Bladder Cancer and Colostomy

So sad to hear of this latest set back for you. Does sound as though oncologist & urologist disagree. No-one can force your husband to have something he doesn't want. I can understand how difficult it is when the medic is hard to understand. Perhaps you can ask for written information? Maybe approaching the PALS department would help, as they can advocate for you and ensure that you get satisfactory information. Best wishes.

Thank you for your reply and I think I will contact PALS to see if they can help me.

Unfortunately my husband cannot seem to digest all that the geriatric Doctor tells him so I get only half the story.

Kind regards

Hi FloGlow,I’m so sorry to hear that your husband is in hospital.I was also going to suggest PALS you sound like you need some clarity.It’s no good when you have conflicting opinions it won’t be helping the stress levels.I hope you can get some help.Love and best wishes Jane x

Thank you so much for your kind wishes.

Just to clarify — in my brother’s case, bowel surgery was only discussed in the context of the full radical operation(removal of the bladder, prostate and lymph nodes), where a urinary diversion using a piece of bowel would be needed to create a pouch or stoma for urine.

A bowel bag or pouch was not discussed as a standalone procedure, and it was never proposed as a requirement in order to place nephrostomies or support kidney function. The nephrostomy bags were purely for kidney drainage, and he also continued to pass urine.

After a very difficult TURBT — where the tumour was extremely vascular and caused severe bleeding requiring multiple blood transfusions and ICU care — MY brother decision after nearly dying on the operation table , the focus shifted to stabilisation and quality of life rather than rushing into further major surgery. had radiotherapy small target amounts months later , April to now his journey.

From our experience, it’s really important that teams clearly explain whether they are talking about urinary diversion as part of bladder removal, or a true colostomy, as these are very different things with very different implications.

You are not being unreasonable to want this explained clearly before any decisions are made.
Sending you strength.  

Just to add - It’s reasonable to ask what bacteria they’re treating, whether cultures have been taken, how kidney function is coping, and whether stabilisation is the priority right now.

You’re not wrong to want clarity what hospital is he been treated at. some hospitals will look at sparring the bladder ,best wishes.”

Thank you so much for your kind reply

Apparently they are having a team meeting today to discuss what to do next.  It is all very difficult as I am elderly with hearing problems.

Also we cannot visit him as he has now caught Norovirus while in hospital.

Thank you all for your very kind wishes and advice.

• I'm so sorry you are both having all that to deal with but certainly talking to PALS is a good option. 

Sadly sometimes surgery is difficult because of age and fitness etc and I think you have to weigh up the pros and cons of the surgery and recovery time etc, 

The doctors are the ones that are supposed to have the answers and tbh I think if they don't think it will provide the best outcome you have to consider whether it is worth the operation or not. A personal choice obviously but I know the older you get operations become way more risky generally.

I hope you can get things resolved with the hospital. 

Thank you for you for your kind reply - I am so relieved that it has been decided that the coloscopy operation is not necessary.

I am now waiting to hear what the Urology team decide to do next.

Unfortunately he has now gone down with Norovirus, so even though visitors are now being allowed, we cannot visit him.

If is awful when things happen on top of everything else you are dealing with as it is. 

well done