Once again it is always something

Unfortunately the answer is in and there are no creative answers to this one. I could try to have the ureter fixed but what is to keep it from closing again? We got lucky this time and it does not appear that any more damage was done to the remaining kidney. I spent some time last week worrying about if I was going to losing it and the ramifications of that. If we just try to fix the ureter and hope for the best I will always have to stay close to a hospital and wait for the other shoe to drop and hope it does not drop too hard. Add to that the fact is I am 53 and it would leave me open to infections at what point does the antibiotics stop working?

As for reusing the intestine that was used in my existing diversion I asked about that and it was a big no. It seem the way it is pieced and how it would be reused would not work. To bad I would have liked to have gotten out of them harvesting any more intestine.

Ok time for an update. First of all let me apologize for not posting for a few days but I had to take a day to get over wanting to kick something once all the facts were in.

First of all let me say for anyone that does not know my situation that what you read about my case will not apply to most people who have a Radical Cystectomy. I have had a lot of pelvic radiation and that complicates thing for me personally. Also I am down to one kidney with limited function so that also complicates my personal situation.

The hope was that the blockage to the ureter was from inflammation due to infection. But it now looks like the infection was caused by the blockage in the ureter due to scar tissue. Two top Urologists agree and recommend the same course of action I am waiting for one other opinion but I really don’t think it will be any different there are situations that go to a baseline with little choices and this seems to be one of them. Due to the fact that there is not long enough usable ureter to feed the Indiana pouch and no way to fix it they are recommending that they do another Radical Cystectomy (or whatever the name is for it now) removing the Indiana pouch harvesting new intestine and doing a Ileal Conduit. Who would have ever guessed that I would once again be looking at Radical Cystectomy again I thought been there and done that?

I have a Neph tube in now and next week they are going to take me to interventional Radiation once again and try to pop through the ureter blockage and run a more stable line trough the kidney ureter and into the Indiana pouch. This will do two things make the neph tube less likely to slip (landing us once again in an emergency situation) out by accident and allow then to find the ureter during surgery with ease. I could try living long term with a tube such as this if and it is a big if they can get through the blockage but there would always be the worry of it clogging up or repeated infections.

They want to wait for six to eight weeks after the infection is cleared before they do surgery. This will give me time to get my ducks in order. I am making an appointment with a good Ostomy nurse to start the search for products that work on me as I am very allergic to tape. I already have metabolic syndrome due to damage to my intestines from radiation and it was made worse by the last radical cystectomy so losing more intestine does not look good on that front. So I will be meeting with a nutritionalist to come up with a diet post RC to try to alleviate some of the problems.

As I was sitting in the office getting these recommendations I had to remind myself that this is not the end of the world there were others in the office counting life not in years but in months. The up side of this situation will be getting to the other side with my remaining kidney protected as much as possible. I am sure once I am feeling better after surgery I will be back to my Mary Sunshine self but at the moment anyone who tells me to look at the bright side may get decked.

Thanks for all of the support my family here means more to me than anyone can imagine.