Crohn's Disease and Employment

[I told you I was ill]

Hello, this is my first time on this forum.

I'm waiting on the colonoscopy (couple of weeks away now), but I'm pretty certain I have crohn's disease based on everything I've read.

Had major symptoms for the last 4 years now, and basically spent all day, every day, on the toilet. However, I was a university student all that time, so was able to shut myself in my flat and study all day, and would then not eat 24 hours prior to an exam so that I could get through it without having to go to the bathroom. Exams were the only time I left the flat.

I was able to get a good sponsorship for doing my course (this was before I started uni; the symptoms only began once I started the course), and so was paid through it, and therefore able to hide away in my flat on the toilet all day, without having to worry about going to work.

What I'd like to know is, how does anybody get by with this condition and still have a job? How do you get enough money to live on if you have to spend all day on the toilet, and are too tired to do anything else?

 

[I told you I was ill]

Oh, and as a side note, I did go to the doctor's initially about my health problems. It's a long story, and not really relevant to my question, although I don't mind talking about it.
I was misdiagnosed, and due to multiple, compounding, unfortunate circumstances, was basically trapped into having to hide it.

If there is a god, he is not fond of me!

 

[Astra]

Hi I told you I was ill

I've asked a Mod to move you to Your Story
There you will be welcomed properly and not stuck in this thread

xxxx see you there!

 

[I told you I was ill]

Many thanks Astra 101. I wasn't sure if that was the right place to ask, since I haven't been confirmed as having Crohn's yet, but if you think that's more appropriate then that's okay.

 

[emmab121]

hi.. im new to this today but ive have crohns disease for almost 6 years now i think. im 20 years old. When i was in school i missed alot of days in the important year year 10 and 11 while my friends were preparing for there gcse's i was ill in and out of hospital so that meant my gcse's suffered. but at the end i did come away with quite a few good grades. Im working at the moment in a large food store were i work on the checkout. I do have quite alot of time off sick but under the disability act they cant sack me they've told me this them self and they are working with me to make me comfortable and help me have time off for hospital/ doctors appointments. when im away from work i dint get paid so in my wages i am down alot but i just go steady with money, with living at home i dont need to buy much. having crohns and working is very hard but is possible. xx

 

[M2M]

welcome
I am kind of new to this also; and although I don't have crohns my lovely almost 24 year old does.
she does work and does ok
I would think you need to find a really good doctor a GI specialist that can confirm this diagnosis and then begin you on meds and then you will hopefully notice a difference.
it is pretty involved to find the right meds etc but get to a good doctor and good luck

 

[Jer's Girl]

Hi I told you I was ill! I know what you mean. Working is very hard, and sometimes very stressful with this disease. A lot of people can't work and are on disability. I work full time, but I am aloud to work at home when I am sick (I am very lucky). Even so, I have been dealing with the work/crohns issue a lot lately myself. There is really no easy answer. I'm sorry you are going through this too.

I hope you at least get your diagnosis soon so you can start moving into treatment options that will work better for you. welcome to the forum!

 

[ameslouise]

Hello and welcome!

I hope you are able to get a firm diagnosis soon and get on some meds to help. Are you taking anything now? There are so many treatment options out there to help keep Crohn's under control, and even induce remission. Many of us are lucky and can work thru our symptoms, some have very flexible and understanding employers, some work from home, others are on disability.

Sounds like you are from the UK and the others over there, especially Joan, can tell you about the disability system over there.

Good luck with your test - hope you start to feel better soon - Amy

 

[JetWhite]

Hello & welcome I told you I was Ill and Emmab121

working is tough but if you have a decent employer you can discuss suitable working arrangments and, hopefully, get a win-win situation.

All the best, good luck and keep on posting

 

[I told you I was ill]

Thankyou very much everyone for your kind and supportive responses.

I'm not on any medication yet, as I've still got to go for the colonoscopy. I've had many other tests done so far, and ruled out infections, celiac, viruses, and so on, and my doctor thinks it is most likely Crohn's disease.

It's taken me a while to get through the waiting list for the colonoscopy, partly because I asked for a specific doctor. After researching a lot about the GI doctors operating in my city, I'm certain he is the best available to me. Ameslouise is quite right in that I am from the UK, but I'm not too keen to post too many details that would identify me- most people seem to think I'm faking it, or not really that ill, and don't understand why I'm not able to do very much.

There doesn't seem to be many jobs I'd be either qualified for, or able to do because of the symptoms. Had I chosen a different career path early on (I chose my field when I was healthy), I would probably be able to find work in a field that allows me to work from home, in an office, or is generally far more sedentary. As it is though, I'm unlikely to find work in my field which doesn't involve a lot of travelling or working on site, and more basic jobs, such as as a labourer or whatever, I am unable to do due to being tired out all the time and having to go to the bathroom every 5 minutes. I wouldn't think any employer would be keen to hire or keep someone who spends most of the working day in the bathroom, and is very unproductive due to exhaustion when they are working.

It may be alright if I can get the right medication, but I'm still a little unsure of my prospects in any case. As I'm just out of uni, I don't have any savings or experience to draw from in starting something up myself from home, and my parents are pretty poor. I'm able to do some CAD though, and I'm starting to learn how to write computer programmes, in the hope that I might be able to do some sort of work from home.

 

[JetWhite]

It will come together when you are diagnosed and can get some treatment
I am still pretty exhausted all the time but then the treatment I am getting from work more or less keeps me ill all the time

What I will say is that if you find you are depressed, which is not uncommon in these circumstances, don't feel alone and don't feel you have to 'just get on'
Talk to your doctor and see about anti-depressants.
It makes one hell of a difference to being able to cope and gives you a chance to take it all in and form your own way of accepting and dealing with it.

All the best and never be afraid to ask for help and support :hug: