176 Patient Colitis Work Survey

colitis work surveyThe Working and Having Ulcerative Colitis survey results are here.  Not too long ago, 176 UC’ers from both the newsletter and the Facebook group shared a few minutes to complete the survey’s questions.  That’s almost 200 people who participated which in and of itself is incredible.  As you will see, the results and comments that were left by the are pretty amazing.  This was by far the biggest turnout of participants, as the largest survey before was 129 UC’ers for the “Probiotics Survey” a few months before.

Before you jump into the survey results, please take a moment and thank Larissa (pat her on the back, give her a hug, whatever you can) she’s another UC’er from San Francisco, California.  She was a HUGE help in putting together this survey’s results, and a super great person.   Since she is local (for me), we had the chance to meet up in person.  I hope everyone enjoys it more than most surveys.  “Thanks Larissa!”

Because the survey has several questions where participants could enter in their own comments, there are literally hundreds and hundreds of responses.  For this reason, we’ve decided to break up the survey data into a few different links that you’ll find below.  Also, Larissa and I decided to pick just a few “positive” and “negative” responses to the final “Question #5” to showcase on this webpage, but you’ll be able to read every single response if you follow the different links below.  If you have any reactions or comments in response to this survey, please leave them at the bottom of this page, your comments are valuable.

Thank you again for everyone’s participation, without your time filling in the responses, the survey’s would not exist.


Working and Having Ulcerative Colitis Survey Results:

(Completed April 2012 with the participation of 176 ulcerative colitis patients)

Question #1:

Have you ever been worried about losing your job due to your Colitis?

Yes:               94 people/ 53%

No:                82 people/ 47%

Read all 64 individual responses participants made by click here:  https://www.ihaveuc.com/have-you-ever-been-worried-about-your-job-because-of-your-colitis/

Question #2:

Do you tell other people at your work/job about your UC?

Yes:      147 people/ 84%

No:       29  people/  16%

Read all 72 individual comments that different participants submitted for this question by clicking here: https://www.ihaveuc.com/do-you-tell-other-people-at-your-work-job-about-your-uc/

Question #3:

Does your UC affect your ability to perform your job?

Yes:                     112 people/ 64%

No:                       48 people/ 27%

I don’t know:      16 people/  9%

Read all 87 comments submitted by participants for this question by clicking here: https://www.ihaveuc.com/does-your-colitis-affect-your-ability-to-perform-your-job/

Question #4:

Have you ever had to take time off your job because of your UC?

Yes – I’ve missed 10-50 days of work since my diagnosis                     59 people/ 34%

Yes – I’ve missed between 1-9 days of work since diagnosis                58 people/ 33%

Yes – I’ve missed more than 50 days of work since my diagnosis      38 people/ 22%

No – I’ve never missed any work due to my UC                                     21 people/ 12%

Question #5:

What type of job/work do you have, and would you recommend it to another UC’er who is thinking about changing up their career or looking to do something that might work easier with UC symptoms and all that comes along with UC? Why/why not?

(This question has 176 answers because it was required to complete an answer here.  Larissa and I chose a few answers below, however, you can read every single answer here: Question 5 answer details)

A Few Recommended Jobs:

  • I was a Real Estate Appraiser before I became permanently disabled. I believe it’s a great job for someone with UC. You are almost always near a toilet especially if you appraise residential real estate. There is some crawling around, climbing, etc.. but it’s usually pretty easy going.
  • Graphic designer. Being indoors & sedentary does help when I’m not feeling good, especially since there is usually a bathroom nearby. I also am able to work from home, if needed which is a positive.  I find I need to go to gym most days – helps with stress release. I walk to work as well (20 mins one way)  I would recommend being a graphic designer as a career change – however – not everyone is artistic & has an eye for design! I’ve been a designer for longer than I’ve had UC (designing for 13 years, UC for 11 years).  I’m lucky to do something I love without UC affecting my career too much to stop.
  • I’m a Commercial Insurance Agent. Most of my work is done via e-mail so if I am having a”bad day” and end up in the bathroom a lot, it makes it easier to get away with it. Meetings and conferences are a different matter (I do a lot of praying then :))
  • I worked full time in Santander business banking before being disgnosed. It is not a job I enjoy and was hoping to do something else some day. The only good thing that came out of my UC disgnosis was that after about 3 years of being unhappy and struggling daily I pushed myself into starting my own business. I now work in the bank three days a week and I run a vintage clothing website the rest of the time. Since taking the plunge I have felt a lot happier in myself and this has resulted in my UC being more controlled.
  • I am a social worker. The schedule is good for me because it allows a lot of flexibility. If I come in late no one really minds as long as I make up the time lost. I schedule my own appointments so I make sure to do office work in the mornings when my colitis usually bothers me more so that I don’t have to cancel or delay appointments. I used to work full time and I managed it pretty well but now I work just 15 hours a week. I set my own hours so I can plan my work around my health.
  • I’m a police officer and sometimes it’s rough being on patrol while I’m in a flare up but I manage.
I have never thought about a job change because I love what I do.
  • I’m a nurse in a hospital so it’s pretty easy to discuss my UC at work. Sometimes it’s difficult for me to be on my feet and do the physical stuff. I’ve considered a desk position or work at home. So far, I’m able to work at the hospital easily.
  • I am a kindergarten teacher. I am lucky to have a full time paraprofessional in my classroom so I can step out to the restroom any time I need to.


