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09-07-2014, 02:08 PM   #691
EvieBaby
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Location: Bolton, United Kingdom

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I work in reception for the doctors surgery where I'm a patient. Its a but weird at times but they are amazing and understanding and I can always get to see someone if I need to. It's perfect for me and I adore my job and the people I work with.
09-09-2014, 02:50 AM   #692
sleepallday
I am a Zookeeper who specializes in Primates. I also work in the Zoos' Education Department running tours for school groups and for our guest camp outs.
It is very physically and mentally demanding, especially considering our Zoo is located on a steep hill.. Some days I literally feel like I am about to collapse or might need to crawl but I've always loved a fight with myself. It's probably not smart but I'm the type that will keep going until I literally do end up passed out in a heap of ape poo.

I have also just applied to university to study a Bachelor of Nursing to become a RN.
Do any RNs have any advice on how they handle the work load and stress?
09-09-2014, 03:29 AM   #693
juggys69
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I work for a telecommunications company doing customer service in a call center. I used to be a loyalty agent but they moved the department cross country.

It has been a hard time working over the last 6 months since I got a major flare up and still technically do not know f it is Croh's or not, but everything points to it. I finally have been taking prednisone, and it is great.

My work has short term and long term disability, and I left work in Feb and got disability pay (60% of normal pay minus bonuses), I tried going back to work for a few weeks but I was unable to do so and my work told me to either come back full time, be fired, or go back on LOA. So I went back on LOA and they denied my disability pay this time saying the symptoms alone were not enough to allow me to get pay, therehad to be a definiitve diagnosis. Which is not true, and I am in the appeals process for the last couple months. I am back to work since Aug 1st, and missing about 40-50% of my shifts. So, making less in pay tht I was on disability.

My doctor says I should stop working. Health and welfare and my doctor says I should go on disability. However, I am scared to do it. I am a father of two great boys and a husband of an amazing wife, and I am the provider. I almost have put my wife through college to get her Vet Tech degree, and I was to give my boys everything. However, the idea of staying home is nice because I also want to be the dad that is a house dad and helping kids with homework and all that.

So, the doctor and health and welfare all think I should go on govt disability and not work. I disagree, and I want to work, but I was to find a job that I can do while I having the illness.

In about a month we are potentially moving to Kentucky, meaning I will be leaving my job anyways unless I can go on a long term LOA and get long term disability from them, which I might be able to with the help from my doctor.

Either way, I wont be working there anymore..in the sense of actually working. I just don't think the government is going to grant me disability checks even if that is waht the doctors says I should do. ...not to mention I would not feel right about it.
Wasn't going to post here until I saw this since I no longer work:

I haven't been able to work at all in years. I was a Chef, there is absolutely no keeping that type of job not even knowing if you will make it in a full week every week, and not many other jobs I can imagine either. I do have two other chronic conditions as well though, but just this issue alone could do it if its severe ( and mine is severe, gotten more and more so as time has gone by ) so here's to all you troopers, I guess I'm a wimp, I couldn't do it, nor could my boss or foreseeable bosses afford to have a me that could be a call out at any time.

For anyone headed towards my boat, get a lawyer before applying for SSI, I found out the hard way they are needed, seven years in and still waiting for them to decide if I am eligible. This is with documented chronic sciatica and documented chronic prostatitis, my crohns or IBS or whatever it is I had already lost my coverage and was on GPA, so no tests or specialists were allowed, so for the past seven years its just documented as "unknown abdomen issues" as GPA only covers seeing your primary, once a year physical and at most once a month visits. Now am on medicaid so finally getting the tests and specialists I need done to find out exactly what it is. My primary said she is 99% sure its crohns or severe IBS though, which now that I have my coverage, let me to looking around and googling things which led me here.

Here's to all of you, stronger than me that are still trooping on.
I was told the same thing, getting on SSI isn't as easy as doctors think. This is my warning to you, if you do ( and if yours get worse, or doesn't go into remission you will need to if its already putting you out of work ), get an advocate right off the bat, have them file for you even. I did not, as I felt I had two known chronic issues which are right on the SSI list and probably a third one. I am in year seven now of waiting on them to decide. They do not care at all that you have zero income while they decide.

