Wilderness Camping Tips for Ostomates?

This is for the outdoorsy ostomates - anyone have any good wilderness camping tips or kayak tips to share with me? I just got an ileostomy 6 months ago, and before surgery I went on kayak trips and went tenting deep in the woods for days at a time - no bathrooms, no electricity. I don't intend to let having a stoma curb any of these activities, but I want to be prepared and hear a little from an ostomate who's ALREADY done this stuff. So, any advice for me?

Hi ya,
I find when I'm going to be doing something energetic, I have an ostomy waistband to keep the bag close so it does not flop about too much.
And the usual loose clothing helps stop the bag pulling on your skin, as I'm sure you know.
We have "Comfizz" here (England).
They do three grades of protective clothing, from light waistbands and vest-type garments for hiding the bag on a night out, to protective clothing for anything... rock climbing, rugby, but they are not subtle.
I think the U.S. version is Stealth Belt, but I'm not sure.

I've heard of the Stealth Belt but it's expensive, and over here my insurance at least doesn't cover any kind of support garments - even though I already have a hernia! Sucks. To improvise, I bought a Spandex-like girdle thing for bigger ladies and cut the legs off. Even sewed a pouch pocket into it. Pretty good, eh? LOL!

Yeah, the Stealth Belt stuff is quite expensive.
I rarely use my support belt now. I don't feel I need it so much.
As it's cold here and I never wear tight-fitting clothing, lol.
There is a small shield you can get over here that I have seen, no bigger than your hand, and it fits onto a belt. But they are $80 on some of the U.S. websites.
In the U.K., we can get that sort of thing for free, and if you want to pay for it, it's only $10.
For example, we have this:

http://www.ostomartstore.co.uk/ostomart-prescription-products/ostoshield-stoma-protector.html
Not sure if it will be suitable for white water rafting, but it will stop the stoma from taking a blow.

Now, that will probably fit nicely in the waistband if you can make the pocket to fit it. It might be more comfortable than the small belt (which isn't included).

I kayak, ski, climb, etc. with an ostomy. It is easier, actually. Those trips looking for the perfect deadfall? Cannot wait to get to shore to find a tree? Thing of the past... The bag is simple, fast, and clean. I use a wafer system, so I take one for every second day. I normally get 5 or 6 days, but sweating and maybe in the water, they can "get loose"... I also use a kidney belt like motocross bike riders use. Put it over the whole thing... It works, and the bag never comes off.... Also, if you regulate when you eat, you can kind of control when the bag will fill.... Enjoy! I have not had to stop anything... In the winter, I ski as a ski patrol in the Rockies.... The bag does not enter into anything.

I have purchased the Stealth Belt as well as another belt from a different company and prefer the Ostomy Solutions one over the Stealth because of the material involved. As for spending time in the woods, I live in Maine and spend quite a bit of time in the woods. I have found that we ostomates actually have an advantage when "nature calls"...we don't need to bring a whole roll of T.P. when we go for a "walk" and also, poison ivy on the behind is no longer an issue.

LOL, I live in Maine too. So you get what I mean when I say "wilderness camping" haha!

Hi Miss Megan!

I (Ileo Dec '09) just have my usual 'replacement stuff' with me. I've managed to get it down to a very small, light, compact package (flange, 2 bags, wipes, bit of TP, disposal bag). That package goes into my everyday purse or into a backpack.

Plus, if hiking, I carry an empty small mayo jar (plastic and light) for emptying. Many people feel okay about emptying in the bush, but I like to carry out all that I bring in. I've even used that set-up for emptying in the car during a long drive when the need comes up with no washrooms around.

Hope that helps.

Thanks everyone for your input! Somehow I bet going back to all my normal outdoor activities this summer is going to be a lot easier and enjoyable now that IBD doesn't rule my life, lol. Beatrice - great idea on the mayo jar!! Perfect thing to bring in the boat when fishing. And my friends and family don't care if I fiddle with my bag around them; they're just happy I'm still alive, prosthetic intestine or not LOL.

Bears do it in the woods, so we can too - and I agree, it's a little easier than when I had all my parts. Rough camping ideas for tent sight - don't "go where you eat" is for anyone camping. When you are in camp, dig a latrine for that early morning empty. You can buy the disposable "potty in a bag" products at any camping store or camping department in places like Walmart. Those are good for trail, kayak, canoe - so you can go without too much bother, they seal well and you can toss it in the fire pit when you're back or into a garbage receptacle in or out of the trail parking areas. If you don't have the porta/bag, you can find a deadfall to sit on or learn your body balance/feet stance to empty while standing up. Being mindful of nature and other people is something every "body" has to do while being a good camper. I agree, it's actually harder for me, as a woman, to urinate. Squatting while looking out for poison ivy, having to undo my pants - so, if I have to pee too, I'll empty. I will cover with leaves if I don't have a portable toss pouch disposable potty. Using biodegradable toilet tissue, hand sanitizer - you should be good to "go"!

