Crohn's sufferes still enjoy the park

[Freddie Beach Shelly]

Your answers definitely helped!!! I 'try' to be good all year-long, but when I'm at Disney...I"M BAD!!! So I've never had to consider looking for non-fried food, etc. I want DBF's first trip to be a positive one, so I will definitely have to re-think food choices while there...so your answers are really going to help us in that respect. Thank you!

Anyone else? The more information and tips I get, the better.

 

[Cmbar]

Wow what a topic that I so much wish I could give you all the answers. I have had Crohn's for 11 years and have been to Disney many times since. I have never had a flare there. I swear Disney is magical for me and my DH is convinced it is my way of trying to talk him into moving there!

Seriously though, all of us have great advice in how we handle it, but one thing about this disease is it definitely affects everyone differently. If I were to eat Rice on my diet I would be in the hospital the next day. I am allergic to rice and tomatoes - oh not the severe allergy like a peanut allergy. But the more subtual allergy- if I eat it once -maybe do ok, if I eat it twice in a few days - definitely going to have a flare. I found this out by a blood test after suffering with Crohns for too long and wanting desperately to understand why from day to day it changes. http://www.gdx.net/home/assessments/allergy/ this is the test I took if you are interested. Not sure if they have something similar in Canada. My wonderful Crohn's doctor just smiles when I say I know what triggers my flares, but let him smile... I have tested it too many times and I am the one suffering each time. The doctors have no clue what causes this yucky disease so essentially each of us have to be our own doctor.

By the way, I am so sorry to hear that you don't have a doctor? I don't really understand how that can be. I thought Canada had a national health plan and everyone gets care all the time. At least that is what they are telling us in the US so we can get our national health care plan. Can you enlighten us why your DBF wouldn't have a doctor or meds yet? That is just crazy and I feel terrible that he can't get relief.

Meds that have worked for me - Remicade it was a miracle for me and put me into remission many times. Got too used to it and decided I didn't want to do the maintenance rounds and then low and behold I developed an immunity to the drug and my throat started to swell. Not good. Next will be Humira which is a doing great for Crohn's and two new drugs are just being released with great promise. But for flares I always go with my trusty Prednisone. And yes this is the drug that will make you have mood swings with LONG term use or at high doses. But for a trip to DW I would do a Prednisone Push in which I would start a few days before I went and start with a Higher dose (40 mg) and wean down each day until off completely. My doc started me doing that one year right before we went to Disney and it was a great trip because I did not have any flares and the Prednisone makes your really hungry and everything tastes good! Of course you would need a doctor to allow this and prescribe, but it always works for me to get me through this kind of trip.

Last year I had flares prior to a trip. Did a Predsinone push and went to Disney. NO PROBLEMS at all! Less than one week later I was in the hospital getting the intestine removed from a blockage.(No coinsidence that I had had Rice the night before at a Chinese restr. I just wanted a little -Stupid me!) The rice caused a inflamation and by this time the disease has caused enough scar tissue to creat the blockage. The disease just does damage the longer you have it and especially if you go without treating it or stopping the triggers. Please encourage you DBF to get some kind of treatment and if he can't get a Doctor yet, he most certainly can do a food journal and determine what trigger for him. It's not fun and not easy, but so worth it for me. I can eat lots of things, just stay away from my triggers.

I'm currently not on any medication unless I have a flare up then will go on Prednisone until I'm back on track. I've had Crohn's for almost 20 years. The biggest thing that helped me in the beginning was to keep a food journal. Write everything put in your mouth down along with your reaction that day. After a couple weeks look at it and see if you can spot any offending foods. I've found that what bothers one person doesn't bother the next so you really need to find what will work for the individual. Keep using the journal I used mine for over a year. Some foods I'm ok if I have it one day but two days in a row will cause a problem. It's all trial and error. Hope he finds a doctor soon.

I totally second this! Don't believe the doctors when they say it isn't food that is part of the "what causes" crohns. Yes Stress will flare you up bad, but to think that what we put into our gut doesn't somehow cause our gut to react against it to me is just crazy. Something triggers and for some of us it can be an allergy. If you are able at least get a skin allergy test to some common foods. And determine if there is one food that your DBF eat a lot of. Just a suggestion!