Crohns and IBD's are also listed SSI issues. Don't feel bad about it, you put into it all your life right ? Well this is why, maybe you thought of it as retirement, well consider this and early retirement life threw at you, through no fault of your own.

If you go into remission and are feeling up to it, by all means, go back to work, SSI even offers a part time program to help people do that very thing, or just to supplement ( you are allowed to work so many hours a week, in a year before it affects your SSI payments ) their SSI.

As it says in there I was a Chef, added that as I am posting here even though wasn't going to.
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09-09-2014, 05:20 AM   #694
phoenixbennu
 
Join Date: Sep 2014
Thanks for the info. I have family members who have been dealing with the SSI and al the BS. It is a great deal harder than most Doctors even realize.

For me, I would love to be a writer. I have the skill, and I have done freeance writing for clients. I am working on a novel (well more than one) to publish on kindle, but it takes a long time. I am around 10K words right now on my current project, and aiming for 90-100K.

My wife is three months from completing her degree. Going to cost us about 600 bucks to get her back to class and do her externship ...all she needs is just an externship, she already pased all her classes, but we cannot find the 600 bucks to do it.

If wecan, then when we move, if we move, I am going to have her finish her externship and she will be the bread winner. ..and I will be the home daddy and the writer and push myself to spend as much time writing as I would have at a normal job.

I was good at my job too. Making bonus every month and more. I missed almost the entire last two days of work, though. THe prednisone killed me with migrained this morning. I could not see straight and by the time I felt up to going into work, I was already called in. However, the prednisone, aside from side effects, is AWESOME and has totally stopped all the diarrhea and most of the pain. I know it is just a bandaid and a false remission for me, but I am enjoying it while I can. Its the first time in over 6 months I have felt normal.

I want to go on the disability leave from work, which will cover me for the next two years at 50% of my normal income, enough to get by, while my wife finishes her school and gets a job and we can stabilize.

I lost our family's apartment because my disability checks were over amonth late or so having to appeal. I flooded the bathroom from spending hours on the toilet and in the shower trying to clean myself up after defecating on myself or having lon bouts of diarrhea, so I accidentally damaged the floors and the landlord wouldn't work with us, even though I offered to pay for the damages..

Now we live with my mom, for a few months, while we prep to move.

I have two wonderful boys and the best wife anyone could ask for, and all I want is job that gives me the income and stability to provide for them. I do not care ot be rich. I dont care if I work til I die. I just want to make sure they are covered, and while it may seem irrational, I feel like a failure if I don't. I am not all heman and macho and think that only men should work...quite the contrary...its not my obligation to work and be the bread winner and make the most money..it is my responsibilty as husband and father to make sure the bills are paid and needs met and food on the table so that my wife can pursue her career and my kids can do what they want. It makes me happy.

However, working for over 6 1/2 years someplace, and I feel like they could care less about the issues here. I cannot get a clear diagnosis, and all I know is that I get 24/7 severe abdominal pain, diarrhea, and all sorts of fun stuff. and only lomotil and prednisone have helped at all. Imodium, and many other otc and prescription drugs did nothing or actually made it worse.

oving to kentucky is going to be hard enough. Where we are moving, there are very few jobs, and most of them are retail or jobs where I cant get the accommodation I would need.

I am praying that I can just go on a permanent LOA, get long term diability (which I completely qualify for..being that my work's disability pay only requires you to be unable to perform 20% of your material duties or miss 20% of your earnings and hours to qualify..and I miss about 40-50%) All they said was holding me back from getting disability pay was having a definitive diagnosis of my symptoms. If I can get the LOA and disabilty pay, then go to kentucky, get my wife through school, and get her a good job, then I can stay at home and write and be a dad.

