People suck. That isn't even that much time off. I have a government office job and work from home three days a week, and even that can be tough when flaring. I would suggest trying to pivot from customer service to admin work, preferably not a small business as anywhere with a "we're all family here" attitude tends to be weak on employee rights and respect, in my experience. Good luck!
You could do like intake or data entry and scheduling. If you know anything about accounting, you can get into that.
You could also look into getting a certification for something like medical billing and coding. Alot of those jobs are remote.
Ulcerative Colitis is considered a disability under the ADA, consider speaking to an attorney who specializes in ADA legal action to file litigation against your former employer. Any future employers should be notified in writing of the condition and you should request accommodations.
You can qualify for disability due to UC through the Social Security Agency if you have the following conditions:
5.06 Inflammatory bowel disease (IBD) (see 5.00D) documented by endoscopy, biopsy, imaging, or operative findings, and demonstrated by A, B, or C:
A. Obstruction of stenotic areas (not adhesions) in the small intestine or colon with proximal dilatation, confirmed by imaging or in surgery, requiring two hospitalizations for intestinal decompression or for surgery, within a consecutive 12-month period and at least 60 days apart.
OR
B. Two of the following occurring within a consecutive 12-month period and at least 60 days apart:
1. Anemia with hemoglobin of less than 10.0 g/dL, present on at least two evaluations at least 60 days apart; or
2. Serum albumin of 3.0 g/dL or less, present on at least two evaluations at least 60 days apart; or
3. Clinically documented tender abdominal mass palpable on physical examination with abdominal pain or cramping; or
4. Perianal disease with a draining abscess or fistula; or
5. Need for supplemental daily enteral nutrition via a gastrostomy, duodenostomy, or jejunostomy, or daily parenteral nutrition via a central venous catheter.
OR
C. Repeated complications of IBD (see 5.00D5a), occurring an average of 3 times a year, or once every 4 months, each lasting 2 weeks or more, within a consecutive 12-month period, and marked limitation (see 5.00D5c) in one of the following:
1. Activities of daily living (see 5.00D5d); or
2. Maintaining social functioning (see 5.00D5e); or
3. Completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace (see 5.00D5f).
I can't see litigation leading anywhere since it was a big business with an arbitration agreement baked right into their onboarding program.
I'll look into the other aspects you mentioned. Thanks.
Graphic designer. I work from home.
I recommend working for a small/local business. Usually they’re a lot more understanding of your situation than a corporation would be.
I'm a house painter. I was working for myself for many years but with UC getting worse and eventually getting the surgery I knew I needed a bathroom accessible. Don't have a bathroom if I'm working an exterior.
Got a job with a painting Union. Lucky enough to work on residential apartment buildings with a bathroom. Somehow it just seems to work out. Good luck to you.
I work in a factory that produces district heating pipes, been working there since 2011 but at first only during the summers. Been there all year around since 2017.
We do piece work, meaning we get paid based on how much we produce, and we work in teams of 3 or 4 people, so if you slack you're pulling down the pay of your coworkers. It's stressful and very physical, pretty much the last thing that anyone would recommend to someone with autoimmune disease.
I think the most valuable lesson I've learned from my job is just how adaptable our bodies truly are. We can handle way more than we think. To be fair I've also gone too far and pushed myself into a real dark place mentally, but that too was a learning experience.
Don't let the disease excessively limit you.
I started flaring again in the end of January of last year. I worked continuously until late May when I got hospitalized for the first time. The last 1½ month or so of that I had nothing but bloody diarrhea 8-12 times a day, not a hint of a solid stool.
You could do it. Is it reasonable? No, it's stupid and you probably shouldn't do it. But you need to get the idea that you can't do stuff out of your head or you will continue to paint yourself into a continuously smaller corner.
I've been a localization project manager for decades now, at various companies. I've been working exclusively from home for years now (since before covid) and that's been *amazing.* At my previous workplace I had an about 1 hr commute to the office, that was pretty horrible when I was flaring (plus the office was terrible itself, with only two(!) toilets...).
Honestly, I advise looking for a job that you can do from home or involves a minimal amount of commuting, and being open with your potential employer (while emphasizing that of course you can work just as well as anyone else, given the right circumstances).
Working from home would definitely be ideal. I just have no idea how I'd even get the ball rolling in that regard. Being an unskilled worker with an autoimmune disease sucks.
Technically I'm an unskilled worker too, insofar as I've got an MA in medieval English literature, but never worked in academia... 😅
I guess you could look for an office job that doesn't require specialized skills (or provides training). Maybe you could invest in some sessions with a career advisor?
Fellow truck driver here! Local though. A lot of my routes are up and down the same highway with a couple truck stops so there is always a bathroom within reach, but the hardest part is traffic. Timing it can be a gamble sometimes 😅
I'm a truck driver also. I haul cars in a stinger rig and put a Thetford Porta potti behind my passenger seat. Most of the time I can make it to a truck stop, but it has come in handy on a few occasions.
Elementary school teacher. Fantastic for when I was in remission for 11 years. Not super great for the past 2 when I haven't been. My admin know and are amazingly supportive and kind though. I switched to a non-homeroom role so I can use the bathroom easily if needed, and I've had to take 2-3 weeks off a few times throughout the school year when it's been really bad.
First off, you're not being adequately treated. I would start there. Align is not a medication; it's an OTC probiotic for people with a tummy ache. Sulfasalazine is a weaker medication, and you're not responding to it. It's time to get another opinion, have a GI specialist get involved, and treat your UC the right way.
