Anyone visited WDW who has an ileostomy? Advice needed

[WDWFOREVER]

I have a permanent ileostomy and consequently have a bag attached to my stomach to collect waste from my small intestine. Is there anyone on here that also has an ileostomy or a relative/friend with one and who has travelled to WDW? I just wondered whether you had any trouble with adhesive of stoma pouches in the heat and whether your pouches and other paraphenalia were ok after travelling in the hold of the airplane.

Would really appreciate any insight from anyone who can help.

Jackie

 

[goofieslonglostsis]

Hi Jackie,

I don't have an ileostomy, but got something called a Mitrofanoff. Simply put a continent urinostomy. While I don't use bags (my bladder still performs the function of collection), I do use dressings.

There are a couple of basic 'rules' anybody with these types of -stomy's can find some help in;

- supplies do fine in regular bagage, but ALWAYS have at least enough in your carry on for a day or 3 or 4. Especially nowadays with the nobody-can-pronounce-it-vulcano acting up. If something does happen with the flight and/or your bagage gets lost, you'll at least have enough supplies to last you a couple of days.

- always have the emergency number of your supplier on hand. If you need extra supplies, they can help you with it. Anywhere in the world. Don't know about the UK but our healthcare system even covers these charges.

- always carry at least 1.5 times as much supplies as you use at home. Different activities can have an impact on your body and thus the need to chance bags, bandages etc. Weather can also have an impact.

- look at what your supplier can deliver. Sometimes folks will use different supplies during travel, depending on the situation they want/need to use it in. Where possible, always try out new stuff at home first.

If you need water for emptying and/or changing bags; one option is to look for the companion bathroom. They've all got a sink right in the stall. Some of the handicapped stalls in regular bathrooms do, but not all of them do, so you'ld want to check on that before closing the door behind you. You can also always use first aid if you need to and can leave supplies with them while you're in the park if you need to.

Personal experience? I always travel with at least twice as much supplies as normal, and a bit more variation besides that (so that basically makes even more than twice as much). I keep about 5 days worth in my carry on, check the rest. They've always done fine. The sun does influence the adhesive of my dressings, some more than others. It makes them come off a lot easier. I can normally remove and repast a dressing about a couple of times, but in the FL sunshine that same dressing can come falling of after a couple of hours without me even having removed it once. Others have less of such a big decrease in adhesive powers, but they all seem to stick less and/or a shorter time.

If you have any 'living rules' and/or are proun to any infection or anything to the ileostomy; take along back up precautions for the 'just in case'. I learned that one the hard way! I actually never had a UTI (should've had many over the years, never did until our 2008 trip). Got my Mitrofanoff in the summer of 08 and had since than learned that it became more important to drink enough and regular spread out over the day. December 08; WDW-trip. I shifted my drinking patern somewhat because of the flight. Nothing major, but it did result in me having a UTI by the time we arrived at MCO. Didn't notice it as it's symptoms were masked. Back up meds didn't work, long story short, it got out of hand and most of the trip spent in the room. Lesson learned big time! Since then, each travel will come with me on extra strong preventive antibiotics during the trip, back up on hands, sticking to my fluids rules more stricktly than absolutely needed. And lo and behold; no more problems abroad since. *knock on wood*

I also always travel with dressings that allow swimming. I'm not always up for it, but want to have all of my options open and decide on a whim. I've used that option a couple of times and worked like a charm. Weather didn't seem to bother those dressings too much but then again I don't swim for that long of a time. I would advice also trying those out at home while soaking in a tub or something. I've found some wouldn't hold up for even a couple of minutes on me for some reason while others hold up perfectly.

Hopefully someone else will come along that can help you out a lot more. If not, some suppliers have got some great info and tips on travel with any type of -stomy. Have a great trip!

