Out of the Bag: Working

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon

I mentioned last week that I just started a new job. I am right at three weeks into it and it has made me think about taking your ostomy with you to work. It’s a big deal.

I have had three different jobs since getting an ostomy. I had quit my job before going in for my surgery, so I didn’t have a timeline that I had to stick to in order to get better and get back to work. About five weeks after my surgery, I started to look for a job again. I knew I wasn’t quite ready to get back to work, but I figured I should go ahead and start the process since jobs don’t usually just fall into your lap these days. I ended up taking a nanny job for a 4-year-old and a 2-year-old which I started right about two months after my surgery. It was a good job to start the transition, because I had a lot of flexibility. There were only two real issues I had, which were back-to-back days where I had a leak. At the time, I hadn’t thought about bringing my supplies with me and I had to go home both days. (Why I didn’t think about that after the first day, I’ll never know.) Fortunately, the first day the kids’ grandparents were in town, so they stayed with the kids and I ran home, just saying I had a small emergency that I needed to take care of. The second day, I only had the youngest with me, so she took the trip over to my house while I fixed it up. I never even mentioned my ostomy to my employers at first, but I eventually told them just in conversation, which came about somewhat naturally since they were both doctors.

Since then, I have had two more corporate jobs. Both of them I have been somewhat open about having Crohn’s and an ostomy. I had to at my first job because I was out for several weeks having surgery and I explained a little about what I was having done, but I kept it in our section of the office. I never felt that anyone treated me differently because of it.

arca tech systems job work career corporation stephanie hughes stolen colon crohn's osotmy colitis blogOnce I started applying for other jobs, I found that I had to talk about it in some capacity. As I would go into interviews, I would be asked about my somewhat sporadic work history over the past two years. I would tell them, in an effort to be honest, they I had dealt with some health issues that lead me to quit my job and I eventually had to have surgery, but I am doing great and back to 100%. So while I may not have explicitly said that it was due to Crohn’s disease and that I had an ileostomy, I think it was pretty obvious because most of my volunteer experience is with CCFA and the Ostomy Association.

At my previous job, I worked so close to home that if I ever had an issue I’d just run back quickly and fix it. Now, I keep a bag of supplies with me at work, just in case there is an incident. (But a quick tip, if you ever are in a bind, I have used pieces of gauze and bandaids from the first aid kit to hold me over for a little bit if I couldn’t change it right away!)

When talking to an employer, I think it is completely up to you if you want to talk about having an ostomy. I don’t think it is any of their business if you don’t want them to know, unless somehow it becomes a persistent problem that you feel obligated to explain to them. If you do need to run home at some point, I would just mention a small emergency, but let them know that everything is alright, you just need to take care of it. I have found that most people are very understanding. But if you do want to share your experience with them, I say go for it! As I mentioned before, I haven’t felt that it changed any of my relationships (for the negative, that is).

Going to work with an ostomy can be a little scary. I don’t like having to empty my bag in a public place, but it’s something you have to get used to. Having supplies with you can alleviate some of the worry in getting a leak. Overall, at least in my experience, I don’t feel that having an ostomy has hindered me in my work in any way.

What has your experience been with working with an ostomy? Do you tell your employer or co-workers? Have any of you run into any issues? 

14 thoughts on “Out of the Bag: Working

  1. Norma Albin

    Hi – I went back to work in a school right after my ileostomy surgery three years ago. I was pretty open with everyone and my principal actually told me to use his bathroom for privacy, if necessary (it’s the closest adult bathroom to my room). I NEVER leave my home without 2 changes in my bag. I’ve had 2 leaks, both times I was able to get to the bathroom before there was a noticeable mess.

    While having IVY is a bit of an inconvenience, I feel so much better now.

  2. Molly B

    A bridge most don’t have to cross and you have done it with such courage! I am very proud of you! Good luck on your new job and long drive!

  3. Amber

    It seems as though any time I mention having an ostomy, the first thing people do is look down at my abdominal area!

  4. TU

    I once had a leak right before I was supposed to give a presentation at work! I calmly changed my bag and the presentation was breeze compared to the mental stress of a leak. In short, it makes you a stronger person!

  5. Shaun

    Thanks for sharing, Stephanie!

    I’ve been lucky to only have once small incident in my three years of working in advertising/PR after graduation a few years ago. My health is only something I bring up if I need to, but I find that co-workers and bosses are always more than understanding.

    I will say that I do get a little self-conscious during those days where I get little gas noises during lunch on an empty stomach. 🙂

    At the end of the day, it’s important to remember to always put your health–and yourself–before work.

