permanant Ileostomies

[mindy327]

Thinking of getting my DH a GAC card... He just had a perm Ileo placed 8 weeks ago and we WON our WDW trip... So this was not planned at all. Do most with Ileostomies get a GAC? Does it help with bag issues? Anyone with advice or experience?

 

[Forevryoung]

A close relative had a temporary one for 4 months before a reversal. By month 3, she was doing awesome and was feeling helathy. Honestly, I can't think of anything a GAC would have helped her with. The companion restrooms might be helpful (more room, sink right there...).

Everyone seems to have a different experience when it comes to ileostomies (depending on surgeon, complications, prior diagnosis...) What are your concerns?

 

[LilyWDW]

What accommodations would he need? That is what you would need to explain to Guest Services so they would have an idea if a GAC would help him or not.

 

[LockShockBarrel]

I truthfully can't think of anything the GAC would do for this situation.

You won't need an alternative entrance, you shouldn't need to have the walkways slowed to board rides or avoid stairs. It doesn't really do anything with the rides themselves...

He can go to the First Aid station for a cleaner quieter environment to change the bags if he's not comfortable in the public bathrooms, or if it's just taking a little extra time and privacy there's the companion bathrooms. You can usually try out anything that has a car where you need to be restrained prior to boarding them so if he's worried about how to situate the bag on them.

I'd say just do what you would do normally with a little more attention to anything that may jostle the bag (coasters or rough rides). Bring extra supplies, then add some more to that. My cousin has had a bag for the past 8 years and it doesn't really impact his day to day life except for let's call it "maitenence".

 

[Piper]

I don't think it would help either. Most rides are mainstreamed even in a WC and those that aren't often have a longer wait time for those in WCs. Sun issues occur mostly between rides (nothing Disney can do about that.) I think that first aid and companion restrooms should meet his needs unless there is something we don't know about him.

 

[mindy327]

Thanks for all of the replies... I guess I should have been a little more descriptive. DH has an EXTREME life threatening case of Ulcerative Colitis for 10 years and had to have his original surgery reversed with a permanant ileostomy. He just had this done recently and deals with extreme complications after 8 years dealing with chronic pain. He stamana is only about a 4 hour span and hes spent, and he gets dehydrated easily wich we are finding he uses the restroom as much as he was BEFORE the bag 20 times a day just to empty it. He got a GAC card before he had his surgery in November at Disneyland the last time we were their after we learned about them and it helped tremendously with not having to leave the lines. I was more interested in other with an ileostomy how their day went with one? Falling off/leakage with all of the walking and how much supplies to bring. And where do you get GAC cards at WDW?

 

[livndisney]

Thanks for all of the replies... I guess I should have been a little more descriptive. DH has an EXTREME life threatening case of Ulcerative Colitis for 10 years and had to have his original surgery reversed with a permanant ileostomy. He just had this done recently and deals with extreme complications after 8 years dealing with chronic pain. He stamana is only about a 4 hour span and hes spent, and he gets dehydrated easily wich we are finding he uses the restroom as much as he was BEFORE the bag 20 times a day just to empty it. He got a GAC card before he had his surgery in November at Disneyland the last time we were their after we learned about them and it helped tremendously with not having to leave the lines. I was more interested in other with an ileostomy how their day went with one? Falling off/leakage with all of the walking and how much supplies to bring. And where do you get GAC cards at WDW?

For stamina issues wdw advises to rent a wheelchair or ecv. What it sounds like is you want shorter wait times. As the gac is not intended to shorten wait times you may want to use a touring plan and fastpass.

 

[WheeledTraveler]

Disney's answer to stamina/energy issues is to rent a wheelchair or ECV (I'd suggest an ECV as being more useful to your DH). From looking at your signature, most of your experience is at DL, which is set up very differently from WDW. Most lines in WDW are mainstreamed so there's no alternate waiting area or entrance. On the few rides where there are alternate waiting areas, it can actually take longer to board if you use the alternate area than it would if you stood in the regular queue.

As far as getting in/out of lines, from what others have reported back here who have UC, Crohn's, or other similar conditions, they've just spoken to a cast member when they've had to leave the line and something has been arranged. Otherwise, I'd suggest pre-emptively emptying/using the restroom, using fast passes when possible, and planning in rest breaks. A GAC is not meant to shorten your wait (and he'd still have to walk through the entire line length if he doesn't have a wheelchair or ECV, some of which are up to 1/4 mile long so may cause more stamina issues). You may also do better looking at a touring plan that will give you an idea of what lines are going to be shortest when.

At WDW you get a GAC at Guest Services at whichever park you go to first (you can get one for your length of stay). You will need to be able to explain his needs clearly and they may say that there's nothing a GAC can do that will help. You may also want to check out the FAQ in the sticky on the top of this board. It has more information on GACs and things like dealing with stamina issues.

 

[Jonell]

Thanks for all of the replies... I guess I should have been a little more descriptive. DH has an EXTREME life threatening case of Ulcerative Colitis for 10 years and had to have his original surgery reversed with a permanant ileostomy. He just had this done recently and deals with extreme complications after 8 years dealing with chronic pain. He stamana is only about a 4 hour span and hes spent, and he gets dehydrated easily wich we are finding he uses the restroom as much as he was BEFORE the bag 20 times a day just to empty it. He got a GAC card before he had his surgery in November at Disneyland the last time we were their after we learned about them and it helped tremendously with not having to leave the lines. I was more interested in other with an ileostomy how their day went with one? Falling off/leakage with all of the walking and how much supplies to bring. And where do you get GAC cards at WDW?

I sent you a private message, but what you are explaining now is exactly what my DH,who had UC, is now dealing with with his ileostomy. Before we found out about the GAC there were many incidents involving leakages, because of his inability to leave the lines to empty his bag. Now the GAC allows him to enjoy our trips. My husband brings 10 appliances for our 7-8 day trips. He may not need to change it as often but it doesn't hurt to bring extras. My DH's MD also suggested that he take 4 immodium per day while at WDW to help slow down things. He also carried 1 appliance to the parks and an extra shirt in case of an accident. My Dh also has stamina issues and refused to get an ECV, so we usually are back at our resort by 1 pm so he can nap and get ready for dinner and maybe back to the parks. He is also using Eakin Cohesive seals now and it helps with leakages. I think it mainly trial and error. My DH has his ileostomy since 2004 and some of our trips before the GAC were very frustrating for him. Go to guest relations at the park entrances and have you DH explain his situation and I'm sure they can help you out. Don't forget about FP, and we usually visit when crowds are the lowest. The GAC is not about shortening wait times for us, but allowing my DH to wait in a less crowded area and to leave the line for the restroom if needed. Squeezing out of lines past 100 people with a full osotomy bag can lead to a disaster. UC patients are also immunosupressed so don't forget hand sanitizers. I hope this helps

 

[Jonell]

He may want to think about also using an ostomy belt. As long as he doesn't allow his pouch to overfill then the seal should stay intact. If you are visiting during the summer months he will need to change the wafer more often then normal.

 

[Lisa71]

My Dad has had an ileostomy since 1966 (yes, before I was born). He had UC and has never needed a GAC. It does take time to get to know your body, your stoma, and find what works for you. He may need a GAC for stamina, but my Dad plays Ice Hockey, and has a full normal life. You would never know. He does empty the bag if we are going to be in a long line, and takes extra supplies with him. We have been to DL a billion times and no issues. I cannot think of why you would need a GAC, but think about what works for you.

 

[Lisa71]

I wanted to add that the United Ostomy Association has been a lot of help to my Dad over the years and great for resources and what to expect, etc. He also appreciated the support when we was new with his stoma. I thought all boys had one when I was little because my Dad did.

 

[sukhakuli]

My father has stage 4 cancer, and we took him to WDW last Thanksgiving. He has had an ileostomy for a few years (colon cancer, metastasized to his liver and heart. He has no colon anymore). We did not get a GAC for him. He got an ECV on some days. He is really embarrassed to ride in an ECV, so he didn't unless he had to. Even with the ECV his days were short, and he had to rest a lot, and he refused to sit in handicapped spots for shows and parades. He didn't want any special treatment, and wanted to get along like everyone else as much as possible.

I really don't see what a GAC is going to do for your dh. My dad did always make sure he knew where the bathrooms were every place we went, and often we were late for things because taking care of his bag takes time, so build in extra time going places. But there shouldn't be any reason your dh can't tour the parks like everyone else. With my dad, it wasn't the bag that was slowing him down, but cancer and chemo.

 

[ToddyLu]

I would also suggest bringing a few more wafers to Florida due to the humidity. He is probably already in an extended wear wafer which is usually the product used for ileostomy and urostomies. I live on the Gulf Coast and I have noticed that the Hollister brand does not hold up as well as some of the others for certain ostomates. So if he is using Hollister make sure he is in an extended wear wafer and you maybe could get a slightly larger pouch to collect more output. Many times those ostomates do better in our humidity in a Convatec Durahesive wafer. I also recommend a belt and perhaps an ace wrap ( not too tight) to give a sense of added security. He also needs to drink plenty of fluids as you are well aware. I would also watch his diet as sometimes eating things you are not used to can cause a problem. If he is using a pouch without a fabric lining against his skin you may want to try this--get some old t-shirts and cut off the sleeves--you can slip the pouch down in the sleeve and make a pouch cover so the plastic will not irritate his skin in the humidity. I know Arizona has heat..but it is the humidity over here that changes things.

If you are not using a stoma powder currently you may want a small bottle just in case he sweats and you need a drier surface for better wear time.

Congratulations on winning a trip and i hope you guys have a terrific time.

Sorry I have no suggestions for the GAC card.

 

[dclfun]

I have stage 4 colon cancer and a permanent colostomy. I also have extreme pain from the prior surgery and no chance for reversal. There is really nothing a GAC could do for me, but I would suggest renting an ECV or manual wheelchair. The less strenuous movements he makes during the trip, the less the bowel is active and when it's "calmer" then there is less chance of emptying, overfilling, and leaking. I see no problem in asking a CM to leave the line and return if that becomes necessary- he shouldn't have to wait all over again. Using a rollator walker might also be helpful so he could sit if he tires or becomes overheated. I now use a different product after trying various samples with my medical company and nurse. The Eakin rings though, reinforced with the adhesive and powder do give a good seal and protection. If I can think of any other suggestions, I'll be sure to pass them along. I'm glad he's had the surgery though and hope he continues to improve. Drinking lots of water should help as well as snacking and avoiding unfamiliar foods. I wish your family a wonderful trip and congratulations on winning it!