For changing my appliances, I do pack extra with me when leaving home site. Bringing disposable dry fast wipes (I like SafeNSimple) which cleanses well, dries fast, and does not affect the new appliance sticking), pre-construct your new change as much as you can adding the gasket ring already to go and put the no-stick 'lid' back over the appliance package. Bring the supplied product toss bag and you should be able to change without a sink or much hassle. If you do have to do it in front of anyone, you can step to the side or they will have to just love you more than they already do! In various weather conditions with high humidity, having the most portable products is easier. For swimming, and as others have said - an ostomy belt is helpful. You can get really soft ostomy belts from Hollister. I have peristomal hernia going at all times - and surgery is a waste of time because they just come back - so - I wear a Nu Hope hernia support belt. The belts are covered by those with insurance. But you have to go onto Nu Hope's site and look at their offerings and call customer service to work with you as you look because it is a bit confusing. I love their breathable belt styles, and you can get your perfect stoma cut size hole and widths. I do the flat panel style, but there are a lot of options. This company even takes 'shape wear' you can buy and send to them to put in an ostomy cut ring into it!

I agree that a belt helps my appliance last longer both home and away. I use the Hollister products with 'floating flange', and the hernia belt takes that feature away, but I am more secure from floppy bag as well as having a longer-lasting wear time.

Camp, boat, swim, be in nature - and it'll be just as awesome as ever! We rough camp too, and I'll never give it up! HAVE FUN!

Love Maine camping! Hermit Island or really rough - up in the Rangeley area. I did Grafton's Notch - oh man, I wanna go camping right now, now, now! LOL - nice to see so many enthusiasts. My idea of a 5-star holiday is out in the woods so far off the grid the critters don't know they can try to eat your food. Except for leaving a can of mixed nuts out on the table one night, but I think that squirrel could read. We still put our rubbish and food bins in the car at night.

Megan-

I've had my ostomy for my entire 47 years. I have also camped, kayaked, canoed, snowshoed, backpacked, winter camped, cross-country skied, and gone on extended kayak and canoe trips in the BWCA and Quetico Provincial Park in Canada.

I have never had any problems with regards to the ostomy doing any of these things. However, one does have to be prepared. There are some very good tips already posted, so I'll refrain from repeating them. I'm sure you've heard of Pelican Boxes, (perhaps you already have one), and I have one that is just for my ostomy supplies. I also place that box in a dry bag, just for added security. Even though I may only need one appliance every three days, I pack one for every two days, plus one extra. One would not want to use their last bag on day five of a seven-day trip. I won't go into detail of what I place in that box as you already know what you will need.

Since I have an urostomy, my "nature calls" are typical of any other camper. My only difference from them comes from the actual bag changing. I pack out all trash, and this includes the used ostomy bags, so I also carry several small trash bags that I can tie-off and place in any larger trash bag. At one time, I used to throw used bags into the toilets in the outhouses at campgrounds. I discovered that when the time came for park employees to pump out the "debris" from these outhouses that the ostomy bags jammed their pumps and clogged the hoses, so I quit that practice and dispose of them as I would regular trash. Of course, it goes without saying that one who is respectful of nature would also not leave or bury these plastic bags in the woods.

As far as the actual strenuous activities, as you go along, you are going to learn what activity leads to what problems with the ostomy. I was never a big fan of wearing a belt until I started getting serious about kayaking. With a proper kayak stroke, one does need to twist the upper body and this led to me needing to wear the belt while doing that. Now, I always wear a belt regardless of what I'm going to be doing.

Final words: you have already made the most important step in dealing with this, and that is that you are not going to give up your lifestyle just because of this "change". Any battle is 95% mental, and if you have already won that part...

Hi.... I live in the country and forest lands and thrive on those activities, deep forest camping, kayaking, snowshoeing, rock climbing, swimming, and all sorts of outdoorsy activities. I've had my ostomy since age 10, as I like to remind people so as to help make my point. I am 46 now and still do all these things. I maintain wearing my more comfortable pouches, take along extra supplies and extra water canteens (not just for drinking but washing as well). Backpack in kayak dry bags, all things you don't want to get wet. And Sistah, you just head on out there and have yourself some fun!!

