Bladder Removal

My dad is about to have his bladder and prostate out. he has grade 3 bladder cancer and they are taking the prostate for preventative measures. He will have a new bladder made out of his intestines. Could anyone discuss the recovery process and what to expect in the days, weeks and months ahead? Any informaiton would be greatly appreciated. They dont beiliev that the cancer has spread but wont know unitl after the surgery.

Thanks,
Deb

Hi Deb,

I wanted to tell you that unfortunately, I am wondering the same things. My husband is getting ready to have his bladder & prostate removed and is also hoping to get the neo-bladder. I am anxious to hear what others have experienced so we will know what to expect. My husband is 28 years old & we have a 7 month old baby. I hope you get better responses, because I would feel more at ease if I knew what we will be dealing with as far as recovery.

I hope we both get answers & that your Dad has a fast recovery as well.

Stephanie

Hi, I had my bladder removed and a neobladder reconstructed. The rcuperation period is not easy. I was tired, scared and confused. I had my surgery at USC on April 29 2,004. At this point I have total daytime continence and some incontinence at night. It is a great thing though. It was worth doing. I was lucky in that the reconsttruction was possible and if your dad qualifies I definitely recomend doing it.
If I can be of any help please contact me I'll help any way I can.
Luis

Dear Stephanie,

My dad has had is bladder and prostate out. Fortunately he was able to have the neo-bladder made for him. So far the recovery has been difficult but manageable. He was in the hospital for eigt days and needed it. We had a family member stay with him every night of his hospital stay which I strongly recommend. There were many times that errors could have occured or he needed something ice chips etc. He is home now and I think the fear is worse than the pain for dad and hes very tired. I hope all goes well for your husband. My dad had cancer in his prostate when they took it out but not in his lymph nodes or uterus.

Hi Deb,
My husband had his bladder & prostate removed in March of this year. It has been a very rough 6 1/2 months for him and me. He is doing a lot better now but he did lose about 50 pounds in just 3 months. They made his new bladder out of his intestine. He was back in the hospital within 3 weeks after he got out with an infection. He has had several urinary track infections since the surgery. He has been hospitalized a total of 4 times since the surgery. He contracted an staff infection and it took along time for them to find it. He got down to 128 pounds and nearly died. But a infectious disease dr found the staff infection and treated it and he is fine except for another urinary track infection. He is now back to work and up to 146 pounds and hopefully on the road to recovery. we have both said if he had it to do over he would not have gotten the neo bladder. He would have just got the bag. Be sure to read everything you can about the side effects of the surgery. There are things we know now that we didn't before the surgery about the neo bladder surgery. And one more thing is my husband now kicks one leg out and stumbles a little from the surgery. May God be with you and your family during this trying time. If you have anymore questions feel free to get back with me
And just because my husband had it so bad doesn't mean everyone would.

thank you for the information. dad did go with the neobladder and i will tell him to watch for infections. where was his sugery performed? Ours was at the University Of Chicago. what were the symptoms of his staff infection?

Deb

He had his surgery in Springfield Illinois. When did your dad have his surgery? As you probably already know there is no feeling in the new bladder so it makes it hard to tell when there is an infection. But Tom was not eating and had no appetite, his blood pressure was also low and he didn't want to get out of bed. The one thing that I noticed was his blood pressure seems to get pretty low everytime he has has an infection. But this time he had some burning so he knew he had one. I hope your dad is doing well as many do when they have the surgery. Tom was just one of those that didn't do so well. But they did get the cancer . Now they have found a spot on his kidney and we are waiting for a cat scan to tell if it is anything to worry about. Let me know how your dad is doing please.

I am sorry but I didn't tell you what the symtoms of the staff infection were. His blood pressure was low, he didn't want to eat, and he had very loose stools. It is very hard to find out if they have a staff infection, but staff infections do kill people everyday. So if your dad has any problems and he doesn't seem like you think he should be sure and have things checked out. I thank God everyday that we got Tom to the hospital in time.

Almost two weeks after sugery and dad is still very weak with very low blood pressure. I will mention making sure there isnt an infection. Thanks for that information. His biopsies are clean, but as you know things can change so we are praying for the best. his lymph noses are clean but i havent heard wheter the doctor is going to still recommend chemo. did your husband have chemo?

Let me know how his kidney is please.

Deb

Hi,
I find your story interesting. A lady called me before my husband's sugrery. Told us about the great doctor that did our surgery. she is fine with the internal bladder and has to cather her urine out. She teaches school and does this with an internal bladder.
Our doctor compared the external bladder with a very dependable car and the internal bladder with a super impotrted modle that can need extra care.
My husband took the outside bladder and was back to work in 6 weeks. He is doing well on his health tool What a blessing it is to write that we are through all this fear.
I wanted him to have an internal but after reading your stories, the outside one looks just fine. We are doing well with convetex wafers and glue.
We had a little trouble getting the best wafer for him. The companies send samples as we requested and they ask questins as to what he needed.
rose