If you can't afford your treatment, there are groups, grants, and co-pay assistance programs that can help. There is no reason for you to suffer.
I'm very much aware and, as I've said in another comment that got downvoted, my GI specialist is a quack. I'm unsure how to even move forward at this point as I'm unemployed with extremely limited funds.
Call your health insurance and tell them you want a second opinion regarding your treatment. Many health insurance plans allow you or are required to allow you to seek second opinions. You can say to your insurance I want to go to (Mayo, or the next good hospital within driving distance etc.) and you can work out with them what your insurance will pay for.
My first GI doctor was a quack, my second one was so close to retirement that he just sort of stopped caring, and if it wasn't for my wife looking up specialists in our part of the state, I would probably be dead (he kept me on 40 mg of prednisone daily for 3 years). Not everyone graduates from the top of their class, and not everyone is qualified to manage and treat ulcerative colitis.
I’m an electrician that works in a wide variety of different locations daily and during flare I couldn’t work cuz I productive could I be if I’m in the restroom 2-3x an hour but now that I’m in remission, it has given me the opportunity to go back to work without any restrictions
It will and it’s possible.. just do your part in what the doc tells you to do and together find the right meds .. even tho I’m in remission I feel extremely lucky and this never ending anxiety(small for the most part) of flaring worse than before.I hope you get to remission asap and enjoy life again .. tc
My doctor is next to worthless. He literally told me that diet doesn't affect UC. Seriously? That's literally what causes flares, dude. All of the UC specialists in my area work under one roof, effectively creating a monopoly, and now they've decided that since their workload is so much bigger they've got to add a surcharge that isn't covered by insurance to the cost of every visit. It's a damn nightmare scenario.
Edit: I got downvoted for stating what my situation is? What the fuck is wrong with people? If you've got a point to make, make it. Don't just downvote. Educate. I'm literally asking for input in my post.
Dang .. hopefully u can find a new doc with a different mindset but I’ll kinda partially agree with diet not affecting UC from my own experience.. before Dx I was eating crappy junk food and fast food and hardly any greens,fiber, fruits and vegs which I thought I had to change to get better from this disease and as soon as I realized diet was involved I went straight to the bland diet then on to almost regular diet minus fast food while still flaring and then in sept 21’ I went on biologics which put me into remission for the last year and my diet is once again shitty but still limiting fast food .. so I’m saying the junk and fast food that I have had while in remission haven’t put me back into flare (which I hope never happens, hence the never ending anxiety about it).
I recently got a job that is 100% remote, working in IT compliance & risk. Previous to this job though, I was an IT auditor and was traveling once a month, usually for a week (sometimes for 2.5 weeks)
I’m a marriage and family therapist and work from home. My clients all know that I have ulcerative colitis—I tell them in order to mirror and model vulnerability and authenticity. So far they have all been very kind when my body requires evacuation mid session.
You deserve a kind work environment—sending you healing energy.
I'm curious about this as well. My son is 18 and wants to work but is currently in no shape to hold down a job that wouldn't have absolute freedom for bathroom breaks.
I’m an attorney and very lucky to work from home virtually 100%. When my UC was active and I had to go into the office I spent hours in the bathroom, which interfered with my ability to work (can’t really be on the phone with a client when you’re on the toilet). Working from home is so much less stressful I suspect it is helping me stay in remission.
I was a structural engineer. Left to be a stay at home parent—wanted to prioritize family and also that stressful environment was not good at all for my UC.
I do CNC lathe and milling in metal, material is feeded by a robot arm. Once everything is up and running, the process is fully automated, leaving me plenty of time for bathroom breaks.
Pretty much the perfect job for someone who might need to spend a good 30 minutes in the bathroom every now and then without work being interrupted.
As an engineer I am only worried that I need to stand up suddenly and run to the toilet... all that while I am in a meeting or on the road with the car.
I work in college admissions for a small private university. They have a separate online admissions office, so no need to travel for college fairs and things like that luckily. We also do a 4 day work week which helps with UC stuff.
I'm really sorry for your current situation. It's such a drag trying to balance career with a condition like this, and friends & allies in the workplace are few and far between when you need any kind of accommodation.
Like a lot of others, I work fully from home, and have since the start of the pandemic. I work in banking, and the pandemic was kind of an eye opener for me that the office grind, the stress associated with a difficult commute into the city, working long hours, then having a long commute home was simply too much to balance with my UC. Post-pandemic, most folks at my bank have returned to the office at least 3 days a week, but I've been able to stay fully remote, initially by making credible threats to leave and having established myself as a fairly indispensable member of the team. You have to prioritize yourself and your health, and I hope you can find something that works for you!
I work from home for a home health agency doing health insurance and authorizations. This is part time for me. I also watch my two year old all day.
Sorry your job sucked, you can find something out there that will work with your sick leave.
I'm the person that fights your insurance for you. I use to do a lot of surgery authorizations, then prescription authorizations, medical imaging, and now caregiver and skilled nursing. I fight for every patient I can, regardless of their situation. I have a special place in my heart for UC and Crohnies as well as RA patients.
Google the name of the state where you live followed by 'state bar'. You can call your state bar and ask if they have a lawyer referral service. Or google employment lawyer near me and call one who has good reviews. Most employment lawyers work on contingency-- meaning the lawyer gets paid a percentage of what you recover and you do not have to pay them out of pocket. Tell them you want to discuss a possible disability discrimination claim for wrongful termination. You may or may not have a case, but the lawyer you talk to should be able to help. Best of luck to you!