 

[LockShockBarrel]

I don't have any personally but my cousin has an ileostomy, one on the other side I can't remember the name of that isn't "active" but the hole is still there, med ports and a slew of other things. He had a 3 organ transplant, then a 5 organ transplant. He says it's all common sense things really. Bring more than you think you need, plan for the worst case scenario, have back up medications (if that applies to you), and know your equipment and what problems you may run into.

Obviously consider that you'll be around a lot of potentially germ-y areas, so I would urge you to be extra diligent with keeping everything clean. Keep in mind that at Disney you'll probably be exerting yourself more than usual, which will probably make you less able to fight off infections, so better safe than sorry.

The other thing that came to mind is if you want to check out any of the thrill rides, most of them have a dummy car so you may want to try that first so you'll be able to see where a lapbar or seatbelt will fall on you if you're worried about your bag interfering with it.

Unfortunately I can't give you much more advice than that, with all the immune system issues and other such things he really hasn't been to any sort of amusement park in quite some time.

 

[WDWFOREVER]

Thank you both for your invaluable advice. There is a lot in your posts that I will take into consideration when packing etc. Will be interesting though as I am diabetic too so most of my luggage will be full of medical stuff! I have bought myself a cool bag for my insulin as that will have to come on the aircraft with me in case it freezes in the hold.

Will be talking to my stoma nurse before I go but I just wanted to hear what people who have had the EXPERIENCE of being in this position rather than just what the medical profession advises. My stoma nurse is wonderful but she doesn't have a stoma pouch. I always find that the reality is somewhat different to what you can find out in books!

Will be trying out different pouches in the bath to check their adhesiveness although whether or not I will find the courage to go to the water parks, I am not sure.

Thank you both for taking the time to reply. I really appreciate it.

By the way goofliesonglostsis, I have never heard of a mitrofanoff so I am away not to find out more about it.

Jackie

 

[goofieslonglostsis]

Thank you both for your invaluable advice. There is a lot in your posts that I will take into consideration when packing etc. Will be interesting though as I am diabetic too so most of my luggage will be full of medical stuff! I have bought myself a cool bag for my insulin as that will have to come on the aircraft with me in case it freezes in the hold.

Will be talking to my stoma nurse before I go but I just wanted to hear what people who have had the EXPERIENCE of being in this position rather than just what the medical profession advises. My stoma nurse is wonderful but she doesn't have a stoma pouch. I always find that the reality is somewhat different to what you can find out in books!

Will be trying out different pouches in the bath to check their adhesiveness although whether or not I will find the courage to go to the water parks, I am not sure.

Thank you both for taking the time to reply. I really appreciate it.

By the way goofliesonglostsis, I have never heard of a mitrofanoff so I am away not to find out more about it.

Jackie

Jackie, take any type of medication with you in the carry on. Having it in checked bagage comes with some risk and not something you'll want to run into if something does go wrong. Don't worry about the amount of bagage. Don't know who you're flying with? Any US carrier will allow you to bring along your medical supplies free of charge, even if it exceeds the normal allowance. Do make sure that the extra bag(s) only have medical stuff in it, if there are other stuff in there it can be counted towards your allowance.

EU airlines differ a bit, but I've never found one of them that didn't allow you to at least have med supplies/meds as carry on and exceed the normal limit. Some EU airlines have a set limit for extra checked bagage and/or require a docs note, so can be worth to check that out. I know how much dragging along can be involved. One of the reasons I like DME: no need for me to keep lugging all my stuff around. I tend to have at least one extra carry on with meds, an extra suitcase with medical supplies, regular carry on is about 90% wheelchair stuff, 2 chairs, it's like I'm dragging along a whole village.

You're so right about 'theory isn't practice'. Also we're all different and I've found it's just as important for something to fit your caracter and way of life before it can be a real possible option.

As far as swimming goes; if you feel like it, go for it. Heck, it's Disney. Folks will be busy watching other stuff. Besides, it's not like you'll run into those folks at home again. Seriously though, it's a great place to 'get your feet wet' with swimming again. I know of some ladies that get themselves bikinis and/or bathing suits to 'match' their -stomy. Making sure there is some pattern or something else eyecatching to draw attention to so their bag becomes even less visible (if it even is, to start with). The resorts quite pools can be a great spot for a 'need to built up some confidence'. Some are literally abondened at certain times, not even a bird around.

