continence issues

Discussion in 'disABILITIES!' started by oynk, Jun 7, 2014.

  1. oynk

    oynk Earning My Ears

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    We are adjusting pretty well to our post gac world using DD's wheelchair and FP+, but we still have a problem with a few very long lines and continence issues.

    When we discussed it at guest relations, we were told that it wouldn't a problem, if she had to go just tell a cm and they would let us out and then back in. Right?! It hit her in the middle of a 40 minute wait at test track. There weren't any cms around and it was wall to wall people we were trying to maneuver a wheelchair against flow of traffic. It was horrible. By the time we got out we were in way to much of a hurry to stop and explain so we could get back in line so we just gave up

    She. has nerve damage so she has delayed onset of the need to go; weak control; and decreased time until full urgency. Additionally, we eat differently when on vacation so her digestive enzyme supplements are a bit more hit or miss. We do add diapers (much to her chagrin) but they don't really contain things well.

    Then there is the added piece that no ten year old wants to have to discuss this in a room full of strangers. I'd love any suggestions for ideas we haven't thought of but for now if we can't fp it I think we will be skipping some of her favorite rides (which means always shipping test track or soarin).
     
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  3. aaarcher86

    aaarcher86 DIS Veteran

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    I'd go back to GR and explain what you just wrote. You tried going without the DAS and it was difficult.

    Make sure to focus on needs aside from the wheelchair.
     
  4. OurBigTrip

    OurBigTrip DIS Veteran

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    And if you aren't comfortable discussing it, I suggest writing it down and handing it to the CM at GS.
     
  5. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    I agree with the previous poster about going to Guest Relations and explaining what you just wrote.
    If you don't want to explain it in front of her, you could write a quick note and ask the CM to read it - start out by letting them know you feel more comfortable discussing the issue in writing.

    And, if you haven't discussed the issue recently with her doctors, I would suggest seeing if they have anything to suggest.
    We did for my youngest DD's urinary issues and it helped a lot. First we saw a Urology Nurse Practitioner. She made some suggestions and ordered some medication, which do help some people. In our case, it was not enough and DD had a Mitroffanoff procedure in Feb. 2014. That allows us to catheterize her bladder thru a stoma under her belly button. The recovery is not the easiest, but now almost 4 months out, I would say it was one of the best care decisions were have ever made. We went to WDW about 6 weeks after the procedure and it made such a difference.

    They also discussed a procedure with us called ACE, which is for bowel continence. We elected not to do that, since we are OK with her present bowel program. I know people who have had it and found it to work really well for them.
     
  6. oynk

    oynk Earning My Ears

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    Thanks for the encouragement. We do a lot of self advocacy and she Yahweh explains herself but totally not fur this. She did say it would be ok for me. I guess I have to be more.

    We are actuality taking about another cord surgery on the near future because this is getting worse. It's not usually as huge of a problem but where Else do you choose to wait that long without any bathroom access. Ha ha
     
  7. Twende

    Twende Best laid plans of Mouse and men.....

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    I understand your frustration! I took have an incontinence problem. It took me three tries and many tears and embarrassing moments before I succeeded in getting a DAS pass.

    I too was told to just leave the line when necessary and then fight my way back into line. I told the CM that I felt that was rude but if that was the new policy that I would try it. I did try on Splash Mountain and it was a horrific experience. Never again!

    On our next visit I spoke to another GR CM and was again told no. I was told I should just wear diapers! I explained that I do not need diapers nor do I want to do attractions while sitting in a soiled or wet diaper. I simply needed a way to use a restroom.

    On our next trip I tried one more time and was finally given a DAS. On our next trip I simply renewed it and did not have to explain all over again! In the seven days we were there, I used it twice but at least I had it for those two times!

    I would try again!
     
  8. PatMcDuck

    PatMcDuck DIS Veteran

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    You hit on 2 important issues. First off, the lack of privacy when describing why a person might need a DAS. Some of the reasons are pretty private. I am "lucky" that my son does not understand what I am saying. I think typing it up for the CMs could help. I wish they had a way to get more privacy for people who need it.

    Our DAS issues include toileting accidents for my adult son. I got graphic in my description, I had no choice, and I was telling the 100% truth. With my son, it is a #2 problem, not #1. (never an issue at home, just on Disney trips). And I have to be able to move fast if it happens. Wearing diapers is not the complete answer here, I will spare you the specifics. He is in a large convaid chair, and getting him back out and off a long line is almost impossible. Yes, FP lines can be long, but not as bad as the regular line. (Space Mountain line is where one disaster happened, Space and Soarin' are the worst for this).

    I agree with others, return and ask for a DAS again, and explain what happened.
     
  9. lanejudy

    lanejudy Moderator Moderator

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    OP - I have a 9-yr-old with various needs including kidney issues that create urinary urgency so I understand your situation. We've never had a GAC or DAS issued specifically for that problem. Some tips -- you may already be doing this but for others who may read this post:

    • Stop for frequent restroom breaks, even if she doesn't feel the "need" to go right at that moment.
    • We never enter a long-ish line without stopping at the restroom immediately prior to joining the line. And we don't do lines more than 40 minutes; fortunately we typically visit WDW during off-peak so this isn't too hard.
    • Keep in mind that some rides are long and once the ride has started she will not be able to leave. You will have to decide whether to even attempt these rides, especially if there is any wait before boarding.
    • My DD doesn't wear pull-ups in the parks, but would a Poise pad be more acceptable to your DD as long as that might be adequate for the need (maybe not if the diaper isn't containing all)?
    • Not specific to WDW but for the past year DD's urologist has had her sit on the toilet for 3 minutes each time to make sure all has emptied completely from the bladder; I do believe this has been helpful as we've had very little leakage and fewer urgency moments.

    I agree with other posters to return to Guest Relations and discuss how the situation isn't working for you. Give them specifics -- which attraction, approx. time, CM response, etc. It is extremely difficult to leave a line once you are into it, especially with a wheelchair, so I'm surprised they are encouraging that.

    Good luck and enjoy your vacation!
     
  10. oynk

    oynk Earning My Ears

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    Thank you, Thank you, Thank you for your encouragement! We went back to GR and explained the situation and they were much more accommodating. And, I did not have to go into extreme explanation.

    We ended up using the DAS twice; but it was so very helpful and really helped DD with the anxiety associated with having a problem.

    I appreciate all of the other suggestions as well. We do many of those things, but, in my attempts to be "polite," I guess I wasn't specific enough. She has both bladder and bowel issues.

    The bladder stuff responds OKish to following a schedule, but we do still sometimes have accidents because it doesn't always empty fully. It's not the most pleasant thing, but truthfully she is sitting in a wheelchair and lots of people have wet clothes from water rides, spills, and sweat. So, a quick trip to the bathroom and a change of clothes and we can go on with our lives. (We are all working on just dealing with what life hands you as best you can).

    Bowel issues are a totally different story. The pancreatic enzyme supplements are not an exact science and being on a different schedule and eating different foods from what she normally eats, means that we are taking our best guess for dosing. The end result is that she runs from one extreme to the other (constipation or diarrhea) for the entire trip. Add the inability to get normal sensations about an impending need and... you see the problem.

    Also, we did find it much more comfortable to talk to the CM at Epcot because he came out from behind the counter and squatted down next to us to talk which gave a little bit more privacy for this sensitive discussion.
     
  11. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    Glad things worked out for you.:)
     
  12. lanejudy

    lanejudy Moderator Moderator

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    :banana: Hope the rest of your vacation goes smoothly!
     
  13. clanmcculloch

    clanmcculloch DIS Veteran

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    I'm glad it worked out for you. Phew!

    I just wanted to make one suggestion. I realize that you're on vacation and want a break from some of what you deal with, but I would strongly urge you to try to stick as close as you can to how you eat at home. I know it means not partaking of certain aspects of the WDW experience (food) and/or having to follow a more rigid schedule to make sure you're eating at your normal times, but it really can make a difference with bowel issues.
     

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