Any adventure sport enthusiasts with permanent ileostomies?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 10/5/2010 12:01 PM (GMT -6)   
I have been in the hospital for 12 days with a severe flare up of UC and I have decided to go the surgical route to cure my disease. As far as the surgery is concerned, I am leaning towards a permanent ileostomy.

However, I am concerned with how this decision will effect my lifestyle. My life hinges around rock climbing, backpacking, snowboarding, tele-skiing, moderate alpine mountaineering, biking, and trail running with my hubby of 15+ years. Every weekend we are out on a trip somewhere, and I know without these activities in my life, I would be lost.

I also work my dream job as a park ranger naturalist. I lead hikes for children and adults, often hours away from bathroom facilities. I also do evening programs like campfire talks and astronomy programs on stage for two hours at a time... again... hard to sneak away to the restroom. This is a career I have dreamed about since I was a child and worked hard to achieve. I would never want to give it up. I also do some art in my spare time, often going into the wilds to sketch.

One of the reasons I believe I want to opt. for the permanent ileostomy rather than J-pouch is that it seems like life with an appliance might be more predictable at work and when recreating. I could empty the appliance when I needed to rather than when "nature calls":) Is it possible to do all the activities I mentioned above with an ostomy appliance? My favorite rock climbing routes are long moderate alpine lines way back in the middle of nowhere... sometimes 12+ pitches where I am up on a rock face all day. How would one deal with emptying an appliance on such routes? I also love long week+ backpacking trips deep in the wilderness. Would this still be possible? What about catching an edge snowboarding (which I do quite often:)? Will a tumble tear off the appliance and leak all over? Any insight on how folks deal with their ostomy appliances in such adventure sports would be much appreciated. Thanks!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/5/2010 1:10 PM (GMT -6)   
I'm not an ostomate but a jpoucher. I chose the jpouch surgery because I didn't want to give up backpacking. I didn't feel that I could continue backpacking with an ostomy. Lack of purified water, appliance changes on the trail, as well as the fit of a backpack on a stoma had me worried that it wouldn't work. Maybe you will have more perseverance than I? Along with backpacking I engage in long distance, 100-200 mile hikes, mostly international. Since surgery I have also hiked the John Muir trail in the Sierras, and in and out of the Grand Canyon in 107degree heat! My jpouch has never kept me from being active or engaging in extreme activity. I cross country ski and bike ride as well.

As with any surgery for UC, there are compromises and sacrifices. There isn't a perfect surgery for us but I imagine with perseverance and the ability to be creative, you can do anything you want with an ostomy.

Sue

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/5/2010 5:46 PM (GMT -6)   
There are many products that will make an active ostomy life a lot easier! There is even a rock climber w/an ostomy that shares their story for one of the ostomy appliance companies...I'll remember the name and post it.

I don't think there isn't anything that cannot be done with an ostomy...like suebear mentioned there are compromises but I haven't found anything that I haven't been able to do.

Have you visited www.j-pouch.org? You can also check out www.UOAA.org!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 10/5/2010 5:52 PM (GMT -6)   
I have a friend who hiked the Appalachian Trail with a permanent ileostomy. It can certainly be done! It would require a little more planning than someone who didn't have one, but certainly would be better than random diarrhea in all of those situations, in my opinion!!
 
 

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/7/2010 4:47 AM (GMT -6)   
Doing all of the things you love will be so much easier after surgery, because you won't be sick anymore! With an ileostomy, you could just empty the pouch whenever you feel like it, since there's no urgency involved. Talk about freedom! :-)

There are no limitations to doing any of the sports you love, of course after you've recovered from surgery. Also, they have stoma caps that are hard and protect the stoma from injury and belly bands that keep the pouch tight against your stomach, so it won't tear off.

Keep us posted on how you're doing!

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 10/7/2010 10:57 AM (GMT -6)   
I don't understand how you are able to do all those things WITHOUT a pouch.
I have a colostomy and hike, snowboard, hele-ski, water ski, mountain bike, motorcycle, road rally and anything that I feel like doing.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 3:28 PM (GMT -6)
There are a total of 2,972,925 posts in 326,037 threads.
View Active Threads


Who's Online
This forum has 160867 registered members. Please welcome our newest member, RAbid.
414 Guest(s), 17 Registered Member(s) are currently online.  Details
jazzgtrl4, Froggy88, Balladeer, acarined, Kent M., SickSalamander, Gemlin, redskinsfan, island time, LucyDog, 142, jeanneac, RAbid, ddyss, BungalowMo, U.C.Me?, Proverbs356