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summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/8/2011 10:40 PM (GMT -6)   
i know you go on lots of cruises and we are going on one in a few weeks, do you do anything special about your ostomy when you go?
i know to take lots of extra supplies and take them in my carry on, but do i need to tell the medical people or have a doctor note or anything? and do you have a problem taking your scissors on?

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 1/8/2011 11:19 PM (GMT -6)   
I know this is sort of off topic but where are you going on your cruise......I am jealous!
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/9/2011 10:38 AM (GMT -6)   
Hi summer,

Due to the serious small bowel adhesion obstructions I had PRIOR to my necessary lysis of adhesions and ileostomy in 2007 (necessitated by the overly invasive surgery done on me in 2006 which later turned out to be unneeded) I don't fly to any of the cruise terminals, so getting the scissors onto an airplane is not an issue for me. (The reason I don't fly is that PRIOR to the adheison lysis, I had a small bowel obstruction while flying due to the change in air pressure when I was coming back from the Mayo Clinic where I went for a special image test. After Lahey CLinic freed up my small intestine and did the ileostomy, it MIGHT be safe for me to fly, but I have been doing so well for 3+ years now that I dare not mess with success. Both my Lahey surgeon and my stoma nurse told me it would be OK to fly with the ileostomy per se, they said likely I would be OK small bowel wise to fly too now that the loops of small bowel have been freed, but they said use my own judgement. I now err on the very conservative, hence the no flying. But just wanted to let you know that the bag would not pop off or anything as the plane cabins are pressurized to an air pressure similar to that in mile high Denver, Colorado.

You are right, keep all your supplies with you in carry on bag. If I were you, and were flying, I would definitely get a doctor's note explaining your gut arrangement and giving permission to carry those scissors. I would also pack an extra pair of scissors in my checked bags just in case those airport people "don't get it." One never knows.

I always carry with me a short, concise, typed medical history with a note from my doc saying if I ever start vomiting or having unusual output (or worse yet, no output), then I need to be evaluated for possible recurrence of adhesive small bowel obstruction and if I ever catch the Norovirus (stomach virus with vomiting and diarrhea) I would need IV hydration and an anti-nausea drug like Zofran. I usually touch base with the ship doc soon after getting on board, hand him or her the typed scenario, and say something witty like, "I hope I don't have to see you professionally, but I just wanted to give you the heads-up." They TOTALLY appreciate this. Ship docs are EXTREMELY talented docs, have seen it all, and unlike some "land docs" are totally open to patients knowing themselves. They are not into the whole ego thing, they just appreciate the fact that I am with it enough to supply the information. This in turn helps them if anything goes wrong.

In 3 years of cruising (caused by love of travel, celebrating being alive, and not daring to fly YET), so far the only thing I've needed is an IV due to severe dehydration I got in a hot port at the end of a 3-month Circle South America cruise early in 2010. Despite drinking 3 liters of water, I started seeing stars, everything went black, and I went down like a stone just as I got back to the ship. Luckily there was this sofa at the entry to the ship I just lay down on. Next thing I knew the ship doc had 2 IV's in me and I was coming around. I wear a med-alert bracelet too that says ileostomy on it. This doc was great.

He told me to drink gator ade the next day but it gave me ileo diarrhea due to all the sugar. When I got home, My naturopathic doc suggested this hydration powder to put in water that is sweetened with only Stevia (not even any fake sugar which gives me worse ileo diarrhea.) I will look up the name of the hydration packs sweetened with Stevia only and get you the name of it. If you are going to a hot port, it may make sense to have some of this with you.

So, this is how I do all this cruising in all parts of the world. It is NOT easy doing this as an ileostomate, but I'm doing it. I'm going for the gusto after almost losing my life. I found out the important things in life are cruising, intense travel, friends, and ballroom dancing on cruise ships. The Cunard line is especially great. They have dance hosts. They are these guys whose job it is to dance with single women passengers who love to dance and have nobody to dance with. Most of these guys are great and I have become friends with a number of them. Also I usually go on cruises with a friend or two from home just incase something happens to me I would not be alone.

Hope these suggestions help.

Collicat,

Assuming I stay OK, my next cruise is another to the Bahamas and Key West in March, then one across the atlantic to England, then up the baltic sea to St. Petersburg Russia then back across the Atlantic. That one is scheduled for August.

Rosemary (Ileostomate cruise consultant) I feel a new career coming on :-) :-) :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/9/2011 4:42 PM (GMT -6)   
thank you SOOO much!!! that's awesome info.
I am not flying, we are leaving from charleston which is about 5 hours from here and going to the bahamas! we booked an exercusion at the atlantis hotel, im so excited, although not looking forward to having a wet bag after the water park, lol.
anyway, i was thinking of getting a note i will call my dr and have them make something up for me. And i planned on taking plenty immodium and phenogren with me. I'm excited about the dancing and the gambling! but i dont do balldroom dancing i'll be in the club! DH wont dance but he will stand there and drink while i dance, lol. and the food, imma eat lots of desserts! maybe just desserts!
we have a grand suite, i dont know what that means exactly but it sounds special.
the bahamas wont be a hot port, im from the south so the 80 average there is nothing to me, lol.
i had thought about talking to the dr on the ship also, but wasnt sure if that would be a bother to them or not.
thanks again for all your advice!

cghopper
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 1/9/2011 5:42 PM (GMT -6)   
I know you are not flying, but for others that may be curious, you can carry on scissors that are less than 2 in long.  I flew over Christmas with mine in my carry on with no problems. 

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/10/2011 7:13 AM (GMT -6)   
Hi Summer,

If you are already used to warm climates, that is good. Your cruise sounds great. The grand suite is like a normal room only bigger. I bet it will have a nice long balcony. You can actually just drop by the medical center with some printed info and leave it with the nurse along with your suite number and the name of your traveling companion. If you actually make an appt with the ship doc to discuss this, you will be billed (big!). BUT, I find just leaving something on file gives me peace of mind. In my experience, the doc just takes a quick look at it, thanks me (a LOT) for the heads up, puts it in a file with my name on it, and wishes me a happy trip. I come out feeling a lot more at ease because I've just touched base. Sort of like, line up help, then you likely won't need it. Have a wonderful time!

cg - That is good info for those who do fly. Scissors less than 2 inches long is good info. THanks for adding that.

Rosemary

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/10/2011 11:19 AM (GMT -6)   
im going to call my dr soon, they are probably closed today, since we have snow. When snow hits the south we close down, lol.
Another cruise question, is there water on there to drink, other than bottled water? they must have water cause they have fountain drinks can you get water in a glass?

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/10/2011 10:59 PM (GMT -6)   
Hi SUmmer,

Yes, they have ship water in pitchers and you can get it with or without ice. I always drink ship water but carry bottled water with me on shore excursions. Rosemary

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/11/2011 12:11 PM (GMT -6)   
they said we could each take a 6 pack of water with us, and i know how expensive bottled water is on there, so i didnt want to have to be drinking it the whole time!
can you take water off the ship into the ports?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/11/2011 10:40 PM (GMT -6)   
Yes, they allow water off the ship in bottles in the ports. No problem. Rosemary
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