Returning to Work with an Ileostomy: Seeking Tips and Advice

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This topic provides tips and advice for individuals returning to work with an ileostomy, offering practical solutions and support for navigating the workplace.
deniseweinert

I am returning to my desk job and am nervous about working an 8-hour day with my ileostomy. Any suggestions or advice would be appreciated.

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AlexT

My advice, don't let your stoma run your life or think it's gonna. You're gonna have to go to the bathroom just like those weirdos that wipe their butt. Enjoy getting back to your new normal and don't stress out over it, it's only a big deal if you want it to be. Oh, I've said this before but here it is again, disposable wet wipes for public bathrooms are so much easier to deal with than those big rolls of cheap toilet paper and trying to tear pieces off with one hand.

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IGGIE

Just make sure you have enough stock at work in case you need it. And don't worry, you will be okay.

Ice

Keep putting yourself out there. Don't let this control your life! Shit will happen, but who cares!

Bill

I'm so glad that you have had some really good, positive replies to your post.  This journey can be hard enough without the addition of worry about what 'might' happen. 

I recently took a leap of faith (at 79yrs) and started a new job in a kitchen, where hygiene (and hard work) was a top priority. One of the first things I did was to ascertain that there were various things in that environment that were far from perfect with regard to hygiene. The top of the list was the toilet facilities, which were an absolute disgrace.
Within a couple of days, I had made the sort of difference that everyone notices, and the toilets are now fit for purpose. From my perspective, they also are adequate to suit my needs as an ostomate. I tend to be quite vocal, prescriptive and persuasive about this sort of thing. Plus, the fact that I usually follow up with a congratulatory rhyme, indicating that the toilet facilities are now what 'we' (as potentially disabled people) need. 

In the past, I have had several employers, who have all agreed to alter their toilet facilities to suit my recommendations. Also, they have assured me that whatever I needed to make me feel 'comfortable' at work would be provided. 

Sometimes, people in positions of  authority, need to be educated into the problems posed to others in the workplace ( & elsewhere). 
In the 21st century, there is absolutely no reason why people with these sorts of problems should not be fully catered for in the workplace (or anywhere else). 

Just do what you want to do, to the best of your ability, and enjoy all aspects of life as best you can.

Best wishes

Bill

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Axl

All good advice, don't forget a lot of us return to work, maybe you can work half days or only a few days a week before going back to full time.

dmo101

Hello,

I also have an ileostomy. Don't do what I did on the 3rd day returning to work. I dropped a pen on the floor and quickly bent over to get it while still in my seat. That was a big mistake. The old abdomen was still very tender from being cut open. I think I hit the roof from a sitting position due to the pain.

I have never had any issues going to a restroom. You can use all the TP you need. My success is once you sit down and before you open the bag. Tear off a minimum of 4 strips of TP containing about 4-5 squares each. Fold these strips up to about the size of 1 square. Open bag, drain and use those pre-made TP squares you just made. Easy - Breezy. No need to carry around disposable wipes, but you can if you want to.

Moral of this story - Take your time, slow down. Once you are all healed you can do crazy things like bending over. Experiment at home with different ideas on cleaning your bag with the minimum of items. HANG in there!!!!!!!!

Ben38

Close your eyes, take some long, slow, deep breaths in and out. Imagine you're on the beach, topping up your tan, and relax.

Take a spare bag with you just as a precaution. Take it easy the first few days if possible to get back into the swing of work, and then enjoy getting back to living a normal life just as you did before having an ileo.

gentlejohn

I recently had the same anxiety. That is normal. The difference was I was at the movie and my grandson's baseball game. What I told myself was that I know what to do. The toilet paper may be on the opposite side. The toilet paper may be thinner. All of this can be adapted to. Concentrate and do what you know to do. If you are using deodorant/lub they come in travel size packages. Sometimes I forgot them and do without. If there is a high output problem, sometimes 1 Imodium will slow things down. Stomas are a life-saving inconvenience but not an impediment. We have to learn new skills to manage stomas. Having an emergency mini stoma equipment bag is reassuring but I have never used nor needed mine. Good luck, you will succeed.

TerryLT
Reply to AlexT

I love this advice, Alex! Also, I love the reference to "those weirdos" who wipe their butts!! LOL! We are 'special,' aren't we?

Terry

Morning glory

I always carried a tote with an extra pair of panties, change of clothes, and my pouch powder and wipes. Just in case of emergency. Put it in your drawer and forget about it and enjoy your life.

Mr.Heart2Win

The first advice would be to plan your meals carefully so you know what you will digest and how during working hours.

I had a terrible experience once, was new to the ostomy world, and my diet was still terrible. The bathroom was really nice but small, just three stalls, and I would have to empty twice. Because I was new, the amount and smell and frequency were all crazy. Needless to say, I quit, learned my lesson.

My diet is great now and very healthy, hardly bother with mine now. So, planning your diet well and having the right bathrooms and privacy are essential I would say.

Then, there is a product called: Poo-Pourri Toilet Spray, Variety Pack, 3.4 fl oz, 3-count. I buy it at Costco, they have it on special now. It truly kills the worst odors in a very short time, it's miraculous. If you can afford it, it's well worth it.

Those are my two cents.

AlexT
Reply to Mr.Heart2Win

That Poo-Pourri stuff does work well.

dscarlos

Keep a change of clothes at work too, as well as supplies to change. I always kept a go bag so I was always prepared.

