osteoporosis/colitis

[MariMouse]

My teenage daughter has indeterminate colitis (definitely ulcerative colitis but can't rule out crohn's). She suffers from joint pain from the medication she takes and has osteoporosis. Being on her feet and walking for long periods of time causes her a lot of ankle pain. I'm concerned how well she will hold up on our trip to WDW. She really does not want to use a wheelchair and is worried about having to use the bathroom while waiting in lines. Any tips for touring WDW with these diseases?

 

[anonymousegirl]

When are you going? If it is off season, like September, a good touring plan, Fastpass, and frequent breaks may solve her issues with pain and fatigue.

Otherwise, a wheelchair may be the only way to go. Scooters are not usually available to under 18s and and GAc wouldn't be issued normally for fatigue/stamina issues. If you go for the wheelchair, consider renting off-site as they stock smaller wheelchairs that fit children/teenagers a bit more comfortably.

As for the urgent need for the bathroom, I would suggest she use the bathroom before getting in line for any ride. If she must leave the line, make sure she speaks with a CM who MAY be able to put her back into the line approximately where she left it. There is no guarantee of this.

Have you consulted her doctor about some preventive measures? I am not familar with her issues, but when I had severe pain due to Plantar Fascitis, I opted for a long-lasting cortizone shot so help me get through a week-long marathon of walking at WDW.

 

[Escape2Disney]

Slightly OT....

If your daughter is showing signs of Ulcerative Colitis/Chrons, and is starting to have joint pain, you may want to have her see a Rhumetologist. There is an autoimmune arthritis called Ankylosing Spondylitis that tends to go hand-in-hand with those two GI diseases. AS usually hits the SI joint first, but can be different for females. If you decide to have her seen, be sure it's a Rhumetologist who works with AS.

I only tell you this because early detection and treatment can really make a huge difference!

Hope you have a wonderful trip!

 

[clanmcculloch]

I have to agree that she really needs to be under the care of a rheumatologics. Hopefully they're also testing her various vitamin levels (with osteoperosis and joint pain coupled with the GI problems I can't imagine that she's not low in several including but not limitted to D and B12) as well as celiac, eosinophilic esophagitis and very specifically for various forms of Microscopic Colitis.

Now back to your WDW questions.

I know she's opposed to it, but she REALLY is better off with a wheelchair. Most people underestimate just how much walking is involved in a WDW vacation. Most people walk 6-8 mile PER DAY. She'll burn out and possibly even end up bed ridden and just generally so weakened that she'll get a flare of all of her autoimmune related issues. It isn't worth it for the sake of pride. Let her bling out her wheelchair to make it more fun for her if that's something she'd like.

As to needing to leave lines due to her GI issues, there's unfortunately no accomodation for that. The absolute best thing you can do is to work with some kind of touring plan service to come up with itineraries and touring plans to avoid lines in the first place and also make frequent pit stops at the bathrooms between rides. For shows, I would recommend that you talk to Guest Relations at the beginning of your trip to see if there's any way you can be seated at loctions by the exit so that you can leave quickly if you need to. You do need to pay attention to long rides though such as Ellen's Energy Adventure or even Spaceship Earth where you can not leave the ride without them having to completely shut down the ride and evacuate everybody.

I know that some people get frustrated with the recommendation of a good touring plan rather than some kind of GAC for avoiding waits but (a) there is no GAC for avoiding waits and (b) a good touring plan really can mean no waits. Josh on easywdw.com has recently posted his own experience of best practices at MK and it was amazing to see in action just how smoothly and quickly his day went. I have to say that I've used touring plans every trip and it really does go this smoothly. Note that the third installment also includes things besides his touring and is the one with the most of his personal brand of "snark". I personally really enjoy the snark but it's good to know going in that it's just how he is. The message boards over there are also wonderful for helping people figure out custom itineraries and touring plans. The board your on though here on the DIS is still the best one for questions specific to special needs. http://www.easywdw.com/uncategorized/timing-my-new-ideal-magic-kingdom-morning-hour-one/ http://www.easywdw.com/uncategorized/timing-my-new-ideal-magic-kingdom-morning-hour-two/ http://www.easywdw.com/uncategorized/clerical-timing-my-new-ideal-magic-kingdom-morning-hours-three-and-four/#more-8858

 

[ttintagel]

Just adding to the chorus that she'll truly be better off - and happier - with a wheelchair. When she's feeling up to it and wants to walk, she can push the chair.

I thought I wouldn't enjoy myself in a wheelchair, but seriously, once you get into the parks you have fun either way. Pain will ruin her trip more than a wheelchair will.

 

[steinmantx]

My 16 year old DD was just diagnosed with Ankylosing Spondylitis 2 months ago, although she has used a wheelchair at WDW for the last 5 years. We returned from WDW last weekend where she used a scooter for the first time. She enjoyed being in control, however she does have her driver's license. She used the scooter for long distances and most lines but parked it when we went into stores or restaurants. She was very resistant to the concept of the wheelchair the first year but once she realized how much better she felt limiting her walking she was ok with the idea. If she felt good she would push one of her sisters in it and they enjoyed the break from walking. It also gives you a place to store your water bottles

 

[daisyduck123]

My DD (turned 18yo last week), was diagnosed with UC when she was 14yo.

You can tell how often we've been to WDW by looking at my signature. She has done WDW in both a scooter & wheelchair.

We were fortunate to never be in WDW while DD was having a flare. She also, is now "cured" of UC, since having a total colectomy last year. My advice about the bathroom issue....tour early in the day, while the parks are less crowded, & be aware of where the bathrooms are.

Hope your DD has a wonderful trip!