Expectations after radical cystectomy & neobladder

No it wouldn't happen that fast...i'm basing my theory on the fact that he is 78 yrs old and as we age we just don't metabolize B 12 as well as when we were younger.
My surgeon used 30cm of ilium ..my base B 12 prior to cystectomy was 848.....within 6 months i was down to 270...240 is as low as it should ever get. So my supply ran out quickly even though they said i should have a 5 yr supply in my liver.
I cited a paper written on it which is buried somewhere in Articles of Interest...i will search for it.
In the meantime i came up with a paper on diversions written by the U of Chicago which kind of blew me away...all the way at the bottom take a look at the percentage of complications at MSK!!!.......Holy Cra................
emedicine.medscape.com/article/448623-treatment
pat

Pat,

Would it happen that fast? His surgery was two weeks ago today.

A year and half ago, when I asked my surgeon about b12 testing, his email response was:
I know different diversions use different segments. Mine was small intestine others are large intestine.

I wonder if other surgeons are leaving more ileum these days so they reduce b12 deficiency risk now.

Just to be on the safe side, I have had mine tested twice already and it's not been two years yet.

Mike

Carol..did he have his surgery done at Vanderbilt? They have quite a few bladder cancer specialists and stoma nurses. Somehow i don't think thats where he went.
With 3 bypasses in the past i'm just amazed that they went ahead and did the long surgery and cutting and the neo. Thats tough on the heart. He should probably check in with his cardiologist if he hasn't already.
And i'll bet you $100 which i will give to ABLCS if i'm wrong that he is deficient in vitamin B 12. Have them run a serum test. That causes all sorts of weird ailments including depression and the list goes on. He will need shots as we can no long metabolize it as they use that part of the bowel for the reconstruction. A oral vitamin will not do the trick. AS we age we naturally lose the ability to metabolize B12 anyway.
Pain killers can cause constipation but my Urologist only suggested a stool softener...nothing to rough on the system as it is healing. Dulcolax is what they sent me home with.
Where is the location of the pain? Is he eating? Is he nautious? Thats another thing they sent me home with..something for the occasional bouts of nausea which also made me sleepy. I had phenergan but i think they use Zofran quite a bit now.
pat

Thanks, Mike! I appreciate the information. I'm sure he was given some kind of discharge instructions but I haven't seen them yet.

Carol

Carol,

If your dad was able to come home from the hospital that soon, it is certainly a good thing.

Here is a link to University of Michigan information and instructions for post op recovery after neobladder surgery.

UofM Neobladder recovery

Also, being worn out and depressed after the surgery is normal.

Do encourage him to walk. It is really good for recovery.
Have someone walk with him. Chat along the way. Don't want to over do it but getting the exercise helps in recovery.

It is a long recovery as it is a huge surgery. I never had heart surgery so I'm not sure which is tougher on you.

Usually, hot water and pumping the plunger in the sink can clear those blockages in the syringe but it is good to have some on hand just in case.

I am a little surprised that they didn't explain how to flush the foley while he was still in the hospital but as long as they are doing it now, it should be OK.

ALWAYS keep a close eye on the catheter bag to be sure the foley does not get clogged up. That can cause some serious damage and overstretch the neobladder and other issues.

He should ask the doctor for the flushing schedule but I think it is like every 4 hours or if it seems to be clogged.
Drink at LEAST 8 glasses of water a day to keep things going and keep mucuos down.

Use sterile water only for the flushing.

He may also need to be taking Senecot or some other stool softener. He wants to avoid constipation.

Most of this is in the document from UofM.

If he's having a lot of pain, keep an eye out for fever which may indicate an infection. Walking can help reduce pain. You don't want to let the pain get out of control but at the same time, you do want him to be weaning himself off of the pain meds and maybe switching to anti-inflamatories. Ask the doctor about this before doing anything though.

He should be very careful getting up and sitting down to not strain the incision area as he will want to avoid risk of hernia along the incision area. No lifting.

You may want to ask the doctor about the post-op care plan. That is often sent home with the patient when released from the hospital. He certainly should have had something.

If he seems to be getting too depressed, definately notify the doctor. They might want to prescribe something temporarily to help with that. However, it is normal to be somewhat depressed after this. As recovery progresses, it tends to get better.

He can also come on here and chat with some of us. A lot of us have been through the surgery. If he doesn't want to go online to do that, ask him if you can post some questions for him. We're more than happy to help.

Mike

I have been lurking the forum for the past couple of days and am hopeful that you may be able to offer some hope/help/insight/recommendations, etc.

My father (age: 79) underwent a radical cystectomy with neobladder on August 25, 2010. The urologist recommended the neobladder because my father has always been very active and he is still working full-time.

After the surgery, he spent a couple of days in the ICU (he has heart problems) and then spent several more days in a regular room before being discharged home on September 2, 2010. A home health nurse came out the next day to show my parents how to flush out the tubing.

His irrigation syringe became clogged on Monday and, due to the Labor Day holiday, my sister had to go to the hospital and pick up a new one. At the hospital, they told her that will happen every so often and that we should have a supply of them on hand.

I believe that his surgeons were very good and very experienced. However, I do not feel that he was given much (definitely not ENOUGH) information on what to expect as he recovers at home. I am going to list some of the things he is experiencing:

1. Significant pain.
2. Very tired. Going from the bed to the attached bathroom exhausts him.
3. Low spirits. He actually admitted to me yesterday that he is very depressed.
4. He is not walking like he was in the hospital. In the hospital, he was really pushing himself to walk from his room to the nurses’ station (his room was the furthest away from there) and back at least three times a day.

Quite frankly, I am very worried about him. He has had 3 bypass surgeries in the past and is not new to recovering from a very extensive surgery.

Any advice or suggestions or information on what to expect would really be helpful.

Thanks! Carol (NativeNashvillian)