Recovery Time

I wonder if it's because of being in our 70's that the surgeons and the nurses told me exactly the same thing they told Nanaca. I cannot have the neobladder becaue of the location of my tumor and the surgeon will do the Indiana Pouch but strong advised the ileal conduit becaue of "my age" and the ability to catheterize as I get older and also because the ileal conduit uses the least amount of intestine.
I have noticed from reading the board that most younger people have the pouch or neobladder unless there were extenuating medical circumstances and the majority of older people have the ileal conduit.
I also am very worried about being allergic to the tape.
Jean

blcwebcafe.org/cgi_bin/forum/nph-YaBB.pl?board=invasive

Hi,

Have a look at the link about with posts from Linda W at the top of the page under 'important topics', if you haven't already.

I'm very surprised that the doctors and nurses from Sloan would recommend an ileal conduit over the pouch or neobladder. Unless there are extenuating circumstances that make surgery risky, I've never heard of someone being told the external pouch/ileal conduit is better or easier, or less problematic.

It's unfortunate that you only met women with problems with their pouch. I have met so many women who are more than satisfied with theirs, maybe you should join our discussion group ( blcwebcafe.org/listinfo.asp ) and talk with them yourself. Women with neobladder and Indiana pouches far outnumber those with ileal conduits unless it was done a long time ago. It's very old fashioned these days. Again, I'm shocked a nurse from Sloan would claim it was the better option! Everyone -meaning the experts that publish in journals-agrees the newer techniques offer excellent quality of life.

Unless people are unfit for the self-care that neobladders and internal reservoirs require, and unless the doctor is unable to perform the newer techniques, I've never heard of someone receiving this information in the last 8 years!

All the being said, the experts also agree that most people who get an ileal conduit are perfectly satisfied with their quality of life as well.

Like Linda W, I'm allergic to tape and my skin peels off after 5 minutes. That's a reason to avoid having to live with tape on your skin for the rest of your life.

I wish you the best with your choice!
Wendy

Lou : Thank you for your very informative message. I saw three outstanding doctors this past month from HUP (Hospital University Penna.), John Hopkins and Sloan Kettering. I also attended the BCAN Seminar ( Bladder Cancer Advocacy Network ) in Baltimore Md. I attended lectures from a top Urologist, Bladder Cancer research gentleman and a urology specialist. I also had the opportunity to speak with a woman who had the ilea condicut another who had the Indiana Pouch Reservoir. ( None had the neobladder). I would definetly prefer the internal pouch but all convinced me to go with the ideal diversion. From what I heard it was less problematic. However: the gals with the internal pouch complained about getting their GI tract back to normal since more of the intestinal tract is used. In one case it took a year and she is still very thin and unable to get her weight back. Another had a severe infection in the pouch and uninary tract and had to be hospitalized. They all found the 4-6 hour catherization difficult especially at night as it takes approx 20 minutes to empty the pouch. I also spoke with the urology nurse at Sloan who "has seen it all" and she said if it was she the ideal conducit would be her choice. All three doctors left the choice up to me but recommended the external bag.
You gave ne a lot of "fuel for thought" Lou, and Wednesday I go for my pre-op testing and will review my options again.

Thank you so much for your interest, concern and knowledge to help me make the right choice for my upcoming surgery. I do know that the surgery is more complicated for a woman than men. I am happy you are doing so well. You give me courage to face the challenge.
nanaca

Lou's observations about the Go-Lytely are spot-on--but I'd like to add one piece of advice from my personal experience.

I arrived at USC Norris about 10am, got settled in, and began drinking the Go-Lytely around noon. The magic potion began to work a couple of hours later.

Then, around 5pm, someone decided it was the perfect time to wheel me downstairs for some CT scans and lung-x-rays.

I'll leave it to your imagination how pleasant a time we all had--so please, for your wife's sake, try to make sure that the hospital coordinates any non-time-critical procedures before she begins the G-Lytely.

She'll do fine. I'm sure of it.

