Disney with an ileostomy

[figmentswife]

I am looking to get some feedback from those who have been to Disney with an ileostomy. My DH may be having surgery soon and we have a trip planned for June, that he hopes we will still be able to go on. Based on talking to Dr.'s and other's who know about it, there seems to be no reason we won't be able to go. We are only GUESSING, but we think he would have surgery in February or March.

June will be HOT, and we know that it will be important to keep him hydrated, would it be best to rent an ECV for the trip, to keep him from over doing it (being only a few months from surgery and to lesson the chances of dehydration)

Will the First aid be able to hold extra supplies, or should I bring a backpack (in case of emergency)

How many breaks should be plan for? We usually do rope drop, then break in the afternoon, then back to the parks for the evening. We know this may be hard on him, and he can go back to the resort to rest more if needed.

Should we even be planning this trip?

What other questions do I need to ask?

Based on everything I have read I don't think he will need a GAC. He doesn't ride many rides, and we know to check the bag often.

Thank you in advance for your advise/help.

 

[LockShockBarrel]

I don't have one but a cousin of mine had 2 different hookups at different points so I know a little bit from him.

It sounds like you have good ideas so far. I'm not sure I'd recommend an ECV unless he has other issues with stamina, only because you may find it more of a hindrance than a help. Maybe you could reserve one just in case (assuming you use an outside company) and know it's there as the trip gets closer then if he finds that he does bounce back more than expected you don't have to use it. I don't know how long it takes to recover from this type of surgery (cousin had other issues that kept him in the hospital longer), but I'd talk to your husband and find out if he's even comfortable using an ECV.

Hydration will definitely be key, but it really is for everyone. You can ask the Dr if he recommends anything special like how much your husband should be consuming or if he says something like gatorade would be better than water. In the same vein of hydration, just stay in the shade as much as you can and that will help a lot.

With the shade topic, you may find it helpful to take 10-15 minute breaks every so often in a shaded or air conditioned place. That can be lots of different things like meandering around a shop or stopping for a snack, or longer during something like Universe of Energy or Finding Nemo the Musical, or a meal break. I know you said you've gone before but I find most people don't think of those types of things as breaks.

I don't know if First Aid will hold supplies unless there's a reason like refrigeration but I'm sure someone will come along and let you know. If you really find your husband tiring out he can rest at First Aid rather than going back to the hotel. There's beds and it's quiet and air conditioned. I would definitely carry some stuff with you, and you may want to bring extra...well I'm not sure what they're called..the sticky things.

The only thing with rides that would be an issue is if there's a lapbar or seat belt that would hit against the bag. You said he doesn't ride many rides and since you've gone before you'll be familiar with ride restraints and what might be an issue.

Truly, I think the biggest thing you have to remember is to talk to him through your planning. Don't guess or assume what he's feeling or wants to do or avoid. In so many cases where a spouse has a medical issue that, in their mind, takes away what they see as "control", well meaning husbands or wives or other family in their effort to help make that feeling worse by overthinking things. Not to say you shouldn't be educated and prepared. I'd just make sure he doesn't see your efforts in trying to make things easier as babying him or something like that you know?

 

[daisyduck123]

In Jan. 2011, when DD was 16yo we took her to WDW with an ileostomy. We did rent a scooter for her, as she had JUST that week been released from a NINE WEEK hospital stay & was not used to doing much walking. We did not get a GAC at any time. It was not needed & the idea never even occurred to me.

We carried her supplies in a backpack. No problems there.

The only issues (bag related) she had was that the heat was making her skin itch (red, bumpy rash) at the site where the bag attached. This was January in WDW, so it wasn't even really hot outside. DD did mention that she didn't think she'd ever be able to do WDW in the summer months while having the bag. The rash would've been worse & she would've been extremely itchy. The bag was removed in May.

 

[figmentswife]

He is the one asked if he may need it, he is concerned about the heat and stamina. I guess we just won't know for sure until we get closer in

Hydration will definitely be key, but it really is for everyone. You can ask the Dr if he recommends anything special like how much your husband should be consuming or if he says something like gatorade would be better than water. In the same vein of hydration, just stay in the shade as much as you can and that will help a lot. We are planning to alternate water/powerade. This is on the list of questions for the Dr.[/COLOR]

With the shade topic, you may find it helpful to take 10-15 minute breaks every so often in a shaded or air conditioned place. That can be lots of different things like meandering around a shop or stopping for a snack, or longer during something like Universe of Energy or Finding Nemo the Musical, or a meal break. I know you said you've gone before but I find most people don't think of those types of things as breaks. We are planning on doing ALOT of resting. [/COLOR]

