When I went for the interview a few months ago, the interviewer asked about my health. I know they are not supposed, but I wanted to be honest and I was going to be honest and mention the fact I have Crohn’s Disease anyway. I thought it would help me in the future if I ever need time off ill or to visit the clinic etc. What I wasn’t expecting was him to say “Oh yeah, I know about Crohn’s, my mum suffers with it”. This could have played in 2 ways; either he would know how much time I may need off and how many problems this could cause or he would think that Crohn’s isn’t a big deal and knows I will do my best to be “normal”. He offered me the job, so I guess it was the 2nd.
I have now been working there for a few weeks. Already I have had to book time off for an MRI scan and a consultation. Both of which my boss didn’t mind. I think as long as I pull my weight there is no problem. He understands I will need to do these things. Hopefully I won’t be needing a whole week off anytime soon.
On my first day the panic set in. The panic wasn’t particularly from starting a new job, or meeting new people or the fact that this job is a lot more challenging than my old job, it was from the toilets. The toilet the office staff use is directly off the main office. So everyone can see how long you spend in there. If you’re having a bad day they will be able to hear you and worst of all smell you. Not only is the toilet practically in the office, it is a shared toilet, so men and women use the same loo.
Don’t get me wrong, it’s a lovely loo. Well sized and clean with soft toilet tissue. I just don’t fancy everyone knowing all of my business. There is only my boss who knows the truth and I am not comfortable with the other guys yet to be able to talk to them about my dodgy bowels.
The first week was made a million times worse due to the fact it was my first week without steroids. I was on a real bad downer of a withdrawal. I was extremely depressed and thinking all kinds of awful things. I sympathise with anyone who experiences these lows when coming off steroids or suffer these problems as part of a mental health issue. I’m relatively lucky to only suffer the downer for a week or so after stopping the medication. A rational mind helps spot that you are not feeling normal. I was getting home with a cracking headache and an annoying twitch that developed. I think all the stresses of a new job with new people really brought me down harder than usual; change is never easy.
During week 2 a porta-cabin was delivered for the buying team to use as an office; so that left 4 of us in the office, all of which were men. This put me a bit more at ease as I didn’t have to worry as much about everyone seeing me popping to the loo all the time.
As the weeks progressed, it got much easier and I have begun to cycle there. It’s so nice to cycle to work, helping wake you up in the morning and getting the blood pumping as well as getting a good amount of exercise.
For some reason I am still having dramatic ups and downs in my mood. We are coming up to week 5 at work and my head seems to be falling back into a confused state. It feels like I have been taking another dose of steroids; my poor head is all over the place. It is full of jumbled up thoughts. I could do with wringing it out like a sponge – removing all the rubbish and starting again. I don’t have this luxury so instead I am writing my thoughts here, to share with you. Maybe you’ll have tips on how to stay positive and upbeat. Do any of you suffer with concentration problems? I know fatigue is a common symptom but what about confusion? I feel muddled and forget things so often now. (could be my ever growing age!)
Before I go I just want to say I think the Mercaptopurine is working. My Crohn’s has stabilised. I still get strong urges for the loo and tummy cramps, but it is less severe than earlier on this year. My blood tests and MRI show lower Crohn’s activity but have highlighted a Vitamin D deficiency. I have been told to get out more in the sun, but being winter that’s a slight problem. So I am taking some prescribed tablets to help boost the Vit D. Hopefully this will help reduce my joint pains. I feel like I am slowly falling apart; my hip hurts, knees grind, fingers click and wrists hurt most of the day. The consultant says this is pretty common with Crohn’s and says the Vit D should help conquer this.
The moral of all this, I guess, is work is JUST work. Its not worth stressing yourself over. Do not let it rule your life. Stay calm and relaxed as much as possible. Enjoy life because at times it is bloody difficult on us!
Stay well friends
Ben x
December 9th, 2010 14:56
Hello Ben,
I read your Crohn’s blog often and I thought I’d actually respond today.
I’ve been diagnosed with Crohn’s for four years or so and have just had my third infusion of Infliximab after another hospital stay.
I was on 40mg Pred and completely understand how you feel. The ups and downs of Pred often out weigh the good it does. It no longer works for me as well as it once did, hence the infliximab. But I’m not sure they will give me that again unless I’m flaring.
Anyway, I just wanted to say good luck with the new job and good luck with the toilet. My experience of working in a male dominated environment is that very soon, you will all be talking about the toilet anyway!
Kind regards,
Lucie
December 9th, 2010 18:45
Hi Lucie
Its really nice to hear from people who read my blog.
How is the Infliximab going? Hopefully not as dramatic as mine did. It is a wonderful drug when its working.
If I remember rightly, I was given Pred whilst I was on Inflix so don’t think you’re off the hook yet! he he
Im beginning to become friendly with the office staff, so hopefully soon we can talk about all the toilet issues. I think they noticed me running back and forh today. I have had a bit of troubled tummy.
Keep Well
Ben
December 13th, 2010 14:43
Hi Ben,
Thank you for your reply.
I’m sure by now you are even more settled at work. I’m quite fortunate that there is another Crohnie at work so we have the disabled toilet sorted out with soft paper, wet wipes and a couple of books (all hidden in the service hatch) – good times!
The infliximab has been pretty amazing to be honest. It was the usual story of losing weight/blood rapidly with Pred and Budesonide not working and then I ended up in hospital in September where I had my first infusion. I’ve put on a stone since then which is good as I was looking scrawny. You are right, I have been on Pred and Infliximab at the same time so I’m not off the hook at all!! I think what caused me real issues was I started to fistulate which is never nice! I have noticved that my hair is thinning…
I’m not sure that I will be kept on Infliximab as a manitenance option but I have an MRI on Wednesday to see what’s happening. A recent colonoscopy was very good so you never know.
In the meantime, I’m on Aza, Asacol and Ciproflaxocin….
Fingers crossed for you and I hope your stomach has settled down over the weekend.
Keep smiling,
Lucie
February 21st, 2011 21:42
Hi Ben
I’m not a chronie but I do have colitis so a little similar. Anyway I just wanted to say how inspirational your post is. I’ve been more or less ok health wise for about a year but I really worry about applying for jobs and exactly how honest to be about the colitis. I sometimes think it rules me out immediately if there’s another candidate who has also met the criteria but has no health problems. It’s really great to hear how relaxed your employer is, hats off to him!
Hope your still as well as can be
Karen
February 21st, 2011 22:10
Hello Karen
Its really nice to hear from you.
Changing jobs was a massive concern. It took me over a year to pluck up the courage to move on and attemot interviews. I was diagnosed with Crohn’s whilst working at my previous office, so they knew all about it and it was kind of too late for them to ditch me. I was still lucky enough to know I had a job to go back to if it all went wrong at the new place. The last thing I wanted was extra stress.
Im not sure I would have been so honest if I was desperate for a job. The new employer is enttled to review your previous sick days but cant ask about Chronic illness. Most of the time we are able to work to our full potential. There are just the occasional weeks when we are “poorly” (or worse than normal) but most people are a bit poorly throughout the year.
To be honest, I think most employers would be fine with our illnesses as long as we are truthful and work as hard as the others around us (or maybe a little better!).
If you do go for a new job anytime, I would love to hear how it goes. Maybe I was lucky.
Take care
Ben