Catheter blocking?

  • 33 replies
  • 45 subscribers
  • 1847 views

I recently joined this forum for moral support and have found it has helped me and others a lot. While I recognise that our treatments for bladder cancer will vary considerably depending on each case history, my personal experience may give some comfort to fellow sufferers and be less alarming than just studying straight statistics. I had for many years had kidney stones. They became troublesome from around 2010 onwards, giving pain and blood in my pee once or twice a year. Ultrasound confirmed that I had stones, as did the sound of a ping in the WC when one passed. I lived with the problem until the blood in pee became a concern in July 2017, prompting me to see my GP. I tended not to rush into the medical environment very willingly because I had a fairly extreme medical phobia (white coat syndrome). My GP wondered whether my kidney stone symptoms were masking something else e.g. bladder cancer, and tests were organised. Ultrasound, flexible cystoscopy and CT scan(s) were thus on the agenda. I sought help with my building level of terror caused by 'tests,' needles and possible cancer. The NHS quickly found a place for me in Cognitive Behavioural Therapy sessions. These did not immediately cure my phobia but were an immense help in gradually dismantling my fear and gave me hope that I might at least be able to act like a normal patient some of the time and avoid fainting whenever a needle came near me. By this time I was frequently getting my waterworks blocked with blood clots for several hours. The 'tests' were endured a month or so after the visit to my GP. Ultrasound: No big deal. Flexible cystoscopy: I was grateful that nurses held my hands! A small lesion in my bladder was found. CT scans provided further details and a TURBT was scheduled, plus a blood transfusion or two to replace my leakage. The support I received from Macmillan nurses, other NHS medics and my family was superb as I began this daunting phase of my life in my late 60s. Pre-TURBT assessment caused me to be diverted into radiotherapy instead, at least until a non-related health issue was further investigated. Roll forward a few months and my symptoms (bleeding) which had been suppressed by radiotherapy returned with a vengeance. More transfusions followed, then an ambulance ride because my works blocked. Things were beginning to look extremely grim. I felt so ill that I gave up hope. I was placed in a side ward and my son and daughter were told I might only last a few days, maybe a month. A chaplain visited...   An emergency TURBT was performed. I very slowly began to respond i.e. the bleeding greatly reduced. I was discharged from hospital after nearly 4 weeks. A few months later the bleeding started again and became excessive, requiring further transfusions and ultimately another TURBT. Recovery this time was better. A sepsis admission in that eventful year completed the drama.  Since then, much to my surprise, I'm still here, living more or less normally albeit with a urethral catheter which is tending to block before the 12 weeks normal replacement cycle. Catheter replacement has always been quite painful for me and is often followed by varying degrees of blood in pee which lasts for an hour or so. Yesterday's blockage, catheter replacement and mild rosé earlier this evening is no exception. BUT I'm still here and will I suppose have to begin stamp licking for yet another Christmas. Incidentally, one of my coping mechanisms is to keep a diary of my symptoms of the bladder cancer. When they reappear, the fact that similar symptoms have come and gone over the last 5 years without much drama actually helps me to put them in perspective and reduce the mental stress.   Essay over. It has helped me. Thank you. This evening's rosé seems to have stopped whilst writing this as well! Merry Christmas everyone and good luck!      

  • Hi  . That's some story. So much so I had to read it twice. You have been through so much and are an inspiration to many especially with your fear of the treatments. Good to know you are well although with some cath problems. Wishing you all the best going forward and I hope you have a great Christmas and New Year with family and friends. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi RayMK,Goodness you have been through a lot.It was good to read that you have made progress with your medical phobia.I hope you find lots of support in this group.Best wishes Jane 

  • Wow Ray MK that is  quite an experience that you have highlighted. I am so pleased your treatment and coping strategies appear to be helping. Merry Christmas to you. Garviv 

  • This catheter is not even 2 weeks old and has already blocked once, fortunately yielding to a change of position which caused a rush of sediment. Today a very small dark red clot passed through the tube to the bag and there's just a hint of muddiness in the bag. I should not get too excited about such occurrences as they've been typical of my experience over the last few years. More water seems to be having the desired effect.  Thanks for the kind, supportive words expressed on here. They help me and I'm sure they are an immense help to many on here, particularly if just embarking on this sometimes tricky course. Best wishes to all for a cheerful Christmas and an upbeat new year!

  • Hi Ray. As you say. plenty of water is the general advice to prevent blockages. I hope you have a trouble free long weekend with it. Wishing you a happy and healthy new year, and wishing you all the best going forward.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • I think that I will be contacting my GP once the holiday period is over. My rosé pee incidents of the last couple of months, although mild and typically lasting only for an hour or two and not every day, seem to be occurring more frequently. I feel ok but I'm finding it more difficult to cope with the psychological effects. On the positive side, the twice weekly catheter flushes I carry out using prescription 3.23% citric acid twin sachets have helped to extend my time between complete blockages (necessitating catheter replacement) from 2-3 weeks to at least 5 weeks over the last 12 months since the hospital recommended them to my doctor. Prior to the prescription I was using sterile water from a sterile irrigation syringe but eventually the blockages required more pressure than I could apply before the connector popped off! Flushing and even blocking does not affect my morale anywhere near as much as bleeding, however slight.    

  • My outflow has remained normal for the last 15 days and the current catheter will have been in place for 5 weeks in a day's time. I'll call that acceptable even though frequent attention is required to maintain reasonable flow. I'm drinking around 3 litres of water per day which is only slightly more than I've been doing for at least the last three years. Fortunately with all the rain we've had recently I'm unlikely to drink the local reservoirs dry just yet.  

  • Hi Ray. It sounds as though things may have settled down a bit. Hopefully you are feeling better overall. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • An update. The catheter lasted exactly 6 weeks before it blocked on 22nd January 2024, could not be unblocked by flushing and was therefore replaced by the superb Same Day Emergency Care team at my local general hospital. This has become the typical routine over the last 18 months. Apart from the nurse having to fight my prostate for 5 minutes when installing the new catheter, the whole process wasn't too bad and for a change there was hardly any trace of blood during or after the procedure. The 'new' catheter will have been in place for 5 weeks in a day's time and has been relatively trouble free so far. It is strange how identical catheters can vary so much in post replacement comfort. I'm hoping that this one will last at least 6 weeks before the twice weekly prescription 3.23% citric acid flushes become impossible due to flow restriction, necessitating replacement. I think the next one will be my 25th.  

  • Hi RayMK,I hope the next replacement goes smoothly.Best wishes Jane