Suggestions for bladder disease?

[mom2prince&princess]

My family will be visiting Disney with my parents in April. My mom has interstitial cystitis which causes bladder pain and the need to urinate frequently and urgently. All of a sudden she needs to find a bathroom. I know there are plenty of bathrooms throughout Disney, but are there suggestions on handling this when we are deep in a line...say Toy Story Mania? Just hope people don't give her a hard time about leaving and getting back in line giving the impression of cutting? She is extremely shy and will be extremely embarrassed if someone rudely calls attention to her. Any suggestions/experiences welcome. Thanks!

 

[Bete]

First, on long rides I would try to go to the restroom before you wait in line. I would do the same afterwards. Also, I would get fastpass whenever you can do it.

This may not be pleasant, but I would actually wear a diaper or at least a pad. Depending on the amount of flow, you may want to consider using both.

During ride times I would try to stay away from over drinking without getting dehydrated. You can catch up on drinking later in the day.

 

[PatsMom]

If she is not on a drug for urgency, she might want to talk to her doctor about trying one before the trip to see if it helps. Even if its not appropriate for long term, it might help short term.

I have bladder cancer so I have much the same problem. Leaving the line and returning is just not possible in many situations. You just can't do it because there is no way to get back to your party. We use a touring plan that minimizes waits where possible, and I use the rest room before we get in line. I have worn depends as as emergency backup plan - it beats the thought of urine running down my leg! Or being horrendously uncomfortable. An example would be the Universe of Energy - over 40 minutes long and there is no way to stop the ride and let you off once it starts. An emergency must be dealt with or your Mom would be in pain.

Good luck to you - a touring plan will be a great friend to you!

 

[LeighMWilliams]

I am 33 and have IC. I have made many trips to WDW and have done so successfully using, as was previously mentioned, a well made touring plan and some poise pads-just in case. I also had my doctor draft out a letter explaining my disability to others and there are what I think are called "bathroom passes" available on the IC website that you can get, explaining why she may need to skip a long line to the bathroom. I have generally not had a problem with insensitive people, but maybe some looks. Some things that helped me were the poise pads, frequent restroom breaks, adhering to the IC diet, Pre-relief, and heating patches that stick to your tummy-just for comforts. It is a VERY uncomfortable, awkward, disease, but it my no means has to limit her good time. PS. I had the interstim implant done several years ago and it has made all the difference. Have no idea if she is a candidate or not.

 

[mom2prince&princess]

Thank you for your replies!

My mom goes in for a bladder stretching surgery in a couple of weeks. Fingers crossed that it helps!

 

[KPeveler]

Just agreeing with the idea of stopping at the rest room before getting in any line planning ahead.

you may find that a touring plan can be very helpful. Use fast passes to your advantage, and plan ahead so you can hit the attractions in an order that minimizes waiting in line. Also think about switching up the types of attractions, so that you don't plan on several long things in a row, where you can get stuck needing the restroom

I too have restroom urgency issues, and I never pass a restroom without stopping. I am at Disneyland every week and with some planning and many bathroom breaks I do just fine.

 

[dominiondad]

My wife has IC. We have bee pretty successful utilizing tour plans and hitting restrooms between rides. We tend to like the more popular rides, but even during peak times (Spring Break, Summer), we rarely spend more than 15 minutes in a line.
That being said, our downstairs bathroom is decorated in photos of all the restroom signs from around disney. We joked that we had visited every bathroom and started taking pictures of the different signs while she was inside.

 

[KPeveler]

Okay. So going to do this in the future. My wife may think I'm nuts but I'm going to start taking pictures of all of the restroom signs we encounter in Disneyland!

 

[PatsMom]

Add me to the list of people who will be taking restroom pictures! I swear I have every location memorized. And my larger bathroom is already Disney themed so it will fit in well. Great idea and I hope you don't mind me stealing it!

 

[Braden's Momma]

Add me to the list of people who will be taking restroom pictures! I swear I have every location memorized. And my larger bathroom is already Disney themed so it will fit in well. Great idea and I hope you don't mind me stealing it!

Me too! We have Disney bathroom upstairs so this would be perfect as I too am a frequent bathroom traveler.

 

[SashaFarce]

Some things that helped me were the poise pads, frequent restroom breaks, adhering to the IC diet, Pre-relief, and heating patches that stick to your tummy-just for comforts. It is a VERY uncomfortable, awkward, disease, but it my no means has to limit her good time. PS. I had the interstim implant done several years ago and it has made all the difference. Have no idea if she is a candidate or not.

I second this. I basically live on Prelief and AZO pills (I haven't been to the urologist in quite some time, so this is pyridium OTC for those who don't know). Avoiding citrus for me is super important, and it's actually better for me to be more hydrated because I have less pain. I go to the restroom generally at least once an hour (used to be much more often).

 

[dmccarty]

My parents have always said if there is a bathroom, I have to visit it.

MK seems to have the most bathrooms. A bathroom is never far way in MK. The only problem I have with the MK bathroom setup is that there are no bathrooms near the bus stops. The only bathroom is near the ticket office and with the security barricades it is a longer walk to/from the bathroom and bus stop.

EPCOT is so so and the bathrooms seem to be more hidden. In WS they seem to be very spaced out especially when one has been sampling beers at F&W. But at least there is a bathroom near the bus stops.

AK is ok I suppose but the bathrooms are well spread out and there is no bathroom when you get off the train so you have to skip the animal trails to find the bathroom. It seems like there is more distance between bathrooms in AK but they are there. Eventually. No bus stop bathrooms. Why, can't they have bathrooms at the bus stops?

