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Crohn's Disease
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Posted 9/27/2009 11:54 PM (GMT 0)
Please tell me how you all balance work and Crohnes??

I am at a point with my 1st flare of Crohnes that a decision must be made, give up my apartment and accept that I'm going to be unable to work fulltime or stick this out until I'm in remission...

Please help. The next Remicade infusion is tomorrow morning so I may feel better soon, may not. I havent been able to work a full day since May. Work and school and fun was my life before this, its all come to a screeching halt and idk if I'll ever get all of it back now. Life decisions need to be made and soon, Idk what to do!!

Any advice or your stories would be greatly appreciated. Thanks for being such a great community to be apart of.

Posted 9/28/2009 1:49 AM (GMT 0)
I'm blessed to have a position that I can work from home when I want (which is almost every day). I rarely go into the office anymore since I started this flare. I'm not sure how I could. I can barely get my kids to daycare, which is 5 minutes away, much less ride 30 minutes in traffic to get to work.
Posted 9/28/2009 2:27 AM (GMT 0)
Don't give up if you really want to work. Get creative, there are so many different jobs out there. You might not make the same money you used to but everyone makes sacrifices for this disease. It took me a while to figure out this disease and you are still early in it. You will learn how to live day to day and do all the fun things again with some changes. Good luck.
Posted 9/28/2009 3:47 AM (GMT 0)
I work fulltime and I am in a full-blown flare at the moment with fistulas, fissures, a seton and a mushroom drain which is poking out my butt draining the abscess. My work is great in that it is flex-time and I can start when it suits me, but I am pretty much always the first one in the office anyway and arrive at 8am every day. I haven’t had a sick day except for my surgeries. I find that early nights are essential for me, and I don’t do much through the week except get home and go to bed after dinner and some TV! I am stubborn and determined though, and I have been so sick at work sometimes that I have fallen asleep in the disabled bathroom at lunchtime from exhaustion, because I simply needed to lie down, and I run to the loo with D and spent a lot of time in there….. But I need to be working in order to stay positive and not get too depressed; I’m determined to not let this disease stop me. Don’t give up……. you will get back to work and you can still do it, you may just need some time out to get 100% better. I am waiting on remicade at the moment and have been in this flare forever…… the abscess has been torturing me pretty much all year but I have been determined to keep working. I had to have two surgeries when I’d first started at this job and I came back 2 days after my abscess surgery – I know I should have been back at work so early and it was a struggle not to cry or pass out back then but it made me feel ‘normal’ – so for me, a torturous day at work is still an accomplishment. I probably push myself too hard but that’s just me.   I know you can do it – you just have to believe in yourself and keep your chin up and make sure people know you’re sick, so that they are at least aware of what you’re going through. You will probably find yourself pleasantly surprised at how caring your co-workers can be
Posted 9/28/2009 7:18 AM (GMT 0)
I haven't worked since 2006, when I was hospitalized. After a few months to recover I decided to try and go back to work. I really pumped myself up, and gave myself that pep talk that "Crohn's isn't gonna beat me!" Yeah well, it kicked me back. Started to get sick, and spent more time in the bathroom then I could at my desk. I was scared I was going to start bleeding again, and just felt so tired. Granted I was still heavily anemic from months before, but I was technically in remission. But it just seemed like the daily grind didn't do my Crohn's very good. Thankfully I don't have to work, my husband is able to provide for us, and now we homeschool our son.

But some day I would like to go back to college, and be a teacher. Lately I was looking in to it. Then last week I was doing something and suddenly had to run out of the room. Didn't make it to the bathroom. Can't very well do that as a Teacher. :( I'm amazed when others can pull it off with Crohn's. I give them many kudos! But not all of us can, it's a disease, and sometimes will power just isn't enough.
Posted 9/28/2009 1:33 PM (GMT 0)
I have had this disease for almost 34 years. For at least 25 years of that I have maintained a fulltime job. Yes there have been bumps in the road, but once you find the right treatment, you can live a fairly normal life. I have been with the same company now for 20 years.
Posted 9/28/2009 4:06 PM (GMT 0)
My husband had a bad year last year. From March to about mid May, he could not work, he spent a majority of that time in a hospital bed fighting crohn's and c-diff. And even after May, he still wasn't 100% - he had developed foot drop in his left leg, was very tired after losing 45 lbs at the hospital, and turning anemic, and he was also being investigated to rule out MS. It was a very very trying time for both of us.

During that 3 month time, when basically he couldn't work, his job was very flexible. They basically gave him unpaid time off (FMLA + more), and also let him work from home from May to August, when he felt able to come back to work. Since then, he's been working full time, since remicade made him healthy again.

Now he's fighting off c-diff again, and this time, it isn't nearly as bad - he just prefers to work from home, to avoid using common restrooms and possibly spreading infection. So, he is just working from home - he expects if everything goes well to be back at work the first week of October. So basically he worked from home all of September.

I think the key to being gainfully employed with a serious chronic illness like crohn's is to find a job that will give you flexibility to both work your own hours, and from home when needed. Also, if you find an understanding employer, who will make it easy on you when health is rough, it makes a world of difference. So, more than money or position in company, I've come to realize that if you find a place that will treat you well, and give you kindness and understanding when you need it, you are darned lucky. Before my husband got sick last year, he was thinking of finding another job . . . now we are very happy for him to finish out his career here if they'll have him, because they were so good to him when he was sick.

Don't give up - there are jobs out there that are doable for people with Crohn's, and also employers who can have a heart.

PV
Posted 9/28/2009 5:47 PM (GMT 0)
I am able to work full time, but I don't consider my crohn's to be too bad. I wish you a speedy remission!
Posted 9/28/2009 6:10 PM (GMT 0)
When I was diagnosed with Crohn's, I was working night audits at the Hotel here. I was fortunate enough to have a manager who understood what I was going through, and she would actually let me sleep when the audits were finished. I stayed there long enough for the Remicade treatments to put me in remission, and transferred to another department. The biggest problem I have now is that the bathroom is at the other end of the building! shocked

I went on a 3 hour hike with my sister yesterday, and have done that several times this summer. I carry a fanny pack, and ALWAYS make sure I have tissue with me. Believe it or not, I've only had to find a bush once. smilewinkgrin

It DOES get better - hang in there!
Posted 9/28/2009 8:38 PM (GMT 0)
I work full time and I'll tell you what, it isn't easy sometimes. I'm in a bad flare now and actually stayed home today, but my work is so understanding. I also consider my crohn's very mild compared to others so I dont flare often. I can usually get mine to go remission but last year and this year having some problems. I'm waiting to go on Cimzia and start that this Wednesday so hoping to get back on track here.
Posted 9/28/2009 9:37 PM (GMT 0)
Thank you for sharing, I need to be more patient to let the treatment and dairy-free, gluten-free, red meat and sweets free diet to do its job so I can get back to work. I've been strong-willed enough to put in at least 4 hours a day and they are being very understanding. Two other employees have picked up some of my duties to help which is amazing. I'll just have to give it more time. Thanks guys!
Posted 9/28/2009 10:13 PM (GMT 0)
When I was finally diagnosed I was only working part-time because I had a small daughter and my husband and I had decided that I would be a mainly stay at home Mom. I was lucky that my boss's wife had CD and so he was very understanding, but I very rarely had to take any time off except for surgery. I worked through many painful days because I figured I could put up with pain for a four hour stint especially since I only worked a few days a week. I worked at that job for 20 years. I am now doing something a little more fun at a little less pay (ha!). I am watching a friends toddler 2 days a week. She understands that some days we have quiet days when I am not feeling my best and she is fine with that. He is a good boy and loves to play by himself so it all works out well. My point is that none of this is what I went to college for, but life has other plans for us, be it because of Crohn's or children. We have to adjust. I'm not sure my body could handle living the life I want to lead and working full time. And by that I mean having the energy to do the things that make me happy and having enough energy left over to work. I'm lucky that I can work part-time. I'm sure I wouldn't be as accepting of my diagnosis as I am if I couldn't do all the things I want to do. We have to find ways to fit the joy into our lives or the disease will take over.
Posted 9/29/2009 12:23 PM (GMT 0)
I quit my last two jobs because the stress of them made my Crohn's flare up.  I've been at my current job for almost 3 years but my arthritis has really been flaring for the last 8 months.  I used to have goals of becoming an HR Manager or specializing in a certain aspect of HR, but gave up on that dream and realized I'll just have to do whatever job I can do without getting sick.  I'm in HR, but not a manager.  The stress of knowing what bad things go on behind the scenes in companies is what makes me sick, but I'm trying to teach myself that I shouldn't let things bother me that don't directly affect me or my job.  I'm on intermittent FMLA so that I can take time off when I really need to, although I do really try to be there everyday.  I did have to have the rheumy put me on a reduced schedule for a month and my boss was great about it.  You just have to find the right place, the right job and the right boss. 

