Coming Out: IBD and ostomies in the work place

I have been working at my current job for a little over 4 months now. However, it was only a couple of months ago that I told my boss about my IBD and ostomy surgery, and only a few weeks ago that I “came out” to one of the girls in my team. Several of my co-workers still aren’t aware. Why, I hear some of you asking? To be honest, I am not really sure myself.

Both of my previous employers knew I had Crohn’s. The first one I told not long after being diagnosed. I was taking more and more time off for doctor’s appointments and sick days, and as my symptoms worsened, I felt it was important that someone in the office knew, so I told my boss. He was sympathetic and understanding.

After a few months off work including some time in hospital with a bad flare up, I found a new part-time job closer to home. Here I was upfront about my condition in the interview. I was given the job, and told most of my colleagues within the first few weeks that I had Crohn’s. Everyone was so supportive and caring, and happily filled in for me when I was unwell, including the weeks I had to have off for my surgery. They were ecstatic for us when I was finally well enough to travel, and I resigned to go on our extended overseas trip.

When we returned from our travels earlier this year, it was time to get back to reality and find a job. I registered on a job website and started applying. I had several unsuccessful interviews. I had to question … Was this because of my health background and condition?

Working on the toilet
Working on the toilet

Then I found a great role. Unless I was explicitly asked, I decided not to mention my Crohn’s or surgery in the interview. There was no need. It has no bearing on my competencies or ability to perform at work. Even though I know I am just as capable as the next person, would my prospective employer understand? Would they be concerned about potential sick leave? I feel as well now as I have in a long time, and haven’t had a sick day so far this year. If it was going to impact my ability to fulfil the role, then I would be completely upfront about it. But it wasn’t. So why did I feel so strange about concealing it?

I got the job, and based on feedback have been performing well so far! I was even offered a minor promotion to manage a new office that has just opened. I still hadn’t mentioned my Crohn’s or surgery to anyone at that point.

It came up a few months ago when I needed to leave work early to speak at a Crohn’s and Colitis support group meeting. My manager asked me what I was speaking about, so I told her. Of course she was completely fine and it wasn’t an issue at all.

I didn’t want to lie but for some reason I felt really nervous telling her. This was so silly as both my previous employers knew and I’m not ashamed or embarrassed by it. In fact, I want to talk about it and increase understanding and awareness (hence this blog). So why was I so hesitant?

I think the big thing is that I don’t want to be judged or defined by it. I especially don’t ever want anyone to feel sorry for me because of it. Yes, I have an IBD and an ostomy, and at times that can suck, but it is only one part of me and my background. I am so much more than that, and I am capable of so many things regardless of it.

I also don’t want others to feel embarrassed around me. One of my closest co-workers came back from a bathroom break recently complaining about the smell in the toilets. She didn’t know that I had just been and emptied my bag, so I fessed up and told her it was probably from me. Instantly I could sense she was a little uneasy with where the conversation was headed. I tried to add a bit of humour to the situation, but that didn’t seem to be helping so I quickly dropped the subject. I have since had a really good chat with her outside of work, and now that she understands in more detail, I think we are both much more comfortable. She even said that it is not so much that people are embarrassed by it, they just don’t know what to say or how to react. I am comfortable talking about poo and toilets, but not everyone is. I hope to help change the public stigma around this, but it takes time, and I need to remember that too.

My manager has since mentioned that I have Crohn’s to several of my colleagues without my knowledge or taken me by surprise and said something in front of me. This is a bit annoying, but at the same time I am glad it is out in the open. Some people are interested and ask questions, some aren’t phased either way, and others don’t want to know about it at all. You can usually sense this pretty quickly.

It felt so good getting it off my chest. For those first few months it felt like I was hiding something that there was no reason for me to hide. I felt guilty for not saying anything. Would it have jeopardised my chance of getting the job? Maybe? If that had been the case, is that really the kind of place I would want to work anyway? Probably not. I think the important thing and my lesson learned here is that if I am not awkward about it, then hopefully others won’t be either. Now when my stoma makes its funny little farty noises, my bag blows up under my clothes, or if I stink out the work bathrooms, at least my co-workers know why!