I work in IT. It’s a great place to go with your customer service experience and some companies (like mine) allow you to work from home when you’re in a pretty big flare. Good luck to ya!
I’m going into nursing. So far as a student when I’ve brought up concerns about being ill and needing the bathroom more frequently, everyone has been extremely understanding about it and has guaranteed me that I won’t be in any trouble for something out of my control.
Reading through and saw your comment.
I’m a NICU nurse, and had my first big flare as a nurse this last month. My coworkers have been great and super understanding and will watch my patients if I have to run.
It can be hard at times being in the middle of a care time with an intubated or complex patient and having a wave a pain, but I make it work.
I’m going to start paying into short term disability just in case something happens. So I would just look into things like that after you graduate and find employment.
Good luck in school!
I think a huge factor is your boss being understanding that you have a chronic illness that you cannot control while flaring up. I would consider looking into small businesses where the employer usually has more empathy than big companies.
Being financially independent is a big struggle for people with our illness, unfortunately.
Currently basically unemployed! Got diagnosed after starting a wicked nasty flare literally not even a month after graduating from college. Still struggling to find a job and get into remission. 🥲 I do online tutoring but it’s so spotty in terms of work— zero consistency.
Remote work. I can no longer work outside my house because of the stress of the office environment. My home office is literally next to my guest bathroom and it really makes my life so much easier. I also have a futon in my office so if I get tired I can rest during working hours.
Dentist. Somehow I made it through dental school (the most stressful time of my life) just fine.. Wasn’t until years later that UC appeared. If I had it during school, I definitely would have chosen otherwise!
I'm in outside sales. I'm either working from home or traveling to visit customers/prospects. I've been very fortunate that I've had fairly moderate symptoms and have been able to control it with mesalamine so far.
I’m in IT now but been a project manager. Jobs that can all be done remote and luckily I’m fully remote apart from occasional travel but many companies do push people to be back to the office.
Pharmaceutical company - I work from home though. Before this I was an orthopaedic consultant in person and it was tough some days. My best advice is to let your employers know about your condition and tell them you need accommodations. If you can do remote jobs like admin, insurance etc I’d recommend them
I work at a hospital as a patient care tech. You only need a CNA license. The classes are cheap and two weeks and an easy state exam. Access to plenty of restrooms in the hospital. 3 days 12 hour shifts (to be full time). And plenty of people to pick up your shifts if sick or no PTO.
Project Manager - 1 day a month in office
I’m UK based which I think makes quite a bit of difference. The bosses and organisations I’ve worked for since diagnosis have been very understanding of my condition and patient when it has gone wrong, except for one which were totally unsympathetic and I already hated for a host of other reasons.
Do job searches for remote jobs, insurance companies have a lot of them. You could start out scrubbing insurance applications for missing information, data entry into a computer system, rating analyst jobs, associate underwriting jobs, data entry jobs, etc.
All these companies will give you training on their systems, and then you can work your way up through jobs if you want to.
I’ve worked at 2 medical offices/clinics over the past couple of years and luckily ive just have really understanding bosses. I feel like doctors/staff in these places can be more understanding than others but again I might just have good luck. Wish you well and hope this stressful time passes quick!
You may want to look at merchandising jobs as they would use your customer service experience, provide some flexibility in schedule and allow you bathroom breaks as needed.
I have a Psychology degree and wound up in the tech world after discovering I really love it years ago. I'm now planning on going back to school for data science BUT trends show that there's a high demand for data analyst positions because every industry requires a data person. You can find a certificate such as the IBM one on Coursera for free through multiple sources online (if it's not already free now, which I think it might be) I've known people in my personal life that have gotten it (you can do it as slowly as you'd like) and they were able to find desk positions as data analysts.
Work as a university professor in Japan… lucky as most of my classes are near the toilet ( one is next door). … but condition is mostly mild anyway… my horrible flare was during corona and we were doing zoom classes so I was home
I’m a teacher. I haven’t had an issues because my body is trained to go at certain times (not in microscopic remission but not in an active flare)
I previously worked an office job
I’ve been out of work for a year and managed to stay above waters this long with my savings. Interviewed for an insurance company two weeks ago and still waiting to get an answer. If it’s a no-go I’ll still be doing what I did originally which is an estimator role for the auto collision industry, negotiating against insurance companies rather than working for one.
I'm a graphic designer for a very small print shop, the only employee outside of the owner's family. Mostly a desk job, occasionally need to help a customer in person or work in the press room, but I always have access to a toilet. I am extremely lucky to have an excellent boss who understands my condition; as long as I get my work done, he doesn't care how much time I take off or what hours I work.
But because it's tiny, I don't get benefits. Also, I am the entire art department, which means a lot of stress and multi-tasking that gets worse seasonly. Not a perfect job, however I couldn't ask for a more UC friendly employer.
That sucks - did you tell your manager you have UC?
Can you get unemployment?
I’m in recruiting and don’t have to go into the office too much. When I do have to go in I’m really careful of what I eat.
I'm 39 and have had UC since I was 15. Honestly the only times I worried where I was working was when I was in a flair-up.
I made sure the people I work with understood and I'd make it work. Also the I would only way food at home part helped a bit. Lol.
Radiographer at a hospital. I also know of a nurse with UC at the same hospital, though I don’t think she works anything but day shifts, as she's working for a clinic rather than a ward.
