What would you do?

Can anyone tell me what they would do if they were me.  The situation is:

My husband and I leave in a little over 5 weeks for Aruba.  I was diagnosed with UC on 2/13/09

1) Was started on Asacol 2 tabs 3x day.  This was increased on 2/26/09 to 3 tabs 3x day.

2) Still on Rowasa nightly

Most of the bleeding has stopped but I"m still having many trips (6-8 day) to the bathroom with serious cramping.  When the cramping starts I usually have less than a minute to get to the bathroom.

I will be out of the Rowasa in 10 days.  GI's comment was he wanted to see how I'd do without it.  That scares me.

So, based on the fact I am leaving on our dream vacation (for our 20th anniversary) the last thing I want is to be stuck in the hotel room or having to run from the beach constantly to find a bathroom. 

I go back to the GI tomorrow.  Would I be out of line asking him to increase the Asacol to 4tabs 3x day and to continue on the Rowasa?  I would be willing to do a "lets try it and see" game when we get back.  I desperately don't want to play it now.  I want to feel better for this trip.

What would you do if you were in my shoes? 

Definitely not! Let your GI know about your vacation plans and impress upon him your need to go fully stocked with medications. Now is not the time to cut back on enemas with your trip in the near future. My GI was always really good about making sure I could travel the few times I felt well enough. He even recommend imodium for slowing down the transit, only while traveling though, and prudently.

Sue

i agree...let your doc know about the trip and that its streesing you out. Make an appt after you return to reevaluate...but don't stop meds right before you leave. do you use imodium? i know some people don't but it's always helped me...when traveling i'llalso always try to hit the head before activities that may make me uncomfortable...in Hawaii we went on a snorkeling trip with about 25 people on one small boat with the bathroom in a center console right in the thick of things...needless to say a xanax would have been great...but the imodium worked like a charm and i made it!

Agree, stay on the Rowasa until after your vacation, and ask about increasing your dose (it could be going from 9 to 12 won't really make that much difference).

Ask about taking immodium. On "special" days I use 1/2 tablet and take it after my morning poos are out of the way. It calms things down for most the day, especially important if I'm on the beach! The small dose calms things down but doesn't stop it entirely, because that can feel very uncomfortable.

Also, I would get an Rx for prednisone, not to start taking but just in case for some reason you get worse. If you do, you can always then call your doc and ask how much of it to take but won't have to try to figure out how to get some when you're away from home. I always travel with some, no matter how good I'm feeling.

Have a wonderful time!!

Docs usually like to send vacationing patients away with a script of prednisone incase your IBD takes a turn for the worst, because generally speaking, pred makes for a good temporary bandaid, so that's something you may want to stronly consider asking your doc about as well.

:)

I agree w/burnabygirl about trying a steroid enema.  If you're still going 6-8 times a day, it doesn't sound like the Rowasa enemas are working.  I would see about trying steroid ones.  Also, like everyone else suggested plan to take Immodium.  I can take it every day and it works wonders for me.  I still go every morning but I can make it through the rest of the day without any issues. 

Have a great trip!!  I went to Aruba on my honeymoon (8 years ago), it was a great vacation!!

I agree with the others, let your doctor know your plans and either get on Prednisone now so you're somewhat healthy before you leave or something else that will help you improve. 

I went to Aruba in December and had just had a big blare in October.  I went on prednisone in October and by the time we left I was tapering and still had to go occasionally but didn't have the urgency. 

Also, I've gone on vacation either during or following a flare in the past and I always see improvement during my vacation regardless of what I eat.  I think it's because I'm so stress free on vacation and when you're there it's so easy to get your mind off this pain in the backside disease.

Good luck and have fun, Aruba is a fun place to visit!! 

I disagree about the pred script....go with the enemas, nightly. If you're improving, you'll continue to do so. Remember, that stress will add to your symtoms...maybe once you're on your holiday you'll start to feel better.

Of course, I'm biased and am pretty much antipred for just in case. You don't have enough experience yet to say whether you need it or not...

You could ask for steroid foam enema for a boost in case...but not pred. Know what you're asking for.

Keep with what you're doing...at least, that's what I'd do.

Let us know how your appointment goes.
quincy

Don't take it, just take some with you. Just in case.

Q, just because you're anti-pred, doesn't mean it's not a life-saver for many, pred as bad as it "can" be has given a lot of relief for those who have been at their wits end with their disease.

:)

Even if I am not in a flare I don't go on any trips without my Lomitil. It is a great stress reliever just knowing I have it. I split them into halves and if I really don't wanna go to the toilet for 4-6 hours (airports/airplanes) I take a whole one.

As crowded as commercial flights are now, if you don't choose your aisle, close-to-the-bathroom seat when you book your ticket, you will be out of luck. They will not bump a passenger out of a booked aisle seat for you.

After just returning home from a road trip vacation to Disneyland and Las Vegas, which I began in a semi flare and seem to be now in a full flare, I discovered that during the vacation, I did well.  The time I spent in Disneyland and Vegas were surprisingly good and fun.  Only the two days driving home were more difficult because there were such long distances between bathrooms. 

I think flying should work out well for you.  And it can't hurt to ask about an aisle seat, whether the flight is booked or not.   

I took plenty of generic cortenemas and used them nightly.  I also took lomotil, as Dr. A suggested.  It works a bit better for me than immodium, and I also take 1/2 tab at a time.  You'll need an RX from the doc for it. 

I know it's easy to say (write) but try to focus on the positive parts of the trip... that beach!  The sun!  The warmth! 

It's easy to forget that we have this disease but it doesn't have us. 

Carpe diem!

potato