My prayers out for everyone struggling with this, because I know I am not the most hard off. I may be homesless and hoping on a gofundme campaign that has only one donor in three months to fund gas money and cost to move, but at least I have my wife and kids and I would take that over being healthy and being single
09-09-2014, 09:20 AM   #695
EvieBaby
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It really makes me sad to hear that so many people are struggling so much financially while having to deal with this. I consider myself fairly lucky that I've not had to have huge amounts of time off work, but I do work part time and I try and rest as much as possible on my days off as this really makes a huge difference to me. People should not have to be in this position because their body is doing something they have no control over. I'm really sorry that this is your situation and I sincerely hope that things work out for the better for you. You seem like a really positive person and I really do wish for the best for you 😊😊😊😊
09-15-2014, 07:51 AM   #696
MonkeyLing
 
Join Date: Jan 2014
I do android tech support in a call center for a large wireless carrier. I haven't had too many problems so far. But hopefully starting on Humira, my body will quieten down soon.
09-24-2014, 03:02 AM   #697
James_S
 
Join Date: Sep 2014
Location: Wyoming
I am a SEO and most of the time work from home so talk about comfort. It's really helpful.
10-02-2014, 07:27 AM   #698
Jimmy James
 
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Location: Seattle, Washington
I have also had to change the way I make a living due to Crohn's. Unable to work a normal job, I was forced to find a way to make a living from home. I currently do ebay sales and teach music lessons for a living.

But I have researched other work from home options and they are abundant these days. I have considered going back to school to become a paralegal or medical biller, both can easily subcontract or start their own business and make very good money. There are also IT jobs in high demand, data management and other computer fields that one can do from a laptop, sitting on a tropical beach if you want.
10-04-2014, 05:03 PM   #699
lilac
 
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I'm a mental health nurse. Love it
10-05-2014, 04:07 AM   #700
kirstyls
 
Join Date: Oct 2014
Location: Maidenhead, United Kingdom
I'm actuly being diagnosed and on steroids at the moment.
I work In a nursery which means it is very difficult to suddenly rush off to the toilet because of leaving the room under staffed also not so easy to pick the children up when your not having a good day pain wise.
I have been looking for another job now as I've found they seem to be getting impatient with me and all my appointments anyway.
10-05-2014, 08:30 AM   #701
syzygy
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Location: Northampton, Massachusetts

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It's really nice seeing how many people are so resilient and able to keep doing such challenging jobs. Love those positive posts!
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Intermittent SBOs starting in 2005
Diagnosed 2013
Started Remicade October 2014
10-05-2014, 05:45 PM   #702
sleepallday
I'm a mental health nurse. Love it
I've just applied to Uni to study Nursing. Do you find that you get tired from your work? If you had Crohns whilst you were studying, do you have any tips on how you made it work?
10-05-2014, 07:37 PM   #703
lilac
 
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I've just applied to Uni to study Nursing. Do you find that you get tired from your work? If you had Crohns whilst you were studying, do you have any tips on how you made it work?
Good luck with your application!!

Yeah, I had some serious fatigue at times - especially on the wards where I was there for 12.5 hour shifts - murder

I had my diagnosis 3 years prior to starting my training so I had figured out the little tricks that worked for me by that point. I'd say, for studying, do it in short bursts and powernap to keep you alert. For the actual placements I kept a very strict diet as I was desperate to avoid flaring so I practically:

- lived on fish (good for reducing inflammation and boosting brain power too), banannas (slow release energy, and for me not a trigger food) and water

- I was also strict about sleep and never stayed up past 9.30 because I was usually exhausted anyway but if I did have a late night I would suffer for it for days later

- restricted my eating on working days so there was no "urgency" to get to a bathroom (not sure I'd recommend that one per se, but it worked for me)

- I kept all my doc appointments and bloods up-to-date

As a qaulified nurse now (and in an active-resistant flare), I tend to have switched the restricted eating bit to having liquids like complan so I'm not malnourished. I'm a community nurse so I know where all the supermarkets are so I can access bathrooms when out and about. I take methorexate so I administer it on a friday night so I'm not ill with the side effects mon-fri when I see patients. I tend to have lots of mint tea when it's my office days as I don't like taking painkillers regularly as they can sometimes make me drowsy and if you have inflammation in your rectum (as I do) you can become constipated (with codiene for example). Mint tea can help with stomach cramps, not sure about the rectal side of things, but I just tell myself it does that as well.

