BCG Treatments and catheters

Hi Uktricky, welcome to this friendly forum and BCG club. I had number 20 yesterday with varying reactions throughout. If you click on my profile i have recorded it all for reference as its easy to forget stuff if you are having so many. I think it was around number 15 I started to feel it ramped up for me. I spoke to my CNS about it immediately. I want to finish the 27 and have read how with some people, the side effects are cumulative and can become unbearable. she was a great help ( very experienced) and devised an individual plan for me. Call them today or email them , good luck , its not easy this is it ?

Thank you - I have plans to call my CNS who have been fantastic to date even giving me the instilagel to take home to put in the fridge overnight as apparently it works quicker if chilled (my treatment hospital doesn't cool it).

Hello UKTricky, your plan to call your CNS is better than just suffering in silence. I have not had BCG treatment but have had long term Foley urethral catheters for other reasons since late 2018. Trauma (bleeding) caused by catheter insertion or removal is fairly common in the 24 hours or so afterwards. I have had this problem after or sometimes during catheter replacement for about 33% of the 36 catheters since 2018. Difficulty getting the catheter past the prostate can vary considerably from patient to patient as well as at different times for an individual patient. Technique can vary as well. In your case, the BCG may have caused some inflammation which can exacerbate the tendency to bleed but catheter insertion alone can also cause similar symptoms. Drinking lots of water is the general advice when experiencing such bladder and urethral bleeding but as all patients present differently and have different medical histories it is always best to consult your medical team for advice. I've been drinking 3-4 litres of water per day for the last few years. This has helped to limit bleeding events to an hour or so whilst also making soreness quite unusual. Best wishes for your future treatment and helpful advice from your CNS.    Ray   

Hi

One thing I wish I had been told before starting bcg is the importance of mental attitude.

The urinary system is really complicated and a work of art. Not only are there the physical components but the whole system is affected by the conscious and autonomic nervous system, example wanting to urinate due to the sound of running water. This system is then disturbed by various sized catheters which aggravate or damage the valve at the bottom of the bladder and in the case of men crashes thru the prostatic area which may be enlarged due to age. Then the bcg causes a immune response in the bladder which is what we want but not pleasant. Then there is the effect on these physical components of our mental state which may tighten the sphincter to hinder the entry of the catheter into the bladder. I have found trying to destress and taking 30mg codeine ( sensible gp) a hour beforehand seems to work. I know some consultants in the states prescribe one off valium which seems to work but everybody responds differently and these things are very subjective but may be worth a try because we are all trying to get to number 27.

Best regards