I work as a property lawyer and I find crohns is really affecting my perfomance. Fatigue means I often struggle in the mornings and lack concentration. Whilst employers can often be sympathetic they invariably get fed up after a while and I'm left feeling guilty for being ill. It's almost as though the employer thinks I'm using the illness as an excuse which can sting quite badly. I don't think any crohns sufferer would choose to live this life if they had any other option.

Do any others on here work full time and what effect has crohns had on their working life?

Hi!
I'm a 22 year old medical student from hungary. I'm learning all the day, i cannot rest any minute. I don't have any sympoms 2 years ago. My Crohn was diagnosed 3 years ago. That time I was 40 kg, bone and skin. I missed one year from school. After then I planned that I'm going to find my answers to crohn. So I'm learning all the day medicine. I usually sleep 6 hours per day. I hold the diet, but I am brave so I tried to exotic foods etc. I can eat everything without stomachpain. I recreated myself and I have my own goal to research this disease. Another important thing: I'm honest with the people, with my patients too. They can trust me, and i can trust them. I think you should more honest for the people. Maybe that can help you.
Tom
sry for my english

Hi Oli

I work for a small cabinet making company and my boss has been very understanding even though i am still awaiting a diagnosis. He has told me to work when i feel i can, used to do about 60 hrs a week but recently have only been doing 25 hrs some weeks. I am ok first thing most days, it is in the afternoon that i get very tired and i also have a problem not being able to concentrate very well.

Take care

Ian

Hi oli, I was 99% diagnosed in October last year, but i was so ill in August that i was off work and unfortunatly im not back in the work place, because im in a lot of pain, and with a few seconds warning that i need the loo, i have had a few accidents, which has now caused me to become depressed, and anxious about leaving the home alone, I know how you feel about the work stuff, My emplyer has been fab, but there now talking about finishing me on the grounds of ill health, which i totally understand, They cant keep my job open, and has you well know crohns, will be lurking there in the curtains one minute and the next woops its to late, hope all goes well tc xxxsuexxx

Oli, I do work full-time but am lucky enough to a) work from home and b) work with a worldwide group. This means that I can be out of bed and at my keyboard within minutes and it also means that I don't need to stick to 9-5, I can do the work when I feel up to it. I have often gone for a couple of hours nap in the middle of the day and then come back to the work.  It is often more convenient to be working early or late as that gives me a chance to be online at times when people in California or India or Singapore are around too. Working from an office would be tough for me as for most of us but my current role seems to work OK.

I am the Headteacher of a large inner-city primary school. I've had surgery twice in four years - and lots of other treatments. After 15 yrs I am only just facing up to the fact I can't beat this. I'm still working hard -but, it can be tough. I've been successful despite Crohn's but, relationships have suffered. There's no right answer or right way to do things.

Juggling appointments is pretty tough - blood tests, injections, tests, hospital follow-ups its not easy to get them in the working day. Yes I'm shattered all the time -but, I don't think I know what normal is anymore.

I've really had to think about whether I should be working at this level - but, why shouldn't I just because I have Crohn's. The same goes for all of us. It is that quality of what we do that should be judged - not the fact we sometimes get tired or have appointments.

I used to practice law as a Barrister but changed occupation to more mundane but better paid work. Fatigue is the biggest problem I have and I find that I have to fight tiredness throughout the day. I also suffer a lot of pain and this impacts on me at meetings and access to the loo is sometimes difficult. I am lucky in that I can get to medical appointments without too much difficulty but have to juggle this. Hospitals and GPs do not seem to care if you have difficulty attending during work time. I refuse to give up work although there are times when I wish I had the money to call it a day. It all comes down to money for me as I have a wife and children and need a reliable income. I know what it is like to be skint and signing on and never want to rely on state benefits again.

Keep on trucking.

I am i the same boat as you Ian, apart from the wife and kids, but i do have a huge mortgage to pay ever month. If i had the money i would give up work tomorrow, seem to be able to work for a couple of days and then have to take 1 or 2 off as i just feel exhausted, trouble is my work is very physical.