Hope that helps, but you'll find your own little tricks that will work better for you
10-09-2014, 07:43 AM   #704
sleepallday
Good luck with your application!!

Yeah, I had some serious fatigue at times - especially on the wards where I was there for 12.5 hour shifts - murder

I had my diagnosis 3 years prior to starting my training so I had figured out the little tricks that worked for me by that point. I'd say, for studying, do it in short bursts and powernap to keep you alert. For the actual placements I kept a very strict diet as I was desperate to avoid flaring so I practically:

- lived on fish (good for reducing inflammation and boosting brain power too), banannas (slow release energy, and for me not a trigger food) and water

- I was also strict about sleep and never stayed up past 9.30 because I was usually exhausted anyway but if I did have a late night I would suffer for it for days later

- restricted my eating on working days so there was no "urgency" to get to a bathroom (not sure I'd recommend that one per se, but it worked for me)

- I kept all my doc appointments and bloods up-to-date

As a qaulified nurse now (and in an active-resistant flare), I tend to have switched the restricted eating bit to having liquids like complan so I'm not malnourished. I'm a community nurse so I know where all the supermarkets are so I can access bathrooms when out and about. I take methorexate so I administer it on a friday night so I'm not ill with the side effects mon-fri when I see patients. I tend to have lots of mint tea when it's my office days as I don't like taking painkillers regularly as they can sometimes make me drowsy and if you have inflammation in your rectum (as I do) you can become constipated (with codiene for example). Mint tea can help with stomach cramps, not sure about the rectal side of things, but I just tell myself it does that as well.

Hope that helps, but you'll find your own little tricks that will work better for you

Thank you so much for your response! I really appreciate it
It's so nice to know that there are people out there doing really well for themselves and kicking Crohns butt back!

I'm going to start giving these ideas a go for sure!
10-16-2014, 10:25 AM   #705
cody12
 
Join Date: Jan 2013
Location: Dallas, Texas

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I do general labor at a temp place. I work on the days I can and take off when I have to. It pays very little but its what I gotta do right now. Holding down a permanent job has been hell for me.
10-20-2014, 09:09 PM   #706
Tamera
 
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Location: Georgia,US

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I work for a company and they have been great so far! I am a customer service representative and it is hard on the phone when I have to go but my co-workers will cover for me! My manager advised me to get FMLA to hold my job while my doc tries to come up with a diagnosis!
10-22-2014, 09:19 AM   #707
sammyb22
 
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Location: Columbia Station, Ohio

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I am a tool crib manager. Kinda funny im a manager that can't manager her own crohn's!
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10-26-2014, 02:21 AM   #708
lost kitten
 
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Join Date: Jun 2012
Location: South Australia, Australia

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My main job is disability support work which I enjoy apart from having to deal with my current manager.
Also work at a hospital transporting patients down to the theatres for surgery etc. Hoping to move into the theatres eventually.
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Crohn's Disease. Currently on: Humira, Imuran, Sulfasalazine, Folic Acid, Somac.
10-29-2014, 04:25 PM   #709
GinnyNinjaGirl
 
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Location: Calgary, Alberta

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I find that things are easier with a job where I can choose my own hours. That way, if I'm suffering from a lack of energy or if I'm having a flare-up, I can tend to myself without feeling that I am disappointing others and laying too much of a burden on my coworkers. My own idea of hell is a M-F 9-5 job.

I am a writer and interior designer. It works out - for the most part.
11-14-2014, 06:12 PM   #710
VilliVagabond
 
Join Date: Apr 2014
Location: NYC, New York

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Remember guys,

Keep fighting the good fight. I have Crohn's. I currently work as an Investment Banker on Wall Street. You can do whatever you want, focus your energy on doing EVERYTHING you can to stay healthy.

