Just diagnosed with IBS, debating cancelling my trip to WDW.

[Alexsandra]

First let me introduce myself, I am a 35 year old mom married to a wonderful husband. I am blessed with two beautiful boys 3 and 6.

My husband and I have planned to visit WDW for our 10th year anniversary this September without the kids (for the first time ever). I was really looking forward to trying all new restaurants, dining at signature restaurants and drinking around the "world".

I was not feeling well for a while now (since Christmas) with stomach pains, bloating, acid reflux and other gut related symptoms. At first my doc said I had an ulcer. I was hoping it would resolve itself before my trip with ulcer friendly foods and good overall diet. I was also referred to a gastroenterologist. Since I was not feeling better after a treatment of med for ulcers, I went to see the gatro who did an ultra sound of my abdomen and when it came out all good he told me to just wait it out to see if I felt better with time. But my symptoms seemed to just be getting worse with time and I started to fell like I was on a roller coster of stomach pain. I would go from a week of feeling great followed by a week of intense pain and bloating. So I went back to see the gastro last week, when he finally told me the bad news, I had irritable bowels, and that the food I was eating was hurting me. He put me on a special restrictive diet (called low FODMAP diet) where I have to cut out lactose, gluten, a whole bunch of fruits and vegetables, honey and other forms of sugar and to top it off NO onions and garlic (not even powder form!)
He told me once I cut out all these foods and start feeling better that I reintroduce one category of food at a time to see if I am sensitive to them so that I could avoid them. The swelling of my abdomen seemed to have gone but I have been having such bad reflux since I started this diet that he just prescribed more meds today to get rid of these symptoms (never ends!)

Now, I know that some have it way worse than me, and that I should not complain. I am so lucky to be surrounded by a loving family and have healthy kids. However I cannot help feeling discouraged that I can't seem to find relief from the constant pain. And the truth is I am really disappointed that I will not be able to enjoy all my favourite foods at Disney
Now I just feel like I should just cancel the whole trip and reschedule. My husband thinks going to DIsney will relax me and that we will just have fun anyway but I can't see myself not having tonga toast or a mickey ice cream bar or school bread or any alcohol during my trip. PLus I reserved V&A for our anniversary dinner which now I think I will cancel. AT first I told my husband I will just be a little bad on this trip and cheat but I might be in pain the rest of the time there so is it worth it!? I am just so confused and overwhelmed right now.
Does any one have any advise or experience with IBS at WDW? Please share.
I guess I am just looking for a little moral support since I seem in need of hugs and positive thinking which I am lacking right now.
Thanks

 

[ibcrazie4dizney]

have not been diagnosed with ibs. but I have stomach "issues", along with other stuff. I find that going somewhere like Disney takes my mind off of not feeling well, and I either don't have the symptoms or don't notice them as much. I love the ocean and boardwalk. I was feeling very bad last week and my dh drove me to the boardwalk. as crazy as it sounds, I had a nice relaxing, almost symptom-free time. this week I have been in the house a lot, guess I am harping on symptoms and they do seem more bothersome. I hope you go and have a nice relaxing time. Disney seems good with special diets also, may not be quite as good as the real thing, but hey, you are in Disney and its better than being at home!

 

[geek+nerd]

I spent eleven days at Disney. I am wheat, soy and dairy free as well as low FODMAP (I don't have IBS, but my GI has me on the diet to help with severe nausea and vomiting). I ate soooooooo well during our trip.

Make sure to contact special diets before your trip and note your needs on your ADRs. Most likely, chefs will have to make you something special off the menu, but they will take good care of you. Fructans (HFCS, honey, agave, onion, garlic, apples, etc) are my biggest triggers. Tomato products also give me symptoms.

Feel free to PM me if you have any questions!

 

[MEK]

Are you taking a probiotic?

If you are not, please PLEASE PLEASE try Align. Get a 30 pill supply at your local pharmacy and just try it. I was prescribed this by a gastroenterologist several years ago. It completely changed my life. I had bad IBS symptoms, left upper quadrant pain, and gas. My GI tract was a mess.

A lot of your symptoms may improve once your intestinal flora is better balanced. Align is not inexpensive, but I have tried others and they don't work as well as this.

