Hi, I'm a newbie. Had a subtotal colectomy with an ileostomy on December 21 after a long and vicious Crohn's flare that didn't respond to medication (Pentasa, high-dose IV steroids, immuran, Remicade).

Long recuperation period, largely due to loss of mobility--muscles in upper legs had atrophied from being sick (and largely bedridden, except for 15 to 20 trips to the loo daily) for so long pre-op.

No problems with emptying bag by now--can practically do that in my sleep.

Stoma is recessed and pointing down, so finding the right wafer/bag combination has been tricky. I still get far too many leaks (twice so far this week: once in early a.m. and once in middle of afternoon).

Surgeon says I can go back to work "whenever I feel up to it." Physically, I feel that I could go back next week--mobility is virtually normal again, and I no longer feel the wracking fatigue that was requiring me to take a 2-hr midday nap after sleeping 9 to 10 hours at night.

I work for a big accounting firm. Our offices are on multiple floors of a downtown office tower. All of our washrooms (as far as I know) are the same--sinks and mirrors in an anteroom that you enter as soon as you open the outer door, then cubicles behind an inner door. Since these washrooms are wheelchair-accessible, there are no separate "private" loos. Even the firm's partners use these washrooms.

I am having terrible trouble imagining how I will cope with a bag change if I spring a mid-day leak. Even assuming that I could rig up some kind of mirror in the cubicle stall (maybe a small magnetic one?), how on earth am I going to wash the area around the stoma? Obviously I can't do this out by the sinks, where there's access to running water.

I'm sure some of you have dealt with this, and I'd appreciate any wisdom, tips, or tricks you'd care to share. I can ask the firm to make "accommodations," but have no idea even what to ask for.

When I first went back to work that was a worry for me too as I leaked quite often. We have a nurses office at work (I work for the State) but it usually gets on my clothes so I have to go home and deal with the leak. Luckily my boss knows about everything and is understanding.

Maybe you could take some gauze and 2 small plastic bags with you. When you enter the loo wet the gauze and put them in one of the plastic bags so you won't get wet all over. Once you take your wafer off I think you will be able clean the area well enough with the wet gauze. Then as you use the gauzes put them in the 2nd plastic bag so you don't have a bunch of dirty gauzes all over the place.
I haven’t had to change my appliance at work but since I’ve gone back to work I’ve had a full set of supplies in my desk drawer in case I every need to change things.

I don't know if “gauzes” is a word it sounds very weird to me.

Once you decide to go back to work I hope you get back into the accounting groove soon! (I'm an accountant also)

Scott

If I have to do an emergency change at work, I gather everything I will need and take it into a stall. Fortunately, our bathrooms at work have private stalls with doors on them. I'll bet you could tuck a sheet and some clothespins in your office and use them to give yourself some privacy for a change.

I grab a bunch of paper towels and wet half of them. Put a pile of wet paper towels and a pile of dry paper towels on the toilet tank. Wherever I can find room, I spread out my supplies.

I take a plastic grocery bag in there with me to toss everything that is dirty, and when I'm all done I toss that bag inside a ziploc bag and zip it up and put it in the trash.

I just take my time, pull off the old wafer, dump it in the plastic grocery bag, hold a wet or dry paper towel over the stoma in case it leaks, then use the wet paper towels to clean the skin around the stoma, and the dry ones to dry it off, then wipe with a skin prep and slap on the new wafer (with the new bag already attached and clipped). I also use an ostomy belt, which helps keep things snug and supported. If you're not using one you might want to try one.

The bottom line is that, if you have a set of supplies with you at work, and you don't freak out, and just stay calm and take your time, you CAN do this. You CAN change your appliance at work and live to tell about it.

Best of luck, and let us know how things work out for you.

Thanks for the replies so far.

Privacy can be had: the stalls do have doors. It's just that the sinks are separate from the stalls. (Picture the washroom at a mall or cinema.)

You've given me some ideas about how to handle the cleaning part, which was one of my bigger worries.

Alas, the toilets have no tanks to lay my supplies on. (Again, picture the kind in a public washroom.) The toilet-tissue dispenser--a big plastic job with a flat top about 3 inches wide and maybe 9 inches long--may suffice, though.

P.S. to Scott: I'm not actually an accountant. I'm an editor. The group I work for produces lengthy reports needed by corporate clients to satisfy certain government requirements. I help "translate" those reports into readable English, and train new staff in the use of our complex word-processing templates.

Hi Chelydra,

Welcome to the family.

What type/brand of appliance are you using? It could be that you need to try a different system to avoid the leaks in the first place.

I use Convatec's Moldable Convex Durahesive wafers and am so confident in them that I have never had to change my appliance in an emergency situation in the 3.5 years since I've been usng them (touch wood). I know that different systems work for different people so it's all a case of trial and error until you find one that suits you.

Another thing that I find helps enormously is to wear good quality lycra underwear. I wear my bag at an angle across my tummy and the lycra panties hold everything very securely and support the bag when it starts to fill so there is no dragging on the wafer. Some people prefer to wear ostomy belts but the lycra underwear are my preference.

I am so comfortable and confident in my set up that I don't even bother taking supplies with me any more unless I'm travelling off the island.

I have however, changed my appliance in some very small/strange bathrooms while travelling over the years so do know that it is possible to do it practically anywhere with some forward thinking. I'm sure that with the advice you've had from the other guys that you will do just fine in the event of having to change at work. Once you have had to do it once you will gain confidence and no longer fear having to do it in the future.

Good luck with going back to work.

