I'm so sorry to hear what has happened to your dad's bladder after the BCG treatment. My husband had his bladder removed last year due to advanced bladder cancer. Your dad may have 2 options here. Sometimes they can make a Neo bladder out of a piece of the colon, which stays inside the body. This has the advantage of being able to pass water reasonably normally, although it has some disadvantages too. Because it is made from Colon material it exudes the same goo that the colon does, so the patient has to be able to self catherterize to clear it every so often. They also have to kind of squeeze their tum to pass water, as it can't work exactly like a bladder. The advantage of this proceedure (if offered) is no urostomy bags. The other option is to have a urostomy with a bag attached to the torso by special glue, which is what my husband has. He has had very few problems wearing a bag. A couple of accidents in the early days with things coming loose, and one faulty batch of bags where the glue was no use, but apart from that it has been OK.I'd like to say he leads a normal life, but unfortunately as I said his cancer was very advanced so his cancer has spread. It is that which prevents life being normal, not the urostomy. I presume they have checked your dad's prostate, and haven't overlooked that because of presuming its the BCG? Just checking!!Please feel free to ask anything your not sure of. You can pm me or request as friend if it helps.
Speak to your GP or Mac nurse. They should be able to get him the usual "bottle" for night use. The sort with a wide neck and a flat bit, so that it doesn't knock over easily. That at least will help, so that he doesn't have to keep getting out of bed and going to the bathroom. I know how bad that makes things, because of how my husband was before he had his bladder removed.
Hope you find all the info you need, but don't go scaring yourself to death!! We've all been there too!!
Hi xyster. I had 2 years of BCG and had one course in the 3 rd year and then was due another course last month which after talking to the nurses it was decided not to have as I was suffering very badly with pain and frequency. I was going on average 30 times day and night so like your Dad I was exhausted as was like this for a year. I have been having repair treatment now every week for a year which has helped a bit but I found the only thing that helped a little was diet. Keeping away from anything that made my urine acidic which is a lot and makes food very boring especially if you love spicy tasty food! I had a shoulder replacement operation a couple of months ago and when I was in hospital I had a catheter as didn't want to have the frequency problem on top and it was removed after a few days and when I went home my frequency and pain were so much better. It gave me hope that it was improving but unfortunately it started to revert back after about 6 weeks. I have read several forums on CI with people having the same symptoms as myself and the treatment that seems to help them most is reducing the acidity in the bladder which makes sense so I have started taking bicarbonate of soda 3 times a day in a glass of water and it is certainly helping the pain. I am thinking of trying prelief tablets next and see if that helps. The treatment I have been having at the hospital weekly at the moment is Ialuril.
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