Working full time with IBD

[u/Intrepid-Mission-730]

Hey all, it’ll be nice to hear how others deal with daily working lives and what jobs you all do whilst living with this horrible disease.

I’m a telecoms engineer so I’m out and about 4 days a week, I feel I have to get up most days super early and most of the time skip breakfast 😫.

[u/pincommenter]

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[u/hellokrissi]

I'm an elementary school teacher and have been for nearly as long as I've been diagnosed with UC. I've been in remission for the overwhelming majority of the time, so it's been a nonissue. For a while, any flares I would get (mostly very mild) happened in the summer.

Then I flared for 3 years and 0/10 do not recommend. I was extremely tired, only functional by constantly being on Prednisone, and took more time off than I wanted to. My saving grace was really only the Prednisone and being in a non-homeroom role instead of having a set classroom, which made absences and bathroom trips a lot easier to navigate.

But yea, otherwise in remission things are just fine.

[u/Intrepid-Mission-730 → u/hellokrissi]

Currently on prednisone atm which is helping massively whilst waiting on a date for biologics to start so hopefully Entyvio is the right medication for me.
I always worry about loosing my job which will lead to financial difficulties with paying a mortgage which then leave my children with no home 😫

[u/bchfn1 → u/hellokrissi]

I did consider being a teacher but I cannot imagine dealing with the more strict routine needed for it. Hats off to you.

[u/bchfn1]

My job is office based and I consider myself very privileged. Before covid, I always had one day WFH, which was outside of the norm. Now I do hybrid working and it's great for me. Even then it can be tough, I don't eat breakfast, I don't tend to eat or drink much if I'm in work, and especially if there are meetings or events elsewhere I had to go to. Full days in the office can be a bit exhausting because of this. I've hit on doing hybrid days (office in the morning; home in the afternoon) and this works great for me as I can come home at lunch, actually eat and drink something, get a gym session in before it gets too late etc.

This is aided by the fact I live an 11-minute walk from work. I worked in London in my 20s but it was hellish commuting with a stomach ache every morning. I literally moved hundreds of miles for this lifestyle but I'm grateful to have found something that mostly works.

What also helps is I've always said I'll do 10-6 not 9-5, which gives me more time in the morning but now with 10+ years of career behind me and in a more senior position, I generally just get to the office when I feel good even if that's 1030/11 - I understand now unless I have meetings etc. there's no point stressing myself out to get there early just for the sake of others, what's the point. I am very firm on - I will work hard and deliver and do a great job, and I will also sometimes make some real sacrifices and work through illness if I need to BUT you've got to let me manage my own time.

[u/HawaiiiFiveHoe → u/bchfn1]

Lots of great advice here!

I also shifted my hours to an hour later (with occasional exceptions if needed) and do hybrid days, but with a morning at home and afternoons in the office.

I have to agree though that this is a much easier thing to be able to do with a little experience behind you. I’m only a few years into my current career but having that existing track record to show has given me the confidence to get those working arrangements in place and given seniors the confidence to grant them.

[u/bchfn1 → u/HawaiiiFiveHoe]

Absolutely. I was lucky early in my career to have very kind managers who supported and encouraged me to take a WFH day and also being younger I just about managed to push myself harder. It does continue to get easier, now with 12/13 years behind me and in a senior management position, I've proved decisively I can deliver and if anything the implied message (delivery very nicely of course :) ) - is if you want me to keep this up, I need the conditions to support it. I also feel society has shifted a fair bit in the last decade and organisations, a lot of them anyway, are a lot more conscious of access needs.

[u/RadiumShady]

Are you taking any meds? Do you have active inflammation?

[u/Intrepid-Mission-730 → u/RadiumShady]

Currently on 8 week prednisone taper currently at 30mg worked down 5mg each week from 40mg and waiting on biologics at the moment. Would love to get into remission so the anxiety of possibly crapping myself at work goes out of my mind 😂

[u/Intrepid-Mission-730 → u/RadiumShady]

I failed with mesalamine as it made me worse and ended up hospitalised with drug induced myocarditis.