My Monday through Friday -
Wake up 6:00 a.m.
Cook all my food for the day (SCD)
Exercise for 20 minutes (usually Yoga)
Shower
Go to work by 8:30
Work
Leave work by 8:00 (usually at the earliest)
Cook some form of healthy snack (salmon, veggies, honey / almonds)
Sleep.

You can do it.
11-15-2014, 11:43 AM   #711
Elektrikhd
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Join Date: Nov 2012
Location: Washington, New Jersey

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I'm still trying to find the magic "can do it" switch. Because it's been getting harder and harder every day for the past couple few months. I was doing ok for a while, too.
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Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)

depression 2000, migraines 2012, glaucoma 2014

Humira (40mg/week)
Asacol (800mg 3x/day)
Prednisone when flaring
assorted supplements

Topamax (migraine)
Sumatriptan/Sumaval (as needed, migraine)
Latanaprost (glaucoma)
Viibryd (depression)
11-16-2014, 04:37 PM   #712
sue2003
I am a professor of medical genetics, teach medical students and see patients with genetic diseases. I work in children's hospital. After my diagnosis, some of my colleagues started to diagnose patients with Crohn's disease previously remained for years undiagnosed
11-22-2014, 06:57 AM   #713
staloffn
 
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Join Date: May 2013
Location: andover, New Jersey

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Horse trainer/barn manager, and now i`m a rabid raccoon wrestler.(see other post). nope not bitter at all...
11-23-2014, 02:06 PM   #714
lisadc1
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Join Date: May 2014
Location: Kentucky

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Phoenixbennu, what part of Kentucky did you move to? The economy here is not great, I agree. Depending on your skill or trade; I teach and am blessed to have a job. Excellent GI's though, both in Lexington and Ashland areas...
11-23-2014, 09:42 PM   #715
j.reed315
 
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Join Date: Nov 2014
Location: Minnesota
I am a CNA at an amazing assisted living. My work is extremely understanding and have even donated money to help pay for my medications. Feel very blessed. I do only work every other weekend try to pick up a Friday. That is all my body can handle. On Monday my body is in recovery mode. I am currently trying to get on disability. Which takes forever!
11-24-2014, 02:15 AM   #716
hamster139
 
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Join Date: Mar 2009

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I used to be a Professor, then when the extreme fatigue from Crohn's kicked in like an atomic bomb on my life... I could no longer do much of anything.. so I've had pretty much no options other than working from home. But thankfully, Im pretty adept and doing work lying down on the couch
11-26-2014, 03:01 AM   #717
gracestrong
 
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Join Date: Nov 2014
Location: Atlanta, Georgia
Team Lead/Manager : Software Engineering.
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Crohn's with extra-intestinal RA like arthritis.
My Crohn's is systemic and located in my small intestine. Diagnosed via a pill cam.

ER Visits: 4, Pill Cam: 1, Colonoscopies: 4, Endoscopies: 4, Gastric Ulcers: 3, CT Scans: 2, Barium Fluoroscopy: 1, Contrast CT Scans: 2, Diet Trends: 5, Different Meds Tried: 14

Current and shortest med list yet:
Remicade
Celebrex
Prednisone
OTC Antacids
(Off 6MP but probably going back on it.)

http://www.gracestrong.com
12-17-2014, 10:15 PM   #718
Jewbs
 
Join Date: Dec 2014
Location: Utah
I operate snowcats at a ski resort. sitting down for long stretches of time is something I don't have much of a problem with, but I have ended up missing about a week every winter due to a flare of sorts. my supervisors and coworkers are pretty understanding but it does put stress on everyone else since it's a pretty small crew and they have to pick up the slack.

I love it and don't see myself doing something else for the next few years as long as my body continues to cooperate.
12-18-2014, 06:00 AM   #719
2thFairy
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Join Date: Sep 2010
Location: Dallas, Texas

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Welcome to the forum, Jewbs!
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
12-19-2014, 02:38 PM   #720
inksane
 
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Join Date: Nov 2014
Location: Richfield, Minnesota
Cement truck driver. It sucks when I am having a flare and there is no bathroom nearby.
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