Oh and one poster mentioned a book and it might have been "breaking the Viscous Cycle" by Elaine Gottschall. It is a popular book about eating the right stuff for this disease. Now I agree with most of the book, but I also believe that alot of people who have success on this book, most likely have removed from their diet a trigger food. My sister and I both have Crohns and we are Italian and it used to be a joke that we would fight over who got the to the bathroom first after Sunday Sauce. Well now I know why since I have an allergy to tomatoes. We ate Tomato Sauce often 3 times a week growing up.


OK I know this has been long, Sorry. I wish you and your DBF a wonderful HEALTHY trip and bless you for being such a good girlfriend. This disease does not go away and I often think my husband is a saint having to deal with it right along with me! Hope all these suggestions from the great people on the DIS help you to have a magical vacation! I totally understand your DBF urge to not eat while away. Oh and does immodium work for him to stop or relieve the diahreah. OK. I am done now!!!

 

[poppinspal]

I won't tell you about types of medicines or anything but I wanted to say my brother has Crohns and it's pretty severe. He goes for an iv every other month because the medicine they give him in the iv is the only type that helps him. We went to Disney two days after he was diagnosed so not enough time for any medicine to kick in. He was told to avoid lactose products, alcohol and cheese. We did table service and counter service meals without any problems. I think he enjoyed the table service meals best because at times it was easier for them to substitute other things for him or cook something a little differently for him.

Aside from the fact that he was down almost 30 pounds(and he's a small guy to start with) he was great on the trip. Only one day did he want to leave the parks earlier then the rest of us. He kept up even on New Years eve so it's all about eating carefully and not worrying about taking rests. Oh and my brother and I also became very familiar with most the restrooms in WDW, you'll learn where the good ones are.

 

[Cameo]

I am newly diagnosed with Crohn's Disease. Although I have had IBS problems for years the symptoms have amped up and I'm now officially dealing with more problems. We travel to Disney often and part of the fun has always been eating out. Now I am trying to figure out how I will have to adjust to not eating just whatever I want when I'm on vacation.

We travel to WDW often and this will be my first trip after a Crohn's diagnosis. I am even worried about just making the plans, hoping that I don't get sick before I go. Traveling does cause me stress - getting everything in line and getting there is stressful for me so I hope I don't flare. Once there I think the exercise and frequent snacks we eat actually makes me feel better.

I have found a great resource in the forums on a website called www.healingwell.com. Many CD sufferers will answer all kinds of questions on the Chrohn's Disease board. Maybe your DBF would find some information there.

I do agree that not eating is not good. It seems to make me feel more dizzy and fatigued. I have discovered also that I need to take my multivitamin every day or I have a serious fatigue session in the mid-afternoon. This will be our first trip where the kids no longer need afternoon naps, but now I think that I will need to be taking one!!

I'm trying something now that I read about as far as making sure I have some protein before I eat any sugar. Many snacks at WDW seem to be sugar based so I'm not sure how I will address that yet, but I may have to stick to the turkey leg as a snack from now on!

 

[pampam]

I too, have crohns. I was on Pentasa, and plain miserable. Pentassa helped, but I suffered with all the symptoms and problems. My dr. was talking surgery, but I really didn't want that. It seemed that my symptoms were diet related, but I couldn't figure out what was causing the problem. Everything bothered me. I heard about the Specific carbohydrate Diet, but kept putting it off, because it seemed too restrictive. Things got worse. I relented and put myself on the SCD. Within 5 days I felt wonderful, and haven't looked back. I heartily recomend it to those serious enough to follow it carefully. That was 2 years ago. I have been medicine free for 1 year now, and feel great. I was able to keep on this diet while at WDW, and had excellent meals both counter and table, with only 1 problem meal, and it was looked after by the manager, so it wasn't really a problem. My last colonoscopy showed no crohns in the large intestine at all. I feel cured, but am still on the diet, because it is a healthy way to eat. We eat out at least once a week, with no problems. I just bring my own ketchup, salad dressing or what ever I think I'll need.

 

[BeckyScott]

Not Crohn's, but Ulcerative Colitis, which isn't too far different.

