bladder reconstruction

Ray,
I am an owner of an Illeal Conduit. I have read many opinions and the experiences of those that have either Neo Bladders or Indiana Pouches. As educated as I am now on the advantages and disadvantages of all three; I would still choose an Illeal Conduit as my diversion if I had to again.

This is a long winded post. However since you will may be making a life altering decision on the type of diversion that is best for you, I am sharing MY experience as one person view of the Illeal Conduit.

Below is a partial posting I have placed on Melodie’s Bladder Cancer Warriors website:

An Illeal Conduit is a diversion that allows urine to flow directly from the kidneys to outside the body. After the bladder is removed, the surgeon cuts out a section of the intestine and connects one end to each kidney and the other end sticks out the side of the body and is sewn to the abdomen. The portion that sticks out is called a stoma.
Surgeons have different philosophies on how much stoma should stick outside the abdomen. Most doctors create a stoma that protrudes 1/4 inch above the skin, however, my surgeon prefers to create a stoma that protrudes about 2 inches above the skin. His reason is he has found less chance for infections. After surgery I met with the Stoma Nurse to learn how to place the Urostomy Pouch over the stoma. The pouch is an adhesive shield that has a hole in the middle that adheres to my skin. Then I connect a bag to the pouch. The bag connects to the pouch like a Tupperware lid connects to a bowl. However, I do not have to burp my bag for a tight seal. There are some manufacturers that make a one piece pouch / bag combo.

Because every body shape is different, there are several different designs, shapes and sizes of pouches. The Stoma Nurse provided me with four different types from two different Urostomy Pouch manufactures. It took me about a month to find the pouch that fit my needs best. Most had a problem with leaking along the edge. With the style I now use I can go one week between changing the pouch (no leaking too).

The Illeal Conduit diversion is the oldest method for diversion out there. I am really glad that I have this diversion. I feel that it meets my lifestyle needs. Being happy with the diversion that we have seems to be a common theme. In Bladder Cancer Forums I have read where nearly everyone advocates the diversion they have. This is good news. Even though I would choose this exact same diversion again, it is nice to know that the other two would have most likely also met my needs.

I am going to now share the challenges I have with my Illeal Conduit diversion. Wearing a belt causes leaks. My stoma is located about 4 inches to the right and 4 inches below the belly button. When I wear a belt and stand and sit then stand again throughout the day, sometimes my belt will catch on the bag and undo the Tupperware lid. Then I have a leak with smelly and wet spot pants (before I realize and reconnect the bag to the pouch). I could probably change to a one piece Urostomy appliance, but instead I just wear suspenders. Another disadvantage with this diversion is the ability to be a swim wear model. Even though I am 50 now, I never gave up hope that Speedo would be calling me for my services. With a bag hanging at the Speedo line, modeling is not a viable option.

I feel the biggest disadvantage to this diversion is the hair growth below the pouch. Every week when I change my bag, I do it just after I shower. While showering, I shave the hair that is below the pouch area. Now when I step into the shower and remove the old pouch I have a scratch fest. The growth of hair really itches at this point. So, I lather the area with soap and scratch like a flea infested dog. It feels so good. After drying the area where the pouch will be placed, it takes about 2-3 minutes to put the new pouch over my stoma. Wow! I only have three negatives about this diversion, there must be more. A negative that some may have but I don't is an allergic reaction to the adhesive that is on the pouch. Also, pouches last between 3 and 9 days depending on the individual. I have good insurance that pays for my urostomy appliances, but if someone doesn't have medical coverage, they are spendy.

Now here is what I feel are the advantages of having an Illeal Conduit diversion. First, I don't have leaks (since I don't wear a belt). This is really nice. Never having to worry about being wet contributes to the quality of my life. Second, I go to bed at night and sleep 8 hours without having to get up to relieve myself. This is done through the magic of a night bag and gravity. Even though this would be a great science project for my kids, they have never asked me to come to their school for Show-and-Tell. The night bag is a large bag with a five foot hose connected to the top. I tie the bag to my night stand next to my bed about six inches below the top of the mattress. A quick disconnect attached to the five foot hose connects to the valve on my bag. I open my valve, and gravity takes care of flow of urine. I can toss and turn all night with the five foot hose providing plenty of slack.

