Daughter's Bathroom Issues

[madenon]

Hi LSantos,

so sorry to hear the urologist wasn't of any help to her so far. I really hate the fact that it seems like he didn't have a lot of empathy for the psychological effect it can have on a young girl to have to use pads and constantly live in fear of an "accident".

I know there are some "diaper-like" (spelling?) pads, but I can so feel with her if she would just be crushed by only even seeing them. Isn't there anybody of the medical people on her case that might be able to understand her feelings and help her find something that she can use without being so upset? At this point I wouldn't care if it was a specialist who has "nothing" to do with urology, if it were me or my daughter. Four weeks is a long wait if you feel so upset, and the trip being in between will only make it worse. I really wish I could offer you some help. It's my own worst fear, not only having to deal with these kinds of stuff, but running into no consideration /option that suits my own feelings about this subject.

Just a long shot. I know that there are some sort of "collecting bag" they use if there is need to collect a urine-sample from a girl-infant. The apply the sticky part of the bag to the private parts, and just wait until the child has peed. I don't know if there is anything in adult size, and if it even can be an option for her, but maybe it's worth calling around?? It's no way a great option (to be honest; I would be upset by it), but she might think it's at least a bit better than failing pads. (I would, but she might have a different opinion)

Or even talk about having a "permanent" catheter put in for a couple of days while she is at WDW? It isn't a great great thing either (having to wear a bag to collect the urine, worry about hiding that bag beneath pants -hot weather, so not nice-, worry about if anything is visable etc.), but maybe she would prefer it to the effect of failing pads?

Have you tried looking for a board on incontinence? Even in my small country there are some, and there are a few teens on there. I'm prown to think that with a big country like the usa there most be a board or community on this, and there should be teens out there also. Not only can it be such a big mental support for her, they might just have some tips for her. It can be very confronting at first (only you guys can judge if she's up to it, or it might be wise for you to have a look -maybe even without her knowing so she doesn't get her hope up-), but I've found it can offer so much more no doc can offer.

Edit; overhere we've got something called incontinence-nurses. They don't only deal with incontinence, but all kinds of urology-problems. They help with the practical side of things. A doc might prescribe something, but they look closer if that is really a good option for that specific person. They don't only look at it like "ok, we can controle the bladder, done", but they look beyond that and also take in consideration the way a person lives and what they expect or need for a solution to really work. They have more time for you and the ones I've run into are all open to the psychological side of things. I don't know if they've got them in the usa?

 

[djblu883]

I work in a nursing home where I see this all day long...I'll tell you what I have seen my ladies do that seems to have worked best for them...and yes even there they are still quite worried about their dignity and modesty....they use a combination...poise pads and a pull up undergarment that will asorb any overflow accidents if they occur...and it does happen..they take pills for heart conditions that make them "go" frequently....just toliet often as possible and esp. before a ride...use fast pass when ever possible so you can time restroom stops accordingly and use the combo...and as another poster stated...don't allow her to not drink because she is concerned about accidents...she could suffer from heat stroke and or dehydration and that would be worse!!!! and we will all say a prayer for her that all will go well! oh yeah....the oinments suggestion would be helpful...sweating can cause "diaper rash" and make her very uncomfortable....even plain vaseline used liberally works well to prevent this!

 

[LSantos411]

Thanks again, all. DD says she would like the maximum protection possible, so long as it remains discreet. She doesn't seem to be bothered by using a pad or anything, just by the risk of a noticable accident. (Totally understandable in my book). I haven't heard of an incontinence nurse like you all describe, but I will look into it later today.

She's also mentioned a concern about how her stomach will react between unusual food (she doesn't eat much fast food) and the heat of Florida in summer. I just want her to be able to be relaxed and happy and not be thinking about this on our trip. I don't want her to be having to constantly worrying about wear the nearest restroom is and all that -- I'll try to do that for her.

Any idea what kind of provisions the Guest Assistance Card might make for us? I know it won't help us once on rides, but maybe it can help with waiting.