I don't know if First Aid will hold supplies unless there's a reason like refrigeration but I'm sure someone will come along and let you know. If you really find your husband tiring out he can rest at First Aid rather than going back to the hotel. There's beds and it's quiet and air conditioned. I would definitely carry some stuff with you, and you may want to bring extra...well I'm not sure what they're called..the sticky things. I never thought of First aid as a resting place if needed. I am sure he will be more comfortable change/cleaning at first aid anyways.[/COLOR]

The only thing with rides that would be an issue is if there's a lapbar or seat belt that would hit against the bag. You said he doesn't ride many rides and since you've gone before you'll be familiar with ride restraints and what might be an issue. There are a few he will ride, and we know about the lapbars, we have been researching a TON about what to do, where and how, and I guess we won't know much about this part until he actually has it. (where it sits, how low)[/COLOR]

Truly, I think the biggest thing you have to remember is to talk to him through your planning. Don't guess or assume what he's feeling or wants to do or avoid. In so many cases where a spouse has a medical issue that, in their mind, takes away what they see as "control", well meaning husbands or wives or other family in their effort to help make that feeling worse by overthinking things. Not to say you shouldn't be educated and prepared. I'd just make sure he doesn't see your efforts in trying to make things easier as babying him or something like that you know? He has been a part of the planning all along. He asked me to ask questions here from people who have been. He reads the Dis, but doesn't post. I am more concerned that he is going to WANT me to take over, then he is over me taking control. lol We are just trying to be prepared as much as we can for things that may come up at Disney. I had mentioned changing this trip, but he will not even think about changing it, as this planning is giving him something to focus on besides being sick. So I am planning as if we are going in June, knowing in the back of my head that this trip may get changed/canceled. [/COLOR]

 

[figmentswife]

In Jan. 2011, when DD was 16yo we took her to WDW with an ileostomy. We did rent a scooter for her, as she had JUST that week been released from a NINE WEEK hospital stay & was not used to doing much walking. We did not get a GAC at any time. It was not needed & the idea never even occurred to me.

We carried her supplies in a backpack. No problems there.

The only issues (bag related) she had was that the heat was making her skin itch (red, bumpy rash) at the site where the bag attached. This was January in WDW, so it wasn't even really hot outside. DD did mention that she didn't think she'd ever be able to do WDW in the summer months while having the bag. The rash would've been worse & she would've been extremely itchy. The bag was removed in May.

I guess until he gets the bag, we won't know, but I am concerned about the heat. DH doesn't seem to care. He just wants to go to Disney. - Thanks for the response, how was the bag removed, did your DD have a Jpouch, how was the bag removed?

 

[daisyduck123]

I guess until he gets the bag, we won't know, but I am concerned about the heat. DH doesn't seem to care. He just wants to go to Disney. - Thanks for the response, how was the bag removed, did your DD have a Jpouch, how was the bag removed?

Yes the bag was removed. She has a Jpouch. She had been suffering from Ulcerative Colitis for 2 years & no treatments were helping, so as a last resort, her colon was removed. She is fine now...18yo, away at college, & doing great!

I'm wishing you & your DH the best of luck on your trip!

 

[figmentswife]

So nice to hear another good Jpouch ending. We having been doing tons of research. We wil find out next week for sure if he has built up antibodies to the remicaide, but the dr is pretty sure it is no longer working.

 

[daisyduck123]

So nice to hear another good Jpouch ending. We having been doing tons of research. We wil find out next week for sure if he has built up antibodies to the remicaide, but the dr is pretty sure it is no longer working.

I'm so sorry for your DH. That is a shame that the remicaide does not seem to be of help any longer.

Remicade was the last treatment we tried before removing her colon. She had several rounds of it & it had no affect on her. If anything, DD worsened. Best of luck to you!

 

[figmentswife]

He is sorry too. It worked well for almost 2 years, then in October he started a flare that he can't get out of. The dr talked about trying Humara but he doesn't want to, he says it is going to get to the point he needs his colon removed anyways so he may as well go ahead and do it. I can't say he is super excited about the surgeries but he is excited at the thought of feeling better.

 

[Disneylover99]

My husband has had a colostomy and he rides all of the rides with no problem.

One piece of advice though... always bring some duct tape to the park in case you spring a leak!

Good luck!