A Few Not So Recommended Jobs:

  • Law enforcement. I would not recommend it. Having to wear all the gear around my waist can be very painful at times.
  • I am a registered nurse on an open heart cardiac unit. It is a very stressful job to be a RN. I would not recommenced this career to another UC’er. I just graduated college May 2011 and started working as a RN in October. So for someone with UC its difficult because the hours are 13-14 hours 3 days a week. Being at work for so many hours makes it hard to go to the bathroom because of being so busy.
  • I am an Architect, I own my own firm. I think the stress that builds up from owning a business adds to my UC symptoms, so I have had to work on ways to mitigate and release my stress. As far as when I I flare…my office is right across from the restroom and there is only two of us in the office.
  • Military. I’m hanging in there until I’m elegable for pension then I’ll be breathing a sigh of relief and leaving
  • I am a high school teacher. I probably wouldn’t recommend teaching. You can’t leave the room very easily to go the bathroom and sometimes teenagers can be stressful. I love my job and have made it work so far but I don’t think I would recommend it to someone with a chronic illness. I am trying to find Online teaching jobs. After I finish my masters (which I took a leave from too). I will look into the online teaching environment more.

Read ALL 176 answers to this question by clicking here: https://www.ihaveuc.com/what-type-of-work-do-colitis-patients-have/



Wow, this was an incredible survey.  It is pretty amazing to sit back and realize how the UC’ers of the world really are a great representation of the whole planet.  It’s easy to get bogged down with colitis and think that you are the only one living with the symptoms.  BUT, that’s definitely not  the case.  So, next time you see a police officer, or an engineer, or maybe the next time you see your hairstylist or county administrator, just realize that he or she might very well be living with ulcerative colitis too.  The same thing goes for whoever is waiting in front or in back of you while you’re in line at a public restroom.

Thank you very much for all your participation with this survey, and thank you for your patience with me posting up the results.  And of course thanks to Larissa!


14 thoughts on “176 Patient Colitis Work Survey”

  1. The comments provide insight into things I had not considered before. I look forward to the next survey. I would like to see one related to specific symptoms (# times in the bathroom/day) and how different MDs treat them, as well as one that explores alternative/integrated medicine treatments such as diet, herbal supplements and other medicines.

  2. when I first realized that something was very wrong I was a 30 year carpenter.I did’nt have any pension and no insurance to speak of.I was unable to work on the type of jobs that I had for many years,so I was forced to quit.With no insurance I went to the V.A.(your second chance to give your life for your country)and was dignosed after a year of visits.My doctor diagnosed me with Crohns.
    I should have known that I was in trouble,after a second colonoscopy rediagnosed with U.C.I was give meds that did’nt work,after 4 years of a miserable existance I requested a changed of doctors.My new Dr.listened to me and together we were able to used some non tradiditional theropy(nicotine patches)and masalamine.I’m not cured,but I can function as a human being again.Thanks to Dr.Jill Elwing at the J.Cochran V.A.Hospital,St.Louis,Mo.I remember all U.C.sufferers each day in my prayers.

    1. you sound so much like me and your final line actually made me cry. i’m going on 3 years of miserable, unable to reach remission, steroid dependent, no insurance or medicare, forced to quit a job i really liked and to change my major in school because i miss too much of the attendance required stuff… my last angle toward treatment is trying to get disability cuz i have no money and i owe so much that no GI will see me outside of the ER anymore… waiting for the day that i too can “function as a human being again.” thank you for sharing. you made me feel less alone.