 

[madenon]

Don't know, I'm a virgin as far as WDW goes. It might be worthwhile to inform if she can wait in a special area that gives her quick/easier access to the bathroom? I don't know if they've got those area's, doubt it a bit, but not asking while make sure you wont know if they did happen to be there. Or perhaps talking about the possibility of changing clothes somewhere at a private room in a rides building if she were to have an accident. In that way, at least she would have to walk through minimal amount of crowds as possible, so hopefully that'll reduce her worrie about other people noticing anything.

In what way is she worried about the food? I can see her stomach getting upset, but can't think what influence that might have on peeing. Or is she also worried about diarrea (spelling?)? If that's the case, you might think about trying at home how she does on junkfood, or think about bringing some healthy food in for her (allthough there also are a lot of better options than junk in WDW ). It'll still leave the hot weather, but at least it's one less thing she'll have to worrie about.

And allthough I know a mother only wants to make things better for her children, keep in mind that she will probably worrie to some extend. It's her first trip with this problem and not the smallest threshold to take as a teenager. That can come with some worry. They can become pretty big for some, but if she gets there and finds she's ok, hopefully they'll lessen for the rest of the trip.

Regardless of this all, she's a brave girl and can give herself credit for that. Enough people with worries or medical problems would lock themselves up in the home, afraid of "what if". She is worried, but confronts her fear and continues to live the way she wants to (as far as her health will let her). That is such a big sign of inner strength.

 

[LSantos411]

Thanks for the response. I do admire her willingness to keep going with this and not let it stop her. I haven't told her this, but I doubt completely avoiding accidents will be possible. The only thing I can think of is some way to keep them from being publicly noticable.

 

[SueM in MN]

Thanks again, all. DD says she would like the maximum protection possible, so long as it remains discreet. She doesn't seem to be bothered by using a pad or anything, just by the risk of a noticable accident. (Totally understandable in my book). I haven't heard of an incontinence nurse like you all describe, but I will look into it later today.

I don't know why I didn't make the connection because I work with several Wound Ostomy Continence Nurses (They call themselves WOCN; here is their national website: http://www.wocn.org ). I think of them as "Wound and Ostomy Nurses" and completely frogot the "Continence" Part. On the left side of the website page, you will find a part labeled :WOC Nurse Referral. When you click that and put in your state or zip code, it will give you a list of WOCN in your area. One caution though, it only lists ones who are members of that organization - there may be others in your area who are not members. And, if it's like professional organizations I belong to, some of the members list their home address for membership (and that would be what comes up when you search).

Any idea what kind of provisions the Guest Assistance Card might make for us? I know it won't help us once on rides, but maybe it can help with waiting.

Look in the disABILTIES FAQs thread and see if you can figure out how it can help you. If you can't, you can PM me and I'll help you think it thru.

Just a brief update: we've tried to see if we could time how often she needs to use the restroom, but there is no discernable pattern. We visited a urologist monday who gave her a drug called Ditropan XL, but so far, we have seen no change at all, aside from a dry mouth (apparently a common side effect). He also suggested using pads. She has a followup appointment in 4 weeks (unfortunately after our trip).

I don't remember how long Ditropan takes to see any results, but I'd give it at least a week before you conclude it's not doing anything. My DD was on it and I remember being told at least a few weeks. It may even be longer. You can check with the Pharmacist - they should be able to look it up for you.

We tried using some pads, but they didn't seem to work very well... not enough coverage or capacity.

The pads are kind of confusing. Some of them don't really have much capacity (even though they might be called something like "Super". Many of the packages have a little guide at the side of the package that sorts the products in how much they absorb. The Poise product that has the highest absorbancy is called Ultimate. So, it might be that she is not using the most absorbant. With a combination of pads and protective underwear she should be able to find something that works for her, but it may take a while.

Unfortunately, she's had occasions where she's had to use the restroom only 15 minutes apart, so any length of time could pose a problem.