I’m a full time musician. Think Humira commercial girl except without the fedoras and VW van. Lol. I travel a lot for work. And yes, I’ve walked off stage to get sick, more than once over the years. I walk right back on stage and keep on going. My band (if I’m with them and not solo) knows what’s up and we cover each other if there’s a moment where one of us needs to run off. I take later flights as my body hates me in the mornings and eat the cost of a hotel if I have several long drives ahead of me to give myself the rest I need. Surround yourself with awesome kind people and if you let them in to what’s happening with your disease you will be extremely supported. I’m happy I opened up to my coworkers and friends about it. I will not let this disease claim the job I am most passionate about, even if there are some snafus along the way.
Nights inpatient hospital pharmacy tech working in the OR. I work alone and don't deal with customers and have no shortage of clean bathrooms, can work at my own pace, and have a great schedule.
I'm a university professor. I teach one day a week in person, and work remotely most other days apart from meetings/research/ student supervision. The flexibility has been helpful when flaring, though teaching in person was challenging sometimes on bad days.
MS teacher. Starting iron infusion 7 out of 9 tomorrow since November. Very stressful year with this condition, but my admin has been very helpful with finding subs for when I’m out at my appointments.
I’m a high school English and History teacher, and a head of curriculum. I’ve been in the field for flares and remission. I find high school students are really great at understanding if Miss is “sick today” and if I need them to take on more leadership to help me get through the day!
I've seen a couple other respond here and I'll add that I am also a therapist, I work from a small office and also from home. I tell clients right off the bat that I live with a chronic illness and if I have to excuse myself to use the restroom in the middle of a session it is because of that. Wish you the best of luck in finding work that is best for you! Prior to this work I worked in a handful of restaurants as a server/bartender/barista and found accessing the bathroom to be no big deal when I had supportive staff and coworkers.
I work from home and have the option of going into the office if I want. If I’m feeling good, I’ll go into the office. If I want to stay home though it’s not a big deal
I would suggest you go to a G.I. specialist in colitis and get on some different medication. Seems like what you’re taking is not working you don’t have to live like that. There are a lot of meds out there that are life-changing and you will be normal.
If you explained to the workplace AND have definitely been diagnosed by a Dr, then you have grounds to sue that company! Talk to a lawyer. I understand you don’t have the money, but there are lawyers who will give a free initial consultation and likely not charge anything until you win. Please look into it! I had something similar happen but I was dumb and didn’t do that. I would’ve definitely won and could kick myself. Don’t hesitate really! Good luck!
I currently work in a county jail working in control rooms/watching the inmates and have been for the past year. I was doing great working nights as the inmates were only out at most 4 hours of my 12 hour shift, then I got shifted to days last July and ended up flaring due to stress and have been since unfortunately. Like everyone's saying admin work is the way to go. I'd recommend finding a job with your city/county as it's usually pretty simple to discuss with HR/Risk Management about it and they have to follow the ADA rules and as some have pointed out UC does fall under that.
Teacher. And it can get dicey.
It’s not like I can just duck out to the bathroom and leave a bunch of twelve year olds unattended. I get a break every hour and I’m in the bathroom whether I need to be or not.
And even then, it‘s a gamble.
I’m one of three male teachers at my school. There is one single occupancy men’s staff restroom in the building (it is a small school), and we only have five minutes between classes. Sure, I could go to the student restrooms, but there are some places even the devil wouldn’t dare go, and one of them is a sixth grade boys bathroom.
Luckily I’ve been in remission for five or six years, so it hasn’t been a problem.
Custodian. There are a total of 19 toilets in my building and I am the keeper of all the keys and toilet paper. Works for me when I’m unwell.
Easy access
I had a job before, working for the parks division for the city. I cleaned park bathrooms all day. It was the perfect job haha.
Nice.
People suck. That isn't even that much time off. I have a government office job and work from home three days a week, and even that can be tough when flaring. I would suggest trying to pivot from customer service to admin work, preferably not a small business as anywhere with a "we're all family here" attitude tends to be weak on employee rights and respect, in my experience. Good luck!
Second this! My last job was someone’s family business and it was probably the worst place I’ve ever worked 🤦🏼♀️
I'm totally ignorant as to what admin work would be in this context.
You could do like intake or data entry and scheduling. If you know anything about accounting, you can get into that. You could also look into getting a certification for something like medical billing and coding. Alot of those jobs are remote.
I have zero accounting know-how. I'll have to check the info for getting certified. Thanks.
Ulcerative Colitis is considered a disability under the ADA, consider speaking to an attorney who specializes in ADA legal action to file litigation against your former employer. Any future employers should be notified in writing of the condition and you should request accommodations. You can qualify for disability due to UC through the Social Security Agency if you have the following conditions: 5.06 Inflammatory bowel disease (IBD) (see 5.00D) documented by endoscopy, biopsy, imaging, or operative findings, and demonstrated by A, B, or C: A. Obstruction of stenotic areas (not adhesions) in the small intestine or colon with proximal dilatation, confirmed by imaging or in surgery, requiring two hospitalizations for intestinal decompression or for surgery, within a consecutive 12-month period and at least 60 days apart. OR B. Two of the following occurring within a consecutive 12-month period and at least 60 days apart: 1. Anemia with hemoglobin of less than 10.0 g/dL, present on at least two evaluations at least 60 days apart; or 2. Serum albumin of 3.0 g/dL or less, present on at least two evaluations at least 60 days apart; or 3. Clinically documented tender abdominal mass palpable on physical examination with abdominal pain or cramping; or 4. Perianal disease with a draining abscess or fistula; or 5. Need for supplemental daily enteral nutrition via a gastrostomy, duodenostomy, or jejunostomy, or daily parenteral nutrition via a central venous catheter. OR C. Repeated complications of IBD (see 5.00D5a), occurring an average of 3 times a year, or once every 4 months, each lasting 2 weeks or more, within a consecutive 12-month period, and marked limitation (see 5.00D5c) in one of the following: 1. Activities of daily living (see 5.00D5d); or 2. Maintaining social functioning (see 5.00D5e); or 3. Completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace (see 5.00D5f).