What do you have to lose and it may relieve your symptoms enough that you can carry on with your trip.

Also - I want to add or ask - have you had an endoscopy? If you have been having pain, heartburn symptoms since December this would definitely be indicated. Please speak with you GI doctor about this. (BTW - I am a nurse practitioner and an endoscopy seems very appropriate to me).

 

[jmartinez1895]

Please don't cancel your trip. Disney is one of the most accommodating places for people with dietary issues. Be sure to contact special diets and let them know and speak to the chefs at each place. I hope that you go and that a little pixie dust will lift your spirit.

 

[Alexsandra]

I spent eleven days at Disney. I am wheat, soy and dairy free as well as low FODMAP (I don't have IBS, but my GI has me on the diet to help with severe nausea and vomiting). I ate soooooooo well during our trip.

Make sure to contact special diets before your trip and note your needs on your ADRs. Most likely, chefs will have to make you something special off the menu, but they will take good care of you. Fructans (HFCS, honey, agave, onion, garlic, apples, etc) are my biggest triggers. Tomato products also give me symptoms.

Feel free to PM me if you have any questions!

Thank you for the info, it really gives me hope.

 

[crashbb]

I don't have any experience, but FODMAP sounded familiar. There was a recent thread about someone on that diet at WDW. It may help...

http://www.disboards.com/showthread.php?t=3141413&highlight=fodmap

 

[Alexsandra]

Are you taking a probiotic?

If you are not, please PLEASE PLEASE try Align. Get a 30 pill supply at your local pharmacy and just try it. I was prescribed this by a gastroenterologist several years ago. It completely changed my life. I had bad IBS symptoms, left upper quadrant pain, and gas. My GI tract was a mess.

A lot of your symptoms may improve once your intestinal flora is better balanced. Align is not inexpensive, but I have tried others and they don't work as well as this.

What do you have to lose and it may relieve your symptoms enough that you can carry on with your trip.

Also - I want to add or ask - have you had an endoscopy? If you have been having pain, heartburn symptoms since December this would definitely be indicated. Please speak with you GI doctor about this. (BTW - I am a nurse practitioner and an endoscopy seems very appropriate to me).

I was just prescribed align from my doc. Starting to take them tomorrow.

 

[disfan07]

I personally would not cancel.

I don't have IBS but I have a GI/allergic condition called eosinophilic gastroenteritis. It has many of the same symptoms as IBS plus a few other symptoms.

In addition, I have 16 food allergies ranging from mild to anaphylaxis. In addition, even the mild allergens set of a gastroenteritis flare for me so it's a double whammy.

We just went in June and I ate SO well. I had some absolutely amazing meals. Most of the time, they brought me more food than I could eat!

One thing I did was to print out a list of my allergies and I brought enough copies for each meal and I would hand it to the chef or manager at all meals and they really appreciated it.

 

[Alexsandra]

Are you taking a probiotic?

If you are not, please PLEASE PLEASE try Align. Get a 30 pill supply at your local pharmacy and just try it. I was prescribed this by a gastroenterologist several years ago. It completely changed my life. I had bad IBS symptoms, left upper quadrant pain, and gas. My GI tract was a mess.

A lot of your symptoms may improve once your intestinal flora is better balanced. Align is not inexpensive, but I have tried others and they don't work as well as this.

What do you have to lose and it may relieve your symptoms enough that you can carry on with your trip.

Also - I want to add or ask - have you had an endoscopy? If you have been having pain, heartburn symptoms since December this would definitely be indicated. Please speak with you GI doctor about this. (BTW - I am a nurse practitioner and an endoscopy seems very appropriate to me).

I forgot to answer your question. No he did not do an endoscopy. I feel like all the doctors are doing are guessing. The gastro is basing his diagnosis on my symptoms and a physical exam where i jumped sky high when he touched by abdomen. Unfortunately I am leaving monday on a business trip for a week. When i get back I am going to try to see if I can find another doctor so I can get a second opinion. But for now I will continue following the fodmap diet and take these PPIs (Dexilant) for my Acid reflux.

I am so glad to hear that Align really helps. I tried other probiotics since December and they really did nothing to help.

