Cathing?

[Rachelsong]

Hello everyone,

This will be our 1st trip to Disney since our dd had a new way of catheterizing. Is there a place in each park I can go to do this or will I need to use the public restrooms? I need to plan ahead with what I'll need to make it as sterile as possible. I can use the handicapped stall, but I wondered if there way any other places to go?

Thanks! This is all new to us!

Rachel

 

[SueM in MN]

The handicapped stalls and Companion Restooms generally have no place where you can set anything down.
Companion Restrooms are single toilet separate restrooms which are large enough to fit a wheelchair and an assistant.

Cleanliness is pretty good in the handicapped stalls, but the Companion restrooms vary more. There are many times where I need to pick up pieces of paper from the floor and/or wipe the floor to avoid slipping before getting my daughter out of her wheelchair.

There is a First Aid station in each park that you can use. They have private rooms or cubicles with cots that you could use. Those are the only places where someone can lie down for catheterization (other than small children who are small enough to lie down on changing tables in the restrooms or Baby Care Centers).

Each First Aid also has at least one Companion Restroom inside. Again, no place but the edge of the sink to set anything down, but the restrooms inside First Aid have always been very clean.

 

[SueM in MN]

Forgot to add - the rooms or cubicles in First Aid will have places where you can set things.
Rooms are set up differently, but at least you would have a cot and a chair. Some rooms are like medical office exam rooms and would have a countertop and some also have a sink.

There is a waiting room and a check in desk when you get to First Aid. Let the person at the desk know what you need and they will send you to an appropriate room.

 

[Pinmaniac]

Can't say it any better than SueM. We have been taking our DD (now 13) since she was 4. She also has to cath. The Disney Parks are head and shoulders above any other Parks that we have visited in regards to having locations that are cath friendly. We used the first aid stations several times each day and the nurses there are very friendly and usually let us choose which room (high or low bed) we wanted to use.

In the last several years our DD has learned to cath herself and my DW and DD now head to the companion restroom when it is time to cath.

Of all the things to plan and worry about when arranging a Disney trip this is one you can put in the back of your mind as handled.

 

[Michigan]

Hello everyone,

This will be our 1st trip to Disney since our dd had a new way of catheterizing. Is there a place in each park I can go to do this or will I need to use the public restrooms? I need to plan ahead with what I'll need to make it as sterile as possible. I can use the handicap stall, but I wondered if there way any other place to go?

Thanks! This is all new to us!

Rachel

Since you said a new way of cathing did your daughter get a mitrofanoff?

 

[Pinmaniac]

One thing my DW asked me to mention is that she puts the caths and supplies in a clear makeup bag. When going through security the guards look at the clear bag and don't end up touching or going through the supplies.

 

[Rachelsong]

Since you said a new way of cathing did your daughter get a mitrofanoff?

Yes, she did. Are you familiar with that? Hardly anyone is! She's not able to do it herself yet, so I'll need to be with her.

Thank you so much Sue for your information, it's very appreciated!

 

[Rachelsong]

One thing my DW asked me to mention is that she puts the caths and supplies in a clear makeup bag. When going through security the guards look at the clear bag and don't end up touching or going through the supplies.

Great tip, thank you!

 

[Michigan]

Yes, she did. Are you familiar with that? Hardly anyone is! She's not able to do it herself yet, so I'll need to be with her.

Thank you so much Sue for your information, it's very appreciated!

Both of my girls have mitrofanoffs and aces. At home they cath into a urinal and then dump it in the toilet but when they are out they do it directly in the toilet. Take a couple of empty water bottles with you to cath into, empty the bottle in the toilet and throw it away.

 

[SueM in MN]

We are considering mitrofanoff for DD.
The end result sounds very good, but the surgery and recovery, not so much!

 

[Michigan]

We are considering mitrofanoff for DD.
The end result sounds very good, but the surgery and recovery, not so much!

If you daughter also has bowel issues I highly recommend an ace at the same time.

 

[Rachelsong]

Both of my girls have mitrofanoffs and aces. At home they cath into a urinal and then dump it in the toilet but when they are out they do it directly in the toilet. Take a couple of empty water bottles with you to cath into, empty the bottle in the toilet and throw it away.

Thank you! We usually time it, so that we're home to do her cath, so any tips on being out & about are great! This trip is a "Hurray, we made it through surgery and are doing well" trip

 

[Michigan]

Thank you! We usually time it, so that we're home to do her cath, so any tips on being out & about are great! This trip is a "Hurray, we made it through surgery and are doing well" trip

The beauty of the mitrofanoff is that you can cath and nobody even has to know. My girls have cathed in a bottle in a paper bag behind a tree or garbage can in a park where there were no restrooms and no one there knew it. I don't know if your daughter is in a wheelchair or not but my girls always have hand sanitizer with them.