Posted 9/29/2009 10:25 PM (GMT 0)

I think that’s definitely the key – the job I am in at the moment does not cause me any stress (touch wood) – and I know this is vital for my health, because I have seen how stress makes my condition worse (when I was at uni and assessment time came around I was always SO much sicker).

 

Also, I am doing a job which does not include a lot of stressful responsibilities. I hope once I am in remission that I can take on something more specific to the degree I completed. Until that day, this job is perfect for my health and my boss is wonderful and very understanding with my condition, so I feel very lucky.

Posted 9/30/2009 6:10 AM (GMT 0)
Yes, all the jobs I had were quite stressful. Not sure I can think of one that wouldn't involve some stress though. If I was able to manage a full time job, I'm pretty certain it would mean more flare up's, and on more medications. As of now I'm able to maintain remission with just Asacol. I had a round of prednisone last year with a flare. But I figure the longer I can keep the bigger guns in my pocket the better off for me. I'm just able to take better care of myself at home, lower stress, more rest ect...

Now of course if I had to work to survive, that's a different story. But since I don't I can't see putting my body through more flare up's if I don't have to.
Posted 10/3/2009 10:48 PM (GMT 0)
Definitely not alone, with the challenge of holding a job..or let alone just a normal life. I used to work as a cashier and I barely made it to any of my shifts, my boss eventually let me go..I accepted that. Now I currently work at a Day Care part-time and go to class twice a week in the evenings. I believe it's possible, some people can be very understanding. My current supervisor is so understanding and as well as my professors, I let them know my condition, and make sure they are aware that I am determined to get the job done.

Wish you the best of luck Bella_sky!
Posted 10/4/2009 6:21 AM (GMT 0)
I agree Jen, If I didn't have to work to survive I would love to live with my parents and do my honors at uni, or a 2nd degree, but unfortunately I'm 23 and live alone and have to work. Boo!