I've found meds that work for me and also adapted (sort of) the SCD. Our youngest DS is gluten/casein free, so I follow that with him and a little more for me.

However, we did go to a different (non-Disney) park when I was still having a lot of problems, before I was diagnosed and medicated. I had HUGE concerns about spending the whole day in the bathroom, or having a problem waiting in lines or needing to "go" when I was on a ride and nothing to be done. If he is anything like I was, you got about 15 seconds, max, so the idea of going to an unfamiliar place really really worried me.

First off, the stress factor did make a major difference. I didn't have nearly so many problems that day, and coincidentally the vacation day was just DH & I, no kids. Go figure. And we didn't try to "commando" anything.

Secondly, what I did, was every time we passed a restroom, I went in, just to make sure, and I also had a map with the restrooms marked. I visited every restroom in the park at least once. It did do something psychological, I believe. I felt like, okay, I just went, or tried to go, all is well and I should be okay for at least a half hour. If you are doing Disney and get FastPasses, he will know the wait won't be long, and all the rides have a bail-out spot where he can leave if he needs to. I also, personally, wore a maxi-pad that day, I don't know really what good it would have done, but it made me feel better somehow. I don't know how you'd convince a guy to do that, though...

 

[Christine9125]

My DH also has Crohn's and has been on remicade for over 10 years now, he was in the study for it. We have tried several other studies, but nothing has worked so we are sticking with Remicade. His last "check up" the doc told him if he did not know what was wrong with him he would not have known he had Crohns.

We go every 3 years and have not had any problems. Just watches what he eats

 

[Captain's Wife]

The Captain has had Crohns for 16 years now. He's been on disability because of it for 7 years. Our repeated trips to WDW are in large part because it's one of the few places where we can vacation that it isn't as big an issue. After years of various meds and their accompanying side effects, he can't endure lots of walking, etc. At WDW, he uses a wheelchair or scooter from Day One, but it doesn't interfere with his ability to enjoy everything the parks have to offer.

A few tips:

Study the park maps upon arrival so you always know where the nearest restroom is. Same with inside restaurants. Much anxiety can be diminished if you aren't worrying about knowing WHERE to go if you HAVE to go.

Food triggers can be unpredictable, I know. And everyone is different. DH uses Immodium a lot, and after years with this knows when and how much to take to cut down on problems.

Don't push him to eat, and consider sharing meals. Many people will psychologically convince themselves to finish a meal even if they know they shouldn't or don't feel like it, especially if they're paying a great deal for it. Occasional grazing or snacking may be better than scheduled sit down meals.

People with Crohns dehydrate quickly. Even though it might mean more restroom stops, lots of water is as important as anything else, especially in the heat. Their blood sugar also goes out of whack quickly - recognize that temper flares, agitation, etc. could be because of that, and also because of the amount of energy it takes to cope with any pain.

If joint pain is an issue, you might want to approach rides that clonk, jerk and bump with caution. The park guides usually indicate what these rides might be. DH is down to one coaster a day, so he chooses carefully. We also plan the day accordingly. The Kilimanjaro Safaris are pretty hard on him, and Thunder Mountain has become out of the question.

Living with Crohns requires flexibility more than anything else. (you sound like you're learning that already) Having a mindset that allows for sudden changes in plan helps immensely. If the day goes bad, or you have to go backwards to use a restroom, or you miss "the next show" because of a restroom stop, learn to be okay with that. Maybe planning on returning to your resort midday for lunch and a break so that you're in your room for a couple of hours after a meal might help.

Hope this helps!

Shelley

 

[chefmb]

Just resurrected this thread after being referred to the DISability board after asking a similar question. Got lots of information here. Thanks to all for sharing. Don't even know if the people who posted here are still on the DISboards, but I'm now going to look up the book mentioned here and the specific carb diet. Also going to look up the Pentasa meds--that's one my doctor hasn't mentioned. Maybe it's been replaced by Humira or Remicade. Those are on my list of next possible steps since I have found that Asocol, Apriso, and Prednisone only make things worse for me. Trying Entocort now--not any better, but will keep at it for a little bit. Will go back to keeping a food journal--did it for awhile, but got really busy and fell out of the habit. Anyway, thanks again everyone!

 

[Cmbar]

Just resurrected this thread after being referred to the DISability board after asking a similar question. Got lots of information here. Thanks to all for sharing. Don't even know if the people who posted here are still on the DISboards, but I'm now going to look up the book mentioned here and the specific carb diet. Also going to look up the Pentasa meds--that's one my doctor hasn't mentioned. Maybe it's been replaced by Humira or Remicade. Those are on my list of next possible steps since I have found that Asocol, Apriso, and Prednisone only make things worse for me. Trying Entocort now--not any better, but will keep at it for a little bit. Will go back to keeping a food journal--did it for awhile, but got really busy and fell out of the habit. Anyway, thanks again everyone!

Remicade and Humira are TNF inhibitors and way different than Pentasa. Depending on what kinds of Crohn's you have there is another option called LDN or Low Dose Naltrexone. If you are near Baltimore, there is a doctor at Hopkins that prescribes this treatment. Just let me know if you want more information! Good luck in managing your disease. I just was told by the specialist that my case is just to serious to not be on the Humira regiment so now I have to do more research on that. This disease is yucky!

 

[snorris49]

Thank you for resurrecting this thread! I've been on the Disboards for years and didn't ever read it! (or don't remember). I've been diagnosed with Crohn's disease for about 4 years now, and it's been a definite up and down managing the disease. I was on Entecort originally and have been on Pentasa for about a year and 1/2 now. I see better results with the Pentasa than Entecort. I looked at the SCD early on in the diagnosis and found that a gluten free/dairy free diet worked best for me. (I react violently to gluten--to the point my doc thought I was celiac on top of crohn's--and dairy gives me a histamine reaction) I love going to Disney because I'm really relaxed there (which is always good for my stress levels and crohn's), but I've had to learn to slow down and take more breaks and stay hydrated.

Thanks again for sharing this. What great information!

 

[spiritsim]

Hi again,
my food at disney - well at counter service I stick to chicken (grilled)or fish, a hamberger is fine once in a while, but not everyday. Red meat doesn't bother me all the time, so I will try a some if I'm feeling okay. I stay away from salads (really bad for me), and any raw veggies. Nothing high in fiber (that kills me) at a buffet I try to stick with chicken or fish - and nothing spicy - if we get BBQ I ask for the sauce on the side and at some table service places I was able to get a non spicy version of a couple of things. Several of the table service places even had the chef come out and talk with me. Disney is very accomidating when it comes to diet restrictions...

I agree with the OP - don't NOT eat all day - take the ensure and stick to liquids if you have a flare - Good Luck

I just started reading this thread. I have had Crohns for about 3 years. Can't handle the meds at all, light weight in any meds I get over medicated easy. I also have trouble with high fibers foods and salads....which is what my Dr. keeps telling me to eat...lot's of fiber ,but it kills my tummy. I am trying to keep track of foods that bother me but one day I can eat it, next time I eat it I am in the bathroom all day. So still learning to control it. We are going to WDW for the first time in Sept. worried I will be standing in line and suddenly need the rest room. Will they let me get out of line,run to rest room and then rejoin my family inline? [What can I do if not??ty

 

[Cmbar]

Hi there. So sorry that you aren't able to take meds to help your Crohns. We crohnies often just learn to live with our yucky disease but if you aren't finding some remission relief please seek out a new doctor who can possibly look at your case in a new way. For me the only thing that put my disease in remission was Remicade and then when I got off of that because I was tired of doing it(dumb reason) I had to go on Humira. The biologics work but is always scary to be on powerful drugs.

I wanted to mention that in order to get my veggies without having to kill my stomach I drink smoothies. They seems to be easy on the digestive track and you still get the fiber and nutrients. Just google green smoothies and you will find a ton of recipes. I prefer the ones with both fruit and veggies. Costco had some great large bags of frozen fruits that make a quick smoothie added to some spinach or kale. If I need more sweet I will use a Stevia packet because Splenda is known to really hurt the stomach. Or you can use honey if that doesn't bother you.


