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Ulcerative Colitis
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Posted 7/13/2015 3:12 AM (GMT 0)
I've been in a bad flare for about a month now, basically been out of work for that long too. I have a great job, great pay and I've had the job for 2 years now. This is the first time I had to take time off like this due to the disease, I worry about keeping a job with the unpredictable disease because businesses have to keep moving, making money whether your sick or not and they don't want somebody who can at any time be sick and be out for weeks or months. I'm curious how other UCers deal with the disease and their job, or deal with time off due to flares. Has anyone been able to keep their job despite being a neusence to the business? Have you lost jobs due to the disease? Right now my boss is pretty understanding, but after I return (might not be for another month) who knows how long I have until I flare again and idk how my boss would deal with it then. Curious on your guys/girls situation. Also do you always file disability when you have to be out of work due to a flare? How do you still pay your bills. Very interested.
Posted 7/13/2015 3:36 AM (GMT 0)
I am lucky because I work from home. I don't know what I would do if I had to go to a job every day. I am sure i wouldn't be able to handle that. I haven't lost jobs due to the illness but it was always mild or moderate when I was working in offices. I really hate being in the position of feeling like a nuisance, that's horrible. You put in a lot of time and energy to do a good job at work, I am sure regardless of your health status, you're appreciated. You should see if there is some way you can work from home, even if it's only a few days a week, that would be very helpful to you. I can't see doing a good job while being anxious about an accident at work. Better off at home working without stress. I get a lot more done working from home - I can be 100% dedicated, and the UC issues are off the table because the bathroom is right across the hall from my office.
Posted 7/13/2015 3:42 AM (GMT 0)
I am still in school and only working part time so I don't have experience with that but there is fmla which requires them to be accomadatinh you can google it for more info
Posted 7/13/2015 3:53 AM (GMT 0)
fmla will apply for companies over a specific size, and it only provides unpaid leave. - and then only 12 weeks.

I think it is unfortunate you did not take an immune suppressant or a biologic earlier. severe UC plus no meds equal almost certain trouble. some mild cases can pull it off, but IMO, not severe.

I hope the remicade works for you. it sounds like you would not really have the time off needed to do the multiple surgeries.

some nutrition/diet efforts to minimize symptoms, remcade for the inflammation. - but you really should have an immune suppressant too, or the remicade will very likely stop working.

if you can get partially managed, you can likely keep working with help of diapers.

good luck
Posted 7/13/2015 6:16 AM (GMT 0)
As mentioned above, your first line of job protection is FMLA. If your employer is large enough, it's required by law to allow an employee 12 weeks of unpaid leave each year. It can be used either as continuous or intermittent. Once you exhaust the 12 weeks, then you can ask for an accommodation under the Americans with Disabilities Act. An accommodation can be additional time off, an adjustment of your work schedule, allowing you to work from home, etc.

As far as pay, I was fortunate enough to have STD pay through my employer which payed 60% of my salary while I was on a 6 month leave. I don't know other ways to supplement your income while off other than savings or if you have your own short or long term disability policy. I have a LTD policy but it has a rider on my colon so I will never be able to use it for my UC.

I've not lost my job due to UC and I've had 2 extended medical leaves over a 14 month period. The first leave was 2.5 months and the second was 6 months. I did a fair amount of research and it is not in the best interest of a company to fire an employee after exhausting FMLA and not be able to return to work yet. That's when the ADA is helpful.

I hope this information helps. I know how stressful being off work is especially the financial portion. I minimized my expenses, made my savings last as long as possible and my parents ended up helping me towards the end.
Posted 7/13/2015 1:04 PM (GMT 0)
I'm an office worker, with a bathroom always a quick sprint away. I worked through my worst flare. In total, the flare was a year long, so I couldn't take it all off, for sure. You learn to adapt, risk accidents and avoid them when possible (but don't always succeed). After I achieved remission, I switch to a similar job at a bigger company that falls under flma protection (after working there for a year; almost there), and liberal with work at home (whenever I want), so I feel I'm in a much better company, for next flare. I work for a software company, as a technical writer (author online help, getting started guides, etc).
Posted 7/13/2015 1:59 PM (GMT 0)
I worked through my flares. Learned to not eat a whole lot while there since that would make me get the urge. I never had an accident at work luckily but I always had a change of clothes in the car with me just in case.