Growing up in the bush was magic and I wouldn't change it for a thing, and want to raise my kids in the bush when I have them one day, but it is tough having to move so far away to work, study etc..... not to mention I wouldn't be able to access Remi from where my parents live. Ho Hum!
Posted 10/4/2009 8:17 PM (GMT 0)
I've been very blessed with a fiane who felt my health was more important then money. After 6 years of working full time and sometimes school part time. Being in the hospital 3 times a week. The doctor finaly told me I couldn't work anymore. I then started with Remicade. It was going real well for a few months. I even took a part time job at a grocery store to start off. that didn't last more then a month before I was back in the hospital. Realized I pushed myself (even part time) SO I gave up the job when Remicade caused RA. I went crippled for 8 months. now I am on humira, it's doing great for the RA and the crohn's too, haven't been in the hospital since my bday (July) but I may have endo, which I'm still suffering with pain. I'm hoping by the new year I can get this sorted and back to work. Get us out of debt.
Take it from me, who always needed to work, especially when I was living alone. Your health is more important So if that means moving back to your parents for a year and taking time off work to try to get your CD in remission, there is nothing wrong with that.
Good luck, let us know you decided on.
Posted 10/5/2009 12:15 AM (GMT 0)
You guys that are able to pull it off with Crohn's are just awesome! I hope to someday feel well enough to work, or maybe even start a new career. Who knows. But it's not encouraging when I can be doing something and need to RUN to a bathroom. Not too many jobs would be happy with that. Especially something in education like I'd like to look in to. :(
Posted 10/5/2009 12:46 AM (GMT 0)
Don't rule out education . . . I am a full-time Kindergarten teacher in a public school.  I have had two bowel resections and am currently on Remicade every six weeks plus imuran.  I have a seton due to a fistula, have chronic kidney stones, been anemic in the past (needed regular infusions), have two kids of my own and still managed to work full-time.  It can be tricky at times, I do admit, but it is doable.  It helps that I have a bathroom in my classroom (primary classrooms sometimes do) and good teammates that can pop their heads in my door to watch my class (I do not have any sort of aide in the classroom) if I need to run into the restroom.  I eat carefully during the school day as much possible, too.  I hope that you can pursue your dreams!
Posted 10/5/2009 4:28 PM (GMT 0)
I met with a career counselor at one point and he suggested going into the academic world, as the private companies I was working for stressed me out.  I am now doing the same basic job at a University (the same one that I met with the career counselor at).  My boss is more of a perfectionist than most in my office, but I can definitely tell you that a lot of the people that work here don't get in any hurry and don't stress out like people in the private sector do. 
Posted 10/6/2009 3:06 AM (GMT 0)
I only work part-time since my daughter was born but had the job fulltime before. It's been easy for me. I have a stressful type of job but it's in a good environment -- public sector. I have a lot of independence in how I structure my time and day. All that matters is that I get the work done at the right time and well. Our goals are biannual, so if I'm off for a week it's fine, I just make it up later. Other good things -- no one knows if I'm in the bathroom all day or not focused. There's no one hovering over me.
Posted 10/7/2009 7:37 PM (GMT 0)

Thank you for your responses. I've hit the Acceptance Stage finally. I went to management with my concerns and we agreed that I will train someone to be my supervisor so I can have a more flexible schedule and not be the only administrator in charge of proposals and high priority items.

I believe I'm going into remission but I'm still having severe joint pain, fatigue and headaches so full days arent going to work for me for a while yet. Or going back to school part-time, being a member of Chamber of Commerce, ACA fundraising,etc. Lucky I found out my parents owe me a ton of money from a settlement years ago, so I've been guilting them into paying me a couple hundred a month so I can keep the apartment and fight through these medical bills.

Thanks again for being here and being so responsive. Hopefully long-term I'll eventually get back to full-time and stay in remission long enough to be the busy body I was once. Its nice that most of you seem happy with decisions that you made to live your lives, with sacrifice. ((((hugs)))))  

Posted 10/7/2009 8:35 PM (GMT 0)
I am in the construction/cabinet building field. I have been blessed with some very understanding bosses. My usual day consists of 12 to 24 times a day in the bathroom and for a while I was missing a couple of days a week. Other times I would not have a BM for 5 to 10 days and would be in so much pain that it hurt to stand up. But I have been able to get through it all and would be lost without work.
When I was first diagnosed was the worse. I was so sick and weak and had went from 160 lbs to 118 and had to recieve 10 units of blood the first year. I was full of gangrene and had my stomach pumped for 7 days and having Prednisone pumped into me. Luckily I had a Dr. that was determined to not have to do surgery. In the first 2 1/2 yrs I was in and out of the hospital 18 times. It was a living nightmare, but we made it through and had been in a remission of sorts for almost 11 yrs before my next flare ups started.
The best time was when I quit smoking and my life was pretty normal. This new flare up is on the heels of about 5 yrs of remission. Work has been going good so hopefully this one won't affect it to much.

There is always some type of work that can be done from home so keep your chin up and try to not let it completely control your life. Hard thing to do, but it can be done.
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