Nanaca,

You ask about drinking all the Go-Lytely the day before surgery, and I will tell you it's not the worst thing I've ever had to do, but...  The nurse who brought it to me the afternoon before my surgery told me it went down easiest if it's cold, but unfortunately they don't mix it up until you need it so it usually isn't very cold.  Tina placed about six or eight Dixie cups on my table, and in a few of them she put crushed ice.  She told me not to let the ice melt or it just meant you had more to drink, but she did say if I was able to get an entire cup down at one time it helped.
So I tried to keep the cups with a small amount of ice and fill up several, and the remainder of the cups I filled 2/3 full with Go-Lytely.  As I got down to the last cup that already had ice, I added some ice to the others that already had the liquid (this took several rounds of all eight cups).  It did help, I guess.  I stood the entire time I drank this and I watched the television while I was doing it, I felt sitting would inhibit my ability to drink it all.  While I was doing this my surgeon, several residents, a medical student, and a nurse practitioner came to my room for a "chat" about the next days events.  When they came in my door I told them how very glad I was to see them all and that I wanted them to join me in a cocktail.  I said I had plenty for all to go around, and I had enough cups for all of us and no one would miss out on "Happy Hour".  Well, I laughed at my own joke but I don't recall if any of them laughed or not.  
When I had finished three of the four liters I began to feel nauseated, and the nurse that had come in at 7 PM told me I should stop as we wanted it all to stay down.  I was quite pleased to hear her tell me that it was all right and I'd probably have just as good results from three liters as from four.  Boy was she right about that, and a little suggestion that it would be a good idea to bring with you some of the cleansing cloths you can buy to clean your bottom because it gets quite sore.  I've since found a product at Wal-Mart that I wish I'd had with me, and it's by Playtex and is a Personal Cleansing Cloth (it has no alcohol in it). You can get it in a dispenser, but I find just buying the refill packs is just as good as they're resealable.
Good Luck with your surgery, and keep us all informed as to how you're doing.  Remember we'll be praying for you to come through with flying colors.

Lou Graham

Hi, Nanaca,
I agree that the surgery for the ileal conduit(external bag) is a less complex and a shorter sugery. Since less intestine is used to make the ileal conduit, there is possibly less GI changes after the surgery. However, I do not agree that the ileal conduit has less potential problems for infections. In fact, I feel that the ileal conduit is the diversion type with the most likelihood of infections, reflux into the kidneys, and upper tract deterioration. This does not mean that I do not think the ileal conduit is not the best choice for some people, but I did want those reading our form to realize that "less potental problems from infections" is not on any lists I have ever read about the pros for the ileal conduit. In fact, the other two types of diversions (continent internal catherizable pouch and neobladder) were developed because of the need for improvement in ileal conduits. Here is a web site entitled, "Urinary Reconstruction and Diversion" from the well respected Cleveland Clinic that discusses the pros and cons of each of the three urinary diversion types:
www.clevelandclinic.org/health/health-info/docs/3900/3927.asp?index=12546

When I was first diagnosed with invasive bladder cancer, I thought the ileal conduit would be the easiest and best for me. However, my second opinion doctor had such a positive attitude about neobladders and even said that the neobladder was the closest thing to normal that he could give me. I found this encouraging because I am allergic to many adhesives and had been concerned about the adhesive I would need to use to attach the external pouch. Then, when I questioned my primary care physician, he told me that his patients with continent internal pouches were more satisfied with their diversions than those with the ileal conduits. He did not have any patients with neobladders.  I wish I had been able to speak with dfferent people having the three types of diversions, but my surgery was so quick after definitive diagnosis that I did not have that opportunity. Fortunately, I am extremely pleased that I went with the neobladder and had the second opinion doctor perform the surgerym, but I want to stress that I think that I would have been able to adjust to any of the diversions and be thankful that the cancer was gone and the medical profession had provided me with a way to live without my original bladder. All three types of diversions are much better than a cancerous bladder.

I am wishing your wife a successful surgery and a rapid recovery.

My best to you and your wife,
LindaW neobladder 2/2002