Crohns

[Guest]

Hello all. From reading the ileostomy thread it seems that a few of us have crohns. Ive had it for years and recently come out of hospital after having quite a lot removed.
I wondered if anyone else would like to share, especially as it can be daunting with this disease not knowing where bathroom facilities are. We could possibly share our WDW experiences and support each other.
Of course, only if you feel able to share

Lisa x

[Guest]

As I Said Wdw Is Fine Except For The Gaps And Smell Etc. I Hated Using The Toilet In An Average Restaurant Where The Facilities Are Basic To Say The Least Some Not Having Bins Within The Cubical Etc

[Sindysam]

I am another Cronnie and would like to know how people get on out there too and also do you know that if you let the airline know they will let you on the plane first and sit you near the loo if thats what you want?
When I was in Aton Towers recently the toilets were much too few and far between and I struggled to find one, so hope its different out there.

Be very interesting to hear your comments. I was also wandering about queueing I would (at the mo) struggle to queue for longer than an hour without need the bathroom, I can see myself getting near the front then having to leave in a hurry, would it be a cheek to mention this?
Sam x

[Heather1957]

I holiday with a friend who has crohnes and while it may not suit everyone she tends to take imodien or similar when travelling or when it could be difficult.

We have visited WDW several times and she has never had a problem.

[Sindysam]

Wish I could take Immodium but unfotunatley my crohns is quite bad and Immodium just doesnt work, I am just hoping I am over this latest setback/flare I am having at the moment and be well, to be honest the sun always seems to work wonders for me and I enjoy my hols its just the food takes a good few days for me to get used to and plays havoc with my tummy, but once I am over that bit I find it easier.
Sam x

[Guest]

Im with you there Sam. Imodium and similar have no effect on me either. Its a stupid disease that effects us all so differently. Unfortunatly when you have severe crohns or are in a bad flare, not a fat lot helps. My worse problem is the pain. Im hoping that the warm weather and just "going with the flow" will work well for me. I WILL enjoy my holiday no matter what. This time we will be taking DS for the 1st time, he will be 5 1/2 so I cant wait to see his face
Thanks for the idea though Heather. I know it would work for some

Lisa x

[Sindysam]

Sorry you suffer so much from pain Lisa, I do have pain sometimes I faint from it, but my main problem is bile salt malabsobtion which basically means that after my bowel re-section I cannot control my bowels (yuk sorry) with out the help of high dose steroids which I currently take!
I have just come out of the hospital, was in for a week to try and settle it, it worked until the IV steroids wore off now back to square one!

The only way Immodium will work for me is if I take 12 a day but you are only suposed to take 8 max. But like you I am not going to let it ruin my holiday I will just hope for the best and also like you go with the flow (but hopefully not literally).
Sam

[Heather1957]

Have you guys had surgery - my friend went 'under the knife' 5 years ago to have some of the infected intestine removed. She has to take something I can only describe as 'glop' every day now - looks like wallpaper paste!

Good job we've known each other for so long and are good friends because some of the noises coming from the bathroom can be quite frightening!

[Clare]

Hi all I was diagnosed with UC last year and have been to Disney twice since then with no problems at all Like some of you, immodium does nothing at all for me, had a few 'urgent' occasions this last trip but Disney CM's were fantastic (I have an ID card which just basically says let me use the loo now as I have UC! lol). Thankfully an extended course of steroids has helped settle things down significantly but I'm unfortunately looking at a bowel resection due to some irreversable damage caused by being undiagnosed for so long. Sam, have you ever tried codeine phosphate tablets? My consultant prescribed them for me to help 'control' things when flying, and they are the only thing that helps.

[Guest]

Hello another fellow chronie here

was diagnosed at 12 and am now coming up for 26. i found that i had no probs in WDW, bothrooms were brill, loads of them and really clearly marked. the only really bad day i had when we were away was after having milk on cereal one morning, not sure why but it played havoc with me...

Im the same in the fact the imodium and the likes dont work for me, now on aziothrapirne (sp) after changing consultants last yr and keeping the best i have been in about 5 years! even off high does steroids after being dependant on them for 4 yrs