Keep smiling

Ian H

Hi Ian

I started my working life in construction and trained as a carpenter / shopfitter  - city & guilds in my day - before turning to law. I don't envy you as I well know how physical and demanding cabinet making and any joinery work is. I always thought that when I retired, I would make small items of quality furniture at a snails pace and never have to go on site. Here's hoping.

Regards

Ian

Hi Ian

If i had enough money in the bank i would i would like to try and turn my hobby of photography into some form of money making venture.

Keep smiling

Ian

I work as an administrator, in a modern spacious ofice with excellent facilities.  I am also very lucky that my employer is a trade union (ie they have to set an example by doing things properly) and that my manager has worked with people who have had Crohn's for years.

I've never had a problem with getting time off for hospital/GP appointments but I still feel guilty about taking the time, even though I make it back up.

Sometimes I wish I could work part time, or afford not to work at all.  Then I remember the massive satisfaction I get from doing my job and it makes the battle through fatigue and pain worthwhile.

I got made redundent and am not looking forwrd to getting a job as my crohns has been flairing every two months.
Would not look good and i cant hide it!
Its a worry.

I work full time as a nurse. While my Crohns was under control I had no problems working at all, but since I started my current flare (about a year ago) I've really struggled with the physically demanding nature of my work. I've been on long term sick leave since Jan, I tried to go back in March and lasted 3 weeks before I was off again. It just sin't the sort of job you can do when you keep running to the loo/having to sit down because of cramps. I hate it, I just want to get back to work, I go onto half pay in a few weeks which is scary as I have a mortgage to pay and a little boy of 20 months to support (luckily not on my own, but my partner's salary isn't immense!)

My employers have been really understanding...I guess being the nhs they have to be! lol! I'm having surgery in 5 weeks and am really hoping it will be the key to getting healthy and getting back to work!

My job is in Management Accounts is incredibly boring, the problem too many staff and not enough work, so nothing to stretch the brain, and to take my mind of the various goings on in my body, oh to be able to afford to give up work.  No, my husband says count my blessings, the job is not difficult, it pays well, shut up and keep my head down, very hard when you need more to keep you going.  My employers have been very good, and I know I'm lucky.  I keep playing th lottery and live in hope....................

Hi, I'm a bus driver and tiredness normally sets in between 12pm and 2pm, never thought it was related to crohn's until I read on this forum. I have to take a cat nap even if its 5 minutes and use cold water which i keep on me to chuck on my face and neck to freshen myself up, it works for a while but not good enough.

On days off I can sleep up to 2 hrs or more as I get very lathargic.  I'm due to see my consultant today so I will bring this subject up with him.  Ive had some very close calls while driving.

Meherwan has i said on the other post its the near misses, or the actual accidents that i cant cope with, the pain and the runs are really bad, and they keep me house bound on my own i do venture out, with family and appointments, but thats all, has ive lost all my confidence due to the many accidents ive had, ive been given lopermide for this, but when i take it i go about three days with a poo at all, and then i suffer for about week after that i i lose the back log ive got, sorry to be to up front,its best to be up front, and then its not misleading, hope you agree. tc xxxsuexxx

Im a nursing student, and Im quite worried that my disease will affect my future career and current studies. I don't want to take days off from being unwell or being in hospital. Any advice?? xxx

Jodie xxx

All i can say is that i didnt want to take time off Jodie, I work in a shop and at time ive found really hard to cope with especially when your on a till or with a customer and urgency takes over, its just so embarrassing for me, so off i run and sometimes make some times not, so its the stress that then takes over, so i think basically its a what the situaation your in job, as in Are you near the loos, is the pain or the runs that cause most trouble for you, how are work with you while your off, Again mine have been brilliant ive been off coming up for a year, and now there talking of finishing me on the grounds of ill health, im not happy about this, but i understand this action, so ive accepted it, but the thought of being unemployed is upsetting me has im 42 now and never been out of work since i was 16, so very scary and daunting prospect, hope you get the answers you need Jodie tc and let me know your goin on xxxsuexxx

Hi Jodie

I think firstly to protect yourself you need to approach your school of nursing, or if your already on a ward then go to HR and notify them, that way you'l always have the back up in time of need. Are you part of the Nurses Union?

I don't know where your at with the disease, mines only just been diagnosed, and my symptons seem way off from you guys out there. I admire you continuing your studies, I put 10 years into nursing (unqualified) and I regret that I never went for the qualification, now I do part time community care and full time mummy.

