Disney World With An Ileostomy; My Experience So Far

Hey Crohnies and Lucky Coiners!

Hope you’re all well and I’m actually blogging to you from my room in Walt Disney World’s All Star Music Resort, Orlando, FL. Since I’ve been here 1 week I thought I’d give you all a little update on how things are going and what it’s actually like being me on holiday with my stoma.

Myself and Stuart have planned this holiday for almost a year and first things first I have to say how amazing Stuart’s been through everything and how amazingly he deals with me being unwell! I’m so lucky!

I wish I could tell you all that I’ve felt amazing during our time here and that my Crohn’s hasn’t impacted our holiday in any way but I’ve always promised to be honest with you guys and I have to admit it’s been tough, REALLY tough. I don’t know if it’s just me who goes through this but due to my skin being so fragile and sore and weeping that I’ve leaked at a minimum of 4 times every day so far and it’s really draining. (I’ve also had prickly heat so bad I had to go get a steroid cream to sort it out because I clawed my thigh so hard I have a huge bruise!)

Don’t get me wrong I’m having the holiday of a lifetime and I’m loving every second of it and I have been alright to go on every single ride so far thanks to the Disney World Disabled Pass which has been invaluable while we’ve been here. It basically allows us to arrive at a ride, scan in to say we want on with a cast member then means we can go sit down and wait or go get something to eat/drink during the total wait time minus 20 minutes then come back and not have to wait for more than 10ish minutes to get on the ride! Thank you Disney and Universal!!

I’ve actually found that the rides are fine with my stoma due to going to the bathroom before we ride and also the face that the force of the ride keeps you in your seat so you don’t press on the bar with your tummy. I have to stress that you go to the toilet though because I had a very risky time on the 7 Dwarves Mine Train as we had just left dinner and were about to leave the park as it was closing but got the chance to ride. Going on that so soon after eating meant that I had a very full bag on the ride and it was all I could think about during the whole ride! The only one that hurt a bit was The Mummy in Universal Studios due to it having some really harsh stops but I’d say that’s not bad out of all the parks we’ve been to so far.

One things for sure I’ve lost a bit of weight while we’ve been here probably due to a combination of stress, being too hot to eat much and having more walks than I’ve done in years! I feel a lot more body confident as no one has commented on my bag or even looked at me funny because of it and also because my clothes fit much better already. It’s a definite plus side, so much so that I’ve even risked sitting by the pool in a bikini and even changed it once when we were at the pool and is not have made it to a toilet without my leak covering me.

There are really only 2 things overall that would make this holiday even better, never mind that I struggle to walk about because some unfit people can’t walk that far either… I wish more than anything I didn’t have this stoma because it would be amazing to not have to worry about leaking or having supplies with me everywhere but if it didn’t leak that would really help with the overall experience of the holiday because I fee like especially the first few days were a tiny bit tainted due to how bad my skin has been. I think I may be getting into a routine now that’s helping matters and involves LOTS of stoma powder and rushing to a bathroom to check for leaks every hour to hour and a half which has been time consuming but also making me feel more comfortable!

Now I’ll tell you all about the food here. It is beyond AMAZIG. We’ve had everything from Sprinkles Cupcakes…

… To the best steak of my life…

… To lots of Micky Shaped Food…

I’ve ate basically everything I could imagine (we literally just spent $30 on Lindt chocolate) so it’s no wonder I’ve been bagged up and had a few blockages which left me a bit sore for a few days but really can you blame me when I’ve been allowed to come to the happiest place in the world with no adult supervision? I have a feeling that after we leave and the treats run out back home I’ll look like Barney Gumble when he finishes his pint.

I’d definitely say that if you have a stoma or IBD don’t let anything stop you from doing what you want, it’s definitely trial and error but you will get through it and be surprised at how well you’ll get on even if you’re not physically well. Everyone has things to deal with and this is something you can handle even idiot does get you down occasionally since you’re only human!

Also woo CrohnieClothing is now international!

I’m off for a nap now before dinner, a day outlet shopping has tired me out so much!

Have a nice night!

Jen x

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