Maried

Think about the worst that could happen, and be ready to recover. Always keep a couple of ostomy bags, M9, underwear, and pants, flushable wipes, plastic bag, and dry tissue. I put all of this in a small tear drop-shaped black bag (minus the pants) and keep it in my backpack or purse. I have had my ostomy for 30 years. The products are really good now, and total blowouts are very, very rare. Using a barrier ring, barrier strips, and M9 have been my saving grace.

gairdinspreagtha

It seems like so long ago even though it was maybe two months at the most. I had this absolute fear of going out and having an accident. Everywhere I go I carry a backpack instead of a purse. It's from when I used to work in a hospital. Habit. I carry a change of clothes, wet wipes, one set of ostomy supplies and of course the girly things like chapstick, breakfast bar, and some essential oil sniffers. It took me a couple trips out before I got over the fear. I do watch what I eat when I am out.

You got this!!!

Oscar23

Hydration: Working an 8-hour day (+ commute) takes discipline to keep hydrated with an ileostomy. I add extra electrolytes to my H2O in the morning. I always carry a water bottle with me even during office meetings. Also, I have a timer at my desk to remind me when to get up (if I'm buried in a computer screen), remember to drink, and most importantly, a reminder of the last time I went to the bathroom. Measuring output (urine color: light yellow, wheat, and clarity of urine)

Anxiety: Having a plan for the worst (helps to have a car key with you vs. your desk if there is a leak, basically a plan that helps you clean up, and get directly to wherever your "safe" bag is). I had a leak one time and had to walk all the way back to my desk to get my stuff. With that said, I've only had a couple of leaks in over a decade. I work in a really quiet office and I was anxious about the sound my bags would make when I walked (that was when I cared if my co-workers knew I had ostomies). It seems like ConvaTec changed the bags a couple of years ago, 'cause they sound like Dorito bags sometimes when I walk now (sarcasm). I used to take a yoga break or sometimes go for a lunch walk to get away and recharge before going back to my desk.

I hope you can ease back into the work schedule like a turtle - slow and methodical. You got this!

Maried

When my bag makes that Dorito bag noise... I had a new date ask. I told him I had candy wrappers in my pocket. Later I told him the truth but he was really puzzled by the sound. I really do not notice it much anymore.

elledubuque

I was lucky enough to be able to move to an office that had a private bathroom when I returned to work. There is only one on our campus and it just so turned out the person who had it quit over the summer and I was moved in there before I had to be back in the fall for school to start.

Trust me, a school bathroom is the last place you want to be changing out a bag. A space used by a few hundred nasty ass teenagers a day? No thank you.

I think that having your supplies and routine down is the best way to handle it. I went to a two-piece system because I didn't want to deal with having to empty/drain. I did learn quickly that having a drainable bag was smart for times when you have to release air because doing that from the base plate can be risky business.

I kept a cache of supplies in the bathroom including:

Gloves - It's just cleaner in general - no poopy fingers.

Stoma wipes and deodorant in individual packets - no opening and closing a big pack in the bathroom / less germy. Stoma wipes really help with wear on the skin if you do a full change, but also to clean the baseplate off well before putting on a new bag. Toilet paper was too abrasive for me.

Baseplates already cut to size and new bags - kept in their own zip lock bag to keep clean. No need to deal with scissors.

Little trash bags to toss everything in and tie off to keep the trash can in the bathroom from getting nasty.

Paper towels, already there, to lay out my supplies on.

Finally, a cooler with a six-pack of beer and a bottle of Valium: just kidding, but that would be funny.

I also kept a full change of clothes in case of an accident.

I also had different mini-packs of supplies in different places. Like my car, my computer bag, my bestie's office. Finally, I had a small purse with supplies that I carried when I left my office for lunch, went to a meeting, taught in a classroom far from my office, etc. for just in cases.

I want to say that for a long time I was embarrassed by my ostomy. Mine came from an emergency surgery after my resection failed. I had very little time to process I would be waking up with one right before they put me under. I was super yucked out by it and changing it was so nasty to me, I didn't want to look at my body anymore. I'm post-reversal now and still working on that with all my scars and the adhesions I can feel under my skin. That's another story for another day though!

But I finally got to the point where I was totally okay with it. If it hung out the top of my pants when I reached up to put my hair up I just didn't care. If I saw a shorter shirt that hit at the top of my pants and I loved it, I bought it. It didn't matter to me at all if my bag was visible. It became more about me just moving through my life than worrying what other people would think about my bag.

I let my coworkers know what was going on when I got back from medical leave so they would know why I might suddenly have to dash off. Or if they saw me without my supply bag or my water bottle to help me remember to always have that on me. Plus, this meant we could send poop memes to each other via text during meetings. Picture if you will the dreaded icebreaker activities... I would sneak to the bathroom and text my friends saying "if only you had a colostomy you could be hiding in the bathroom checking Instagram because everything assumes you have to attend to your bag."

When I got back in the classroom I let the kids know they might hear weird noises from my body and the best part was that even if it sounded like a fart they were safe because it was trapped in my bag. I also let them know if I had to dash out to be on their best behavior until I got back. They were surprisingly curious so I told them all about it and why getting a screening at 45 could save lives.

Basically, my situation was totally normalized at work and it made it so much easier for me that people knew what was going on vs me being stressed to hide it. People didn't look at me any differently and then as everyone has goldfish level attention span/memory it quickly became a non-issue. It was like nothing was different about me.

So good luck going back! I know it's scary, but I promise you'll be great!

jeanneskindle

I have seen a ton of great advice here. I have had my ileostomy for 23 years, but even after about eight years when I was taking some master's courses, I had an accident when I was in a group and had to rush to the bathroom. Even though it has been years since I'd had an accident, I had my purse with me which contained a flange, a bag, a clip, and some Kleenex. Luckily, I was able to get to the bathroom complete with pride and purse! My other great tip is wearing dark-colored pants or skirts then if you do have an accident, you can usually get to a place where you can change before anybody really notices. Good luck. Your ostomy has saved you!

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