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Traveling with Crohns during a flare

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Posted 3/12/2008 9:22 PM (GMT 0)
I am so frustrated!!!  Spoke with the GI the other day and he is aware the pentasa and entocort are not doing getting rid of the pain and diarrhea.  I promised my kids I would take them to Disney next Wed, booked hotel and flights and they are so very excited.  Meanwhile, the burning I feel in my right side is so painful.  I am so upset.  I can't cancel this trip...We haven't gone anywhere in 2 years due to my problem and mentally they both need this trip. GI  doesn't use prednisone only with UC patients.  He said when I get back he wants to do another colonoscopy and then add the 6mp.  What can I do to make it until then??  Should I do a liquid diet?? Boost??  I have no fever and just want to get away too.  Sorry for whining...just can't believe this!!  Should I tell him to put me on steroids that there is no other option??

Thanks

Chris

Posted 3/12/2008 9:47 PM (GMT 0)
if your GI only uses prednisone on uc patients I would question his practices since prednisone is basically used on ALL of us crohnies at some point or another and not just uc patients. I'm on it now for a quick fix myself til my Imuran kicks in and I was going to recommend it maybe til you said he wouldn't do that especially since it helped me with the same problems you described within days....I know my family doc HAS prescribed me pred in 2 week doses or so when needed and when I couldn't get to a GI if its really needed. hopefully someone does have a solution to help keep you going, a trip to Disney does sound like definate fun and a good getaway! I hope it all works for you.
Posted 3/12/2008 10:21 PM (GMT 0)
I suggest that you tell your doc that you want to go on this trip, and ask to try the Prednisone, or at least have it with you if things get worse. I am planning a trip in three weeks, and I am doing ok, but worrying about flaring. (I know that doesn't help!) I am taking my daughter and a friend, and I absolutely do not want to disappoint her. I understand how you feel!
Posted 3/12/2008 11:15 PM (GMT 0)
gumby44 & LadyG-
I am going to call him tomorrow because even if we start the 6mp I am still going to need something until then. What dose do they start you at? I am already on the entocort and if that isn't working then should I be very worried the prednisone won't ?? LadyG you mentioned 2 week courses is that enough to get rid of the burning sensation that I feel on my right side?? I can't believe this is happening!!
Thanks for your ideas!
Chris
Posted 3/12/2008 11:16 PM (GMT 0)
I've never heard of a GI that doesn't use prednisone for CD patients. That's ridiculous.

If you are staying in Disney, you might want to reserve an electric wheel chair so you can get around easier. It costs a little money, but it might save you a lot of pain.

Also, try changing your diet, you'll notice an improvement quickly. I just went to Disney recently and I brought alot of my own food so I wouldn't suffer as much because while you are flaring, if you eat take out or processed food it will irritate your crohns more.

Here's what you should do now:

Cut out absolutely ALL sugar, grains, and processed food. Use butter or olive oil instead of margarine, unpasturized honey instead of sugar, etc.

Eat lots of well-cooked or pureed veggies, meats like chicken and beef, lots of soft mushy fruits with no skins or seeds like bananas and apple sauce, plain yogurts mixed with honey and fruit, aged natural cheeses.

Drink LOTS of chamomile tea (with a little unpasturized honey, if you like).

If you like sweet potatoes, they are a good anti-inflammatory and so is the chamomile tea. The point is to eat only natural food that won't irritate your crohns. If you cut out all grains for a few days it will also help.

Try to have a good time with your kids in Disney!!!
Posted 3/12/2008 11:21 PM (GMT 0)
Thanks Roni. I started on a liquid diet today. The burning sensation is still pretty bad. I have just been having clear liquids and 1 Boost for some energy. I just can't disappoint them. We haven't been back since my daughter's Make A Wish 4 years ago and we have planned and saved for this trip. This has to happen no matter what. I can do liquids as long as it takes to feel better. I just hope that is enough. I am calling my GI in the morning. This team is suppose to be specialists in IBD in NY city. I understand no wanted to use prednisone because of the side effects but I am out of choices in at this time and won't I need something until the 6mp kicks in??
Thanks for listening to me rant!!
Chris
Posted 3/12/2008 11:31 PM (GMT 0)
I would definitely get a second opinion. Everytime I have had a major awful flare, prednisone was always used. Unfortunately prednisone has been the only medication that has kept me in remission =( Personally I would go to another doc. Unfortunately I was on 6-MP, and it didn't work for me. I've been on asacol, 6-MP, and remicade (am still on remicade and it doesn't really work for me).
Posted 3/15/2008 5:42 AM (GMT 0)
I am not sure if you are travelling to Disneyland,CA or DisneyWorld, Florida? Last October my family and I went to Disneyland and I was not feeling well also. I was so worried I was going to wreck the trip for everyone, fortunately it turned out great and I managed OK.

I just wanted to let you know what I did that helped tremendously....We pre-ordered groceries from Albertson's online and they delivered everything right to our hotel for only $10 delivery fee!! That way I had all of my comfort foods and didn't have to worry about the take out food flare!!!  We will do this again for sure, the next time we go......even ordering cases of water and juice boxes and snacks for the kids was worth it right there. Cheaper than buying it inside Disney and great for the kids while they are waiting in the line ups!!  I hope you find some relief and enjoy your trip!  I am so jealous!!!

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