I'm curious whether she has the sensation that she needs to go and just doesn't get enough warning or just knows after she is wet.

Just a long shot. I know that there are some sort of "collecting bag" they use if there is need to collect a urine-sample from a girl-infant. The apply the sticky part of the bag to the private parts, and just wait until the child has peed. I don't know if there is anything in adult size, and if it even can be an option for her, but maybe it's worth calling around?? It's no way a great option (to be honest; I would be upset by it), but she might think it's at least a bit better than failing pads. (I would, but she might have a different opinion)

That's a good suggestion, but I can say that it would not work. They are not that easy to use on little girls and you end up getting a lot of leakage. When you are trying to collect urine, the leakage doesn't matter much because you are only worried that you will get enough of a sample.
It also would not be possible to walk with one of those on.
(Men have it a bit easier since there is a similar device that goes over their 'business part' that works fairly well for some men. There isn't a similar thing for women.)

 

[OneLittleSpark]

It is possible to get bags that ties onto the leg that hold the urine. They have a strap on cup with a tube into the bag, and don't need any medical assistance to apply. I can't find links to any designed for women, but I was sure that they did make them for both genders. Obviously if she did go for this option, she might not want to wear shorts, but a long skirt or a reasonably loose pair of trousers should hide them. Again, you might want to research this yourself before suggesting it, in case they don't make them for women.

As for the food, as madenon said, there is a wide range of non-junk food available at WDW. In fact they're in the middle of a push towards healthier leanings. In case you've not yet found it, this link has menus from just about every restaurant in WDW:
http://www.wdwinfo.com/wdwinfo/dining/diningmain.cfm

I hope you don't mind me asking this, but does your daughter have any other effects from the accident? The reason I ask is that if she has any mobility issues as a result of it, you might want to consider renting a wheelchair. I hope this isn't adding yet another worry on for you, but it's better to be prepared.

Good luck, I hope you have a wonderful holiday!

 

[djblu883]

Disney is getting much better with offering healthy selections in almost every venue....you can also take in snaks for her that she prefers incase she doesn't care for what they offer so long as it isn't packed in glass or metal containers!yogurt, fruit, turkey sandwiches...its not all burgers and fries....

Thanks again, all. DD says she would like the maximum protection possible, so long as it remains discreet. She doesn't seem to be bothered by using a pad or anything, just by the risk of a noticable accident. (Totally understandable in my book). I haven't heard of an incontinence nurse like you all describe, but I will look into it later today.

She's also mentioned a concern about how her stomach will react between unusual food (she doesn't eat much fast food) and the heat of Florida in summer. I just want her to be able to be relaxed and happy and not be thinking about this on our trip. I don't want her to be having to constantly worrying about wear the nearest restroom is and all that -- I'll try to do that for her.

Any idea what kind of provisions the Guest Assistance Card might make for us? I know it won't help us once on rides, but maybe it can help with waiting.

 

[SueM in MN]

It is possible to get bags that ties onto the leg that hold the urine. They have a strap on cup with a tube into the bag, and don't need any medical assistance to apply. I can't find links to any designed for women, but I was sure that they did make them for both genders. Obviously if she did go for this option, she might not want to wear shorts, but a long skirt or a reasonably loose pair of trousers should hide them. Again, you might want to research this yourself before suggesting it, in case they don't make them for women.

The bags are called 'leg bags' and they are usually used with internal catheters. For men they make an item that goes over the male anatomy (trying to avoid the name of the item and the male anatomy because the words will get blocked it I type them) is stuck there with adhesive and has a tube that leads to a bag.
There isn't any similar product for women that I am aware of - I do know there are some 'female urinals', but they are more for when you can get to a private place, but can't get onto a toilet. There are no things I am aware of for women, but that would be a good question for a WOC Nurse with OneLittleSpark's description.

 

[madenon]

Lol, well at least your way of putting it made me laugh, so the word-blocking is good for some things.