Take care

Shell

I have a perm ileo and recently had a leak at a family wedding just before the church service. Had to do a change in the stall of the church's basement bathroom. No privacy at a sink there either.

A few things to add - I use zip lock bags to put my used appliance in. It keeps the smell in better than other bags and prevents the fluid from leaking out in the trash after the fact. In your emergency kit, pack some diaper wipes. They sell them in small travel sized packages now. That way you can still clean things up a bit without a sink.

THe biggest trick in my mind is dealing with your shirt while doing the change, so I'd suggest taking it off while doing the change.

I was given samples of Safe n Simple Stoma Wipes and they work great. These wipes are great for when a sink is not available or close by. They are also flushable. I have used them for midday changes and have had no problems. I can go up to five days between the next change. They leave no residue just a clean and squeaky surface for your wafer. Also, Hollister sends out a nice travel bag that includes sciccors, magnetic mirror and a couple of appliances, for free! Here is the website for the wipes, www.SnSmedicalwipes.com

Just remember if you fly to take the scissors out of that nice travel bag and pack them in your checked luggage, otherwise you'll lose them at security!

Hi Chelydra,

All good tips these experienced folk have given you. I used Shell's system for several months, but after a number of blowouts, I've decided to try the new Hollister two piece. You can find Jason's old posts on it. Works much better for me, which is only to say that the fit of any appliance is a very individual matter.

I also use the S & S wipes, though I didn't know they were flushable. They seem an indulgence cuz they're amply sized, so I carry them to use when I have a problem or public change, but just use paper towel quarters at home.

The toilet paper dispenser would work in a pinch,and I too, remove my jacket or shirt, but the best thing I"ve done is request a shelf. I figure I"m probably the least disabled of folks who use these stalls, but when I request, in writing, a mounted shelf for disabled folks, almost every business has complied graciously. It's much easier to change at the library or the hardware or grocery store now! And I feel really good that other people who may need a shelf have one provided, thanks to my easy lobbying (though it didn't really take any pushiness!). I encourage you to ask your employer to put one in.

Lastly, you might even consider a trial run at work, maybe before lunch one day, so you know that it's really not as daunting as you might imagine. My worst periods have been public blowouts, no sink adjacent, no complete change of clothes (wunderwear, but nothing for the shirt and pants that were fluid stained). I had zip locks, powder, paper towels and a fresh set up, but all I could do was admit to myself that I felt like bawling, take a deep breath, and tell myself I could handle the problem, and just steam on through. No one was the wiser, and now I know I can cope with just about anything. Yep, both times were awful, but they haven't happened since, I'm a really careful observer of my own body and appliance now, and I'm much more confident having endured just about the worst I could imagine.

I so hope you don't have to go to that extent, but know you'd get through it. You're asking all the right questions in the best place - here!

Best wishes,

Barbara

Just cut everything out before hand, and put them plus a ziplock baggy and brown paper bag into a toiletry bag. Don't worry about powders, wipes and stuff, use the bare minimum - wafer, bag, paste or seals. Dry toilet paper or hand towels will get everything clean enough for you. When changing at work, you don't want to make it a big production. All you need is something that will hold until you can get home and can change properly.

When done, pop used bag and stuff into the ziplock baggy then into the brown paper bag and drop into the nearest bin.

I just want to add that I agree enthusiastically with Shaz that you want to keep it to the bare minimum when doing a change at work (or someplace else where it's an urgent situation).

One caution about paste: That stuff is really adhesive. When it touches your skin it is super-effective in staying put, especially the first few days when it is fresh.

So I would say that, if you are planning on doing another change as soon as you get home, SKIP the paste, because it's really a challenge to get it off, even using adhesive remover wipes.

Thanks to everyone for the wonderful ideas and confidence you show in your postings - I saw myself in so many. I had my surgery in February 2008 and intend on returning to work on a part time basis this Monday (7th week) I experienced the daily fatique, developed a feeling of paranoia about leaving the house and especially the fear of my bag developing a leak at the office. In all honestly, I KNOW very well how to change a bag by myself, but usually I break out in a cold sweat, panic, become anxious and emotional. I suppose this is the mental part of becoming used to my new situation. Once I overcome that, I know I'm on the road to full recovery. Reading the postings have been a Godsend! Thanks to all of you!

Wow! What a bunch of great ideas! I'm definitely going to incorporate many of them into my "kit."

Thank you all sooooo much.

P.S. Yesterday at a dollar store, I found a tiny magnifying mirror with suction cups instead of magnets. I'm thinking it might be a better addition to my travel kit, since not every loo will have metal stalls.

Good Luck,

My tip/2 cents for returning to work:
I carry a few sandwich size Ziplock bags with me, particularly when i see big corporate clients.
You can easily empty the pouch into a ziplock, reduce the air caught inside, wipe with T.P. and not get 'any' on you.
*Leave the ziplock OPEN when you (carefully) drop it in the 'loo', water will rush in and it'll flush right down the drain
Today's office toilets (as well as arena/stadium and Gym bathrooms) are so high-powered I have never had a ziplock cause a clog at offices, arenas and gyms in NY, NJ, CT. MD, GA, FL, etc.

My guess is flushing a paper towel would cause more problems

Men can do this standing up if they choose.

As always, Everyone here gave you outstanding tips.
One lesson I learned is this is not a 'one-size fits all" life challenge;
Trial & error will lead you to a working plan/strategy.
Try to laugh at the 'errors' you'll experience if you can....
.I didn't at first...found it's better to laugh...

Good luck