I have crohns colitis, when I was working it became inpossible for me to get a full 40 hours in at work, I had so many problems with cramps, diarrhea, headache and throwing up. My boss told me that he felt so sorry for me that I tried hard to keep going, he didn't fire me he just said I was to sick to work..I stayed in the hospital so much until I applied for my disability and got it, I would have rather worked but there was no way..I had two children and no help from their father, my parents helped me so much.I did manage to get us a place to live and made ends meet with the help from family..I was happier with my own place and being sick often was hard but I had my parents to take care of my children while in the hospital, its a hard road to travel trying to work with this disease, good luck and I hope you can find a way to work things out.

I work part time in a deli and my boss is very understanding i couldnt not work id go crazy if im ill someone will cover for me and then i will cover for them when needed.I couldnt work full time ive tried and always end up ill but i can get Incapacity benefit but still work 16hrs but only for a year after that i dont know yet. xxxx

I was diagnosed with UC five years ago, of course like many I can date it back much earlier than that. After first being diagnosed I attempted to find ways to continue to work with some of them possibly being unrealistic expectations on my part to prove that I could still be productive. Recently I was working as a long haul trucker when I had my most recent extreme attack. Prior to that I would have what I called normal attacks and would attempt to fit my driving work in around the attacks. This last attack landed me in ICU with sepsis and adrenal failure. That is the point where I realized that my situation is unique and my ability to work is hindered by this disease. My employer has put me on Family Medical Leave which means I can keep my insurance till I find other insurance. I have applied for disability but I understand that the way our government works that it will be a long slow process.

It definately is not a convenient time for my family but I am not sure any time would have been. Hopefully I can get the medical treatment I need since none of the medicines have worked in the last five years and second I hope that I can find a way to retrain to some other occupation that is more forgiving to the demands of this disease. Possibly a telecommute type of job that you are paid by the job not the hour. That way on bad weeks the company wouldn't be paying me to have an attack.

The main point I was trying to make is that like me, some people may continue to work to make them feel like they are a productive part of society. I probably should have put working on the back burner sooner and my health more toward the front so I wouldn't have had to see the extreme turns this disease can take. My ICU stay is guessed to be caused by to much steroid use, the only thing that would even slow the disease down. I hope this may help someone that is diagnosed to stop and make sure they are not continuing to work simply for their own pride. The symptoms of this disease are debilitating and should not be taken lightly. Asking for and receiving assistance from outside sources should not be seen as failure.

I had to quit. I am a teacher and took time off for the remicade treatments and then for surgery. When I did teach, it was hard on me and the students. I had to leave them way too much. I also was stuck in diapers since I was so far from the rr. It is a hard disease to deal with. I am sorry that you are struggling. I know what you are going through.

I know what you mean about having trouble working. I took time off from teaching to try remicade and then surgery. It was so hard to be at work. I had to wear diapers so I would not ruin clothing. It sucked. Hang in there. I know what you are going through.

Sorry for the double reply. The weather is messing with the computer, lol.

I give you tremendous kudos for working now, although it sounds like you are too weak to do so. I have been on disability since Feb. I am a ICU nurse and when I tried to go back to work, I was running to the bathroom often and was very weak. That and the stress of the job and the fear of never knowing when I was going to get sick was too much so I went back on disability. Now, thanks to Remicade, I am on my way to remission and hope to work again soon. Can you take a leave until you are in remission? If you are getting weak simply grocery shopping (I know how that feels!) it sounds like you need to rest and take care of yourself.

I have to work full time for my health benefits and money towards bill but some days are really really really tough to get through. I am really run down and in the middle of a bad flare now. Had to go to ER last week but luckily last hospital stay was November. Every day is a challenge and I never no when I have to stop what I'm doing to run to the bathroom. There are many days lately that I need to leave early or take a desk job for the day. Love to all:)

Thank you for your replies. it is terrible that we as sick as we are need to work. I took all of my fml. So I don't have any more time left. I did call the agency where I work today to see if i could stay part-time for a couple more weeks. I don't think they are going to let me do it. The stress of all of my families health problems are wearing me down. I am very worried about my husbands' surgery. If I am working more hrs. a week who will care for him. He is diabetic/ has had strokes and has a annerism. I say when a person is down kick them. If I had a magic wand I would make everyone well. Or if i won the lotto I would share with all of you. Thanks again.

