Crohn's and employment

[Kimberleyannecreate]

Hi all.

I'm new to the forum and need some advice ASAP.
In September I was finally diagnosed with Crohn's disease, after a horrendous year in and out of hospital I had to resign from my job in London working in the fashion industry

I took some time to get use to being on prednisolone, what with the strange side effects of mania, anxiety (leading me to have panic attacks) and insomnia. The steroids started to take affect, I put on weight, stopped having diarrhea and was feeling so much better. I decided to look for work closer to home, I got a full time admin role. I began the role whilst being on 15mg of prednisolone as this where I'd tapered down, however this is where the symptoms began to return.

My consultant decided to put me on immunosuppressants and continue to taper off the steroids, however they could take at least a month to get in your system. Whilst in my new role I found myself going to the toilet at least 10 times a day with chronic pains and the embarrassment of people wondering where I keep running off to. I'm struggling to think is it even possible to do a job right now? Should I let my body rest as having diarrhoea every day and working is really taking it out of me, I don't want to end up in hospital again

Has anyone else had the same symptoms when transitioning from steroids to immunos? What does everyone else do for work?

Thanks all.
Kimberley

 

[DJW]

Hi and welcome.

You've had a rough year. I'd suggest talking to the doctor. Let him/her know your symptoms have returned. What you're experiencing sometime happens when coming off pred.

Sending you my support. I hope you start feeling better soon.

 

[sue2003]

I think you should talk to your doctor to keep you on the least dose of prednisone that keeps you in remission. Imuran takes some time to work and transition should not be sudden.

 

[MissCadenza]

It can take up to three months for the immunosuppresants to work, so they should have kept you on higher dose of pred while that was happening. They did that to me so if I was you I'd go back to your doctor. I was kept on the higher dose until the other drugs started to kick in, then they tapered me back to zero. I was an anxious over emotional wreck while I was tapering off so what you experienced is pretty normal.

I have an office job and I'm forever running to the loo. I tend to get ignored though because everyone knows what's wrong with me and quite frankly if they have a problem with it, tough bunnies, my health is more important than what they think.

Definitely tell someone at your work what's going on with you. They should be understanding and if they're not then you can get them for discrimination because crohn's is a disability. Throw all the factsheets you can at them - Crohn's and Colitis UK have some great ones and my HR department has a copy of them ALL.

Also I notice you're in West Sussex - I'm just over the border in Surrey. Hi neighbour!

 

[Kimberleyannecreate]

Hi all,
Thank you for your lovely replies and advice. I will get back in touch with my consultant and explain what's happenening. Work is a pain in the arse, literally! I had to take Thursday and Friday off this week because I felt so weak and unwell.
On a new topic, what side effects did people start to feel on the immunos? How quickly do they set in? Been on for almost two weeks, started to feel very achey, intense headaches, today I was sick, and now just to top it all off I have started to grow a moustache and long side burns, with excess hair round my neck. Does anyone advise to get this waxed? Threaded? Will it come back worse. I literally haven't felt this emotional in a while, I can't stop crying and have terrible bags under my eyes! when does this all get better? Feeling very low ATM.

Thanks for everyone's support, it really helps to talk to people who have been to the same thing!

K x

 

[astarks]

Depends on what immunosuppressants you're on. The only time I've suffered from really achy muscles is with Remicade. Most of the other drugs, like Imuran, took a couple of months before they really built up enough in my system to have much of an effect, so it just depends what you're taking. Right now, the worst side effects I'm dealing with aside from the muscle aches are extreme fatigue, nasuea, and lack of appetite. It's definitely better than full on flare symptoms, though!

I definitely experienced a lot of those terrible side effects when transitioning from several months of Pred onto immunos, as well. I'm afraid that just comes with the territory. :/

I'm sorry to hear you're going through all this. Hang in there. It's tough now, but with time, it really does get easier to handle.

 

[Kimberleyannecreate]

I am currently on allopurinol and azathioprine.
Anyone else on the same? Experienced any of these symptoms? Today I have defiantly experienced nausea and then sickness, and having had diarrhoea for the last 7 days has made me tired and not want to eat due to the cramps. Feeling very low! Not sure if the diarrhoea is a side effect of the immunos? The lack of steroids in my body or a flare? Can anyone suggest any home remedies to help with the cramp pains/ diarrhoea issues?

K x