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Proving Your Colitis to Your Employer (When you need time off)

Hey UC’ers,

I received an email recently and I am hoping that others will benefit from the questions and as well responses from others. I myself never had any issues with needing to “prove” my condition when I needed time off several years ago after my diagnosis, but I know that is not the case for many UC’ers.

So please read through the snippet from Hetty’s email to me, and if you have any advice or a response, please add your comment below. Here’s the email:

My problem is that my waitressing job want proof of my condition as sometimes I have had to call in sick last minute if I’m having a bit of a UC moment and it’s quite difficult to keep running to the toilet whilst waitressing! So if my frequency is particularly high one day I don’t want to go in. Sometimes I just also feel particularly run down, I might have had a bad night or just having a day where I feel particularly weak, nauseous or faint and I make the decision to call in sick to give my body some rest. I always feel guilty doing this like I should just plough through as I’ve had it for so long I should be used to it by now, but to be honest letting myself rest sometimes when I feel ill with UC is part of how I treat it.

But them asking for proof and an explanation has got me worried. Are they trying to get rid of me because I’m causing too many problems? Has anyone else been asked to prove their condition? I had to get it assessed once for a previous job who concluded that disability legislation applies in my case and that the changes needed to be made to make the job suitable would just be to give me easy access to toilet and to allow for days when I needed to have hospital appointments and that I was at risk from needing to go on long term sick if worse case scenario it escalated to the point of needing surgery.

How many sick days to other UCers find themselves taking from related illness? Am I just being a wimp? I think I’ve had 3 or 4 sick days in the last 6 months from it. Has anyone declared themselves as disabled from UC and has that helped or hindered employment? I’ve read of NACC that it’s possible to do but I don’t really know what it entails, who is eligible and why and if it helps anything?

If you have any advice on the matter I’d be very grateful.

Thank you again Hetty for your message, and I hope you receive many ideas from others.

Best regards to everyone,


-Adam Scheuer

21 thoughts on “Proving Your Colitis to Your Employer (When you need time off)”

  1. when I was very sick after I came back to work only told my team leader the others knew I was sick I looked very sick still but they didn’t know what I had. then I eventually was comfortable enough to finally tell my team my condition. when I have to have a day of work or if I have had a bad morning /night I usually txt my team leader I explain that I have had a situation and need to go back home to change or I had a bad morning or night and very tired so be in late or to tired to come in. I also have a handbook that I got from my colitis and crohns Australia site which I printed and one person who had no idea what I would go though each day with my UC I gave her a copy to read after she read the handbook she started to understand why I was unwell some days more than other days. sadly some people do no understand that you have a chronic disease you can look ok on the outside but you are very sick inside.

  2. I’ve had to change jobs a couple of times and that’s okay. UC really forces you to think things through and make decisions that are best for YOU, especially taking care of your health…if you don’t have your health then what do you have?
    You do the best you can with what you have and try and find a suitable job and hopefully a sympathetic/empathetic boss. Remember, they are trying to run a business, too, so give as much time/notice as you can.
    Your Dr. may be able to help and get you some time off you may need to recoup with a Dr.’s note(legally required, I think, after a few days anyways).
    Best of health all…let’s keep our fingers crossed for the upcoming winter cold and flu season, etc., to be as minimal as possible!

  3. This is alarming and disgusting treatment of human beings. Ulcerative colitis is federally protected under the ADA. Get FML protection for your disease and your job. Personal details should not be disclosed under this law. Your rights to privacy and protected health information are no different. You should be respected and protected equally as if you were a diagnosed with cancer. I found telling too much information makes people believe disbelievers and causes more problems. They simply do not understand and are ignorant. All in all employers do not respect people with IBS and digestive diseases even though they are federally protected. Get protected!

  4. My employer does not provide sick days. We have to file FMLA. I was diagnosed in Jan 2014 and my Dr filled out my papers for me stating I had UC and it considered a chronic illness. I get 1250 hours of FMLA per year but only 80 hours are paid. When I am sick I just call in and it gets approved. If I am off work more than 5 calendar days it turns into disability. At that point my GI is required to provide proof to our disability group that I am unable to work. He submits all notes from office visits, blood work, test results etc…
    I am eligible for 26 weeks each year of full paid short term disability each year before it goes long term. I have been off work since August and pending surgery to have my colon removed.

    1. FMLA is def a good thing , or you can request 12 workweeks unpaid job protected within a 12 month period and keep your medical benifits as if you were still working full time . Request intermitittent use , or a reduced hour or part time work schedule . ( bummer is its not paid ) if you do want compensation you would have to apply for the disability .

