Posted by: Illona

Eric,

I decided no plane travel until my reversal surgery but I did book a cruise for October.  Do you think I'll need special medical documentation for TSA?  Not sure if you'd know but can't hurt to ask :-)

If it's anything like with air travel, not really. 

THIS guide shares my experience with the TSA at airports, so assuming it's going to be the same when you get on a cruise ship, it might be helpful.

Posted by: Illona

Thank you Sarah, I am using a Convatec 2 piece bag so I guess I can change it without weakening my wafer seal?  The terminology still has me confused, is the flange the wafer part?  For some reason I thought the flange was the bag itself.  

Yeah, terminology can get a little crazy, especially if you're talking about how the UK says things compared to the North America.

Flange can be used to describe the entire baseplate/wafer, although it commonly refers to the actual plastic coupling that connects the bag to the wafer part.

I'm working on that Ostomy Glossary, so these words will all be in there :) 

Posted by: VeganOstomy

Posted by: Illona

Thank you Sarah, I am using a Convatec 2 piece bag so I guess I can change it without weakening my wafer seal?  The terminology still has me confused, is the flange the wafer part?  For some reason I thought the flange was the bag itself.  

Yeah, terminology can get a little crazy, especially if you're talking about how the UK says things compared to the North America.

Flange can be used to describe the entire baseplate/wafer, although it commonly refers to the actual plastic coupling that connects the bag to the wafer part.

I'm working on that Ostomy Glossary, so these words will all be in there :) 

Can't wait for that list! Thank you for doing that for us

I enjoyed reading this so much that it's making me consider air travel prior to my reversal surgery.  I was booked to travel solo to Glasgow, Edinburgh, York and London, then I got my diagnosis.  I'm going to redo this trip in May2018 instead. 

The cruise leaves right from NYC so just an hours drive away.  It's kind of a reward for my ex husband and two daughters who have been through this hellish experience with me every step of the way. I think the ostomy will be very easy to handle on the cruise, just need to remember to hydrate!  We will be in the Caribbean in Oct.

A little trick I use for during the night is that I put a nite light in the bathroom so that I don't have to turn on the bright overhead light when I need to use the bathroom. It seems to really help me. I am up at least twice in the night or more depending on what I ate for dinner and afterwards and I am not a good sleeper either. For a little extra leak protection I take two paper towels and fold them in fourths and tuck them under my pouch which puts them on top of the flange/baseplate and covers the edges. If it leaks at least some of it is absorbed by the paper towel and saves some of the messiness.

Posted by: Illona

Thank you Sarah, I am using a Convatec 2 piece bag so I guess I can change it without weakening my wafer seal?  .  

If you use the 2 piece that clip together then yes you can change the bag and leave the flange (base) on. Just hold the flange securely in place when you take the bag off. If you put some soap on the rings it helps them clip together and apart easier. 

Posted by: Navey

A little trick I use for during the night is that I put a nite light in the bathroom so that I don't have to turn on the bright overhead light when I need to use the bathroom. 

Brilliant idea, it's always the bright light that wakes me

Navey, these sound like excellent suggestions that I'll be trying starting tonight.  Thank you!

Sarah, this is great news for me.  I am trying to consider every contingency to prepare for when I go back to the office.   A new fresh bag will help

Posted by: Illona

Eric,

I decided no plane travel until my reversal surgery but I did book a cruise for October.  Do you think I'll need special medical documentation for TSA?  Not sure if you'd know but can't hurt to ask :-)

I took a transatlantic cruise to europe then a plane, then a riverboat cruise and finally a plane back to the US.  The cruise ship and river boat only run you through a metal scanner and they never see anything to do with the stoma or your appliance.  The plane security goes through a full body scan and then go to a wand to check out what they see on your stomach.  I told them it was an ileostomy and they sent me on my way.  Still have to take off belts, shoes, scan laptops, cell phones and tablets separately.

Overall not a big deal traveling.  Just watch out for the airborne diseases that you can catch on the ships.

Bill, aka Bago

Thanks for sharing that, Bill! 

Thanks, Bill.  My new life has me constantly thinking about catching something but I sometimes forget.  I appreciate your travel info also.  Prior to the ostomy I'd get fully searched and hands swabbed all the time, not sure why.  Maybe I look a little dangerous :-)

I use a one piece drainable sensura mio which I change every day.  Also when emptying I flush the bag out with water.  I carry an empty 330ml water bottle and fill it in the rest room.  You get some strange looks filling a water bottle but I don't care and if anyone ever says anything I will be happy to inform them of my condition!  I always use a filter sticker to cover the filter as I would rather have ballooning than a leak.  I haven't had many issues with my skin changing every day.  By the way, I am in Australia and our supplies are fully subsidised so changing to a new bag every day is not a big deal, we get 30 a month.  I also get up at least once a night to empty and 'burp' my bag.  I haven't had a full night's sleep in over 4 years, first with the diarrhoea and now with the bag.

 Do any of you change the bag every day?  I'd love to be able to start each day with a fresh clean bag but do not want to risk weakening how well my system is sticking to me.  My biggest fear is leaking.

I rinse the bag every time I empty ... well, most of the time. It doesn't weaken the adhesive of the wafer at all, but, I suppose rinsing can cause the barrier ring (if you use one) to erode a bit faster because you are increasing the amount of liquid that comes in contact with the part of the barrier ring that collars up around the stoma. No big deal, though. I change the whole system every 3 days.

Sydney you're lucky to have your medical plan.  I have great insurance here and am only allowed a new bag every 2-3 days.  I'll just buy any extras I neeD

A full nights sleep? I'd like to experience that again sometime :-)

Posted by: bluesgal

 Do any of you change the bag every day?  I'd love to be able to start each day with a fresh clean bag but do not want to risk weakening how well my system is sticking to me.  My biggest fear is leaking.

I change every 4 days.  I rinse the bag most every time that I dump it.  I use Hollister 2 piece system with a seal ring.  When I first started this fun with bags I changed every 2 days for a while and decided that my  skin was not doing well.  I use an Android app called OstoBuddy to let me know when to change.

I'm still trying to figure out how many days to go between complete set changes.  Convatec says change 3-5 days.  I think I'll try averaging it and seeing how I do every 4 days.  At day 3 the site still feels just fine and I don't want to do anything to make my skin suffer, but at day 5 it kind of feels like just a little bit too much time. Is that how you know when you need to change your complete set, when it starts feeling bad?

Posted by: Illona

I'm still trying to figure out how many days to go between complete set changes. 

There is no set rule for appliance changes. You may need to change more often than someone else, and others may get over a week of wear time.

Here are tips that might help:

When to Change Your Ostomy Appliance

So I'm a good patient and took most of the advice I got here and thought I'd give you an update.  I am usually emptying two to three times in the middle of the night which I'm happy with.  I am still on prednisone but should be fully tapered off it within 2 weeks so that might reduce my bag emptying if I could snack less before bed.

I tried rinsing the bag with water and that's fantastic!  It makes the bag emptying much faster for me and to me, every second counts during the night because I don't want to make myself wide awake at 2 am.  I'm going to buy a small plastic bottle for water and carry it with me.

Your advice made it possible for me to even consider returning to work, I go back next Wednesday, just a week short of being off work for 6 months!  I'm now making a list of things to keep at my office, specifically a full change of clothes, Cheez-it's, peanut butter.   Any suggestions of things I should keep at my office would be appreciated.

<3

Yay, congrats! 

It's always helpful to have extra supplies handy at work, and a spare change of clothes is also a good idea! Don't forget to keep hydrated and good luck!