Compendium of ileal conduit consultation

[Greg]

As a seven week old IC voider (formerly a neo clencher and before that a bastion of bladder bliss), I am looking for others to share their secrets. I am having a good time of it, no issues to speak of, but long term users develop secrets, shortcuts, tips, intimate knowledge gleaned through bitter battles from which the rest of us (at least me) might benefit.

Here are some simple ones from me (since I am a very simple guy!):
1. Change the appliance in the morning before taking on fluids. Who knew that a segment of ilium could squirt that far!
2. Remove the whole apparatus, including the barrier, prior to showering, to allow the skin to breath for a little while and to get completely clean. It is so refreshing.
3. If you use a two piece system (which I currently do), rinse the bag to eliminate any odour and remove it to shower. Cleanliness is a wonderful thing!
4. Allow the output to follow gravity to the bottom of the bag rather than being trapped by a belt or consticting waistband at the stoma. That will allow a longer leak-free experience since the leaks are likely to occur at the barrier. It also means you sometimes have to wear your pants up around your chest, which is not a fashion statement I wish to continue. [strong]Anyone got any tips???[/strong]

Questions:
1. What product do you use and why?
2. Do you carry a replacement kit with you (including clothes) when you go out?
3. How long between changes of your appliance?
4. Do you drink more than before (water I’m referring to!)?
5. Do you take Vitamin C or cranberry juice, etc. to positively impact the pH balance of your output?

Not sure how many people this actually applies to out in BCC cyber world. If you’re shy about this stuff, join the club! You can tell I also am – NOT! Let’s be conduits of help to one other (see what I did there?).

Greg

[Greg]

Now that’s a short compendium!

[Susan]

Greg
Conduits of help sounds great! I hope you get lots responses to your post. I think we all can learn from each other – no matter if we are recent or long time pouch people. Don’t know what to call us exactly, haha. With my family, I’m a marsupial.

Product used.
I recently switched from Hollister to Convatec. Two and a half years ago I had my RC with IC. I had been using a 2 piece Hollister since that time. But then I began to get an irritation all around the stoma. The ET nurse said it was from urine on the skin. No leaks, though, just this tiny red ring around the stoma. With her advice, I tried various other Hollister products for about 3 months, but still the irritation continued. Then I switched to Convatec “moldable”. It has a soft area with a kind of “memory” in the middle of the barrier. You roll that back with your fingers when applying, and then it snugs up against your stoma after it is on. Very cool – and no more worries about the size of the opening – no cutting, no measuring, etc.

I still do carry a replacement kit with me when I go out. I bought a new purse right after my surgery, so I’d have room for that. I have rarely used it though – in fact, I think only once. And never had to change in a public restroom. I was at my daughter’s house when I had to use the “emergency” kit.

I change the appliance every 4th day. I read somewhere (no recollection of where, though) that some authority (don’t remember which authority either) recommended no longer than 4 days between changes. In view of the fact that I can’t remember who said this or where I read it ….. maybe it’s questionable, haha.

I have a Soda Stream machine, and I do drink more water than before. In fact, before my bladder cancer diagnosis (2007) I rarely drank water. I was a teacher, and could go many many hours without visiting the bathroom.

I do take Vitamin C. Can’t remember if that was a doctor recommendation or just something I read on a discussion group. I subscribe to BCAN, and I know I read there to use it to reduce urine odour. There are articles from National Institute of Health that seem to indicate Vitamin C can’t lower PH levels in urine.
http://www.ncbi.nlm.nih.gov/pubmed/7287481

I am interested that you remove the pouch every time when showering. Because I use an Eakin seal as well as the Convatec flange, I worry that the seal would wash away if I removed the pouch for my shower. Maybe some others will respond about this.
When changing the appliance I always remove everything before getting in the shower, and I agree it feels great to go “au natural” even if it’s just for that brief time.

I can’t offer any advice about the chest-high pants problem. My stoma is well below my waist, and I don’t wear low rider pants, so it isn’t a problem for me. Your phrasing made me think of Martin Short’s Ed Grimley. Sorry.

You sound like you are doing really well with your “new” normal. I’m very happy for you that things are going well.
I am also a happy pouch person. Sometimes it’s a little inconvenient maybe, but I am so grateful to be cancer free for now, and maybe for ever?
Just got an “all clear” from my 2 1/2 year CT Scan.

[Mollygolly]

I have had my Ileal conduit for almost two years. I was fortunate that someone mentioned a few tips before my surgery. Placement of the stoma. Think about how you wear your pants – where your belt line is. I was able to pick my own spot along with the help of the Ostomy nurse. Mine is about 2 inches below my belly button and to the right side. Sure glad I did that! The nurse also mentioned to me to ask the urologist for a “good” stoma. Meaning that the stoma protrudes out about 1/2 inch or so. The reason is that you will experience less leaks and better fit with your appliance. As I was laying on the operating table in the OR, I turned to the nurse and said – “make sure he gives me a good stoma”. He did!

This is my routine and it has worked beautifully for me.

I change my pouch and wafer on the 4th or 5th day. Usually first thing in the morning because of less urine output. However, I do after a bath in the evening sometimes.

On the day I change, I use some vinegar diluted with water and wash around the stoma and I pat the stoma as well with the solution.

I wear a two-piece Convetec moldable. Love it! No leaks. Was using Hollister at the hospital and when I came home. Kept having leaks and did not like cutting the stoma size for my wafer. About 4 weeks post-op, I changed to the Convetec pouching system and never looked back.

I add an extra piece to tape at the top and placed a little higher on my wafer tape for extra security and to prevent the tape from peeling back.

I rinse my bag every morning with cheap mouthwash or vinegar. This helps to control the odour.

I take 2 cranberry pills each day to keep the urine acidic to help create a difficult environment for bacteria to thrive in. Never had a UTI yet! I also take one vit C every day.

I shower with my bag and without my bag and wafer. I also take a bath without or with my appliance.

I feel very fortunate that I have had a relatively easy time with my urinary diversion.

I rinse my night drainage bag with cheap mouthwash and/or vinegar.

I keep extra supplies at work and in my car. Should really carry something in my purse, but I don’t.

In the summer, when it’s hot, I usually have to change more frequent – on the 3rd day.

I learned some valuable tips from the Ostomy nurse in regards to skin rashes etc. Keeping the skin healthy around the stoma is very important.

I feel finding the right pouching system is crucial to adjusting to the Ileal conduit. You need to feel secure and not have to worry about leaks. I still remember going out for lunch, a couple weeks after my surgery, and experiencing a leak at the table and having to leave. A person may have to experiment with different brands to find the right system.

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