  5. My name is Nick. I am 29 years old and I’ve had UC since 2011, but had my first really debilitating flare in September of this year. I was in the hospital for two weeks, lost 25 lbs, and ultimately wound up being prescribed Humira. I’m better now and back to work, but still not 100%. I am an attorney – and a relatively young one which makes me low man who gets the grunt work. I often have to drive long distances early in the morning for hearings and meetings. In my current condition, this isn’t something I can do. Prior to being hospitslized, my boss noticed I often had to excuse myself from office meetings, but he didn’t know why. Once I went to the hospital, I had a private telephone conversation with him and explained my condition and worked out an understanding where I would take on more in-office research and writing assignments to free up other associates to cover more out of office stuff. This seems to be working out so far and I’m getting close to being able to go back to taking on out of office duties.

    In the meantime, I stay a while later each day to make up for the time I spend in the restroom during the day (as well as for the time I was in the hospital). My boss and co-workers who have covered for me notice this and it seems to go a long way.

    As for handling questions about my condition, I am careful with the words I use to describe it. Rather than saying “colon,” I say large intestine, which seems to have a less embarrassing connotation. I also say the condition is an inflammatory one which causes bleeding and ulcerstion, rather than causes me to go number 2 fifteen times per day. Additionally, I’m lucky to have a good GI doctor who volunteered to call my boss while i was in the hosptial after he found out I was stressed about the security of my job.

    I was hesitant to be open about my UC because, as we all know, it’s an embarassong condition. However, I’ve found that my Co workers are understanding and empathetic and you may find that opening up a bit may relieve the stress of working with UC quite a bit.

  6. My employer was very accomodating luckily – but i was in hospital on IV Pred so it was clear i was sick and i still had to provide a doctor’s note. Now i have bad insomnia but i find it impossible to call in sick just because im “tired” even though some days i can barely get out of bed. I work a 12 hour day with 3 hours of travel so i am thinking about a change of career as the only solution to help me get well.
    Best wishes to everyone x

  7. Hi Hetty,

    Luckily I was at my job for several years before I was diagnosed and had close relationships with my co-workers and supervisors so everyone knew I was dealing with a chronic health condition and no one really questioned why I was calling out so much. If they are asking for proof, it might help to bring in a doctor’s note that says you have UC and that it is a chronic condition that often flares up and requires resting at home. There was a time that I was in a flare (not a terrible one, but bad enough) and it was making me depressed. I asked my doctor to write me a note to excuse me from work for 3 weeks and my work kindly accepted it and held nothing against me.

    During my worst flare, I tried to apply for disability and I was initially rejected and didn’t try to apply again. But, I hear that most people have to apply more than once. I think if you are really sick and often in the hospital, disability is a very good option.

    Just know when you are pooping so much, it is very tiring and can be painful and embarrassing and it is very very understandable why you want to stay home. Try not to feel guilty, but I know it is hard.

    Hope you feel better,

    1. Totally agree Kristin,

      It’s a weird mix of feeling guilty about not being able to perform as usual when symptoms strike, but it’s also hard to try and hide it and act/perform as though all is fine.

      I myself had good luck with applying for disability in California back in Dec 2008 two months after my diagnosis when I was sick. I did include written statements from my GI doctor, so that may have helped, but I woudl for sure try it if you are not able to work for a considerable amount of time.

  8. Yup! It was simple, I went to my GP, who also knows about my condition and also to my Gastro, and both wrote me notes, and filled out my form for me for my condition that my employer asked me for. Done. I work in a call center and believe me, these jobs are probably listed as one of the biggest stress case jobs out there. You got let your body recover when it needs: day off, walks, and most importantly good good nutrition. I started feeling so much better after taking “Progressive Nutrition Vege-Greens.” Mind you we all have something that works for one person than the next. It took about half the large container before I started to feel better, but it makes me feel good. I find I also removed a lot of condiments from my diet and started eating more veggies (ie boiled carrots and potatoes). I use to also take Renew Life Ultimate Flora Critical Care 50 Billion – – I find that bacteria strain B. Longum is the big dog that helps. Good luck with your work.

  9. I am also lucky to have a sympathetic boss. He doesn’t know the exact diagnosis but knew I was seeing a Gastroenterologist. When I said I was having problems or needed a day off, I indicated it as a GI problem. Enough said. I also have been lucky enough that this condition has not debilitated me to take more than a couple of days off in a row.
    Best of luck with your boss and keep the stress to a minimum.

