Hello Binkey35,

Thank you for your question I am sorry to learn about your dad’s situation.

I wonder if you originally posted your question in the ‘Ask the Nurses Section’. I mention this because we received a notification of your post. As it is no longer in our section I wonder if you moved it because you were hoping to get support and information from people who have been through it rather than a professional opinion.

I do hope that someone is able to respond, but I think that it may be a tall order. This is because the type of operation that your dad had is not overly common.  Bladder cancer is more common in people who are very elderly and they tend to have a number of health problems and  are often not fit enough for such major surgery. Also the extent of the cancer can rule some people out from having a new bladder reconstructed. We do have a lot of supportive forum members, but you are more likely to get specific support from the Urostomy Association. They they offer information and support to people with all types of urinary diversions.

I must be honest and say that I have not really looked after many people who have had a bladder reconstruction and my personal knowledge is a little limited. So I think that your best source of advice is likely to be the specialist urology nurse at the hospital. Another difficulty is that there are different types of operations and I am not sure what has been done for your dad. But as a general rule of thumb doctors check that the new bladder is not leaking about 4 weeks after the surgery and if all is ok the urinary catheter can be removed. At first people may experience lekage but your dad will be given pelvic exercises by his specalist team. They do help. Other tubes often come out before the catheter. Healing can take longer in some men.

Your dad has been through major surgery and the first 2 to 3 months are often very difficult. So try not to be too disappointed by his seemingly slow recovery. I don’t think that it is particularly unusual to get setbacks in the first few months after this type of operation 

I hope that this helps a little. Do get back to us if you have any other questions our freephone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am to 5pm.

Kind regards,

Jean

Hi Binky,
 

I am sorry to hear what your Dad is going through but hope his recovery continues. I had a radical cystectomy in November and have recovered well and am driving again and starting a phased return to work. It is a very big operation and full recovery can take a long time. I opted to have an ileal conduit rather than a neo bladder which I beleive is a quicker recovery as the neo bladder needs to be trained etc.I assume the cathetar and drains are due to the neo bladder as I didn't have anything like that after the op save or a stent that was attached to my stoma and was removed after 10 days so I don't know how long those will remain. If you use facebook there is a very active forum attached to the Fight Bladder Cancer charity and there are many people on there who have had the operation.

I hope your Dad feels better soon, it is a tough surgery but he will get there x