Well, I thought it would be okay to go ahead on my cruise to Alaska even though my travel insurance wouldn't cover anything crohns related because I had a small bowel follow through and an increase in pentasa during the 3 months before my cruise. But, the pentasa seemed to be working - I had some D but nothing out of the ordinary, some burning pain near my belly button, but nothing new. I had a SB follow through and the doc told me that there is narrowing in my ilieum and into the cecum (which has spread I guess) but that I was not obstructed or partially obstructed. I told her about
the burning pain and she said it could be crohns but maybe it was an ulcer and to take tums. She said go on the cruise and enjoy - "rest and digest" were her words. I should have listened to the nagging voice in the back of my head that was whispering to me not to go! I went and had a great first day and a half. I woke up on the second morning (after eating a large meal and then being on a rocking and shaking high seas boat all night) with terrible increasing burning pain and four bouts of diarrhea. I knew things had gotten really bad by lunch when I had a high fever with chills (typical for me with crohns) and a complete loss of appetite - couldn't even imagine taking one bite of anything. I was in the middle of a cold ocean in a different country and knew that if I had to get it shore I would have to pay the coast guard and hospitals myself (talk about
stress and terror on top of feeling horrible). I had never taken prednisone before and had none with me, thinking pentasa would do the trick. I went to the ship doctor in tears and she gave me an initial dose of 80mg of prednisone and then a 40mg daily dose that I have been taking for six days (will start tapering it soon). The pain in my guts eased as did the frequent D, but I was scared of getting an obstruction and still did not have much appetite so existed on the cruise on potatoes, white rice and soup. I think the only thing worse than a major flare is a major flare when the only thing around you are icebergs and no insurance. Also, the constant boat vibration and rocking is very agitating to an inflammed gut at night.
There is my story. I am happy to report I am safely home now, and have health care where I am. This is my first time on prednisone and I am seeking advice. I have been feeling very "awake", nauseous in the morning before I take it, agitated in the morning (better as the day goes on). I know it has really helped my guts. The first night with the high dose I woke up with tremors and leg cramps and had to get up and walk back and forth for an hour. How is the tapering part going to go? Any advice on survival strategies...? I'm feeling sad about
my trip, relieved it is over, and trying to not beat myself up for going!