Jean,

Besides the fatigue of UC, are you anemic? Have you had your regular (for me, every 3 weeks) of a CBC count? Perhaps you're just low on Iron.... PLUS, Iron does constipate some people, so for people like us with UC or Crohn's (me)... it actually makes us use the bathroom less.... just a thought... as I've hung on to the shopping cart like an old man.. b*tching at my sister to hurry up so we could go home... then I plop myself either on the recliner or on the bed, and just rest a few.... WE'VE ALL BEEN THERE... YOU ARE NOT ALONE.

i have chrohns/colitis, i was in the military, fighting a discharge for 2 years before paper-pushers forced me out. I am currently in training to be an EMT. i wake up every morning barely able to move until i do a thorough work-out to got over the joint pain followed by a long hot shower just so that i can do work properly.
I also have to watch my diet very closely. No red meat, no hot spices... well, you get the idea, because if i don't watch my diet... well, i wouldn't be able to do what i want to do.
Now, i am under no illusions. I know that most people with IBD have it worse than me, and that if i was having it as bad as some do, then i too would not be able to do what i am doing. Also, even with the fact that i have it "easy", per se, is that it is still difficult as hell. The pain that i subject myself to just to do this is insane. I have to work through the cramps, and i also have to work with the knowledge that if i am in the middle of everything, and my gut tells me that i have to go, we all know that sometimes one can delay that call... and sometimes not. I won't be able to tuck tail and run to a bathroom. I will have to shit my pants. I know this, but i need to beat this disease... it will win some battles yes, but i will not let it beat me. If this is my own body fighting against me, by God i am going to fight back.

Might I suggest a job that does not require standing. OK, I know it sounds terrible! I work in "cubicle hell", but I am able to dart to the RR when I need to. The walls of the cube provide a relatively stress-free zone to work in. I work because I have to. Before I got sick, I worked in a very stressful environment, like 70 hours a week. I left the hospital system that I was working for to get away from the stress and long hours. Cubicles are the devil, but it gets me through the 8 hours that I need to put in every day to pay the bills and keep my insurance.

I ramble, all apologies.

Really, the only issue that I have with work, it that I have to do it all. I am still waiting for someone to call me about my recent application. I applied to get paid to take naps. Do what you love, right?

Hope it gets better for you, Jean.

i had to quit working about 3 1/2 years ago.
I am 48 and had been working since I was 13. I was DX with Crohns in 97. I used to me a manager at a Truckstop. I would be helping at the registers and be in the middle of ringing up a customer and I would have to run off to the RR and leve them standing there. My Doctors tried to get me to quit working 2 years before I finally did. I was in denial. I didnt want to quit working. I loved my job. I finally told my boss that I wanted a demotion so I could continue to work. Well I had less duties, but the CD was still controlling my life and I just couldnt handle working anymore. I was either in the hospital or home sick more then I was a t work. I filed for disability and got my first check in only 6 months.
I miss working, but I finally had to realize that my health was more important.
My husband is a state employee so he has good medical, however if you do have to quit working and go on disability you will also be elligable for medicare.
Also if you do decside to check out disablity try looking into WWW.BINDERANDBINDER.COM OR CALL THEIR PHONE 1-800-BINDER
thedid all my paperwork for me and got me my disability within 6 months where as people that do it on there own it can takes sometimes years.
Good luck in whatever you do.

I work as a teacher, and I was lucky that the UC flare I'm currently still dealing with came on near the end of the school year last year. I used up three weeks' worth of sick days, but then had the whole summer to spend recovering. By the time school started again in the fall, I'd gotten past the worst part of the flare, gained back half of the 40 lbs. I'd lost and had enough energy to work again. Now though the flare continues (improving rapidly though since starting Remicade this week), I've gained all the weight back and have worked nearly a full school year with no days lost due to this illness thus far. I am lucky to have a bathroom right next to my classroom and an understanding friend and colleague in the class across the hall who will watch my class when I have to rush there for an emergency.