 

[SashaFarce]

I don't have one, but both my mother and MIL have ileostomies. Hydration is super important, and I do think a scooter is the best idea - if you can, rent one offsite and get a canopy with it. Well worth the money. Extra supplies and a change of clothes just in case a leak springs - also good ideas. The only other thing I'd watch out for that immediately comes to mind is that the heat/humidity and movement (getting up and down when/if needing to transfer) can break the wafer seal easily so do be prepared for that.

 

[figmentswife]

Thank you for the ideas. These are all things we are keeping a list of for questions for the dr and nurses.

I think we are going to go ahead and plan on getting an ECV (offsite rental) and if we don't need it everyday that is ok. From the couple I have looked into it will only be around $180 to rent one so that is not bad.

Keep the ideas coming. I feel like the more we learn the better we will be prepared.

 

[Lisa71]

My Dad has an ileostomy and has since 1968. I grew up thinking dad's has those. Water and sports drinks that are not high in sugar and resting were all he needed. He plays hockey and did all the WDW rides without a problem.

 

[lookame]

I do not have an iliostomy however I have crohns disease and have been told if my current therapies don't work I'll be headed for a bag. With that said here are some tips and things I have learned.

First of possible carry an extra pair of clothes, sometimes you can't get a great deal on the bag or gas overfills the bag and causes a leak; carry extra supplies(extra bag, seals ect) and carry all medicine in their pill bottles. Keep all these items with you, not with first aid (nothing worse than needing a bag change and it's at first aid.)

Rest is key! Know where all bathrooms are just in case. If he feels hot and naucious then sit and people watch for a bit or go to a theater and catch a show.

Rides should be fine, any water rides heel need to tape the bag and seals for, and rides with lap belts will require some moving and adjusting the bag for.

Things to avoid when it comes to food is anything which irritates his system (for me it was grapes and wheat bread-by the third day at animal Kingdom I felt pretty sick and needed to rest for about three hours to get past the nausia) you can ask for special menu items which should help as well. Keep drinking water and have him snack if he feels hungry.

I realize most of my advice is geared toward people with active disease and not really for someone with removed intestine, however a great spot for info is crohnsforum.com. a lot of people there with experience with travel and colostomy/iliostomy.

 

[Jonell]

I agree with the above poster..I would advise your DH to carry extra clothes and an extra wafer and pouch. You never know when the wafer will leak. We learned this the hard way with my DH having to leave the park and go all the way back to the room to change his leaky appliance

 

[figmentswife]

Too funny both of you said take extra clothes. We talked about it this weekend and he decided what kind of bag he wanted to take into the parks. I will be getting him a Star Wars draw string bag (light weight, and Disneyish) He thinks he is NOT going to want am ECV, but has decided to not take it off the table completely.

He has been reading, Daily, the Ihaveuc.com forums and website. But I will tell him to check out the crohnsforum tonight.

We have an appt with a surgeon Thursday afternoon. We didn't want to wait for the test results (which should come this week) as it wants the surgery no matter what.

Another little hint we found was to wrap up in an Ace bandage for the rides. We will buy a few of them just for the trip.

 

[Jonell]

Too funny both of you said take extra clothes. We talked about it this weekend and he decided what kind of bag he wanted to take into the parks. I will be getting him a Star Wars draw string bag (light weight, and Disneyish) He thinks he is NOT going to want am ECV, but has decided to not take it off the table completely.

He has been reading, Daily, the Ihaveuc.com forums and website. But I will tell him to check out the crohnsforum tonight.

We have an appt with a surgeon Thursday afternoon. We didn't want to wait for the test results (which should come this week) as it wants the surgery no matter what.

Another little hint we found was to wrap up in an Ace bandage for the rides. We will buy a few of them just for the trip.

I would advise against an Ace wrap. Some ileostomys are very active especially within the first year after surgery and the pouch can fill very quickly. My DH's ileostomy has been know to fill up as often as every 15-20 mins in the summer months when he is drinking alot of fluids. If you restrict it then that can cause leaks. I would suggest an ostomy belt if he wants extra protection for it to stay in place. If you guys are visiting WDW within 6 months post-op he more than likely will need a scooter.

 

[figmentswife]

I would advise against an Ace wrap. Some ileostomys are very active especially within the first year after surgery and the pouch can fill very quickly. My DH's ileostomy has been know to fill up as often as every 15-20 mins in the summer months when he is drinking alot of fluids. If you restrict it then that can cause leaks. I would suggest an ostomy belt if he wants extra protection for it to stay in place. If you guys are visiting WDW within 6 months post-op he more than likely will need a scooter.

OH!!!!

We plan to get the belt also.