  6. Nicholas Rosenbaum

    Everyone I work with knows I have Crohn’s. I told them as things came up and they were fine with it. I told my boss whenever it was decided I was going to have my colon removed. Everyone has been completely understanding and they don’t judge when I have to use the bathroom a few times a day. They asked a lot of questions at first and sometimes they still do. Thankfully, I haven’t had any leaks at work (knock on wood). I do have extra supplies with me and all the meds I need and an extra set of clothes just in case. It’s been 2 years and I’ve never needed the extra clothes, but I know if I take them home I’ll end up needing them. Thanks for sharing your experiences with us!

  7. Michael Evans

    Hi Stephanie, I’ve had my ileostomy for seven years now. My only incident was while traveling for work. Three months after surgery it busted open at night at the hotel. It was a royal mess! I’m certain the cleaning person was not too happy. Thankfully I packed plenty of supplies for the trip. However, I was not all that open about what my surgery entailed with my co-workers, till after I got an additional cleaning bill on my hotel room stay, and turned it all on expenses. Cat was out of the bag at that point. I’ve noticed nobody treats me any differently at work. The TSA however at the airports, well that’s another story. I’ve been stopped, given additional screenings, pat-downs, and questioning in a private room several times. I’ve come to expect it. I even have a card I show them from the CCFA, but they don’t really care about what card I flash them. All in all I’m happy with my ileostomy, and would never change a thing, it’s the best thing that happened to me!

  8. Robert

    Thanks for your site Stephanie. I had my ileostomy surgery last April, and am now approaching the proctectomy in March, and then it will all be permanent. In that time I have not been working. I am actively pursuing returning to my career this summer however, and am definitely worried about the bag in the workplace. Not so much from the standpoint of leaks as I rarely ever have them and usually only at night, but rather the NOISE. I get so much AIR in my bag all of the time. and so quickly. But the sounds that come from my bag are like farting and pooping noises that are pretty darn loud. The thought of that happening in meetings (which is inevitable) is really upsetting to me. I also work in the arts industry where you are attending performances (music, theater and dance) that are QUIET, and the thought of my little pal making a big fart at that moment is really enough to make me want to change careers!

  9. Cindy

    I’m very nervous about going back to work in 2 weeks. I’ve been a manager at a retail store for 34 years and love it. The problem that I’m going to have is that for 4 hours every morning, I will not be able to get to the restroom because I’m the only one in the store. 7am-11:00. If I eat very little breakfast, my bag hopefully won’t fill up, but it will fill up with gas. I know that it will balloon up and be noticeable. There is no way to avoid the schedule. I haven’t been working since surgery 5 months ago and some bad chemo issues. Does anyone have any advice?

    1. The KC Ostomy Association

      My ileostomy was in 1984 and I use a 2-piece. To remove gas, I discreetly “burp” the bag by reaching under my clothing and separating just a small corner of the bag from the flange and carefully pressing it closed again. If odor is a concern, there are products that remove odor. I hope you have a little corner with enough privacy!

      A few times the ostomy has even been an advantage – e.g. when traveling in places where facilities are poor since I can stay standing while changing just the bag.

  10. Jen

    I just got my “surprise” bag last week after surgery had complications. I’m returning to work in another week. I work in a mobile home type sales office and the single stall bathroom has no windows and a very week fan. I’m worried about odors. I can use a bathroom in the building across the drive, but people will notice, which is embarrassing. They know my surgery was for a colorectal polyp and they’ll know there were complications because I’m having a reversal in two months.

    I work in a retirement community, so it’s a comfort that lots if our residents have incontinence and nurses are across the street too, I guess.

    1. Stephanie Hughes Post author

      Jen, I hope you’re doing well after your surgery. I know it’s a big adjustment and I imagine especially so when you’re not prepared for it. A couple of things you can do: I always lay toilet paper down in toilet beforehand and empty on top of it to help keep it from sticking. There are options for things to put in your bag that help with odor. There are also sprays that are specifically made for these kinds of odors and so a good job of getting rid of the smell. If you want to email me I can give more specific suggestions. Best of luck with getting back to work!

      1. Gary Deary

        I am a mechanical fitter in factories I have had an ilostomy bag for 7 years, I only had 2 leaks because I chose to bend over something while lifting or straining while my bag was half full, now in my new job after surviving liver cancer I had to tell our HR I HAD A BAG,I’m not sure this was legal
        Regards Gary


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