My Survey on Exterior Pouch Habits

[StephenB]

I would appreciate your answers to determine if my habits are typical other people who wear exterior pouches following radical cystectomy.

Briefly,  I had a rc in May having been diagnosed with a recurring bladder tumor. I was first diagnosed about 5-6 years ago and refused the cystectomy option so was treated with chemo and radiation.  This time around my oncologist and uro-surgeon said there were only two options:

1. Live
2. Expect about 24 months with a lot of pain and suffering.

Well you can probably guess my choice.😠

So now I wear an exterior pouch and at 64 yrs I’m relearning how to go to the bathroom. And so the purpose of my survey. (BTW I’ve been lurking around this forum a few weeks but have not found the answers I was looking for). So here are my questions:

How many times a day do you empty your pouch?

1. 3-5
2. 6-10
3. 11+

Do you empty your pouch

1. Sitting
2. Standing

The time it takes to empty the pouch

1. About 1-2 minutes
2. 2-5 minutes
3. 5-10 minutes
4. More than 10 minutes

I have many more questions but let’s see how many responses I get. I want to thank you in advance for taking the time to help me find the answers I’m looking for.

StephenB

[Rick B]

Hi Stephen,

I am not able to ask your questions but thought I would reply so you know your message is reaching the forum…I had NMIBC and have been cancer free for over 6 years now. I found this form very help and hopefully you will too. The BCC home page has some links that may be of help…the “Helpful Information/Bladder Removal/At Home” has some info but I suspect may not cover all your questions. There is a support group as well who are committed to reply within 2 business days…support@bladdercancercanada.org or call 1-866-674-8889 and leave a message.

There are many on this forum who have gone through the same as you and I’m confident you will soon connect with someone soon to help you with your posted questions and others as they come up.

 

Wishing you the very best…stay positive, stay strong!

 

Rick

[marysue]

Hi Stephen:

I too, hope that someone can answer those questions.  They are very interesting and worthy of thought. Like Rick I had early stage bladder cancer and didn’t have to go the RC route.

However, even though I don’t have the RC experience, my best guess would be that the number of times you empty the pouch would depend on how much fluid you consume and that would most likely have an effect on the output.  That probably varies from person to person and maybe even day to day. I find that the more I drink, particularly if it is a caffeinated beverage like tea or coffee, I go more.  I have heard that it is best to empty the pouch when it is 1/3-1/2 full.  An ostomy nurse could probably confirm this. Whether that depends on the type of pouching system you use, I’m not sure.  Regardless, it is important for all bladder cancer patients to consume a sufficient quantity of water regardless of stage of cancer.  When undergoing immunotherapy treatments for early stage, the extra fluid is needed to flush the excess drug out of your body and for RC patients both pouch and neo, it is important to drink enough water so that the mucus that the intestine creates does not get too thick and create issues.

I found it frustrating to consume more liquid and then be alert for bathrooms but have gotten used to it and now find that I feel better overall from the extra fluid intake.

I wish you all the best with continued recovery and adjusting to the new bathroom routine.

 

[Nightingale]

Hello StephenB,

I facilitate the Support Group in Hamilton and last night we spent 1.5 hours talking about all the questions you raised above.  There are three individuals in our Group who have first hand experience and can definitely answer almost all your questions.  Where are you situated?  If you’re not far from Hamilton, I’d like to invite you to attend our Support Group.

We spent the time last night answering all the questions a new Patient had and I can tell you the answer to one of your questions.  Both the man and the two women stand while emptying their pouch.  The man even uses the regular Urinal.

As far as the number of times in a day, it all depends on how much liquid you consume.  It can range from as little as 4 to 8 times in a day.  The answer to this question varies depending also on the individual.

The time it takes to empty a pouch?  Last night one of the female patients had to empty hers and she was gone for no more than 3 min.  This too depends on how much you have accumulated in the pouch.

I hope this helps you.

My best,

[Nightingale]

Hello StephenB,

Here are responses from folks in my Support Group.

Steve’s response: “Empty pouch, 6-10 times/day, but it all depends on how much you drink and how full you let your pouch get before draining it. I try not to let mine go much past half full. If only drinking a moderate amount of fluids, I sometimes go 3-4 hours between emptying. As Lillian said last night, you go by the feel with your hand as you don’t have a bladder anymore to tell you when it is full. The longer you have a pouch, the more familiar you become with it and it will become routine.Pouch can be emptied standing or sitting. As we talked last night, either way for a male. Time to empty depends on how full and what brand of pouch you are wearing. A Hollister or Braun pouch will empty faster than a ConvaTec or Coloplast due to the larger diameter on the drain. I wear a ConvaTec and it will drain 1/2 full in less than 1 minute.”