A mitrofanoff is a halleluja-found if you ask me! The only urineostomy that allows an individual to stay continent. The actual -stomy is very discreet, if possible they'll even put it into your belly button. Most folks tend to notice me having 'one and a half' bellybutton, rather than noticing there is a hole there. They've attached my appendix to my bladder and the other side to the stomach walls. I can now cath through that. Because of the boweltissue they used I still need to put a dressing on, but some lucky folks don't even need that. And best of all; loads of less risk than any other urineostomy on the long run.

My first swim was a bit of "don't be silly, go do it GLLS!". For swimming I use a see-through dressing (works best for my skin) and was a bit apprehensive about that as I like to wear a bikini. Soon I learned that most folks are self-involved enough not to notice and even if they do, they'll assume funny things like the one-and-a-half belly button.

 

[LockShockBarrel]

Have you joined a message board of people with ostomy-s? I'm sure there must be one out there. I bet you'd have more luck asking a bunch of people with ostomys if they've been to Disney rather than asking of bunch of people who've been to Disney if they have an ostomy.

 

[WDWFOREVER]

Have you joined a message board of people with ostomy-s? I'm sure there must be one out there. I bet you'd have more luck asking a bunch of people with ostomys if they've been to Disney rather than asking of bunch of people who've been to Disney if they have an ostomy.

Yes I am a member of two. Was astounded to find that none of them had ever visited Disney!! Several had been to Europe but didn't really get the answers I needed. With you and goofieslonglostsis, I have more information from two people than I had with two forums devoted to people with ileostomies.

Jackie

 

[WDWFOREVER]

Jackie, take any type of medication with you in the carry on.

I am flying with Virgin Atlantic. So far their Special Assistance Department have been wonderful. I have a wheelchair to transport and crutches (which I use indoors and occasionally outside). I will take all medication with me, although with 11 different drugs for 3 weeks, I have A LOT.


[FONT="[I]Arial Black"]One of the reasons I like DME: no need for me to keep lugging all my stuff around. [/I][/FONT]

Was going to do DME but DH wants to pick the car up at the airport as it is "the start of his holiday".


As far as swimming goes; if you feel like it, go for it. Heck, it's Disney.

I hadn't thought about trying out the quiet pool first. Great idea. We are staying at Port Orleans Riverside and there seem to be a fair number of quiet pools around.

A mitrofanoff is a halleluja-found if you ask me!

I must say, I feel the same about my ileostomy (most days anyway). I had Ulcerative Colitis and sometimes getting out of the door in the morning to go to work took an hour and a half. Just the movement of the car as I pulled off the drive was enough to set it off. I don't regret the surgery but its all the "firsts" that are worrying me. I looked up Mitrofanoff by the way. Fascinating procedure. I was due to have a reversal of the ileostomy but it proved to be impossible as various muscles weren't as strong as they needed to be.

Thanks again for all your help.

Jackie

 

[goofieslonglostsis]

Again, no problem Jackie! I totally understand how a bit of info can be great.

Don't know what you have Virgin put on file already 9and from which airport you'll be flying) but if you haven't already; have them put into your file that you can not do any stairs if you have ANY problems with them. The system airlines use, don't make a distinction between being able to handle 5 steps or being able to do 50 steps. If you tell them you can do 5 steps, you can find yourself in a situation where they'll want you to do 50. Same goes for distances you can walk/wheel yourself. They don't make a difference in distance and with LHR being huge that can become a problem if they misjudge what you'll be able to do yourself.

Can imagine you being content with the -stomy.There simply always is a point at which a -stomy means a higher quality of life. At such a point the latter is more important than the downsides of the -stomy.