I do think the stress of that job caused both of my flares. Funny I haven't flared since I left there BUT, my son passed away this year and the stress from that didn't cause one either so who the heck knows???
Posted 7/13/2015 2:08 PM (GMT 0)
I'm on FMLA but any flare I've had, I've worked through it, with a few days off here and there. This last flare was really bad. I think I took off a total of a week. It was hard since I had urgency every 15 minutes and only slept at night a couple hours at a time. My boss's are very understanding (some of them also have issues).
Posted 7/13/2015 5:39 PM (GMT 0)
Sherbear, I'm so sorry about your son, how heartbreaking :( I can't even imagine what you must be feeling I'm sorry I don't know what else to say cuz it's just so sad.

(((HUGS)))
Posted 7/13/2015 6:15 PM (GMT 0)
Sorry about your son as well Sherbear, condolences to you and your family.

I work in a shop where heavy lifting and high amounts of energy are needed so with a flare as bad as mine it's impossible for me to work. Going up and down a flight of stairs has me winded to the point where I have to stop and catch my breath. Also there isn't 50 employees at my job, didn't know about that qualification for the FMLA. Guess I have to rely on the bosses just being understandable
Posted 7/13/2015 6:56 PM (GMT 0)
I am in a classroom. This means that the bathroom is not easily accessible. This results in constipation and pain.

I only cancel class if I have vomiting. I work through minor flares, and manage my day so that I can recover energy if needed.
Posted 7/13/2015 11:35 PM (GMT 0)
People care but they don't care.

I used to think there was sympathy & understanding but in reality there is not as much as I used to think there is.

I was fighting the good fight last time and had a couple days of coming in late after being up in the middle of the night for long periods and finally just went on prednisone since it fixes the problem overnight. I paid and paid for that mistake and hope to avert things before they get that far again.
Posted 7/14/2015 12:01 AM (GMT 0)
Sherbear, I am so sorry for your loss. Sending hugs.

I got my first flare when I had just started a new job. I work in HR for a large company and was mortified at all of the things that come with UC. I finally told my manager, and he actually used to be a pharma rep for one of the companies that sells UC/Crohn's meds - so he was really understanding. I work from home a couple of days a week and am really lucky to have the flexibility that I do. It's not always ideal because I feel like I need to get face time with some of my client groups, but I do the best I can!
Posted 7/14/2015 2:26 AM (GMT 0)

notsosicklygirl said...
I am lucky because I work from home. I don't know what I would do if I had to go to a job every day. I am sure i wouldn't be able to handle that. I haven't lost jobs due to the illness but it was always mild or moderate when I was working in offices. I really hate being in the position of feeling like a nuisance, that's horrible. You put in a lot of time and energy to do a good job at work, I am sure regardless of your health status, you're appreciated. You should see if there is some way you can work from home, even if it's only a few days a week, that would be very helpful to you. I can't see doing a good job while being anxious about an accident at work. Better off at home working without stress. I get a lot more done working from home - I can be 100% dedicated, and the UC issues are off the table because the bathroom is right across the hall from my office.

What is your job/degree? This sounds like a dream job for me!
Posted 7/14/2015 10:08 PM (GMT 0)
Yep. got fired because of the disease. Haven't worked a day since.
Posted 7/15/2015 12:23 AM (GMT 0)
Would a reasonable accommodation help you, or are your symptoms too severe?

Since my symptoms are way worse in the morning, I filed ADA paperwork with my employer requesting a flexible start time and no early meetings. My office was already located near a bathroom, or I'd have asked for that as well. Knowing that I can come in up to two hours late (and then just stay two hours late in the evening) has hugely cut down on my missed work. Of course, I can't eat or drink anything during the work day, and if I have an important meeting in the morning, I do some fasting the day before - Not ideal.

I did have to give up a part-time job teaching as an adjunct. While it's okay to leave my office frequently for bathroom trips, standing up trapped in front of a roomful of students for hours at a time wouldn't work.
I worry about losing my full-time job. Though it's illegal to discriminate based on a disability, my employer could easily lay me off and chalk it up to "reorganization." I spend a lot of time at work making myself indispensable.
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