For WDW, I would simply explain to the people right behind you that you need to leave and is it ok if you family saves your spot. Most people are understanding and considerate.

I hope you have a good trip but most of all I hope your Crohns goes into remission!!!

 

[lanejudy]

It is very hard -- sometimes impossible -- to regain position or join others in line. Some of those you need to squeeze past may not have been in the line when you first left it, and may not be willing to allow you to pass.

I suggest that if you find yourself in a situation needing to leave the line, that you or a family member speak with the CM before leaving. Explain the situation. See if they can offer an alternative when you return. It may not always help, but sometimes.

You can also stop at Guest Relations to discuss your needs. They may offer a DAS, which is explained in the sticky WDW Disability Access Service Card near the top of this forum. Obtaining the previous GAC card for bathroom issues was hit-or-miss, but I have read people obtained a DAS. Also, try to make sure you stop by the restroom frequently as you tour the park. I know Crohn's symptoms come on suddenly, but it may help.

Enjoy your vacation!

 

[AineDeBruggh]

Although your other half has no family doctor assigned to him, a "walk in" or "after hours" clinic should be able to refer him to a Gastroenterologist if your DBF has been diagnosed with Crohn's. I do understand that the struggle to find a doctor who is accepting patients is difficult in Canada (I sat on a wait-list for 4 years before getting a family doctor, only to move to another city and have to go through it all again).

My mother has Crohn's since she was 21. She's almost 60 now. The meds may have different names here than they do in the USA, or have different types of meds entirely. I am familiar with the Prednisone name. That's a steroid-type of drug that treats the symptoms of flare-ups and it might be worth speaking to either a walk-in clinic or getting a referral to a Gastro-specialist to talk about the option of using that to make your daily living more comfortable.

Speaking as a nutritionist, I can say that Crohn's has many different triggers and is not as well understood as other conditions. The food journal would normally be your first step in discovering what your personal triggers are. If you are experiencing too many symptoms, too often to sort one out from another, it may be a good idea to work "in reverse" by adopting a step-by-step system of clearing yourself back to a few simple, easily digested foods and once your symptoms clear, introducing new foods (one at a time and very slowly) and recording the effects (this is similar to what happens post-bariatric surgery when you have to slowly introduce more complex food types). I urge you to speak with a gastro-specialist or at the very least a Registered Dietician in your area. Your walk-in clinic should be able to point you to the right people.

For the USA members who are curious. Canada has a public health care plan, yes. There are often too few doctors for the number of people in a given area though which results in a wait-list. There are walk-in-style clinics (which are supported by several doctors from the surrounding area) which caters to those who don't have a dedicated family MD of their own or whose MD is currently closed/unavailable. This problem of not having enough doctors is especially harsh as more doctors retire than graduate from school each year.

 

[01spirit750]

Crohns is a nasty bugger.

Had it for 20+ years, almost died once.


When I was young and got it, the family Dr told me it was all in my head and I needed to deal with it. I had all the classic Crohns (or Chromes as my mom calls it) signs, severe weight loss, cramping, non stop bathroom. I also become severely anemic (pasty white).

So I switched Drs. New Dr said lets try prednisone and see what happens. In a week I started feeling better. Mystery solved.

I remember years later I had just left my Dr's office where they had some blood drawn for tests. He called me an hour later asking me to goto a local lab and have more blood drawn because he thinks my first blood work was wrong. He called me back a few minutes later and told me to forget about the 2nd blood work and go directly to the hospital. I was going to get a blood transfusion.

I used to be on remicade but my heart rate would drop severely. Twice they stopped the infusion and brought in a portable EKG machine and called my Dr.

 

[spiritsim]

Just have to say Disney is the bomb!! Let them know on my dinning reservations about my crohns and lactos intolerance. At every meal the chief would come to our table and ask about my food issues. They would walk me around buffets and go over what I should avoid then ask if there was something I wanted that I thought might upset my stomach. Or over the menu with me at reg places. They would prepare me special foods and desserts as needed I felt like a queen. They are so nice and understanding about it! I never felt I was missing out on anything it was perfect and no problems my whole trip! I would recommend every one with food issues call the dinning people and let them know before your trip, they will take great care of you!!!!