Hi there,

I had a colostomy 3 years ago. Last spring, I completed a 6-day trip on the River Tay in Scotland with 3 friends, after a 'failed' attempt the year before (due to atrocious weather). It was cold, wild, and fantastic. I've written a short blog below if you're interested.

http://www.songofthepaddle.co.uk/forum/showthread.php?35040-River-Tay-Descent-again

The main things for me were to take plenty of ostomy supplies, have a tent of my own, and understanding/supportive friends.

I seem to be heading for an ileostomy now, so no more trips this year, but I was skiing in France in February and rock climbing on Lundy Island last August.

Good luck with your adventures.

PS Good to see so many outdoorsy ostomists.... I thought I was the only one!

Thank you so much, everybody!! It makes me feel so much more reassured that I can go about my everyday business having fun on vacation and not have to really worry that much has changed - just by hearing the stories from you guys!

SariJo - I LOVE HERMIT ISLAND! Isn't it gorgeous? I had one of the oceanfront sites the last time I went. Usually I go up around Jackman and the Quebec border - I've never camped in the Rangeley area, but maybe this year?

I guess I'm more intimidated by roughing it with an ostomy more than anything else - but my friends and family are really supportive. I've tried to get the NuHope belt approved by my insurance - I have a hernia, too - but they denied payment for it. Oh well. I think I might buy one just out of pocket. Seems like a worthwhile investment for all the things I want to do this summer.

Sorry, it's taken me so long to check in and read your comment! Hermit Island is wonderful! We usually go for the wooded spots and have been on the mud flat side because of the shaded areas in both types of location. We did camp one night on Joe's Head at the top, a bit too exposed to wind and sun. It was for one night when we arrived to wait for our permanent site for the rest of the week.

I have not had the opportunity to camp this summer for the first time in many years. I miss it! I hope you have found yourself in wonderful places and are less intimidated about ostomy/camping concerns.

As for the cost of belts and insurance coverage, have you had your GI write a Medical Necessity Letter or call in submission for you to insurance? Sometimes it is an effective first way to get the items covered. I don't know if Nu Hope works directly with folks who need to pay out of pocket. It'd be neat if they did.

Cheers to campers this summer!

Thanks for your reply!!! And I have a SA-WEET update for you about wilderness camping with an ostomy.........I WENT.

Yep, I went on a 3-day trip (just to get my feet wet) a couple of weeks ago. And for all I worried about it, my ostomy was a nonissue. It's actually easier camping with an ostomy than it is camping when you have a "normal" digestive system and you're coping with IBD, LOL. I ate foods I knew were safe with me and brought plenty of supplies just in case....but I had no issue. NONE. ZERO.

So if anyone out there is reading this and has been afraid to camp.......GO!!! It's okay! I also did something else on my vacation I never thought I'd do again - SWIM. And I've taken my kayak back out on the water! I'm over the moon right now.

That is so freaking cool!!!

I'm so happy you took the risk and learned how great life can be while living with an ostomy!

Miss Megan M... I am so proud of you!!!! YYYYYYYESSSSS GIRL!!! ...continue to get out there and live life to the fullest.....any obstacle falls in your way just kick it aside........I was so happy to get back to this thread to see how you've been doing. You're an awesome example and inspiration for others, and it appears you are proving some very important things to yourself.....great job girl!!
Cheers!!

Doe

Thank you so much!!! It feels awesome! I would never have had the courage to do it if it weren't for people like you pushing me and showing me that it is more than possible!

I know it's 2 years since this thread - but it has made my day! I had my ileostomy less than two weeks ago and am desperate to get back in my kayak. I have been wondering quite how to deal with it once I also get back in my wee Mazda Bongo and head to Scotland... let alone when I am fit enough to get back to a bit of white water coaching. Wandering into the woods is a no-go as I am a wheelchair user.... and once I'm in my boat I am usually there for maybe 4 or 5 hours. If I need to pee, I get the lads to turn their backs and I 'perch' on the edge of my boat (tricky when it's winter dry suit weather - but needs must!). Hilarious for everyone else when we were watching an air show from the water - we pulled up on a beach and I sent the lads to turn their backs ...rummaged under my spray deck, perched and then suddenly slipped onto my knees in the sand just as 2 Tornado jets came hurtling across the bay seemingly headed straight from my seaward facing rear end.

My kit is most certainly now going to include an empty plastic jar for dealing with the ileo issue!!!!

Sounds like fun! Pissing off the side of a boat, I've never done that before.

Good on you!!

Be lucky GC

Just an element of freedom