergency list rather than a general referral list and she would contact the urology management team to get this sorted.

From that point, I’d still not received any news. On one occasion when I had to call the nurses out to get the catheter changed again, the nurse who visited me gave me the direct phone number for the urology department. The next day I phoned that number and left a detailed voicemail explaining my situation. A week on, still no response.

Then on Thursday 28th November, I received an unexpected phone call from my GP. Initially I thought she was ringing to give me some news that they’ve organised an appointment but when I answered she just mentioned something about the referral again and that she has sent the second letter as mentioned before and then went very quiet. So, I explained I wasn’t expecting a phone call from her and that since I last spoke to the GP, I’ve also contacted urology myself and left a message. She then just said don’t worry I’ll look into it and the phone call ended.

I know the NHS is under pressure, but this was becoming a joke now. How difficult is it to say to a consultant we have a patient who needs urgent treatment so please get in contact with her ASAP!

Urology consultation

After almost four horrendous months of catheter complications, I finally saw a urology consultant in early December.

I was admitted into hospital for minor day surgery to have a camera inserted into my bladder to see what was happening. It turned out my bladder was rather small, or even shrunk, meaning it was causing more bladder spasms.

The doctor also gave me a bladder wash and enlarged the hole in my abdomen in order to insert a size 16 catheter, after spending more than nine months using size 14 catheters.

Suprapubic catheter washes

Since this procedure, my bladder has been clear with no crystals or blockages. To keep this flowing nicely, the consultant suggested I get weekly bladder washes and the district nurses should come out to show my carers how to do it.

Unfortunately, the process to get this organised took forever. Two days after my minor surgery, I received a phone call from the nurses saying they would get the doctor to prescribe me the sodium chloride solution to do the bladder washes and come out to demonstrate on the Friday.

The day before, I went to the pharmacy to collect the solution but the pharmacy had no record of the prescription. I phoned the GP surgery to find out and they said it should be available Friday afternoon. I phoned the nurses to rearrange the demonstration for Monday. On Saturday morning, I went back to the pharmacy and there was still no prescription.

On Monday morning, my Mum went to the GP surgery for me to find out where this prescription was. It turned out there was no prescription made. Instead, the doctor didn’t know which solution to prescribe and just gave a note to the receptionist to pass on to the pharmacist. However, the pharmacist never received the note as it was left in a drawer at reception.

My Mum managed to speak to the GP who admitted he didn’t know which solution to prescribe, despite speaking to the district nurses. He gave me a prescription for sodium chloride 0.9% solution but still wasn’t sure if I needed the acid component too. Surely, the doctor should contact urology to confirm the prescription.

Mum went to the pharmacy to collect it but the pharmacy needed to order it in and it wouldn’t be available until Tuesday. I phoned the nurses again to cancel the demonstration and they said they would speak to the GP too.

The next day, Mum went back to the pharmacy and finally got the sodium chloride solution. The following day, the district nurse finally came to demonstrate the bladder wash. It was a very simple procedure with no pain. I just felt minor discomfort like I was desperate for a wee. I’m just annoyed this wasn’t suggested when I first got my suprapubic catheter fitted.

Bladder botox injections

After 10 weeks of no further complications, I went back for a scheduled procedure to have botox injections inserted in the bladder to prevent bladder spasms and to have my catheter changed. I had the surgery done under general anaesthetic, meaning I was asleep throughout. When I woke, the consultant said it was success and I felt fine.

I did ask him about returning to hospital for my regular 8 week catheter changes but he didn’t seem to know. So instead I had to go for a GP appointment to discuss being referred to the community hospital for my future suprapubic catheter changes.

Suprapubic catheter changes at urology clinic

The following week, I explained to the GP I would prefer to have my catheter changes done at a urology clinic rather than by district nurses because of the complications last year. She was very supportive and agreed to send me a referral. A few days later, I received a letter to book an appointment on the NHS e-referral service. I logged on and the earliest appointment available was August, which is ridiculous as I need to change my catheter every eight weeks. I phoned my GP, the community hospital and Basingstoke Hospital to chase it up but nobody could give me an answer.

The following day, a urology nurse who treated me before phoned me to find out what was happening. I explained the situation but she apologetically explained there was no guarantee of a hoist or bed being available. At this point I just had to accept the fact I will have to use the district nurses.

Then a few days later, I received a text from my GP surgery saying my GP has booked me an appointment to have my catheter changed at Alton Community Hospital.

Coronavirus disruptions

However, due to COVID-19, all non-essential clinics had been stopped until further notice. So instead, I had district nurses come to my house three weeks earlier than the original due date. Luckily it was a successful change and the nurses had PPE.

With social distancing measures still in place, I’ve continued having district nurses come to my house to change my suprapubic catheter. Fortunately I’ve had the same nurse each time and he is confident changing my catheter. My last scheduled change at eight weeks was rather painful so this nurse suggested I schedule my changes for six weeks instead.

The only other minor issue is my hole can leak discharge and blood and I have to clean the area with antiseptic.

Loving life with a suprapubic catheter

So, as you can see it has been a challenging year dealing with my catheter. But now I have the right equipment and support, I’m happy to say I’m still loving life with a suprapubic catheter.

Are you a catheter user who has dealt with challenges and complications? Please share your stories in the comments box or social media.

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