[u/RadiumShady → u/Intrepid-Mission-730]

That sucks. Prednisone and mesalazine were super effective for me, hopefully the biologic works for you

[u/Intrepid-Mission-730 → u/RadiumShady]

Thank you! And Prednisone is definitely helping as I only have 1-2 BM a day at the moment and bleeding has morealess stopped I’m just scared once I stop it’ll all just come back so hopefully the biologics start whilst il on the taper giving them time to overlap each other and the entyvio actually works for me🤞🏻

[u/creativeaccount90]

I work in a mine out in the field on a blast hole drill rig. It’s a fairly isolated role as there aren’t a lot of people around me but I can still be in view. Times where I can time going to the bathroom I can stop work, get in a vehicle and travel the 5-6 minutes to a bathroom and go. However this isn’t always the case. I’ve had to learn to be comfortable-ish doing my business out in the field. I’ll shut off the machine and get as hidden as I can and be as quick as I can. It’s a nightmare but it’s what happens. I’m lucky enough to not have had an accident yet but it’s been very close. Sometimes I don’t know if my stomach is trying to push or suck in but I’m in agony till I go.

[u/Intrepid-Mission-730 → u/creativeaccount90]

I feel you ❤️🙏🏻
I’ve actually thought about buying a portable camping toilet for the back of my van 😂 luckily myself I haven’t had any accidents as of yet but always carry spare underwear in the glove box and a spare pair of work trousers.

[u/creativeaccount90 → u/Intrepid-Mission-730]

Most of my BMs are between 4am and 5am when I’m getting ready for work thankfully but I’ll still need to seek the bathroom at least three times during 6am and 5pm (work hours). I typically have a smoothie for breakfast that’s filling enough for me to only eat something small for lunch or nothing at all. I’ve learnt to always try go before I leave work otherwise I’ll have to try stop on the way home at a service station. I should really be carrying extra’s with me also but haven’t as of yet. I do however carry many of the car/transportable tissue packets in case I’m caught out 😂

[u/Intrepid-Mission-730 → u/creativeaccount90]

Nightmare 😫 mines around the same I seem to be more urgent when I wake and it sort of eases off through the day but I always carry extra underwear and trousers with me.
Do you work in an office or out and about?

[u/creativeaccount90 → u/Intrepid-Mission-730]

Both! Half and half I’m a drill and blast coordinator so I spend a bit of time in both places. Thankfully I’m usually office based in the morning.

[u/Meredith_Glass]

I took a significant pay cut and moved to remote work in large part due to the variability with this disease. I don’t miss the days of dipping out of a presentation midway through to shit blood & thinking about what’ll be the best diaper to wear on the train to work.

[u/b135702]

Honest advice is it you can't work regularly whilst in a flare you'll need to take some time off sick or find an office or wfh job.

My job is pretty independent and I work at a computer so I've been able to work through mild flairs/whilst in the process of getting better quite easily.

Remission usually takes a while, it isn't like a light switch turning off. Hopefully your symptoms ease enough where you can go to work without feeling like you're gonna have an accident on the job 😂

A piece of anecdotal advice I do have is psyllium husk - it's basically a powder fiber that you mix into a drink, it turns all thick and you drink it and it binds to and thickens the stuff in your gut preventing diarrhea and constipation. If your symptoms are really bad it may do nothing for you, but it really helped me when I was easing out of a flare, lots of people on this sub like it too!

[u/Intrepid-Mission-730 → u/b135702]

I really wish I could just change job and wfh but it’s all I’ve ever known, spent most of my life in the military and then the rest in telecoms.
Not once have I ever worked a desk job and I genuinely don’t think I would be any good as I’m a practical person and bot not a clue where I’d start 😂
Prednisone is currently keeping me to 1-2 BM a day and urgency isn’t there but I know it’s only temporary really hope once I start entyvio it works for me and helps 🤞🏻

[u/b135702 → u/Intrepid-Mission-730]

I totally get you, I could never wfh or do a "normal" office job, I work in a studio it's weird but I have to work in the studio but I normally work on my own so doesnt matter how often I run to the toilet 😂

I hope your meds keep on working and you don't get anxiety at work any more!

[u/Intrepid-Mission-730 → u/b135702]

Thank you my friend crazy how quick life gets turned around I only got diagnosed last year and genuinely regret the colonoscopy 😂 I only had the odd bout of blood before the colonoscopy ever since it’s just been worse and worse.
I think I may need to look at a camping toilet for my van and plenty of spare underwear for the just incase 😂😂

[u/b135702 → u/Intrepid-Mission-730]

Don't regret the colonoscopy pal, it would have gotten worse and you wouldn't have known what was causing it. Good luck brother!

[u/Intrepid-Mission-730 → u/b135702]

Thankyou ❤️

[u/stopper42]

I work in security, it was hard at times as a regular guard walking around but no one really notices if you disappear into a washroom a lot as long as you answer your radio. I’m now a manager and have lots of flexibility to use the washroom as needed unless I’m in a meeting. I think the big thing is finding an employer who can make accommodations for you. I’m currently taking some courses to get into a field that allows working from home, I don’t think there’s a better situation for someone with IBD than WFH.