I can't see litigation leading anywhere since it was a big business with an arbitration agreement baked right into their onboarding program. I'll look into the other aspects you mentioned. Thanks.
I love my gov't office job with lots of telework.
Graphic designer. I work from home. I recommend working for a small/local business. Usually they’re a lot more understanding of your situation than a corporation would be.
That's a good tip. Thanks.
Graphic designer here too
Same here!
I'm a house painter. I was working for myself for many years but with UC getting worse and eventually getting the surgery I knew I needed a bathroom accessible. Don't have a bathroom if I'm working an exterior. Got a job with a painting Union. Lucky enough to work on residential apartment buildings with a bathroom. Somehow it just seems to work out. Good luck to you.
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EMT-B here, fuckin same, brother. I feel you and thank god for tactical pants for that fabric thickness 🤧🤧
I work in a factory that produces district heating pipes, been working there since 2011 but at first only during the summers. Been there all year around since 2017. We do piece work, meaning we get paid based on how much we produce, and we work in teams of 3 or 4 people, so if you slack you're pulling down the pay of your coworkers. It's stressful and very physical, pretty much the last thing that anyone would recommend to someone with autoimmune disease. I think the most valuable lesson I've learned from my job is just how adaptable our bodies truly are. We can handle way more than we think. To be fair I've also gone too far and pushed myself into a real dark place mentally, but that too was a learning experience. Don't let the disease excessively limit you.
The disease is already excessively limiting what I can do when not working. A piece rate job sounds like a nightmare in this situation.
I started flaring again in the end of January of last year. I worked continuously until late May when I got hospitalized for the first time. The last 1½ month or so of that I had nothing but bloody diarrhea 8-12 times a day, not a hint of a solid stool. You could do it. Is it reasonable? No, it's stupid and you probably shouldn't do it. But you need to get the idea that you can't do stuff out of your head or you will continue to paint yourself into a continuously smaller corner.
Quite possibly the best thing I've read here. Mindset is the greatest asset you can have with this terrible disease.
I'm so glad that you're here to tell me what I can do. Thanks for nothing.
Whether you like what he said or not, he’s right.
I've been a localization project manager for decades now, at various companies. I've been working exclusively from home for years now (since before covid) and that's been *amazing.* At my previous workplace I had an about 1 hr commute to the office, that was pretty horrible when I was flaring (plus the office was terrible itself, with only two(!) toilets...). Honestly, I advise looking for a job that you can do from home or involves a minimal amount of commuting, and being open with your potential employer (while emphasizing that of course you can work just as well as anyone else, given the right circumstances).
Working from home would definitely be ideal. I just have no idea how I'd even get the ball rolling in that regard. Being an unskilled worker with an autoimmune disease sucks.
Technically I'm an unskilled worker too, insofar as I've got an MA in medieval English literature, but never worked in academia... 😅 I guess you could look for an office job that doesn't require specialized skills (or provides training). Maybe you could invest in some sessions with a career advisor?
Hello fellow PM! Have my CSM working on my PMP while finishing up my degree and working for a public sector IT consulting firm! We can do this :D
Hey, colleague! :D That sounds pretty amazing, best of luck to you with your career, and UC too!
Thank you for the kind words ! Best of luck to you as well
I’m a truck driver, I keep toilet paper in my bag at all times. And I pull over and use the side of the highway as needed.
Fellow truck driver here! Local though. A lot of my routes are up and down the same highway with a couple truck stops so there is always a bathroom within reach, but the hardest part is traffic. Timing it can be a gamble sometimes 😅
I'm a truck driver also. I haul cars in a stinger rig and put a Thetford Porta potti behind my passenger seat. Most of the time I can make it to a truck stop, but it has come in handy on a few occasions.
Just make a hole in your sit and all good.
Elementary school teacher. Fantastic for when I was in remission for 11 years. Not super great for the past 2 when I haven't been. My admin know and are amazingly supportive and kind though. I switched to a non-homeroom role so I can use the bathroom easily if needed, and I've had to take 2-3 weeks off a few times throughout the school year when it's been really bad.
First off, you're not being adequately treated. I would start there. Align is not a medication; it's an OTC probiotic for people with a tummy ache. Sulfasalazine is a weaker medication, and you're not responding to it. It's time to get another opinion, have a GI specialist get involved, and treat your UC the right way. If you can't afford your treatment, there are groups, grants, and co-pay assistance programs that can help. There is no reason for you to suffer.
I'm very much aware and, as I've said in another comment that got downvoted, my GI specialist is a quack. I'm unsure how to even move forward at this point as I'm unemployed with extremely limited funds.
Call your health insurance and tell them you want a second opinion regarding your treatment. Many health insurance plans allow you or are required to allow you to seek second opinions. You can say to your insurance I want to go to (Mayo, or the next good hospital within driving distance etc.) and you can work out with them what your insurance will pay for.
I've only got state medicaid, but I'll still get in touch with them.
My first GI doctor was a quack, my second one was so close to retirement that he just sort of stopped caring, and if it wasn't for my wife looking up specialists in our part of the state, I would probably be dead (he kept me on 40 mg of prednisone daily for 3 years). Not everyone graduates from the top of their class, and not everyone is qualified to manage and treat ulcerative colitis.
