So were sittiing in our surgeon's office..the deversions available to b/c patients has just been laid out for us,choices,,neo bladder, indiana pouch, ileaut conduit. Not that my husband wanted any one of them,but he is a guy,so the neo looks great to him..
Then the explanation of whats expected of you to train the neo..somewhat involved, my husband started leaning to the bag. Then the heart Doctor who put his stents in a year before suggested he do the bag for other reasons. Heart issues....so the bag it is for him...the bag gets a bad rap in my opinion, it may be some what historic but it works and no diapers are involved..Its clean, nothing about it turns me off, and you don't have to cath anything.
Age certainly plays a part,,I mean at 67 diapers aren't what we want in our master bath,,they may play a part in our senior health program soon enough. A neo is a wonderful choice, you have to be up for the training of it,,and be able to handle incontinence for some period of time. You may get it to work 100 per cent,and you may not. Once you decide to have it just go for it and make it work..Thats your choice.
The Indiana works great for the rest who desire a inside bag with a stoma to cath from. Now you have cath tubes and empty as required..
This choice is as individual as the patient...what your lifestyle will handle the best.
We all have our interests,, our fears, and whatever the choice you have to be happy with the decision you make....
I couldn't tell my husband what choice to make, its his body, he has to make the decision...listen carefully to the to the surgeon about which deversion is for you,,,think about it for the long run, take into consideration your age, lifestlye, and how convenient it will be for you. Then decide!!!
How do you feel about your deversion???
ginger
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Making a choice: WHICH DEVERSION IS BEST FOR YOU!!
- By roadrunner
- Posted September 20, 2008 at 8:32 pm · 34 replies
- In Living with invasive bladder cancer
- Shared with the public
- Edited September 20, 2008 at 8:38 pm
Explore topics in this discussion:
Cancer Surgery Irritable bowel syndrome Incontinence Sleep apnea Allergies Seizures Multiple sclerosis Fever Pain Neobladder Bone cancer
34 replies
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- By balihigh
- Posted September 21, 2008 at 7:02 am
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Ginger,
I had no choice to make. I have a mild form of colitis so it was the bag. period. So many on this site and others had written about their success with neos and Indiana pouches that I thought at first that I was getting a raw deal.
However, I am completely satisfied with the bag. I think that the chance of infection is less, nothing being inserted, to cause it and the recovery time just has to be less. I am only 2 weeks out of surgery and doing so well.
The bag is not paradise. I had 4 leaks in a week but that problem is getting solved as my bandages fall off and I can attach the wafer directly to the skin rather than over the bandages. No wonder I was having a problem!!! Yes I know there will be leaks in the future.
I am sure that the neo and Indiana pouch give a person a better self image. That bag hanging there is not pretty but it has saved my life. I am sure in time that I will hardly even notice. My husband is very accepting and he too is happy that I have the bag.
Nancy
- By phallon
- Posted September 21, 2008 at 7:25 am
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Hi Ginger,
I thought long & hard as to which way I would go. Several months before I needed the RC I was in a car accident. While down at the repair place I got to know the manager & we got to talking about the big C. Her husband had bone cancer. Anyway she was telling me about a friend that had the Indiana pouch & had major problems so when it came to me needing surgery then I should tell them NO on the Indiana pouch. Well the day came when the Dr. told me I needed the RC. I knew I didn't want to do the neo it just didn't sound right at all for me but I was so scared about the Indiana pouch that I was going to settle for the bag. If it came to having the bag I was fine with it because I knew that in the end it might come down to having to have it after the Dr. got inside doing the surgery. Anyway thanks to this group I was able to get enough information about the Indian pouch that I finally ended up going with it. So far I have had few problems, yes the recovery is a few weeks longer but for me it was well worth it. Yes I do have leakage but there are problems with anyone of our choices. I am really just thankful there are so many choices out there for us & in the end we are finally cancer free & hopefully it won't come back. This group was a god sent for me & I am very Thankful this group is here.