I would be really interested to hear your opinions on talking about IBD and ostomies within the workplace. Does anyone else worry about telling their co-workers and why? Has anyone not been offered a job or been fired because of a chronic illness? Please share your comments and experiences J

Until next time, Laura x


2 thoughts on “Coming Out: IBD and ostomies in the work place

  1. Hi Laura,

    Boy you are going to get sick of me commenting on your posts, as I make my way through your back-catalogue, haha, sorry in advance!

    It’s funny reading this, not humorous funny, just random-funny. I have worked in lots of jobs since being diagnosed and you post brings back some cringe-worthy moments, which I would much prefer to forget. At the height of flares I felt embarrassed to have to always be running to the loo, hoping I made it on time. I used to serve at a counter in a major retail store, and I would have to rush off even with customers waiting in line or even mid-way through serving them. Lots of people at this workplace knew about my condition because, like you said, I was sick and at my worst during my time there, I disappeared for weeks on end and when I would reappear I would be thin, gaunt and tired.

    I then worked for the same company in a call centre and this too was hard, being on the phone in a small office for extended periods of time, it was also a stressful job, which I’m sure didn’t help things! Most people I worked with knew about my Crohn’s but I’m not sure many of them ‘really’ knew about it, and the impact. I would hide it well and I would pretend to be ok, even when I wasn’t.

    I recently left a job of 4 years, working for a University, which was amazing. I had the worlds most supportive boss, and this happened to be the job I was in when I got impossibly sick and had the flare-up to end all flare-ups (literally), which inevitably lead to my emergency ileostomy surgery. A few weeks following being discharged from hospital, I went in to see the HR lady and my boss, and told them openly about the surgery and ‘my bag’, in a way they could understand.

    I decided not to tell many people at work, but those closest to me knew or I eventually told them, if I was having a bad day, or had a leak and needed to duck out quickly. I think the reason I choose not to always tell everyone is that it’s one thing that I can still control, who knows something intimate and personal about me, plus I was always worried about the bag defining me, like you said, and I didn’t want to be known as ‘the girl with the bag’, instead of Bec, the girl with other great attributes….like being very funny and a great dancer…maybe 🙂

    My boss at the university said to me at the time of my surgery, “Bec, your health is the most important thing in life. It’s not like we’re launching satellites”. This quote still stays with me to date, and I hope to be able to say it to my own staff one day.

    My husband and I recently moved from Victoria to Perth, and I started an exciting new job. I decided to try and be honest with my boss and colleagues,l but only when I felt comfortable. While in a one-on-one catch up, I mentioned to my boss about my need to drinks lots and lots of water due to Crohn’s etc, then she told me that her sister-in-law has Crohn’s and that she has an ostomy. It was amazing, I instantly knew that my boss understood, even the basics, and I was quick to point out that I have had the same surgery too. It was nice to know I would be supported, and we also discussed her sister-in-law’s recent attempts to have kids, and that she is now pregnant! That was nice to hear, as I had been open also about our reluctance to have a family, worrying about what might/might not happen.

    Anyway, sorry, long comment. All in all, I think you have to go ‘with you gut’ when you think about telling people about your illness or your ostomy. It doesn’t define you or your capacity to be a valuable and important employee! Bec x

    Liked by 1 person

    • Hi again Bec!

      No need to apologise! I love reading your comments!

      Being on the phone or serving customers face to face is the worst. I’ve had to put phone calls on hold to rush to the toilet many times. Not fun, but we know what the other option is. Even less fun. And I’ve had that happen too.

      I am so glad you’ve had bosses who support and understand you. I think we’re lucky to have such supportive workplaces as you hear stories of many people with IBD who don’t.

      Your point about who you choose to tell being one thing you can control is interesting. I’d not thought of it like that before. Going with your gut is great advice. I think you can tell when someone will be open to your sharing, and it’s important you’re comfortable with it too.

      Thanks again for sharing Bec 🙂 Having an ostomy bag definitely doesn’t define us and I’m sure we both have many other attributes that make us valuable employees and make us who we are. Unfortunately being a great dancer isn’t one of mine though 😉


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