BCG after effects

Hi Jacaranda07, and welcome to the forum. Just a thought which I always have when people mention painkillers being ineffective. This is that 7% of the whole population has 'different' liver enzymes [CYP2D6 and others] which do not process [metabolize] the painkilling medication properly. Therefore little or no pain relief is obtained and side effects caused by the unprocessed medication swilling round the body may be greater.

Should you happen to be on the autistic spectrum/have Asperger's Syndrome [like my husband with bladder cancer] the incidence of this problem is nearer 50%. [Whether you are diagnosed or not, and you can get a good idea if you think this might be you, by doing the AQ50 questionnaire easily found online].

Getting medics to believe that their precious painkillers do not work for you is another matter entirely.......

In the meantime I would be checking with a good pharmacist whether it is safe in your situation to try 'herbal' anti-inflammatories such as turmeric [best in oil] or devil's claw. [If you try devil's claw do so on a day you're staying in, I am fine with it for my arthritic joints but it makes some people dizzy including my OH and not all packs carry this warning]

In addition see if it is OK for you to take sustained release Vitamin C as this is great for all healing. And a decent multi-vit-mineral. [This means check the ingredients for zinc oxide, if it contains this find a different one with a different zinc ingredient as zinc oxide is not well absorbed and zinc is an important nutrient for wellness]

Hope this may be of help, 

Denby

Hello Denby, thanks for your reply. I will look into the alternatives you have named to the normal pain killers that are immediately recommended by the medical profession. 

Anything that can relieve the discomfort and pain would be very welcome. I always get the impression that we are expected to put up with it regardless.

Hi Jacaranda07,Welcome to the group.I’m sorry to hear you are in pain after your BCG treatments.If you haven’t done so you could try cutting out tomatoes,onions,spicy foods,citrus fruit/drinks as these can aggravate an inflamed bladder.Best wishes Jane

Hello winkers60, yes I have made a conscious effort to cut out those liquids and food that are known for their irritative qualities to the bladder. I know it's difficult to blank everything out with our modern living. 

It's strange how it can be very painful for a few hours but it can lift on its own accord for no rhyme or reason. It causes anxiety because you cannot plan for anything. I do thank you for your concern, fingers crossed over time it will rectify itself.

I feel for you,I had Interstitial Cystitis for over 30 years before bladder cancer and the pain was awful.I hope your bladder settles once the treatment is over.Best wishes Jane

I do get some comfort knowing I'm not alone in my predicament and able to discuss it with like minded people. It's difficult to know which way to turn sometimes, I don't like ringing the hospital clinic as you know they're busy with plenty of other patients who may well be in a worse state than myself.

Thanks again for your kind thoughts.

Hi Jacaranda07, sorry to hear you have cystitis from your BCG. I had some cystitis-type sensitivity to BCG but not with every dose. Good news that you can get to talk to your specialist nurse (my CNS was my best friend throughout my BCG treatment) and great that they can give some drugs which can help repair the bladder lining. Keep us posted on your progress? Cystitis is sooo painful and demoralising. You seem to be doing everything you can to help yourself. Drink, drink, drink became my mantra and even though I completed all 27 BCG doses in August, I still find myself obsessively knocking back two litres of lemon-barley water daily (another very helpful tip from Denby I believe). I guess your doses are 6 monthly now? So hoping the breaks in between treatments will bring you some relief.  Sending love H x

Thank you Herothedog for your reply. You have done really well to achieve 27 BCGs. From what I read many do not achieve anywhere near that amount. I know we are all different and it certainly affects some people more than others.

I shall certainly take on board the lemon barley water, makes it all a bit more tastier. Just got to get through this difficult period. I did suffer earlier in the year from previous treatments but after 12 weeks it did clear away on its own. I'm hoping that this will eventually do the same, the nurses seem to think that, it's a long slog but to get out the other end you sometimes have to bite the bullet.

Thanking you for your kind thoughts. Jac.

Hi I'm having Bcg No 12 this week and I've so far evaded cystitis. I drink a pint of hot water with half a lemon squeezed into it. My pharmacist recommended this.