Lillian’s response: I empty my pouch 6 -10 times most days. Empty pouch standing up and takes 1 – 2 minutes to empty.

Laura’s response: How many times a day do you empty your pouch?   #2 (6-10)  It, of course depends on activity level and how much water I am drinking (I try to get 10-12 cups of WATER per day even tho I am generally physically inactive).  Mornings tend to be “slower/less productive” than afternoons and evenings.  With a permanent Ileal conduit, and not having to get up at night, I use a quality medical level night bag which tends to capture 1800-2000 mls overnight.

(I stand).  Hubby often is jokingly impressed that I can empty my bag faster than he can empty his (healthy/normal interior bladder from the same position).  Replug the bottom outlet, tuck the bag into my undies, pull up my pants and I’m ready to get on with my day.  Having had my surgery in February, I’m waiting for the snow to arrive again so I can go out and, like my son challenged me (and apparantly my father as a child) I can go out and quickly write my name in the snow (LOL)

The time it takes to empty the pouch? #1 – Typically less than a minute (see above)
Now, CHANGING the pouch system, that is something different and, like it was mentioned last night at our support
meeting, this currently takes about10-15 minutes (if you do not count the shower that I generally take prior to a full
change).  I mean, you have to take off the old 1 or 2 piece unit, clean off the oily wipe that is used to help release the
adhesive so your skin doesn’t peel away, dry everything, fill in the belly-dents with stoma paste or strip paste (so the
flange has a pretty flat surface to cling to), dust the area with stoma powder and then dab or spray with a barrier spray
(all at the same time making sure the stoma isn’t dripping down/wetting the newly cleaned/dried/readied belly before
you get the new flange and bag up and secured around the stoma).

It all gets easier once one knows what products/accessories one is going to need for a
change and organizes all these things in a shoe-box size container one can take to the bathroom as needed.

I hope this helps this patient – – it’s a steep learning curve in the beginning!
Check out the VeganOstomy  web site and their useful range of 5-minute YouTube videos

StephenB, I hope you have found this information from the three users helpful.  As you can see, the folks are very upbeat and we actually had a good laugh at some of the stories.

All the best…

 

[GerryW]

Easy ones, Stephen!

1) 3-5, when the pouch is about half full, depending on how much coffee I drink! I produce about 100ml per hr. At night, I connect my pouch to a Convatec overnight drainage bottle and don’t think about it.

2) Sitting on the loo or standing.

3) About 30 seconds

All my best,

Gerry

 

Kingston and the 1000 Islands

[StephenB]

Hi Nightingale

I really appreciate your reply and hearing the input from others in your group.

In the next few days I plan on posting my story that inspired my questions. While it’s not inspiring, it is somewhere between amusing and pathetic! So stay tuned…🤣

BTW thank you for your invitation but I’m about 350 miles away in Montreal. But if ever I plan to be in  the GTA I’ll certainly joining in on one of your meetings.

StephenB

[Nightingale]

Looking forward to hearing your story StephenB!

My Best,

[Sharon]

Hello Steven

i has my rc April 4 and April 16.  (Yep two trips to the OR…. but that’s a different story)

I am  paranoid of leaking.  As I continue to lots of leaking and short wear times with my bags.   So I’m checking my bag every half hour……but with the lack of any physical  urges it’s all by visual checking.   So I empty my bag about 10 times a day and like others wear a night bag at night.  I stand to empty my bag and make the joke to my grown sons I can owe like a man now, even on the side of the road.  And write my name in the snow.  !!!!it would not takes a few seconds to empty my bag and I find myself squeezing the last little bit out.   I’m short.. so the bags are long for me.  That drainage tip ends up right in my groin. So when I sit it pokes me so I fold that drainage tip up.

I live in a very small farming community in northern Alberta.  So i am very happy to have found this group

sharon.

[Donald123]

Hi Sharon,

Have you tried attaching your catheter bag to your calf instead of your thigh?  You might find that more comfortable.

Take care, Don

 

 

 

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