      1. Sending you much love. I’m in a very similar boat. This forum is new to me but is the ONLY thing I can find comfort in. You are worth it. Keep fighting.

  3. Great survey!

    It IS sometimes hard to work when you have UC.

    This survey was tres insightful as to what other UC sufferers go through at their particular jobs.

    I owned my own clothing consignment boutique for four years from 2000 intil 2004, and eventually sold it because I really couldn’t do everything anymore. It was very hard, labor intensive work. If I didn’t have UC, I’d probably still own it. C’est la vie, I guess.

    Thanks Adam and Larissa!!


  4. What a wonderful survey! Although I’m not a police officer, I actually work with law enforcement and have often wondered how an officer would be able to work with UC, given all the duty gear and being on patrol and away from restrooms. It’s so inspirational to know that even they make it work and don’t let their disease keep them from doing what they love.

    Last year, I experienced being on leave due to a bad flare, and I’ve experienced the embarrassment of having flares while at work (even losing control while at my desk once — thank goodness for black pants!), and I will say that, with time, I’ve been able to let go of some of the embarrassed feelings and told myself that it could always be worse.

    I have a desk job and what’s nice about it is that I can keep my SCD snacks on my desk and eat them when I need to. (An aside, the SCD diet is helping me get better every day! No more Remicade for me!) I’ve also found that being completely open with my boss about my condition has taken a huge amount of stress off of me. In fact, when I told my boss about my condition, he opened up about his own medical issues and it turned out that he too struggles with GI issues. And his sister has UC! Knowing that he is understanding makes me feel more at peace and like I don’t have to hide or run from this.

    Thanks Adam and Larissa for putting this insightful and fantastic survey together. I plan on sharing it with many people! I hope both of you have a fantastic week!

  5. It wasn’t until I was in my sixties that I got colitis .. I thought it was ulcerative colitis but recently found out it was not ulcers … but rather colitis .. it is mainly under control with only a few episodes lasting in the morning . on and off seldom .. as I take the Asicol .. which is good . I don’t know how long one needs to take this medicine .. but insurance many only approve it for a year .. it is COSTLY about $400 a month .. but my insurance pays . So, hopefully, I will be OK

  6. I had an office job as a workers comp adjuster. One day I was having a bad flare & had an accident at my desk. I didn’t have time to go clean up when a coworker asked me to go into a small office with him to discuss a case on a conference call with an employer. I knew I smelled, but had no choice. He kept giving me funny looks the whole time & I didn’t want to explain.

    A little while later the human resources lady called me in to talk to me. She said she had gotten complaints that my hair wasn’t looking clean or professional. I cried & told her what I thought she was really calling me in about. I told her I had no control & was embarrassed. Of course she denied it & said my hair looked clean that day. If course it was, my hair was always clean. A few months later the company did some major lay offs & I was in the first big group. I didn’t bother fighting it. I was under too much stress in that job & was better off not being there.

  7. Thanks for posting this, and all the people who took the time to contribute!

    Like a lot of folks, I work retail. Being on your feet all day- and not necessarily near a bathroom/ or able to get to one is problematic with UC. Shortly before ending up in the hospital & missing a month of work- I had a very bad flare. I thought I was going to collapse with a long line of people waiting to have items rung up.

    I work half the hours I used to, hard financially…but I am healthier for it. My co-workers/ employers understand my condition, so it is easier to manage now. Still I think it would be quite hard to get employed elsewhere, or go to a bigger corporate type store.

    I have to suggest it’s even harder on folks with UC or a spouse with UC in this economy. My husband has to work 2 jobs, and we’re paycheck to paycheck.

  8. I am also a teacher. I would not recommend it for others with UC. I managed in kindergarten because I had an assistant in the room….I am now in a fifth grade class and it is very difficult to leave the room especially if its urgent. I agree sometimes the stress does not help either but I love what I do…hopefully I can continue without the UC affecting me.

  9. this survey almost made me cry. My hubby is miserable and just went through “not having his contact renewed”, after 18 years. It’s the best thing for his health right now. I am so for excited for the day he is not wiped out by 6 pm. For the day he feels confident again. Thank you for this survey. I’m so glad we are not alone. Quick question, has anyone been approved for disability right away in the good old USA?

    1. Mrs. Huds,

      I was approved for disability in the state of california back in the end of 2008 for two months almost instantly via a doctors letter, I was employed at the time and could not work, and I have to say, it all worked much faster than i had expected.

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