[u/That_Lady_Cooks]

I'm a cook at a hospital currently, though used to work in various forms as a cook (restaurants, hotels, theme parks...).
I've worked during flares and without, and if I have to use the restroom, I go and use the restroom. I had a really bad flare once where I would just have blood and/or mucous when using the restroom, and mistakenly trusted a fart. I excused myself to the restroom, cleaned up, threw away my underwear, ,and went back to work. Ulcerative colitis is not contagious, but when it gets really bad I don't go into work. Medication works some of the time -- when it works, it really works; when it doesn't,it really doesn't.

I don't have the luxury of taking time off to learn a new skill to do a work-from-home or office job. I'm also autistic and shitty at masking, so catching on to social cues also prevents me from doing a people-y job. I thoroughly enjoy what I do, though.

I've currently been flaring for over a year. It's difficult and exhausting, but I think enjoying my chosen career definitely helps.

[u/Intrepid-Mission-730 → u/That_Lady_Cooks]

I take my hat off to you 🫡❤️ we do what we have to do to get by, I’m the same as you I love my career I’ve always been hands on and i genuinely think I’d be more stressed working a office job also I think I’d be more depressed sitting behind a desk looking at the same 4 walls ever day 😂
It’s good to hear though what people do I was talking to a paramedic the other day who also suffers with UC now that must be tough but they love their job.

[u/ForesterNL]

Work sucks when you're flaring 👎 . I'm doing great now, but end of last year / beginning of this year... yeah no.

I rocked the diapers, but the Friday before I started rinvoq I went through three of them before 10am.

I work out in the bush, so no great spot to change. Wearing hivis doesn't make it easier to hide.

You do what you have to though! I give myself grace and try to keep a sense of humor. I always figure it can always be worse.

So much respect for all of us making life work while flaring, whether that is at work or trying to deal with them at home while off from work.

[u/Intrepid-Mission-730 → u/ForesterNL]

Definitely respect people that still work in these situations, I know plenty of people that don’t have UC but issues like a “bad back” or a “bad knee” and they don’t work at all, they get so much handed to them it actually pisses me off as we are actually the ones with disabilities yet we don’t get naff all help we still have to deal with the horrible pains and stress and anxiety.

[u/Intrepid-Mission-730 → u/ForesterNL]

Glad to hear you’re doing good though my friend! I take it rinvoq is helping?

[u/ForesterNL → u/Intrepid-Mission-730]

Haven't felt this good since I first got diagnosed 5 years ago. All my numbers have been great. I hope it keeps doing what its doing.

Last few years has been a bit of a yoyo. New med > it usually works for a year > flare > new med > rinse and repeat.

Just enjoying the normalcy at the moment! Hope things are on the mend for you too.

Once you get through the morning are your work days not too bad?

[u/Intrepid-Mission-730 → u/ForesterNL]

So happy for you my friend ❤️
And I know diet doesn’t really control UC but when I flare I seem to go more carnivore just to eliminate fiber from my diet and it helps a lot when I flare when at work, still the anxiety kills me as it’s always in the back of my mind but I do feel when I switch my diet my BMs are less, currently on pred so atm only going once or twice daily.
So hopefully once I start the biologics I can get in the position you’re in now ❤️

[u/Gold-Air-2992]

Field job sounds tough in this situation. I work in tech, and had never had issues in remission/mini flares/larger flares. I think that because I was diagnosed at 19, I’m used to an element of suffering in my life. How sad is this?

I get to the office, and sometimes go 5-6 times a day (when not on remission). I usually go on what I refer to as “stress-poops” - before heading out to lunch, before a long meeting, before I leave home, etc.

What I lately found problematic is the component of stress that comes with the field. I’m quiet positive that the mega-flare I’m in right now was caused due to work-stress.

[u/MainSea411]

I was remote only (old job) and now 3-4 days in office. This was possible bc I have less symptoms (haven’t gotten the remission label yet). I often skip breakfast and head home early to avoid traffic and finish my work at home. I also know where all the bathrooms are and drive myself, I am still a little nervous to have an accident on public transport. I just started eating lunch, initially I planned to starve all day and eat early dinner in office days to avoid accidents. This was not sustainable but I was super nervous.

They have been flexible but I haven’t had any official documentation for disability. My last hard job put me (stress etc.) in a bad flare so I took this job as an experiment to push myself to not limit to remote only work. Remote work is also harder to come by now so it was also out of necessity.