One thing about a mitrofanoff you need to know is she will always test positive for a bladder infection because of the augmentation.

 

[Rachelsong]

The beauty of the mitrofanoff is that you can cath and nobody even has to know. My girls have cathed in a bottle in a paper bag behind a tree or garbage can in a park where there were no restrooms and no one there knew it. I don't know if your daughter is in a wheelchair or not but my girls always have hand sanitizer with them.

One thing about a mitrofanoff you need to know is she will always test positive for a bladder infection because of the augmentation.

We just went through a round of antibiotics because she tested positive, but that was never mentioned to me...hmmm...

My daughter isn't in a wheelchair, I guess we'll get used to doing it wherever, whenever we have to!

 

[cantwaittoseemickey]

Our son has a mitrofanoff and Ace. We use the first aid stations as we can take our time and focus on not picking up germs. He can lay everything he needs out. Something that has helped him tremendously whe we travel is to get the all in one packets that have a bag to cath in as we'll as a cloth to lay everything out on as we'll as jelly packets and bike wipes. Basically with those he Cathy's in the car or wherever he must in a situation where he cannot get to a restroom. Our son also has a beeper from the bedwettingstore that vibrates or beeps when it is time to cath.

 

[Rachelsong]

Our son has a mitrofanoff and Ace. We use the first aid stations as we can take our time and focus on not picking up germs. He can lay everything he needs out. Something that has helped him tremendously whe we travel is to get the all in one packets that have a bag to cath in as we'll as a cloth to lay everything out on as we'll as jelly packets and bike wipes. Basically with those he Cathy's in the car or wherever he must in a situation where he cannot get to a restroom. Our son also has a beeper from the bedwettingstore that vibrates or beeps when it is time to cath.

Those all in one packets sound awesome! Where can you get them? We've been making our own cath kits using ziploc bags, but you can't cath into those. We've just found it handy to have everything we need for one cath time all in a bag ready to go...but for travel, those all in one packets sound great.

Thank you!

 

[Michigan]

My girls can't use the all in one catheters because they aren't rigid enough and they curl up going in. My girls are 14 and 22 so I've been out of the cathing business for years. My youngest got her mitrofanoff and ace when she had her right kidney removed at 3 and came home from the hospital cathing herself into a urinal. My oldest learned how to straight cath herself on the toilet when she was 10 and decided when she was 14 that she wanted a mitrofanoff and ace after she had to get out of the van in the pouring down rain to cath in a McDonalds while her sister did it in an empty water bottle in the van on our way to Disney. My girls use a new catheter every time and only the oldest one uses lube. As far as infections go the oldest one hasn't had one since she was seven and the youngest one just got her first one since she was 3 and that pretty much happened because she had a flap surgery and they put a foley in during the surgery.

Again, our kids will always test positive for ecoli because part of the bowel is used to augment the bladder with. If they aren't symptomatic or have smelly urine they don't have an infection,

 

[SueM in MN]

Those all in one packets sound awesome! Where can you get them? We've been making our own cath kits using ziploc bags, but you can't cath into those. We've just found it handy to have everything we need for one cath time all in a bag ready to go...but for travel, those all in one packets sound great.

Thank you!

Coloplast makes some - both with just the catheter and bag and also complete sets for sterile cathing (with sterile gloves and cleaners).

Their website is not the best - broken links, but the product is called SureCath.

From other companies, you are looking for a closed system self cath kit.

 

[SueM in MN]

My girls can't use the all in one catheters because they aren't rigid enough and they curl up going in. My girls are 14 and 22 so I've been out of the cathing business for years. My youngest got her mitrofanoff and ace when she had her right kidney removed at 3 and came home from the hospital cathing herself into a urinal. My oldest learned how to straight cath herself on the toilet when she was 10 and decided when she was 14 that she wanted a mitrofanoff and ace after she had to get out of the van in the pouring down rain to cath in a McDonalds while her sister did it in an empty water bottle in the van on our way to Disney. My girls use a new catheter every time and only the oldest one uses lube. As far as infections go the oldest one hasn't had one since she was seven and the youngest one just got her first one since she was 3 and that pretty much happened because she had a flap surgery and they put a foley in during the surgery.

Again, our kids will always test positive for ecoli because part of the bowel is used to augment the bladder with. If they aren't symptomatic or have smelly urine they don't have an infection,

Some of the self contained kits are pretty flexible.

I like the McDonald's story!
That is incentive.

 

[Rachelsong]

Sue & Snowbird - You have just been a wealth of information! I just got finished reading your replies to my husband. I'll definitely check out the coloplast website, those are the catheters we use anyway, so maybe they will work...

I can't thank you enough for sharing these great tips/experiences with me. We leave for Disney in a few weeks and are so ready to celebrate

Thank you!

Rachel