  10. I imagine it all depends on current labour legislation in force in your country or state. I have been retired for eight years, but if I remember correctly, anyone reporting sick only needs a doctor’s certificate from the third day onwards, and this in order to obtain sickness benefit. The company can opt to send its own doctor to make sure you’re not malingering and your own doctor not simply helping you out. Furthermore, we are eligible for a number of sick days on full pay, a number on half pay and when all these are used up, we are then on no pay, so most employees try not to overdo it. Another point: sick leave entitlement is based on a calendar year, and cannot be carried over from one year to the next.
    In my case and my position at work, I had no problem, as whenever I needed a doctor’s note, he would provide it as he was fully aware of my condition, and having been my doctor for a long number of years, he trusted me enough to know I wouldn’t be faking it.
    However, I remember one particular instance during a flu outbreak, when my doctor was abroad, and I called the company doctor who, being snowed under with work, simply told me over the phone to take three days off and then report for work. I foolishly followed his instructions and reported back to work with a temperature and still showing all symptoms of flu. Another company doctor was called in and I was given a seven-day note.
    A system which is slowly gaining ground over here, though generally in more serious cases, is that when an employee runs out of sick leave or even vacation leave, either for himself/herself or to look after an ailing family member, his work colleagues are allowed to chip in and donate days to him/her from their vacation leave entitlement in order to help out. Most employers accept this system. I have always felt this to be a lovely way of helping out a colleague.

  11. I have been harassed by my manager, and a couple times she tried to fire me when I had been out due to a flare. Even when I was hospitalized it seemed she wanted me put the door. Your best bet is to get your doctor to sign and medical leave form for intermittent leave. It covers you for when you have to call out. I am currently in a flare and I am having to do the same thing. Even if you have a empathetic boss they are looking business wise and you should too. There is no way to prove anything to them, even if you filled a specimen cup with blood. Get your paperwork signed by your doctor. If you don’t have a human resource depth at your job, ask your dr office where to get copies. It is a law that you cannot be harassed or retaliated against for being sick. Good luck to you

  12. I take advantage of FMLA, using the intermittent leave. I have to renew it every 6 months; when I can tell a flare is coming I am covered. If I have to be hospitalized I have to request a different leave, but my job is still ptotected. I have been very fortunant with my employers.

  13. I tell people I have an inflammatory auto-immune disease. My colon is my business alone. If people at work as more questions (or even better- start treating me by offering home remedies, suggestions) I politely tell them that I don’t want to discuss the matter any further.

    Also, FMLA look it up! You will most likely qualify. 12 weeks of protected (though unpaid) leave each year. You can be marked as intermittent so it can be used for those days. You’ll doctor will need to fill out the form. It will also help protect any health benefits you get through work. Here is a link with some basic information:

  14. what i do is simple as this, all my co-workers and supervisors of different levels know about my condition; so when flare up occurs they all are nothing but supportive. i know that it is not simple as this in all cases, but to share what is it with u and let them know your condition is one thing u cud do to make them understand and make them cooperative, least it works for me.

  15. I am Global Human Resources Manager and deal with this myself personally. I know the law very well (thank goodness!) and you are protected under the American with Disabilities Act. What this means is that they must provide a reasonable accommodation. This could be having a cubicle or office closer to a bathroom or if you come in later (due to being on the toilet), then you leave a little later. Unfortunately, a lot of employers are not knowledgeable on the law. I would also get your doctor to give you documentation to support it as well. FMLA(Family Medical Leave) allows you to take up to 12 weeks of unpaid leave within 12 months. If your company and/or manager gives you a hard time, talk to the HR dept or you may want to find an employer who is more accommodating. I get so irritated at managers who are clueless but the minute they have a serious illness, all of a sudden it’s a different story. In my opinion, the US employment laws really suck when you compare them to other countries when it comes to leave of absences. We need to adopt more generous leave policies.

  16. Hi U’cer’s,

    I started working in a new job, on the thrid day, I went in to see my supervisor. I just told him that I have a Bowel condition. He completely understood what I was going through. With my previous job I had to take two weeks off, as I had a major flare up. I also had a Doctor’s note, but they didn’t believe me, so I gave them my specialist phone number so they could ring him. I also said to my employer to look it up on the internet< plus I also had a friend at work who knew me outside of work and he had known about my problem for awhile.

  17. I was turned down for SSDI and should have my appeal with in 9 months. Has anyone been through this and would you be inclined to share your experience?

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