Phallon
- By roadrunner
- Posted September 21, 2008 at 10:19 am
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And here is a good place to tell your experience, The deversion thats works for you,,,I have to agree with Balihigh about the bag,,you have put your ego aside and be glad your alive.....less chance of infection,,and when you flatten out you will have no leaks and the bandaids are gone,,,!!,, and the Indiana,,,great choice too,,,,if your lucky enough to be able to have that option!!! ginger
- By roadrunner
- Posted September 21, 2008 at 10:20 am
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Phallon,
Glad the Indiana is working out for you, and your doing well,its all life changing but somehow it all works out..........ginger
- By Basha
- Posted September 22, 2008 at 10:45 am
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I too went into surgery not knowing if I'd come out with the bag or Indiana Pouch. As I told family & friends I'd rather be left holding the "bag" then the other alternative. Turned out an Indiana Pouch worked for me. First year I dealt with quite a few leaks, but now as long as I stay on my voiding schedule things go fine. Leaks still happen but very infrequently. Body changes, no matter which option we choose, is still something we have to adjust to. I'm still working on that, this surgery was the first ever in my life. I'm thankful I'm healthy now and look forward to a normal life. To everyone struggling, stay positive, life does get better.
- By roadrunner
- Posted September 22, 2008 at 11:50 am
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Hi Basha,
Glad to hear from an indiana owner,,its hard enough to make this decision, you make when your still reeling from the fact you have b/c itself...all these inputs will help others decide,,and see how well everyone is doing...ginger
- By Alwaysawarrior
- Posted September 22, 2008 at 11:51 am
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I have the Indiana Pouch but I always said this we are speaking of our lives here so what ever diversion you ended up to me it really doesn't matter because you are alive.
- By roadrunner
- Posted September 22, 2008 at 11:56 am
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Always a Warrior,,,love your dog,,and your thoughts make it all realistic, we are still here enjoying life!!!
GINGER
- By kidzpastordave
- Posted September 22, 2008 at 3:53 pm
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Is the "Indiana Pouch" the same thing as the Stoma (Without the bag?) This is the option I'm most interested in at this point.
- By roadrunner
- Posted September 22, 2008 at 7:55 pm
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Thats actually a good way to describe it,,,,A member Joe, or always a warrior has an Indians,he would be the best on descibing it. You have a place to cath to draw out the urine,,,no bag....I hope you are at a good institution for your surgery,,where they have done many of these surgeries,,,when is it taking place???
ginger
- By kidzpastordave
- Posted September 22, 2008 at 8:52 pm
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I'm tentatively scheduled for surgery on 10/15/08. I'm going in for a series of CAT Scans on Friday to determine whether or not the cancer is anywhere else in my body (besides the bladder)
- By roadrunner
- Posted September 22, 2008 at 10:44 pm
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Thats the agenda, scans to see if there are any other sites, my husbands was contained in the bladder after the path he was clear, and is still after one year. What is your stage?? Stage 3 T-2 is what my husband was, and he had laproscopic removal,,what is your plan,,?
GINGER
- By kidzpastordave
- Posted September 22, 2008 at 11:06 pm
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I'm not certain of the stage yet, or the plan. I just know I had a very aggresive tumor that was invasive. I won't know more until next week sometime. Stay tuned. Thanks for the info.
- By roadrunner
- Posted September 23, 2008 at 12:05 am
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Let us know when you get more info......I'll stay tuned!!!
GINGER
- By Alwaysawarrior
- Posted September 23, 2008 at 2:12 pm
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Yes kidzpastordave with the Indiana Pouch you have a stoma with no bag. My stroma is the size of a quarter and to the right of my naval and right above my waistline about 2 inches. The thing with the pouch is you have to catherize yourself. In the beginning it is every 2 hours and then you work your way up to 4 hours. I have had mine for 15 months and at this point I cath about every 5-6 hours. The Catheter is not the foley type it is a straight catheter that you insert right into your stoma. I am in and out of the bathroom in about 5 miniutes. Later on I will post a picture of what the catheters look like there are all sorts and styles. The Pouch was my second choice but I am very pleased with it. Joe
- By SailorMan
- Posted September 25, 2008 at 9:42 am
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I elected for a neobladder which I got on July 22nd and thus far my experience has been mixed at best. The operation itself and aftermath went reasonably OK and recovery was proceedig fine until at about the 3 week point when my foley catheter was removed and I had to start urinating normally once again. I experienced a very small amount of urine which over the next few days dimisherd to nothing. All the while, I was able to void using the "superpubic" tube which was installed as a temporary backup. Well, over the next few weeks, my surgeon fiund a stricture in my urethra and elected to go in and open it. When he did that, he went further in and found scar tissue had formed at the connection of the Neoblader and the urethra. He is currently talking to other urologists and surgeons at Sloan Kettering and other places to identify the best way to work through this.
In the meantime, I have been beset with a series of infections that appear to be in the neo and might be caused by the fact that the lower part of the bladder (near the urethra) is not draining properly.
We are not sure where this is going to go but clearly, if my urethra problem cannot be fixed, we will have to convert the neobladder to something else. The doc says that if this happens, we will be able to choose between a pouch and an ileal but asa of now, we do not know how much surgery is involved in either choice.
- By letsbeatit
- Posted September 25, 2008 at 2:29 pm
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I hate to be the one negative person here but feel you need to know the downsides of the Indiana pouch also. My case is the extreme, not the normal. I left the hospital Apr. 4 and have had 10 UTI's plus a staph infection since. I've had a fever of 102.5 twice, went to the a the ER and was admitted for 2 days with over a 103 temp. (all were cultured).
My irritable bowel syndrome was so mild I didn't think about it as I wasn't having problems near decision time. I leak and I also squirt. I have to wear an Ultra Poise pad on my tummy at all times to catch the leaks. My stoma has created excessive scar tissue. I had one out-patent revision that didn't work, has some cuts on it at my Uro's office, and we are on the way to consult with a plastic surgeon re scar tissue before the next revision because it is closing up again. It has been 6 mos. since surgery.
The excessive scarring would have been a problem for me with any of the diversions. I've been on antibiotics about every other week, and haven't had much luck with any of the RX's for the overactive pouch.
The good news - I have found a product that is a result of isolating the component in cranberries that helps prevent and "cure" UTI's. I have also found a new probiotic that works on IBS. I can't wholly recommend either yet but can tell some difference.
My Dr. said that if I kept getting infections i might need surgery to change to the exterior bag. When things are working right I am very happy with the Indiana Pouch and even with all of the problems I'm not ready to give it up yet.
- By roadrunner
- Posted September 26, 2008 at 12:35 pm
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lets beat it,
I am sorry to hear your having problems with the indiana,, as you said "its not the norm",,,no of us can determine what lays ahead in the form of issues with your deversion, I will say some prayers your situation gets better and no further surgery is needed,,, ggod luck and take care,,,,ginger
- By Alwaysawarrior
- Posted September 26, 2008 at 2:26 pm
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I am sorry to hear that you are having problems with your pouch. Having a UTI is not uncommon with the pouch but 10 is taking it to the extreme. My question to you how many catheters do get per month? When I first started out I was given 8 per month from my insurance which is absurd when you need to use them 5-6 times a day every day. After my 2nd UTI my wife wrote a letter of medical necessity to the Dr. and he signed it and then she sent it in to my insurance company. I now get 180 per month so I never have to reuse a catheter. With the 8 I had to clean them with bacterial soap and hot water and doing this it is very difficult to know if there might still be any germs left on the Cath from pre use. Also who was your surgeon that did the Pouch? Because you shouldn't be having all these problems with leaking and squirting. My pouch the surgeon put in a valve to stop this problem from the pouch leaking etc. I hope you get all your problems straightened out. Joe
- By kidzpastordave
- Posted September 27, 2008 at 2:58 pm
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Update.... I had my CT Scan yesterday to rule out the spread of the cancer to other areas of my body. My Dr. knew how important it was to me so he resheduled some of his patioents to get me in for a consult right away. My wife and I met with him and he told me that although the tumor had worked its way completely through the wall of my bladder, it does NOT appear that any cancel cells have spread through and started their dirty work on any other organs. It seems we caught this just in time! PTL for the blood in my urine that alerted me to this! So, as long as Iget rid of the effected bladder, I should be in the clear. I'm going in for the RC with the Neo-Bladder in a couple of weeks. Thanks...............
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