 

[disfan07]

I forgot to answer your question. No he did not do an endoscopy. I feel like all the doctors are doing are guessing. The gastro is basing his diagnosis on my symptoms and a physical exam where i jumped sky high when he touched by abdomen. Unfortunately I am leaving monday on a business trip for a week. When i get back I am going to try to see if I can find another doctor so I can get a second opinion. But for now I will continue following the fodmap diet and take these PPIs (Dexilant) for my Acid reflux.

I am so glad to hear that Align really helps. I tried other probiotics since December and they really did nothing to help.

I'm very surprised that he did not do an endoscopy. I would definitely get a second opinion. An endoscopy was the first thing I had done. I've had 3 over the past 2 years along with some other testing.

I am on the other side of coin with align. It did not work for me at all. I was on it for 6 months before we gave up on it. I have yet to find a safe probiotic that works for me.

 

[Alexsandra]

I personally would not cancel.

I don't have IBS but I have a GI/allergic condition called eosinophilic gastroenteritis. It has many of the same symptoms as IBS plus a few other symptoms.

In addition, I have 16 food allergies ranging from mild to anaphylaxis. In addition, even the mild allergens set of a gastroenteritis flare for me so it's a double whammy.

We just went in June and I ate SO well. I had some absolutely amazing meals. Most of the time, they brought me more food than I could eat!

One thing I did was to print out a list of my allergies and I brought enough copies for each meal and I would hand it to the chef or manager at all meals and they really appreciated it.

Wow 16 food allergies, that is so rough. I have severe food allergies to anis seed and all cold cuts and processed meats. Plus with your gastric problems it sound like a challenge but if you could handle all that a wdw, I guess it means that I could for sure.thank you for sharing

 

[disfan07]

Wow 16 food allergies, that is so rough. I have severe food allergies to anis seed and all cold cuts and processed meats. Plus with your gastric problems it sound like a challenge but if you could handle all that a wdw, I guess it means that I could for sure.thank you for sharing

Glad I could help. I completely understand the initial feelings of wanting to cancel because of GI/food related issues and I came close to canceling our last trip a few times but I'm so glad I didn't. Disney is just so above and beyond when it comes to food allergies and accomodations.

Hope you have a great trip.

 

[Alexsandra]

I guess I am just mourning over the foods I used to eat. I Need time to embrace my new diet. I have trouble accepting that my wdw trip might just be different than before. I guess there is no place better than wdw to help me cheer up. I am also doubting my doctor who seems to just have diagnosed me with Ibs without having really explored deeper. That has got me down, 'cause at this point, I just want answers and I want to stop suffering! What is frustrating is that I am a girl who always ate well, exercised and kept fit. I seemed to have gotten several infections last year where I had to take a couple of rounds of antibiotics and I think it disturbed my intestinal flora. Plus i know stress is related to the gut but the more i suffer the more nervous and obsessed I become about it and I think it makes me feel more ill. It is a vicious circle.

 

[geek+nerd]

If you are not convinced this is your diagnosis, get a second opinion. You know your body better than any doctor. Someone above posted a link to my in-progress food report from our trip. In the first post, I go into some detail about my journey with a diagnosis. It's been a struggle for about a year now, and I STILL don't technically have a diagnosis.

My GI initially diagnosed me as having gastroparesis, a miserable condition of digestive tract paralysis, brought on by a virus (or so she surmised). I was on the gastroparesis diet with a little bit of initial relief of symptoms, but then that relief stopped.

The wheat, soy and dairy free plus low FODMAP diet has made a world of difference for me. I am pretty much asymptomatic unless I screw up. At first, I was concerned about feeling deprived, but I feel so much better on this diet that I'm not tempted to "cheat"; I know what will happen if I do, and I'm not willing to spend two or more days with severe nausea and vomiting. I have, however, made some stupid mistakes because of assuming something was ok. My advice: ALWAYS check labels and ask about ingredients.

It was hard to not have a Mickey bar. It was hard to not have a bite of my husband's cupcake. But I still had a great time and accepted that this is how I do Disney now. There's a lot more than food!

You might want to check into getting a grocery delivery of safe foods and snacks for you that you can take with you. We had a delivery of stuff including Enjoy Life crunchy chocolate chip cookies (all the crunchy ones except for the honey vanilla are low FODMAP; all the soft ones are high FODMAP because of the date paste) and Enjoy Life dark chocolate bars as well as some Udi's double chocolate muffins. That way, I didn't have to sit and stare at my husband as he enjoyed a treat, but I got to enjoy something as well.