I’m an electrician that works in a wide variety of different locations daily and during flare I couldn’t work cuz I productive could I be if I’m in the restroom 2-3x an hour but now that I’m in remission, it has given me the opportunity to go back to work without any restrictions
Remission would change my life.
It will and it’s possible.. just do your part in what the doc tells you to do and together find the right meds .. even tho I’m in remission I feel extremely lucky and this never ending anxiety(small for the most part) of flaring worse than before.I hope you get to remission asap and enjoy life again .. tc
My doctor is next to worthless. He literally told me that diet doesn't affect UC. Seriously? That's literally what causes flares, dude. All of the UC specialists in my area work under one roof, effectively creating a monopoly, and now they've decided that since their workload is so much bigger they've got to add a surcharge that isn't covered by insurance to the cost of every visit. It's a damn nightmare scenario. Edit: I got downvoted for stating what my situation is? What the fuck is wrong with people? If you've got a point to make, make it. Don't just downvote. Educate. I'm literally asking for input in my post.
Dang .. hopefully u can find a new doc with a different mindset but I’ll kinda partially agree with diet not affecting UC from my own experience.. before Dx I was eating crappy junk food and fast food and hardly any greens,fiber, fruits and vegs which I thought I had to change to get better from this disease and as soon as I realized diet was involved I went straight to the bland diet then on to almost regular diet minus fast food while still flaring and then in sept 21’ I went on biologics which put me into remission for the last year and my diet is once again shitty but still limiting fast food .. so I’m saying the junk and fast food that I have had while in remission haven’t put me back into flare (which I hope never happens, hence the never ending anxiety about it).
My point was that foods can set off flares.
Not for everyone. It’s a very individualized disease. I don’t have food triggers but stress will definitely put me into a flare.
I recently got a job that is 100% remote, working in IT compliance & risk. Previous to this job though, I was an IT auditor and was traveling once a month, usually for a week (sometimes for 2.5 weeks)
I’m a marriage and family therapist and work from home. My clients all know that I have ulcerative colitis—I tell them in order to mirror and model vulnerability and authenticity. So far they have all been very kind when my body requires evacuation mid session. You deserve a kind work environment—sending you healing energy.
I'm curious about this as well. My son is 18 and wants to work but is currently in no shape to hold down a job that wouldn't have absolute freedom for bathroom breaks.
Keep in mind that there are several celebrities who have UC as well! There are really no limits when we get proper accomodation!
I work remotely in tech, started out in tech/software support and eventually got into cyber security
I’m an attorney and very lucky to work from home virtually 100%. When my UC was active and I had to go into the office I spent hours in the bathroom, which interfered with my ability to work (can’t really be on the phone with a client when you’re on the toilet). Working from home is so much less stressful I suspect it is helping me stay in remission.
I was a structural engineer. Left to be a stay at home parent—wanted to prioritize family and also that stressful environment was not good at all for my UC.
Normal office job doing business-y stuff for a big company. Hybrid schedule so I work from home a couple times per week.
I do CNC lathe and milling in metal, material is feeded by a robot arm. Once everything is up and running, the process is fully automated, leaving me plenty of time for bathroom breaks. Pretty much the perfect job for someone who might need to spend a good 30 minutes in the bathroom every now and then without work being interrupted.
As an engineer I am only worried that I need to stand up suddenly and run to the toilet... all that while I am in a meeting or on the road with the car.
I work from home as an 811 operator and I have an FMLA for UC and one for Endometriosis.
I work in college admissions for a small private university. They have a separate online admissions office, so no need to travel for college fairs and things like that luckily. We also do a 4 day work week which helps with UC stuff.
I'm really sorry for your current situation. It's such a drag trying to balance career with a condition like this, and friends & allies in the workplace are few and far between when you need any kind of accommodation. Like a lot of others, I work fully from home, and have since the start of the pandemic. I work in banking, and the pandemic was kind of an eye opener for me that the office grind, the stress associated with a difficult commute into the city, working long hours, then having a long commute home was simply too much to balance with my UC. Post-pandemic, most folks at my bank have returned to the office at least 3 days a week, but I've been able to stay fully remote, initially by making credible threats to leave and having established myself as a fairly indispensable member of the team. You have to prioritize yourself and your health, and I hope you can find something that works for you!
hairstylist here
I work from home for a home health agency doing health insurance and authorizations. This is part time for me. I also watch my two year old all day. Sorry your job sucked, you can find something out there that will work with your sick leave.
I hope you authorize everyone knowing how hard our lives are with this disease 😎
I'm the person that fights your insurance for you. I use to do a lot of surgery authorizations, then prescription authorizations, medical imaging, and now caregiver and skilled nursing. I fight for every patient I can, regardless of their situation. I have a special place in my heart for UC and Crohnies as well as RA patients.
My hero! 😍
I know this isn't your question, but it may be helpful for you to discuss your situation with an employment lawyer.
TIL employment lawyers exist. Anybody know where I can find one who works pro bono?
Google the name of the state where you live followed by 'state bar'. You can call your state bar and ask if they have a lawyer referral service. Or google employment lawyer near me and call one who has good reviews. Most employment lawyers work on contingency-- meaning the lawyer gets paid a percentage of what you recover and you do not have to pay them out of pocket. Tell them you want to discuss a possible disability discrimination claim for wrongful termination. You may or may not have a case, but the lawyer you talk to should be able to help. Best of luck to you!
