Jobs, Crohns and confusion

by Soph

I have been recently diagnosed with CD and am in constant pain I have been taking the medicune but it doesnt seem to be workinf. Also I have just started a new job and you have to do a trial before they give you a permenant contract and I have had to havr time of work with rhis go against me? Please help me thankyou. Also what will now happen ti me im scared please help any help with be gratefully recieved thanks.

Comments for Jobs, Crohns and confusion

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jobs, crohns and confusion NEW
by: Annette Young

Hello there,

Thank you for writing in and sharing your story. It is hard enough to have simply been diagnosed with Crohn's disease and having to cope with the pain and discomfort without having to also worry about job security.

It must be quite a frightening time for you especially since you have just started a new job. I worked in human resources for many years and I can categorically confirm that it is far better that you approach your employers to explain the situation to them so that they know you are not just taking time off through lack of interest.

The company I worked for, had several people with Crohn's disease and although they had been within the company for much longer than you for example, the company was actually very supportive, understanding that they needed time off.

As such, I don't feel that you should hide it from them and in fact the stress of hiding it and worrying about it is likely to make your Crohn's disease much worse. I am a strong believer that facing up to things is half the battle. When you put off certain situations, it starts to fester and well up and when you have a condition like Crohn's, you are merely aggravating it.

If it were me in a new job, I would not hesitate to tell my employers and to explain that I'm trying not to take time off of work. I would also provide them with some leaflets as to what Crohn's is in case they have not encountered the disease before. Although no one ever knows how some employers will react I certainly feel that this is a better option than trying to conceal something that is likely to be ongoing.

As regards medication, it can be trial and error unfortunately but do not hesitate to go back to the doctors and seek their advice. There will be something that will help you. There is much that you can do to help yourself of course:

• Stress management techniques
• Relaxation
• Plenty of sleep
• Well-balanced diet
• Eliminate smoking, alcohol and reduce dairy

Try to remain positive and to learn about the condition. I will keep my fingers crossed for you.
Best wishes,
Annette
Jobs, Crohns and confusion NEW
by: Tanya

Hi again Soph

Yep, would love to chat anytime.
I feel a little scared sometimes too but I guess like they say, knowledge is power.
I'm reading books and internet info but I do find some of the info a bit contradictory so always check with my Dr and specialists.
Some of the best info I've had is from this and similar sites as you're speaking with people who are actually living with CD as well.

My email address is tancas2@hotmail.com and would love to hear from you. Can give you my phone no. from there too if you like.


Cheers

Tanya :-)

Age: 32 years old.
Bowel Rupture and Emergency Bowel Resection and Ileostomy 4 December 2011.
Diagnosed with Crohn's 8 December 2011.
Unsuccessfully seeking referral to Gastroenterologist for symptoms since approx 2007. (Was diagnosed with IBS)
No known family history of CD.
Jobs crohns and confusion NEW
by: Soph

thankyou and im on pentasa and steroids and all thesr different thing and.im a care assistant and.it would be great 2 have a chtmat with u sometime x thanks again xx
reply to Soph and Lydia NEW
by: Tanya79

Hi Soph

I really feel for you hun. I am newly diagnosed too. I have been in a lot of pain for over 4 years now but not diagnosed. (No Dr would give me a referral to a Gastroenterologist!)

I was finally dianosed with CD 2 weeks ago, after being rushed via Ambulance to hospital in extreme agony (fifth ambo trip in life,all this year).

Unfortuately things had been left late & I had to be given an urgent blood transfusion as my organs were shutting down and then rushed into midnight emergency surgery for a ruptured bowel & ileostomy.

I am still in a lot of post - surgery pain (today, Sat 24 is day 21 post surgery) and am having to constantly take pain killers just to survive, let alone actually do anythng.

Anyway, sorry, back to you and the simlar boat I was in. I have been finding it really had to hold down a job in the last few years because of sick leave taken - but remember I was not diagnosed so not receiving any medical treatment for CD and had no real reason to give the employer. I have generally chosen to leave the jobs myself as I knew I was letting the team down and felt like I had no reason to be - after 4 years no medical acknowledgemnt I was starting to worry it was all in my head or that I had just become lazy, unmotivated and depressed following a car accident. And because I live in tiny little Adelaide I was worried about getting a bad name for being unreliable.

But you are in a position where you do know now why you're unwell and hopefully this will work for you.

As someone who has employed staff in the past, I would agree with Lydia in some kind of appropriate disclosure of your condition, but of course checking the correct channels to go through for this.

I really hope it all works out for you - not a good time to be out of work, my fiance and I are really struggling financially and the last thing we need is more stress. But we are selling of assets and other bits and pieces and will be good to start afresh in a new job in the new year.

What do you do for work may I ask? It wouldn't be unsuitable would it? Also may I ask what Crohns and/or pain medication you are taking?

I'm on Amazun (Azathioprine - I think this is what most people are on? So mch to learn!) and am now down to 20mg a day of Prednisolone steroids.
For the post surgery pain and also because of my bad back/neck from two car accidents (one as adult, one as child) and a previous workplace RSI type injury I use Norspan patches and Endone for breakthrough pain, which is pretty much a constant thing.

We'll get there luv, all trial and error I suppose. And we're lucky to have experts like Lydia and all the other lovely people I've seen contributing to this site.

Here anytime you want a chat newbie to newbie and I'm sure the others will be happy to share their expertise with us and we'll be on top of it all before we know it!

And thanks Lydia, there was some very useful info in your post for me too!

Cheers

Tanya :-)
Jobs, Crohns and confusion NEW
by: Lydia D.


I suggest that you speak to your company's doctor, welfare officer, union leader. Because you have already needed to take time off work, I think that you may need to be upfront with your employers. However, take external or confidential advice on this strategy first. If you can get a few people on your side, it might help you to retain your job. As I understand it, a company doctor is not allowed to discuss your disease with your employers, but may indicate whether or not you will be able to work on a long-term basis.

You might also find that your local Crohn's association may be able to give you some valuable advice.

This disease is very difficult to treat if the patient is refractory to medication. However, you have not been through the whole repertoire of treatments yet. Get your hands on the relevant national clinical guidelines and discuss your concerns, symptoms and treatment with your doctors. For example, for America: http://www.thecdwg.org/guidelines/guidelines.cfm

I suggest that you keep a patient diary. This will make it easier to communicate with the doctors. You don't have to write an epic, just bullet points and key words. I suggest that you make use of the following:

Crohn's daily activity index
http://www.ibdjohn.com/cdai/

The Bristol Stool Scale http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The Comparative Pain Scale: http://www.tipna.org/info/documents/ComparativePainScale.htm

Crohn's Disease
http://www.mayoclinic.com/health/crohns-disease/DS00104

Doctors don't have much time and summaries, tables, graphs, charts of your progress will help them to understand your needs a lot faster. There are loads of examples of IBD patient diaries in the internet.

For myself, I have put together a document (a bit like a CV) that records my own and emergency contact details, health insurance details, blood type, major diagnoses, current major symptoms, allergies, intolerances, family medical details: maternal side, paternal side, current medication, etc. The last part of the document tabulates chronologically treatment received, any operations, etc., using the following column headers: Date, In-patient or outpatient, Symptoms/Diagnosis/Treatment.

Ensure that you collect and file all copies of your medical notes to manage your disease and the doctors.

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