'Firsts' are a normal worry for many folks with a -stomy. Let's face it, -stomy still isn't something that tends to be discussed very openly. Something as excepted as usage of a wheelchair or ECV can even be a worry for many folks (this board already shows it), let alone something that can be surrounded with 'shh, don't talk about it'. You'll be fine though!

Allthough, when thinking about the restricted closetspace at WDW-rooms?.........

 

[WDWFOREVER]

Let's face it, -stomy still isn't something that tends to be discussed very openly. Something as excepted as usage of a wheelchair or ECV can even be a worry for many folks (this board already shows it), let alone something that can be surrounded with 'shh, don't talk about it'. You'll be fine though!

Allthough, when thinking about the restricted closetspace at WDW-rooms?.........

How true is that?! I am always open and honest about what has happened to me. At the end of the day, the more of us talk openly about such matters, the more support we can be to others who are going through the same thing. I will never understand the "shh" approach to bowel and bladdder problems - they are just other parts of our body. As they say in America "let's keep it real"

Jackie

 

[LockShockBarrel]

Glad we were able to help some!

I'm kind of torn on the whole being open thing to be completely honest with you. It seems I run into people who are on either extreme of the issue. Sometimes people hide it completely and other times its like "Sir I'm glad you have had such luck with your medical issues but I really was just asking the time" I guess its just a matter of you shouldn't feel ashamed or embarassed of things like that because you're certainly not the only one but there's a time and place to discuss it you know? I don't mean to start an arguement like everything else on this board seems to do, just my opinion.

 

[WDWFOREVER]

Glad we were able to help some!

I'm kind of torn on the whole being open thing to be completely honest with you. It seems I run into people who are on either extreme of the issue. Sometimes people hide it completely and other times its like "Sir I'm glad you have had such luck with your medical issues but I really was just asking the time" I guess its just a matter of you shouldn't feel ashamed or embarassed of things like that because you're certainly not the only one but there's a time and place to discuss it you know? I don't mean to start an arguement like everything else on this board seems to do, just my opinion.

Which you are entitled to! That was partly the reason why I headed this thread the way I did, and posted it on this particular section of the forum, so that people who didn't wish to know wouldn't read it. For me, the ileostomy is a disability and why should it be something to be hushed up yet my diabetes and need to use a wheelchair, and my asthma, would be open for discussion? I was amazed when I first had the surgery to find that so many people were affected by similar conditions but hadn't felt able to talk about it before. There are more of us out there than I thought!

As you said, it is just a matter of personal opinion. Mine is that if someone reads my thread after seeing the title, it must mean they are comfortable with seeing its contents, if not they have the choice not to click on it and read it if they are not comfortable.

Jackie

 

[goofieslonglostsis]

As you said, it is just a matter of personal opinion. Mine is that if someone reads my thread after seeing the title, it must mean they are comfortable with seeing its contents, if not they have the choice not to click on it and read it if they are not comfortable.

Jackie

Amen!

I won't go anouncing my -stomy around the grocerystore, just like folks don't go around telling folks how they pee. But when the subject comes up, and/or the situation is fit, I don't care what others might think. Not my problem. I've got an -stomy and that's not something that should be 'the forbidden word'.

Kinda scared of a lady in the hospital with that yesterday. Was at my urologists office, trying to make an appointment. This lady behind me gave me no space or privacy. Not even after a subtle hint. Well, than you can have it. When the assistant asked me what it was about, I simply talked all about the -stomy. Lady didn't seem to like it much, turned another shade of green mixed with red. Honestly, you're at a urologists office, are breathing down my neck so you KNOW you can hear all the details including possible I-don't-want-to-hear-it-ones and you can't handle it? Sjeez.

 

[littlewitch34]

I'm 21 and did Disney with a reversible ileo. I had a little trouble with the humidity and the adheisive but I managed. I even went on rollercoasters, and I was six weeks out from surgery -- don't worry, I had my doctor's permission!

If you want to ask me anything, feel free to PM me!