DHS is a bathroom nightmare. I THINK I know where they all are but for some reason they just seem hidden to me. Maybe because DHS is not my favorite park. Heck, maybe this is why DHS is not my favorite park. The bathrooms are kinda far away but not too bad for the AKL/AKV bus stops.

No problems at TL and BB in finding a bathroom. Kidding.

Thankfully, I don't have bladder issues but I do drink quite a bit of water and when it is time to go, it is time to go so I understand the OP's concern. Before getting on rides I ask the family about a bathroom stop even with a FP. You just never know if there will be a breakdown on the ride. We avoid the monorail now because it seems to always have a problem. One of my nightmares is having to go to the bathroom and to be stuck on the monorail...

Prince Charles once said something to the effect that one should visit the bathroom as often as one could because you never knew when you would get your next chance. Makes sense I guess since he can sit for hours at some ceremony. I think of Prince Charley when I see a bathroom and wonder if I should visit.

I would make sure I knew where all of bathrooms were located at the park we were visiting. Maybe give Mom a park map so SHE knows. Hopefully that will make it easier on her.

Later,
Dan

 

[dominiondad]

Add me to the list of people who will be taking restroom pictures! I swear I have every location memorized. And my larger bathroom is already Disney themed so it will fit in well. Great idea and I hope you don't mind me stealing it!

Steal away! The kids loved it. We found the kids went from being annoyed to actually enjoying the whole picture thing.

 

[Nennie]

My touring plan consisted of fast passes and poise pads! This is going to sound weird, but the poise pads gave me the extra confidence when standing in line, and even though I "used" the pads a little here and there, just having one on helped me. It's when I get anxious and start crossing my legs to hold it in that it gets worse. With the poise pad I would just stand there all casually, and it wouldn't get as intense!

Also, at most rides, when you get up to the ride and have to go, you can bypass the ride, hit the bathroom, and come back in the back door! Just ask! It happened to me almost every time on Star Wars (maybe the excitement and/or fear of being jostled around). I was an old pro on how to run to the bathroom and get back in! LOL!!!

 

[smidgy]

OP. my guess is you mean uretha stretching?

anyway, tell your mom to drink plenty of cranberry juice. and ditto on the poise pads or depends.

 

[clanmcculloch]

anyway, tell your mom to drink plenty of cranberry juice. and ditto on the poise pads or depends.

Do NOT drink cranberry juice. That is one of if not THE worst IC trigger there is. That's actually how I figured out to discuss IC with my DD's urologist.

Have you looked at all into dietary changes for IC? It can make a huge difference for some people. I'm grateful that my DD's is completely controlled via diet though I know not everybody is lucky enough to be able to do so. It's definitely worth investingating though.

 

[katrina1122]

OP. my guess is you mean uretha stretching?

anyway, tell your mom to drink plenty of cranberry juice. and ditto on the poise pads or depends.

NO NO NO Cranberry juice for IS! I learned this the hard way. I was drinking tons of it and was in worse and worse pain.

Dr finally did a biopsy of my bladder and found the IS after giving up on meds for urgency. Cranberry juice and other acidic things like tomoatoes aggravate the IS ulcers. For me, I do all in moderation except Cranberry juice. I can't even eat 1 cran-raisain without going into massive spasms. I consider it a food allergy at this point and even ask about suspicious foods on menus. Also avoid caffiene at all costs.

Before she does the surgery has she tried Elmiron yet? I took it for a year and it 'cured' me. I still have it, but it's under control for the most part. I still go every chance I get, but I'm not in horrid pain and can wait if necessary.

I can remember being stuck in traffic and needing to go and just sitting there crying hysterically. Elmiron cured that.

 

[smidgy]

wow! am I embarrassed! sorry everyone. I had chronic cystitis back in the late 70's and took azogantrasin (I think was the name, turned your pee orange) had my urethra stretched and the doctor said cranberry juice.

thanks for correcting me. I hate to spread false medical advice.. yikes

 

[clanmcculloch]

Smidgy, don't be embarrassed. You were repeating what your doctor told you. IC is different from other forms of cystitis and does seem to be worstened by certain foods, cranberry for some reason being the most common and worst for many. People are always surprised when I say that DD12 has to avoid all traces of cranberry or her bladder condition will flare (we're talking 2 weeks of UTI symptoms from a single craisin or sip of cranberry juice) because cranberry is typically what is recommended for bladder issues.

I'm not sure why but it doesn't seem to always be the acid even though you would that it would be. My DD12 has to avoid all traces of cranberry and orange but she can handle small amounts of lemon and lime (ex: Babycakes uses 3tbsp lemon juice in each huge vat of icing and this is ok but a salad in the Poly CL lounge had the juice of a whole lemon in a container that looked to be about maybe a half gallon in size was a lot more lemon than I was willing to risk for her). She can eat as much tomato sauce and pineapple as she wants without being triggered. Blueberries are also a common trigger but she was already avoiding them because they showed up on her allergy tests so I really don't know how they would affect her because she hadn't eaten them since long before her diagnosis of IC. I hadn't considered caffeine. I'd hate to take away her chocolate. She really doesn't drink much that has caffeine though she did have a bottle of iced tea two days ago and hasn't had any reaction so it must not be a problem for her.

 

[bearloch]

I would get a medical card to get in " front" or handicapped lines for rides like Haunted mansion, teacups etc that dont have fast passes!! Hope it helps!!