Sorry to hear the bags I mentioned are no option, hope I didn't give false hope.

Intruiging (spelling?) to see how different things can be from one country to the next, with the combination of wound, ostomy and continence nurse in the usa. Well, better to combine it and have it than not. I know a lot of people have benefitted from a continence nurse, and that's all that counts in the end.

 

[LSantos411]

I'll be looking into the WOCN later today, so hopefully that will be of some help.

She doesn't really have any significant mobility issues, though her back still hurts on a fairly regular basis, and she walks a bit slower than before now. We are prepared to rent a W/C once we get there if we determine she needs it.

We're still hoping Ditropan will help some, but so far there's nothing.

I'm curious whether she has the sensation that she needs to go and just doesn't get enough warning or just knows after she is wet.

According to her, she can't feel it until it is almost too late. She's been ok at home, but that's only a few steps from a restroom. I can only imagine if there are restroom lines at WDW.

 

[Princess Stitch]

Here's my thoughts:

- Having some protection is better than none. Even if the pads don't catch everything, it will help make the mess a little smaller.
- If you rent a wheelchair bring a blanket or towel or something she can place over her lap if she has an accident. Then you can wheel right into the restroom and get changed without anyone seeing.
- Black pants will show the wet spot the least as opposed to jeans or light colored material.

 

[LSantos411]

Would pads be the best option, or would a heavier product be better? How discreet are they?

Do you all think preemptively renting a w/c would be a good idea, or should we just wait and see how it goes?

I've written a letter explaining the situation for the CM at GR, and hopefully that will be sufficient. It's only a paragraph or two, but I would think that would be enough.

 

[SueM in MN]

Regarding pads or a pant-type option, a lot depends on her size. The more absorbant pads are rather long and thick. The pants are most easily found in adult sizes - thosee are too big for my DD who is 5 feet tall and about 90 pounds. What she actually uses sometimes is a product called "Goodnights". They are similar to pull-ups that toddlers use, but made in large sizes. They are actually marketed for bedwetters, so they come in sizes up to 125 pounds. They are thin and discreet (the idea is that older kids who are bedwetters can wear them under pajamas and no one will know). They are quite absorbant and I know people with children with disabilites who use them as their main product.

 

[Poohs Wishing Star]

Hi!

I was searching for products for female incontinence and found websites that had products that might be useful for your daughter.

A company called NorthShore Care Supply has products of varying styles and strengths for all ages and sizes, including very large adults. The company states that it has strengths ranging from light to extra. The website address is:

Northshore Care
Note from Moderator: I edited the post to correct the links since the OP had not posted enough times yet to add links. This site is nice because it clearly tells what the product capacity is. For example, for Goodnight, which I mentioned in another post, it indicates the capacity is 13 ounces.

Another company is My Health and Safety Adult Incontinence Products. Once again, this company states that it has various styles and strengths for adults of all ages and sizes. The website address is:

My Health and Safety

A third company is Home Care Delivered, Inc. The website address is:

Home Care Delivered
I hope that you can find something that will help your daughter be more comfortable and secure.



RJ

 

[LSantos411]

Only a couple of days left! We've gotten some protective underwear and hopefully that will suffice. Any last-minute tips are welcomed.

 

[Piper]

No tips--just lots of pixie dust and wishes that you have a problem-free trip!

 

[Ms_Butterfly]

I hope everything goes well and that y'all have a GREAT time at Disney!!!!

 

[Vijoge]

Thanks for the product links, I'll take a look. It may take some convincing for my daughter. I hope they will be sufficient. Does anyone have any personal experience with them?

I have looked at the GAC and will attempt to get one when we get there.

I used to use Poise pads but have recently switched to Tena. I find the Tena pads to be much more absorbant. Email me if you have any questions-I have had this problem for many years.

 

[Vijoge]

According to her, she can't feel it until it is almost too late.

How well I know that feeling. . .