I have learned to live a life using a different method of diverting my urine without it affecting how I live my life. I can do everything I could do before .... ride a bike, swim, jog, stand at a urinal at a sporting event, and have a great night sleep. I did attempt to try one thing that didn't work out. I was driving this past summer up and down the east coast visiting my 22 year old son (he plays minor league baseball). I hit 10 states in 4 days. I wanted to see how long I could drive without stopping. I had my night bag with me; connected. I figured I could last as long as the gas tank lasted. This didn't happen. I didn't take into consideration that my 16 year old son riding with me only had a three hour bladder.

I hope that if you choose or have to have an Illeal Conduit, your experience is at the quality of life that you desire. Remember, it is in the bag.
Take Care, The Bagman of Marysville
Rick

When Hal is good, do you give him a treat?

Hey Strange
Get the neobladder if you can. At first it is a little tough to get used to but as time goes on it is the ONLY way to go. life returns almost to normal. If you Surgeon is talented, this is the best option. My mantra for finding a surgeon is: You want a MECHANIC...A person who does this operation on an almost assembly line basis. This is tricky stuff but a surgeon that does many different surgeries may have a harder time switching from one to another. Just my thought...definatly not a scientific analysis.
George

Thanks for the clarificatio Pat. I edited my post to remove the part about hooking up a night bag to Indiana Pouch.

Mike

Mike....nope you can't hook up anything to an Indiana...but you don't need to at night...it can be trained...you have to personalize it..give it a name..mine is Hal(named after the computer)...We initially had a bit of a struggle as to who was boss. Now we're great friends. Hal lets me sleep 8 to 9 hours if i want. Now if i decide to party and drink a few beers thats another story but i don't aggrevate him much. There's a learning curve with all the diversions but all doable.
Good luck Ray and if you need help finding a second opinion let us know.
Pat

Ray,

I asked folks the same question not too long ago. Their answers would still apply. The title of the thread is: To Neo or not to Neo, That is my ?
www.bladdercancersupport.org/index.php?option=com_kunena&Itemid=114&func=view&catid=6&id=21043

I suggest you start at the original post and then read all of the responses from others on the topic.

I can tell you in summary that most folks are happy with whatever diversion they get. A couple of exceptions here and there but in general that seemed to be the response.

As for me, I got a neobladder on 10/9/08 and I'm quite happy with it. It is the closest thing to the original model since it is hooked up to the original plumbing. It takes a couple months or more to learn how to use it properly, get it stretched to the right size, and gain daytime continence. Night time continence takes a little longer. There are products (e.g. depends pads) that you can wear so that you can go about your normal business and you won't have a problem with leakage showing. It gets better pretty fast but you have to do kegel exercises. Some say the more you do, the faster you get continent. Others say you can overdo it and get hypercontinent. I have never needed to catheterize myself or have anyone else do it since getting my neobladder.

From my research, I'd say the Indiana pouch would be option 2. Upside of that one is that I don't suppose you would leak and you don't have to worry about learning to control continence day or night because you use a catheter to drain it. You do have to "train" it. I'll let the Indiana pouch users fill you in more on that. They can put the stoma right in your navel so it doesn't even show and you can go to clothing optional (if that's your cup of tea) beaches and nobody would be the wiser.

Finally, the ileal conduit is the shortest and easiest surgery. You have a stoma with the bag but most everyone who has one is happy with it. Again, no learning continence. Night bags let you sleep all night.

You can do pretty much everything with either option. Scuba diving is not an issue with any option. I'm a diver so I asked the question.



I just recently posted a thread about being more than happy to not have my bladder any more. That can be found at: www.bladdercancersupport.org/index.php?option=com_kunena&Itemid=114&func=view&catid=5&id=26055 and the title is: The Upside of Radical Cystectomy. Again, read other people's views as well.

I can tell you that you have come to the right place. Nothing is too personal to ask. I'm sure you will have tons of questions. Browse through the different forum topics to learn what you can from questions and answers already posted and feel free to ask anything.

If you are uncomfortable asking anything, feel free to send Private Mail, but keep in mind, the purpose of this forum is to share information and experiences so the more we put right out there for everyone, the more useful it is everyone.

OK. So this a VERY LONG answer. Hope I've given you some info that you find useful. Do check out the threads I mention above.

I'm sure others will give you their experiences.

Check out major bladder cancer centers if you can. You REALLY want someone who does these types of surgeries routinely. Three a month isn't routine enough. The more experienced the surgeon, the better the result. Common sense.

Best of luck!
Mike