Recently had Colostomy and big trip in 3 weeks!

[gregschild93]

Hi there,

A month ago tomorrow I had my colostomy, luckily being a student I have been able to just relax over the summer period while I get use to the change in my life. At the beginning of next month I am climbing Kilimanjaro, my consultant knew this (and got me in quickly for my op so I could still do it!) and the stoma care nurses are aware and trying to get me as prepared as possible.
I am having a big problem with leaks which is stopping me wanting to go out and about at the moment. I have various different bags to try but just don't seem to be having much luck with any! Obviously, in 3 weeks I will be camping on a mountain with no access to toilets. While on the mountain it will also be quite cold so I will have a few layers on making me unaware of any 'minor' leaks which may occur until we reach the next camp site. Over time a minor leak can make a big mess!
Just wondering if people had similar problems soon after surgery and how they dealt with it.
Also, if anyone has had experience managing their stoma while camping without any facilities I would really appreciate a reply on how you got on. My worry is disposal as I pretty much just have to put it in with the regular rubbish I assume.

Thank you

Greg

 

[PsychoJane]

Hi Greg,
Kilimanjaro sounds great! I hope you won't push that opportunity away!
I biked the island of cuba a few years ago. The conditions over there, as far as toilet go, are pretty poor. Sometimes it was a dry toilet, other time it is "normal" without water. I would have prefer dealing with nature (I've done a few camping trip as well) and just carry a shovel and empty that in the ground.
For that part it guess you should be ok (I don't know if they have latrine on the way up, probably?). For the rest, its about carrying opaque bags to dispose of your appliance when you change. I guess I would throw it away with the rest of the trash but maybe bag it in 2 bag to avoid any mess. I always carry a few baby wet napkins, they are quite useful in limited conditions. Just make sure there are no moisturizer in them, that would prevent your flange from sticking.

As far as the appliance go... I had many leaks with any flange that is not completely in paste type thing. I mean, if there is any tape, it eventually ends up leaking for me. If you have not try them, I would suggest you give a try to coloplast or salt product (haven't tried this one but it looks like the same type). I find the two piece appliance are better than the one piece as well when it comes to leaks based on my personal experience. Maybe because I get to pressure evenly on my flange more often when I unclip the bag.

I try to eat just the right amount when I do physical activity that are susceptible to compromise my flange. The more fiber I eat, the less time my flange last and the more susceptible it is to leak I found. So I prefer focusing on protein and juice rather than fresh fruit and fiber and such when I have to hike and want to avoid any issue. Normally I don't eat that way but I feel safer that way. Keep well hydrated (that has nothing to do with the leaks but it's a must considering the kilimanjaro ).

 

[gregschild93]

Hi

Thank you for your reply, I've got a couple of two piece bags to try which I haven't used yet so ill give those a go
I never thought about diet affecting leaks, since the operation I have been eating more fibre simply because I can! I had to avoid it where I could beforehand so was nice to be able to have Weetabix for breakfast again!
So ill try and think about my diet more, I just want to get through this trip! Really looking forward to it and it's becoming such a challenge and big deal for me I think I'm probably going to get emotional when I reach the top!

Glad to hear you get on okay camping and in 'less well' facilitated places!

Thanks again for the advice

 

[annawato]

Wow I think that you are amazing climbing Kilimanjaro with a colostomy. Good on you. I'm freaking out just flying to Hawaii and having to share a bathroom with non family!
Firstly, leaks. Is the bag just coming off or is the output tracking out and escaping that way. Is your skin around the stoma even or scarred or creased? Is your output very liquid or more solid?
Make sure the hole you are cutting (or have pre cut) is large enough. I had heaps of leaks at the beginning and coudn't work out why since I had a nice snug fit around my stoma. Problem was that when I had too much fibre a lump of output would push the baseplate away from my skin. Its best to have about a millimetre wriggle room around the stoma and then use paste to protect the skin.
When you remove the baseplate look to see where the leak is occurring - you'll be able to see on the bottom of the baseplate where the output has travelled. Put extra paste to block this passage.
Make sure you only use warm water to clean the skin - anything with an oily residue will stop the baseplate sticking. Also make sure your skin is quite dry - a hairdryer used carefully (don't burn your skin or stoma) will help dry the skin - then use a barrier wipe, then paste where needed. I put paste in a ring around the hole in my flange to help protect the skin and stop leakages. Some people use eakin seals or similar but i haven't had any luck with these. Another thing is too warm the baseplate before applying. I put it in my bra or under my arm while I prepare everything and this helps it stick better. This will be particularly important when it is cold up Kilimanjaro. After putting the baseplate on make sure you stick the edges down firmly and hold it all for a couple of minutes at least to warm the flange and help it stick better. Flange extenders like brava elastic tape are great for extra security, or you can jsut use micropore tape which would be less to carry. Another product that is excellent for making everything stick well is friars balsam which you can get from a chemist. The other name for it is Benzoin (Binzoin??) or something like that so check you are getting the right thing. Finally make sure when you cut the hole that you aren't piercing the plastic inside - Ive had a few leaks that way.
I found I got a lot more leaks in the beginning. I'm not sure if I just worked out a better system or if it does just get better. Finding the right appliance for you is important. I find coloplast products don't stick well to my skin while others love them. I'd imagine a two piece system would be better for camping as you can just throw away the bag and don't have to clean and change the baseplate all the time. Also means you can "burp" the bag if you have gas build up if your output isn't too liquid.
For disposal, double bagging in opaque bags is best and there would be no problem putting it in with the regular rubbish. Perfumed nappy bags or doggy bags are ideal.
Cleaning up if you do have a leak will be a real hassle and you will need to carry extra clothes in case you get one. In Australia the nurses use a product called Ready bath to bathe bedridden patients. They are basically like giant wet ones so if you can get your hands on some they could be invaluable.
How long is the climb? Do you have porters? You will need to take enough supplies to last of course but make sure you have plenty of spares as well.
I'm sure I have forgotten lots so ask away. And have an awesome trip. Have a good cry for me when you reach the top!

 

[DJW]

To help prevent leaks make sure there is 1/8th inch around the stoma. Too tight and it will leak. I also use Eakin seals (great for ileostomies that tend to be water to paste consistency). Hope this is helpful. I rarely get leaks. Also, change it more often. Almost forgot, my convatec 2 peice has a belt option. Holds it tight to my skin so I can move around and reduce the chance of leaks.

 

[annawato]

Oh yes my belts are a godsend. My leaks drastically reduced when I started using a convatec belt. Also check that your stoma is not retracting. You may need a convex appliance. Mine sticks out a bit but I still find that the convex appliance helps and the belts help it stick out more. Mine is an odd shape so while one side sticks out the other slopes down and output kept seeping under the flange there.
I found the convatec belt was better than the velcro one I used before. Not sure why but am just happy it worked.

 

[hainman]

hey gregschild93 good on you for tackling such a feat a month after surgery,im just coming up for 3 weeks after ilieostemy and i use the coloplast assura drainable bags,have had one minor leak so far but wasnt to catastrophic,i havnt used any paste or additional flanges or anything i do get a bit of a build up of gas which is a bugger,sometimes watery output but marshmallows are a godsend and thicken it right up so quickly,
Im hoping to get back on my bike in the not to distant future but just need to make sure i can sit on the saddle for an hour or more after having my rear end removed and stitched up....good luck with the walk fella,hat off to ya for going for it....

 

[Samboi]

Hi Greg
Canadian hockey player Paul Riome trekked Nepal with an ostomy last year.
He experienced a few leak problems because of the cold.
He had some good tips on managing this whilst in extreme environments.
His blog - www.livingbiggerwithcolostomy.com gives great insight to trekking etc with a Stoma.
Good luck on your trip - sounds very exciting.

 

[gregschild93]

Thank you everyone for your advice Lots of great stuff there I really appreciate it. Trying a two piece today, was much easier to check its fit snug around the stoma as obviously there is no bag in the way, so hopefully this won't leak and should be more convenient not having to change the whole bag daily or more on the mountain. I think ill also get a few waistbands so if it does leak it ruins the waistband I can replace rather than my clothes!

Thanks again for the help

 

[annawato]

Thats actually a good idea for a cold environment, extra padding over and around the stoma to absorb any leakage, plus may help solve some of the problems caused by the cold.

 

[gregschild93]

Well I'm having trouble with the 2 piece. Its an adhesive link between the base plate and the bag and it keeps leaking between this seal. Changed it 5 times, and it leaked every time pretty quickly so I got fed up and put on a bag which still leaks too often for comfort but is the best I have at the moment. And also it will be no good in the cold conditions on the mountain as it's often hard to get it to stick as it is.
Anyway, I was wondering whether a mechanical coupling on a 2 piece would solve this issue? The bag did not leak under the base plate (whether this is because it just didn't get the chance to get that far I don't know). Also, having a Crohn's flare up at the moment so the contents is more watery than it has been. I had my infusion today so hopefully I'll start feeling better in the next couple of days and the contents will firm up a bit. I felt ill before my last infusion so it looks like they are going to bring them closer together.
Right so basically I think a 2 piece is my best bet for Kilimanjaro purely for not having to change it fully all the time and having the issues of attaching a cold bag to cold skin. Just looking for the pros and cons of adhesive and mechanical coupling!

Thank you

Greg

 

[DJW]

Hi. I use convatec Sur-fit natura. The bag snaps onto a ring on the wafer. Then I use the belt. Eakin seals are great for watery discharge; I RARLY get leaks. 1/8 inch gap is required around stoma. Too snug and it will leak.

 

[PsychoJane]

Hi Greg. Just a little additional tip if you are not gone yet. If ever you have a leak or a mess whrlere your bag gets dirty from the accident. Don't take the chance to wipe it out telling yourself you will deal with it once you are at the camp at night... Deal with it asap and change for clean. I wiped the whole thing as I had a mini mess during a trek past week and it managed to burn my skin all around my baseplate by the time I toom the time to change it (I was worried to annoy the group because they are not aware of my condition)...

 

[hainman]

can i show my ignorance and ask what is meant by 1/8th around stoma??do you mean that is how much the flange is cut extra to the size of your stoma??say your stoma is 30mm,you would cut the hole 40mm or there abouts??

 

[DJW]

Yes. If it is snug it won't last. I've had it too snug and it leaks in a matter of hours.

 

[hainman]

mmm strange,my stoma nurse told me to cut out the hole as tight to my stoma as possible,it stops the sh1t from irritating my skin and burning it,weird ive had one leak and even then it was minimal and because i put my bag on and the flange kinked a wee bit,suppose everyone has their own way of doing things.....

 

[DJW]

Hey, if it works, great. My nurse said the opposite. Took care of my leaks. Maybe it depends on the brand used.

 

[hainman]

very much so,not slagging you or the nurse off,i was getting some major skin burning and she told me it was due to me having to much skin exposed due to me cutting bag to big,i use the coloplast sensura bags,

 

[annawato]

Hi Greg, wondering how your trip went? Hope you had a great time and your stoma behaved itself.
:heart: anna

 

[gregschild93]

Hey, I'm actually out there now! Been here 3 days and literally about to leave now to start the climb! Somehow have wifi at our hotel haha, anyway, ill reply in detail once I'm home so far no issues as far as the stoma is concerned though! Thank you for all the help!

 

[annawato]

Good luck and enjoy! Happy climbing.