One patient with glioblastoma still alive nine years later
by JeanneC on Tue Feb 03, 2009 12:00 AM
by mikemc on Wed Feb 04, 2009 12:00 AM
I had my bladder, prostate, and 41 lymph nodes removed on October 10, 2008.
It's a long surgery (mine was 7.5 hrs) and people react differently to being under that long. The day after my surgery, I felt great! I started going downhill after that though because I wound up with an ileus. That's when the intestines don't wake up properly so nothing gets through. I think that was a much bigger problem for me than the cystectomy. It added an additional week to my hospital stay. It is not rare but it is also not the majority that wind up with an ileus, but it is something to be aware of.
WIth regard to the trip home, no he shouldn't need a hospital bed, and please be very careful going over bumps. I found it helped to hug a pillow to my abdomen during the drive. He will most likely have a catheter in for the trip home but that doesn't really cause any problem.
Find out if the doctor plans to use staples or stitches when he puts the intestines back together. I wound up with an intestinal blockage just a couple of weeks ago because I didn't know that two naval oranges could stop me up at the intestine repair site. Another doctor told me that stitches allow for more stretching of the intestine after the surgery but I do not know the benefits of staples so I can make no recommendation. I have the tiny titanium staples. Now that I know to be careful with oranges, tangerines, and artichokes, I don't have any issues. Just a note: A lot of people get intestinal blockages without this type of surgery. I think it may just increase the risk a bit and I was one of the unlucky few.
Once home, he (or somebody else) will need to periodically flush the bladder using a port on the catheter 304 times a day. The reason for this is that the new bladder is built small (but stretches nicely over time) and intestine creates mucous--which must be flushed. Once the catheter comes out, normal urination will flush out the mucous.
In my case, they hooked my new neobladder up to the original plumbing. That is usually the best option for men. After some time, in my case about two months (but mileage varies and I've heard of some who only took a couple weeks) he should expect to regain daytime continence. Wearing a pad in the underwear up till then is usually all that is required. Using a mattress pad to protect the sheets is probably a good idea as well. He will need to do Kegel excersises after the surgery (but it wouldn't hurt to start before) to strengthen the pelvic floor muscle. The more of those he does, the faster to regain urinary continence. It is somehting like 90-95% that regain day time urinary continence.
He will have a schedule from his doctor on how often to go to the bathroom. Starts around every 2-3 hours and gets progressively longer. I can now hold it much longer than I could before the surgery so I'm thrilled with that. Not to mention being thrilled to be cancer free.
Around 80% of people regain night time continence as well. That takes longer. I'm only a few months in but I used pads with a depends and mattress pad. More recently I got condom catheters which allow for a full nights sleep. Otherwise, he will need to set his alarm clock and get up every few hours in the beginning (increasing the time over time) to go to the bathroom. Most men his age are used to getting up during the night so it is a matter of personal preference.
Another site that I suggest you check out is the American Bladder Cancer Society. They have forums with LOTS of information from people like me who have had the surgery or its variations. There are lots of bladder cancer patients, survivors, and their family members at the site. http://bladdercancersupport.org/
Best of luck! Feel free to ask any questions you may still have.
I missed one of your questions in my previous response. No special diet would be expected. Just chew all food well and be sure to clean all that white stuff off oranges before eating them and limit it to one small orange. Eating small amounts of food at more frequent intervals is usually recommended after the surgery. It is easier on the digestive system.
by Pilot on Fri Feb 06, 2009 12:00 AM
What kind of wil it be neo or bladders are not normally done on men his age. If so and you respond I have some inf for you. Don
by JeanneC on Sun Feb 08, 2009 12:00 AM
He is not getting the neobladder. They have told us that they will take a piece of small intestine and use it to connect the ureters from the kidneys through his stomach wall to an external pouch.
Thank you for all the help so far. We meet with the surgeon tomorrow and you have already given me some more things to ask about.
by Pilot on Thu Mar 19, 2009 12:00 AM
by sparkey1 on Sat Oct 10, 2009 12:00 AM
My husband is fixing to have his bladder removed also, because of cancer. Can you tell me if they will have a bag out side of their body,
or do they make a new bladder out to the intestines that will be inside.
The Doctors have not explained this to us, and I am unable to find an
answer to this question on the bladder cancer websites.
I am going to keep you father in my prayers
Elsie in MS.
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