4 years with a neobladder - Happy, but Confused

Arthur,
I can tell you that after my neobladder healed that things actually improved. No more 3 month check ups and cystos's, no more bcg treatments and the knowlege that I had done everything possible to beat the cancer. I had much more peace of mind after my neo. I will tell you what I went through and that may give you an idea of what to expect.As far as my operation, it was not as bad as what I thought it would be. I was in the hospital 8 days. I went home with the typical hoses and bags. I had a foley cathiter, A wound drain comming out one side and another drain from my neo on the other side. I also had stents in my kidneys that exited in small tubes by the wound drain. I had one complication and that was that my neo had a leak and was leaking into my abdomen. That healed on its own after the 10 days at home. My wife assisted me in back flushing my neo through the folley and out the neo drain every 4 hours. after 10 days I returned to the hospital and had all the tubes removed except the drain from my neo. This allowed me to have 2 ways to empty the neo, which gave me peace of mind until I got used to the new equipment. If I remeber right I went back a week later and they removed the drain from my neo. I had very little control at first, but after a week or so I slowly gained continence. I was out and about by three weeks after my operation. After 4 weeks I gained pretty good continence and by 6 weeks I was about 95 per cent continent. 100 per cent continece (durring the day) came at about 2 months. Night time continece came about the same time, but was not 100 per cent. I did not experience any real pain durring this whole time, just discomfort. Today I am 100 per cent continent durring the day and have just a little leakage at night once in a while so I wear a pad at night. My life is really no different now that it was before the cancer. I hope this gives you some idea of what to expect. Everyone responds a little different to this surgery, but hopefully this gives you an idea of what to expect. Again, one of the most important things is having a very skilled surgeon. If you want to know anything else just ask. Im sure others would be glad to tell you of there experiences also. Hope this helps.

KC

KC,
I am happy to hear that you are 4 years in and going strong. I hope for your continued success and good health.

I have invasive bladder cancer and going through pre surgical chemo. I am in the second round of three and have certainly had my trials with it. The Uro is stating surgery is imminent and will be sometime this summer after last round of chemo.

Based on what I have been going through the last few months of treatment, several cystos, stents in both ureters, pain and discomfort from the stents, brief hospital stay due to high level white blood count, infection in the ureter, nausea, fatigue, etc. etc. etc., in some way I am looking forward to the surgery to remove the bladder and deal with the neo. However I know there will be many trials and tribulations ahead of me to deal with post op.

Can you share some insight what I can expect to go through? I know it will not be a picnic, but at this point should I continue dealing with what I have in front of me with treatment or plan for the surgery and after.
Thank you
rgds
Arthur

Hmmmmmm, I guess I will really putting my NEO to the test, when I return to playing hockey in the fall. I will let you know how it reacts. I'm really not ready to hang up my skates at the ripe, young age of 50.

Jim

Thanks Mona,

That is reasurring and it makes sense because I am pretty active also. After one episode of bleeding my uro did a cysto and said my neo looked red and irritated. He did not say that he thought that was the source of the blood though. I have always suspected that it was just an irritated neo. I have learned that the doctors dont always have the answers and thats what makes this site so important. Your husband will soon be passing the 4 year mark too, so congrats to him also.

KC

Hi KC,
My husband has had his neobladder since October 2006. He has blood in the urine sometimes. It was alarming for the first couple of years but his urologist reassured us that he sees this in very active people, where the bladder gets irritated. My husband is 39 and is a regular cyclist.
Congratulations on the 4 year mark!
Mona

Yep...Glassy Eyed 101...first yr. resident requirement.
pat