I really recommend downloading an app for your phone from Monash University in Australia. It's where the low FODMAP diet began. It's $9.99, but all the profits go toward research. It's been a huge help to me. Pretty much, you type in a food and it comes up with a red, yellow or green traffic light symbol and an explanation of which FODMAP is contained in the food.

Good luck!

 

[disfan07]

I guess I am just mourning over the foods I used to eat. I Need time to embrace my new diet. I have trouble accepting that my wdw trip might just be different than before. I guess there is no place better than wdw to help me cheer up. I am also doubting my doctor who seems to just have diagnosed me with Ibs without having really explored deeper. That has got me down, 'cause at this point, I just want answers and I want to stop suffering! What is frustrating is that I am a girl who always ate well, exercised and kept fit. I seemed to have gotten several infections last year where I had to take a couple of rounds of antibiotics and I think it disturbed my intestinal flora. Plus i know stress is related to the gut but the more i suffer the more nervous and obsessed I become about it and I think it makes me feel more ill. It is a vicious circle.

I completely understand. So many people take food for granted. I would give anything to be ale to have some ice cream,or pizza, or a fast food burger and fries. I used to love cooking and baking and now it's more of a chore than anything else because I have no other choice. The thing I miss most is just being able to eat out.

And I completely understand about the frustration of not knowing. I would definitely get a second opinion. I switched GIs when it became apparent that my first one was no longer interested in trying to help.....I wish I had switched sooner. I've been sick for about 2 1/2 years and I am having abdominal surgery in 2 weeks to see if we can finally get a complete answer.

My best advice is find another doctor. The most important thing is to find a doctor who you like and are comfortable with and who will actually listen to you. My GI always asks me my opinion and what I think we should do so I almost always get a say. It's a very collaborative physician-patient relationship and it's wonderful. If you are not satisfied with the care from your doctor, find another one.

Hope you get answers soon!

 

[Denine]

I would also get another opinion. IBS is a catch-all diagnosis when they either don't know or don't bother to find out the real reason. I would also ask for an endoscopy. Could celiac disease be a possibility for you? If so, you need to eat gluten to get an accurate diagnosis with the blood work and endoscopy.

 

[Sparkly]

Take more medicine with you that you'll think you need- you never know when you'll have a flare up and run out at a critical time! I ran out of a prescription medicine called Buscopan and couldn't find any in any of the supermarkets or pharmacies. Had to make do with Imodium. And now I get a repeat prescription before I go and pack the whole lot so I never run out.

Also, I find taking a small ziploc bag of moist wipes around with you helps a ton in a flare up.

 

[Alexsandra]

I would also get another opinion. IBS is a catch-all diagnosis when they either don't know or don't bother to find out the real reason. I would also ask for an endoscopy. Could celiac disease be a possibility for you? If so, you need to eat gluten to get an accurate diagnosis with the blood work and endoscopy.

No they tested me for Celiac right at the beginning. But my doc told me I could still be intolerant to Gluten. I definitely will ask my gastro to do an endoscopy at my cost. Here in Canada unless you go private it is hard to convince doctors to do extra test that cost the hospital more money.

 

[Alexsandra]

I completely understand. So many people take food for granted. I would give anything to be ale to have some ice cream,or pizza, or a fast food burger and fries. I used to love cooking and baking and now it's more of a chore than anything else because I have no other choice. The thing I miss most is just being able to eat out.

And I completely understand about the frustration of not knowing. I would definitely get a second opinion. I switched GIs when it became apparent that my first one was no longer interested in trying to help.....I wish I had switched sooner. I've been sick for about 2 1/2 years and I am having abdominal surgery in 2 weeks to see if we can finally get a complete answer.

My best advice is find another doctor. The most important thing is to find a doctor who you like and are comfortable with and who will actually listen to you. My GI always asks me my opinion and what I think we should do so I almost always get a say. It's a very collaborative physician-patient relationship and it's wonderful. If you are not satisfied with the care from your doctor, find another one.

Hope you get answers soon!

Thanks I appreciate it!