I suggest you put as little effort into worrying about the future, cover your bases for back up should you ever need them, and focus on your career and future prospects, don't let this knock your confidence, there are plenty of people out there who'l do that for you.

Jo xx

I'm actually only starting my studies this year, so your tips will be perfect for me in the next few years. I've always wanted to be a nurse and I'm too determined to let this illness stop me. Im just worried it will be other people who try to stop me, you know?
I actually work in a small coffee shop atm with only 4 staff including myself so i hate taking days off and phoning in sick, because theres hardly ever anyone to cover, which makes me feel guilty. My manager was fab at the start (shes a very happy person, all the time) but I think maybe shes starting to get annoyed. I don't want to be dismissed as I'm planning to leave soon anyway, so no biggy.

Thanks for your words of wisdom and advice. it really helps to vent and get answers

Jodie xxx

Hi Jodie,

I'm a nurse, so if there are any specific questions you want to ask about nursing with Crohns please feel free to ask! I was lucky to be quite well through my studies...but I talked to my personal tutor about the crohns when I 1st started and she was fab. I had extra meetings with her to make sure I was on track, and had her support if I needed to apply for mitigating circumstances for late coursework. I wont lie, the placements were hard work with the extra fatigue from the Crohns. but again, talk to your tutors if you start having probs and they are usually really understanding.

Unfortunatley I have been fighting a flare up for nearly 2 years, and have been off work for 6 months. Work ahve been really understanding (I think the nhs have to be!!) Ward work is hard with Crohns, you often can't just drop everything and run to the loo and you are on your feet all day which is exhausting...but it is such a rewarding job it really is worth it. I have moved onto a short stay ward where the patients are generally well (only in for 1-2 nights having elective procedures) which really helped as there is alot less heavy lifting. My manager has also converted one of the visitor loos on the ward into a staff toilet so I don't have to leave the ward if I get caught short. Little things like that make such a difference!

Joide, I really hope your Crohns stays controlled enough to let you cope with your studies. As I say any questions please do ask. I'm happy to help!

Hi Jodie

I've had Crohns for about 10years, undiagnosed until last year.  I have struggled to maintain a full time job,and up until last August, hadn't had a day off sick, however I then had 9 months off and have been very ill.  Since returning to work in April, I would say that I have made a vast improvement (despite still having the runs 20 x a day and extreme tiredness).  I think having a positive attitude and a busy worklife, gives you something other than your illness to focus on.  So it may not have cured my crohns symptons but it has made them easier to cope with.  I had an OH review and now have an office near a loo, although this opens out onto a very busy corridor (so I have to go elsewhere to use a quieter one) but my work have been v supportive.    Since returning to work, I have been put in a redundancy situation and I have been fortunate to get the job and now I'm head of several departments within a corporation.  I did ask at the time if my illnes would go against me but was told that it was how well I do the job that mattered, not the illness, which is absolutely great that my employers think like this. Good luck with whatever you do - just to tell you, don't let the illness get to you.  All the best, Lou x

Hi

I am a new member and diagnoised with crohn's at Christmas 2009.  I am in my last year of teacher training and have my last placement coming up, I haven't been able to compete it previously due to the crohn's and am quite apprehensive about it.  Can anyone give any advise on how best to cope with it ( still going to the loo 5 to 10 times a day) and is there anyone out there who has crohn's and manages a teaching job.

I am worried that I won't get employment due to the illness.

Thanks

i've lost my job because i was unreliable. cuts in staffing had to be made so i was the easiest target. mind you, it was a blessing in disguise because i have been really poorly for the past couple of years, admitted to hospital for drip feeding, blood transfusuons, injections for this that and the other. i now have brittle bones and have to have them monitored. i feel so weak most of the time. having to get up countless times in the night is exhausting. i managed to work in a heavy manual job, i'm sure i couldn't do that now. my advice is to talk to your work colleagues, generally i find that people are sympathetic [ after all we've all had 'the runs' at some point]

