[rbyrd]

I also was unhappy with my ideal conduit for the first few months.  The surgery site is fussy and doesn’t conform to all the waxes, strips, barrier creams, etc.  I lad leaks,, bags not staying on, afraid to go anywhere.  Then my urologist referred me to a stoma nurse at UNC-chapel Hill.  She saved my sanity and maybe my life.  She looked at my innie and immediately pulled out a convex one piece bag.  She also introduced me to curved barrier strips.  The convex attachment works perfectly with my stoma.  The company makes bags specific to innie and outie stomas.  I still have once in a great while leaks, but it’s usually because I didn’t empty my bag before it got full and it weakened the seal so that later on I will spring a leak.

Believe me.  I would rather have my bladder.  But I don’t want the cancer so I have accepted the fact that the bag is my friend for life.  I even asked my doctor about an option to attach a catheter to my stoma and let it flow straight to a bag.  Urologists are terrific at performing the life saving surgery we need.  Unfortunately they are not experts on adjusting to and living with the bag.  All hospitals that have surgeons performing these surgeries should be required to have at least one full time knowledgeable stoma nurse.  

So . . . Hang in there!   This break-in phase will pass!

[rbyrd]

Chris, sorry to hear you are struggling with being okay with the ileal conduit. At the end of six weeks, I also was very, very disappointed with my Ileal. After 6 months it was better and by the end of the first year we were moving along happily. Since the 6 month mark, I have never altered my plans and can do anything I am physically able to do with my 62 year old body. It’s now been 5 years. The first six weeks I listened to stoma nurses and experts from many supplier companies as I experienced gushing leaks. None of it really helped. I even bought adult diapers to forestall whoopsies. But – after your surgical area heals and forms its natural bumps and curves, it will be much easier to find the right product and be comfortable using it. I have an innie, so I found a convex flange and some curved barrier strips and wear a two piece bag with confidence. At this point I would wear a one piece also if necessary, but I’m happier with the two piece. Give yourself some time. Scream at the thing! You will be okay!

[rbyrd]

Hi. Saw your query and wanted to provide my experience. I had a cystectomy 8 years ago following cancer with tumors only in my bladder. Every time they did a TURB, at the next 3 month check, the tumors were back. I have a urine bag that I change every 2-4 days. More often than that irritates the skin. Your stepmom will need a lot of support when she starts using bags. For the first few weeks, nothing worked more than 2-3 hours. I was extremely frustrated, but kept trying products. I order from Edgepark and use Coloplast supplies. You will find many, many sites that sell, but fewer that deal with insurance. Companies like Coloplast and Hollister, and the supplier companies will provide free product for her to try. They are very good at matching your need to a product.

As her body recovers she will be able to resume any activities she did previously. I walk 2-3 miles everyday and on alternating days I also ride an exercise bike. I keep a bag with supplies, dry undergarments and a change of clothes in my car. I also always grab and wet a couple of washcloths and throw them in a ziplock bag and put it in my go+bag. I had a LOT of accidents in the beginning when I was getting used to the bags and I was still trying to find the right bags. But I rarely, rarely ever have an issue 8 years in. Your stepmom will probably require a lot of support during this early time period, but once her stoma settles in, she should have no problem changing her bags and being able to judge when it’s time to empty. The best thing about the bag is that I no longer have to worry about dirty toilet seats. I just whip out the valve at bottom.

I also don’t get up and go to the bathroom all night. I purchased a couple of night jugs that come with tubing that has a multiple number of attachments, one of which will fit her bag opening. Once you are plugged in, you are good for the night. If I’m staying in and just reading or napping, I will hook it up during the day.

I initially tried two piece bags. One piece attaches to the skin around the stoma, and a bag is snapped onto it. I found a concave product that is one piece. This is what I use now, and would probably be ideal for your stepmom. I also have some curved pieces that I attach to my skin and the edges of the bag, for more stability. I keep a roll of paper towels in the bathroom to help dry my skin around the hole when I’m changing bags. Limit your fluids for an hour or two before bag change time.

I know this is a lot of jumbled up information but hopefully she will glean some tips from this. The hospital where I had surgery had a WOC nurse who ’helped’ me, but she actually didn’t have enough experience to be helpful. My urologist referred me to a WOC nurse (Wound, Ostomy, Continence) at UNC-Chapel Hill hospital who was my salvation in terms of using the right product and applying it correctly.

If I can answer any specific questions I will be glad to talk to you and/or your stepmom.
You

[rbyrd]

Sorry to display my ignorance, could you please describe what this product is used for or give us a general description? I don’t find it on the internet under that descriptive title and haven’t encountered it on my 9 year journey.

Thanks,

Rebecca

[rbyrd]

I had RC surgery 2 1/2 years ago. I am very fortunate to have a surgeon who is highly experienced in RC surgeries and robotic surgery using the DiVinci equipment. I chose to have the ileal conduit for several reasons : 1) it was the surgery that my surgeon recommended based on his extensive knowledge of my bladder cancer history, my age, my work, etc. 2) I did not want to deal with catheters and mucus (personal aversion)). 3) I felt confident that I could adapt to an external bag readily 4) the recovery period was described by my surgeon and my internal medicine doctor as being a shorter timeframe.

In other words, it is a personal decision that should be driven by your lifestyle, your general health, goals that would make you feel that a successful outcome was achieved and feedback from others on their personal experience.

I am very satisfied that my choice of diversion allowed me to meet my personal goals. I am happy today that I cannot think of any limitations on my activities because of my choice. I’m not going to lie to you though. Learning how to use the bags, and experimenting with different options to find something that would stay on more than 4 hours without leaking was Extremely frustrating and depressing. But those days passed quickly and by the end of the first month I was changing the bags myself and having them stay on with no leaks. I never go anywhere without a “go bag” in hand with supplies for changing bags and clothes. I sleep with my bag attached to a jug so there is no disruption at night to empty my diversion as there are with other choices.

Find a good wound and ostomy care (WOC) nurse or PA who is experienced with urologic ostomies. Many have more experience with colon diversions which have their own unique challenges. They will be invaluable in teaching you how to manage your diversion and your external equipment if you choose ileal conduit.

Good luck as you make your decision. I don’t think there are any wrong choices, but learn enough about each choice to weigh it against the way you live your life.

Rebecca