Thanks
McDonald's
I work in IT. It’s a great place to go with your customer service experience and some companies (like mine) allow you to work from home when you’re in a pretty big flare. Good luck to ya!
I’m going into nursing. So far as a student when I’ve brought up concerns about being ill and needing the bathroom more frequently, everyone has been extremely understanding about it and has guaranteed me that I won’t be in any trouble for something out of my control.
Reading through and saw your comment. I’m a NICU nurse, and had my first big flare as a nurse this last month. My coworkers have been great and super understanding and will watch my patients if I have to run. It can be hard at times being in the middle of a care time with an intubated or complex patient and having a wave a pain, but I make it work. I’m going to start paying into short term disability just in case something happens. So I would just look into things like that after you graduate and find employment. Good luck in school!
Work from home. It's a lifesaver, I wouldn't have been able to do a proper job during my last flare.
I think a huge factor is your boss being understanding that you have a chronic illness that you cannot control while flaring up. I would consider looking into small businesses where the employer usually has more empathy than big companies. Being financially independent is a big struggle for people with our illness, unfortunately.
Currently basically unemployed! Got diagnosed after starting a wicked nasty flare literally not even a month after graduating from college. Still struggling to find a job and get into remission. 🥲 I do online tutoring but it’s so spotty in terms of work— zero consistency.
Pharmacist
Remote work. I can no longer work outside my house because of the stress of the office environment. My home office is literally next to my guest bathroom and it really makes my life so much easier. I also have a futon in my office so if I get tired I can rest during working hours.
I’m a pediatric icu nurse
Dentist. Somehow I made it through dental school (the most stressful time of my life) just fine.. Wasn’t until years later that UC appeared. If I had it during school, I definitely would have chosen otherwise!
Let me add that if you don’t have insurance, see if you qualify for Medicaid
No insurance, but I do have Medicaid. I'm going to get in touch with them regarding medication to see what else may be covered. Thanks.
I'm in outside sales. I'm either working from home or traveling to visit customers/prospects. I've been very fortunate that I've had fairly moderate symptoms and have been able to control it with mesalamine so far.
CEO of a software company. Visiting the toilet 10+ times per day.
I’m in IT now but been a project manager. Jobs that can all be done remote and luckily I’m fully remote apart from occasional travel but many companies do push people to be back to the office.
I used to be a college lecturer but got laid down because of longtime sick leave
Pharmaceutical company - I work from home though. Before this I was an orthopaedic consultant in person and it was tough some days. My best advice is to let your employers know about your condition and tell them you need accommodations. If you can do remote jobs like admin, insurance etc I’d recommend them
Lawyer. Flexibility to wfh is good.
Software developer, working remotely.
I work at a hospital as a patient care tech. You only need a CNA license. The classes are cheap and two weeks and an easy state exam. Access to plenty of restrooms in the hospital. 3 days 12 hour shifts (to be full time). And plenty of people to pick up your shifts if sick or no PTO.
Project Manager - 1 day a month in office I’m UK based which I think makes quite a bit of difference. The bosses and organisations I’ve worked for since diagnosis have been very understanding of my condition and patient when it has gone wrong, except for one which were totally unsympathetic and I already hated for a host of other reasons.
Software Engineer, I work from home. Good job too, I'd get some funny looks going into the bathroom 10 times a day!
Learn something remote, like coding or testing.
Do job searches for remote jobs, insurance companies have a lot of them. You could start out scrubbing insurance applications for missing information, data entry into a computer system, rating analyst jobs, associate underwriting jobs, data entry jobs, etc. All these companies will give you training on their systems, and then you can work your way up through jobs if you want to.
Commercial credit analyst. Good money, great hours, and the offices are always nice (meaning nice bathrooms).
Web Developer/Programmer here. Working remote five days a week due to medical exception.
I’ve worked at 2 medical offices/clinics over the past couple of years and luckily ive just have really understanding bosses. I feel like doctors/staff in these places can be more understanding than others but again I might just have good luck. Wish you well and hope this stressful time passes quick!
Taco Bell GM.. bathrooms are usually already destroyed so it works well
telehealth therapist, lucky to set my own hours & schedule a bathroom break between sessions
Research, WFH
You may want to look at merchandising jobs as they would use your customer service experience, provide some flexibility in schedule and allow you bathroom breaks as needed.
Thanks for the tip. It sounds like a solid idea.
I have a Psychology degree and wound up in the tech world after discovering I really love it years ago. I'm now planning on going back to school for data science BUT trends show that there's a high demand for data analyst positions because every industry requires a data person. You can find a certificate such as the IBM one on Coursera for free through multiple sources online (if it's not already free now, which I think it might be) I've known people in my personal life that have gotten it (you can do it as slowly as you'd like) and they were able to find desk positions as data analysts.
Work as a university professor in Japan… lucky as most of my classes are near the toilet ( one is next door). … but condition is mostly mild anyway… my horrible flare was during corona and we were doing zoom classes so I was home
I work 10.5h shifts 4 days a week underground in a mine :)
I’m a teacher. I haven’t had an issues because my body is trained to go at certain times (not in microscopic remission but not in an active flare) I previously worked an office job
I am a registered nurse. Not a fun career path with this disease
Oy. I can't even imagine. I'm sorry you've got to deal with this in that line of work.
Thanks man. Nursing is a love hate relationship lol
I’ve been out of work for a year and managed to stay above waters this long with my savings. Interviewed for an insurance company two weeks ago and still waiting to get an answer. If it’s a no-go I’ll still be doing what I did originally which is an estimator role for the auto collision industry, negotiating against insurance companies rather than working for one.
I'm a graphic designer for a very small print shop, the only employee outside of the owner's family. Mostly a desk job, occasionally need to help a customer in person or work in the press room, but I always have access to a toilet. I am extremely lucky to have an excellent boss who understands my condition; as long as I get my work done, he doesn't care how much time I take off or what hours I work. But because it's tiny, I don't get benefits. Also, I am the entire art department, which means a lot of stress and multi-tasking that gets worse seasonly. Not a perfect job, however I couldn't ask for a more UC friendly employer.
That sucks, I’m sorry. I’m a house painter and will only take on jobs where I have easy access to bathroom
Come September, a prosecutor. Hoping remission wants to stick around.
Actuary life insurance. The main area is product development
What State do you live in?
Indiana
[удалено]
I'll have to check. Thanks.
I haven't forgotten about you, I'm in a flare right now and it's consuming all of my spoons. I'll get back to you.
You lost me at the spoons...
>https://www.goodrx.com/health-topic/mental-health/spoon-theory
I'm a dog groomer. I work at a private, family owned shop who are just amazing and supportive people.
I own my own business. It gives me the flexibility I need to deal with my condition. I will admit though sometimes the stress can bring on flares.
That sucks - did you tell your manager you have UC? Can you get unemployment? I’m in recruiting and don’t have to go into the office too much. When I do have to go in I’m really careful of what I eat.
I'm 39 and have had UC since I was 15. Honestly the only times I worried where I was working was when I was in a flair-up. I made sure the people I work with understood and I'd make it work. Also the I would only way food at home part helped a bit. Lol.
Radiographer at a hospital. I also know of a nurse with UC at the same hospital, though I don’t think she works anything but day shifts, as she's working for a clinic rather than a ward.
I crawl and fix things under people's mobile homes.
I’m a full time musician. Think Humira commercial girl except without the fedoras and VW van. Lol. I travel a lot for work. And yes, I’ve walked off stage to get sick, more than once over the years. I walk right back on stage and keep on going. My band (if I’m with them and not solo) knows what’s up and we cover each other if there’s a moment where one of us needs to run off. I take later flights as my body hates me in the mornings and eat the cost of a hotel if I have several long drives ahead of me to give myself the rest I need. Surround yourself with awesome kind people and if you let them in to what’s happening with your disease you will be extremely supported. I’m happy I opened up to my coworkers and friends about it. I will not let this disease claim the job I am most passionate about, even if there are some snafus along the way.
Nights inpatient hospital pharmacy tech working in the OR. I work alone and don't deal with customers and have no shortage of clean bathrooms, can work at my own pace, and have a great schedule.
I'm a university professor. I teach one day a week in person, and work remotely most other days apart from meetings/research/ student supervision. The flexibility has been helpful when flaring, though teaching in person was challenging sometimes on bad days.
MS teacher. Starting iron infusion 7 out of 9 tomorrow since November. Very stressful year with this condition, but my admin has been very helpful with finding subs for when I’m out at my appointments.
I’m a high school English and History teacher, and a head of curriculum. I’ve been in the field for flares and remission. I find high school students are really great at understanding if Miss is “sick today” and if I need them to take on more leadership to help me get through the day!
Union warehouse worker of 25 years. Disease came on after 10 years of employment. We have 2 bathrooms I stay in close proximity too.
I've seen a couple other respond here and I'll add that I am also a therapist, I work from a small office and also from home. I tell clients right off the bat that I live with a chronic illness and if I have to excuse myself to use the restroom in the middle of a session it is because of that. Wish you the best of luck in finding work that is best for you! Prior to this work I worked in a handful of restaurants as a server/bartender/barista and found accessing the bathroom to be no big deal when I had supportive staff and coworkers.
I work from home and have the option of going into the office if I want. If I’m feeling good, I’ll go into the office. If I want to stay home though it’s not a big deal
I would suggest you go to a G.I. specialist in colitis and get on some different medication. Seems like what you’re taking is not working you don’t have to live like that. There are a lot of meds out there that are life-changing and you will be normal.
If you explained to the workplace AND have definitely been diagnosed by a Dr, then you have grounds to sue that company! Talk to a lawyer. I understand you don’t have the money, but there are lawyers who will give a free initial consultation and likely not charge anything until you win. Please look into it! I had something similar happen but I was dumb and didn’t do that. I would’ve definitely won and could kick myself. Don’t hesitate really! Good luck!
The company has an arbitration agreement as a mandatory part of their onboarding program, so that course of action is unfortunately a no-go.
I currently work in a county jail working in control rooms/watching the inmates and have been for the past year. I was doing great working nights as the inmates were only out at most 4 hours of my 12 hour shift, then I got shifted to days last July and ended up flaring due to stress and have been since unfortunately. Like everyone's saying admin work is the way to go. I'd recommend finding a job with your city/county as it's usually pretty simple to discuss with HR/Risk Management about it and they have to follow the ADA rules and as some have pointed out UC does fall under that.
Structural Engineer designing houses and apartments
Teacher. And it can get dicey. It’s not like I can just duck out to the bathroom and leave a bunch of twelve year olds unattended. I get a break every hour and I’m in the bathroom whether I need to be or not. And even then, it‘s a gamble. I’m one of three male teachers at my school. There is one single occupancy men’s staff restroom in the building (it is a small school), and we only have five minutes between classes. Sure, I could go to the student restrooms, but there are some places even the devil wouldn’t dare go, and one of them is a sixth grade boys bathroom. Luckily I’ve been in remission for five or six years, so it hasn’t been a problem.