Hi Everyone,
  I am a long term suffer of Chrohn's (14 years), i am now 36 years of age and the last 6 months have been hell and i too have been thinking to myself and talking to my wife weather i can continue to work. I am an Electrical Engineer and love my job but recently i am really struggling to fulfill my duties. Quite often i have to work on site for long ours and this is a problem as i am feeling really tired and i only manage about 5 hours sleep a night due to the constant pain. I continually take pain killers for my pain and have been for 5 months now and lost 2 stone in that period, my work colleagues are great but i know that if i have to take long periods of work then they will have no alternative to release me from my position under ill health. I have just had an MRI Scan of my Pelvic area to see how bad it really is and to look at how much of my bowel needs to be removed. I have also tried to get on the Stem cell trial at Nottingham University to avoid surgery as i feel that surgery should be taken as a last resort.

Trying to stay positive for ma and my family but the last 6 months have been the icing on the cake for me, had to prescribe some anti depressant to cheer myself up. If you have asked me 14 years ago would i have expected to have to go through all this? I would have thought after this length of time i would be better and not continually getting worst. I have tried all the traditional treatment available Infliximab (Remicade) to Methotrexate Injections and still no better. Sorry if i seem that i am moaning but i feel that i have reached my limit after trying to work and balance life for so long.


I wish you all well with this debilitating disease and i hope they make a break through with all the clinical trials they are doing.  

I'd like to know what actually happens when you can no longer work? and who decides  that? Does the state look after you then or are you on your own?

VGS, That's an interesting question, can anyone answer?  

I have insurance at work, that if within 5 years (which is where I'm at), that if they consider you unfit for work, and I guess that would involve some sort of assessment, then the company will pay me 50% of my salary for fives years.  After 5 years of service, then it would be 50% until retirement age, and judging by what the past and present governments are up to, that should see me right until I'm 100!!!!

However, does the state support you, I have no idea, but would be interested to know.

Regards

Julie

VGS where do you live what country do live in Im in the uk and was told on 4th August that i was unable to work i was made redundant on the grounds of ill health i get Employment support allowance which you are on for 13 weeks at the low rate which is £60 ish, and then after youve had a medical and passed it then your amount will go up to £90. hope this helps xxxsuexxxtc

Hi everyone.

Thanks for the replies. Its been 2 weeks into my nursing studies and guess what? Yet another attack
I've also been told that I am not allowed to get my BCS skin test (vaccination) because it's live and the tablets I'm on could make me very ill with the jag. Which isn't good, seeing as it's apparently essential for nurses to have it. I hoping to talk to some people at my university this week about what it means for my future career and how they can help me.

It's so interesting to hear everyones stories. Just goes to show how Crohn's Disease can make you a stronger person (personality wise obviously :L)

Jodie xxx

I'm still at school and have just started my gcse courses so when i feel ill, i miss out on a lot. It's hard to catch up again and this worries me because this is the start of getting a career.

Hi there. Am new to this forum but was diagnosed 13 years ago. At the time I was working full time then got made redundant and with confidence at a real low stayed out of work while my husband supported us. Last year he was diagnosed with cancer and yes along with scaring the hell out of us it was a massive wake up call. I have tried to get back into employment (i know he might not be there for ever) and I am struggling to find work. As for benefits - I never claimed way back when so last year when things went wrong for us we tried to sort this out only to find that I was not eligible because I'd let my national insurance contributions slip (you need at least two recent years of NI to claim) so despite working for 15 years I got nothing because it wasn't recent. This year I have lost count of the number of jobs I have applied for and it seems the world of employment has changed - occupational health is now a very real issue. I've had jobs 'withdrawn' prior to interview and just not been selected. On the one occasion I got an interview they told me they would try not to let my illness affect their decision - I didn't get the job.

To anyone out there considering giving up work I would advise hang on as much as you can - part time - anything. Just don't let them slide you out the door. Once you are out of employment - at least in my case - it's damn hard getting back in to it.

The behaviour I experienced on the one interview I did get was just plain strange. Everyone seems scared of getting it wrong and skirt around you like you're an alien. Seems you are just too much hassle. Found a doc on internet called "Equalities Review 2007" which had some pretty scary statistics - over 30% of employers would exclude people with a long term illness (CIPD).

Sorry to bang on about this but try as I might I am feeling that the deck is stacked against me.