Tag Archives: worklifespirit

Book Review:Confessions of a Professional Hospital Patient

Confessions of a Professional Hospital Patientby Michael A. Weiss. 1stBooks, ISBN 0 75960 473 8, 2001.

Confessions of a Professional Hospital Patient: A Humorous First Person Account of How to Survive a Hospital Stay and Escape with Your Life, Dignity and Sense of Humour is a guide to spending time in hospital of value to first timers and veretans alike.

Aimed primarily at people with an imminent hospital stay and their families/supporters this book should also interest medical staff working in grastro-enterology who want to develop their understanding of the patient perspective.

I was delighted to receive my copy of ‘Confessions’ direct from the author, and when it arrived I was pleased to see that the book was well put together, with a good binding, nice readable typeface and a good size to carry with you into hospital.

The book is divided into chapters beginning with ‘Pre-admission preparation’ and ending with Weiss’ perspectives and opinions on healthcare in the US. Weiss is generous in the amount of material he makes available to others to help them deal with the administration side of the US healthcare system – this was fascinating to a UK based reader like me. Weiss supplies proforma letters, along with sound advice about what to copy and file.

The author has had over 50 hospitalisations so within the text there are plenty of lessons learned and tips which are based around a varierty of his own experiences. I’ve had quite a few hospitalisations and you do soon realise that some of the more perplexing aspects of hospitals aren’t down to your mirunderstanding, it is the system or a lack of communication. Some of the more common areas of confusion are explained carefully and tactfully, such as in the case of catheter removal – unless someone tells you, you don’t realise that you have to show the nurses everything you wee otherwise they force you to have the catheter replaced!

There is a plentiful appendix full of extremely useful outlines of things such as living wills and powers of attorney. I really appreciated the author addressing these issues as they can be easily overlooked.

It was really intersting to see that the hospital day, and general management of wards was virtually the same in the US and the UK. Then disheartening to read that dismissive treatment in accident and emergency also occured, albeit, very rarely.

(WordPress ate this section of the review, I will rewrite it tomorrow!)

In conclusion I think that this is an excellent book for anyone who has just been diagnosed with a chronic disease and expecting to spend some time in hospital. I also heartily recommend it to anyone in the medical profession who wishes to gain a patient perspective. I think it would particularly suit patients in the US who are trying to get to grips with the medical and insurance interface as I am sure that Weiss knows all the tips and tricks by now!

You can buy ‘Confessions’ from Amazon . Happy reading! Disclosure: I was delighted to receive a complimentary copy of ‘Confessions’ from Michael A. Weiss to review for my blog.

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You might be stressed if…

This is the second post in a series about stress. The first post can be found here. The other day I described some physical signs of stress, but sometimes stress manifests itself more noticeably in your behaviour.

The following list describes typical behaviours that are associated with stress. The impact of stress on chronic disease is varied but important to recognise as it can exacerbate your symptoms or lead to further health problems. If you find that you are exhibiting these behaviours you might want to find ways to destress and unwind or talk to your Doctor about other ways of managing your condition.

  1. You need nicotine, alcohol or drugs to unwind or feel relaxed
  2. Your sleep patterns change – you need more sleep, can’t get to sleep or wake up in the night
  3. You feel lethargic and disinclined to do anything
  4. You are short tempered for no particular obvious reason
  5. You tend to argue with people rather than discuss things with them
  6. You often feel angry with yourself, sometimes because of the other behaviours on this list
  7. You often feel angry with other people for no particular reason, or for insignificant reasons
  8. You stop doing things you enjoyed doing before
  9. You withdraw from society, for example staying at home all the time, declining invitations to go out with friends
  10. You become paranoid about the people aorund you
  11. You become weepy for no reason

Launching ‘My Chronic College Life’ – Josh’s story

‘My Chronic Career’ has been hugely successful, showcasing a growing range of illnesses and experiences of people in work. I’ve expanded the questionnaire to include some new questions and now, adapted it for those in school or college.

Your experiences are important. There are other people, newly diagnosed, going through what you did, and feeling alone. These interviews aim to help their friends and their school /college to understand their illness. It helps everyone understand that it isn;t just one person being different or awkward – it is all of us, hidden away, out of sight, but painful, debilitating and embarrassing.

I’m delighted to announce that Josh, from the UK is my first ‘chronic college life’ interviewee and his experiences are below.

If you would like to share too, you may do it anonymously if you wish, just contact me with your email address.

1. Please tell me a bit about your medical ‘history’
Started out, almost one year ago, I started feeling sick when I ate, but I just ignored it. My mum noticed I started losing weight – so she forced me to go to the doctors, where they weighed me weekly for a few months, then decided I had to see a GI. When we arrived he said he was 90% sure I had Crohn’s Disease, but wanted to be sure, so I had to have a colonoscopy in Birmingham where they confirmed the diagnosis.
2. Please give an outline of your school /college ‘history’
When first getting symptoms I just gritted my teeth and bared it for a few months, then a couple of months later I started getting more ill and attending school less and less frequently. I have been having home tutoring for the past couple of months and have even taken 4  exams at home (physics, biology and electronics)!
3. Did you know about your condition before you were diagnosed?
When I first started getting ill me and my mum were googling symptoms to try and work out what it was. We did come accross the wikipedia page for ‘Crohn’s Disease’ but did not read it and did not think that could have been a possibiity as I had none of the main symptoms (diarrhea and nausea).
6. How did you find out further information about your condition when you were diagnosed?
Well originally my doctor said google it! which was not the best idea, but we did so, and found some useful information, but also some bad/scary! information!
7. Finding information is different now with the internet, which sites do you find useful interms of information / support and advice about your condition?
8. What is your top tip for schools/colleges – what could they do to support people with yourcondition?
Ii think the best thing is for schools and colleges to educate fellow pupils about the disease, so they can be more understanding.
9. What is your top tip for students with your condition?
If you aren’t feeling 100%, don’t force yourself to do any work/exams that you may regret. there will always be time to resit later on when you are feeling more up to it.
10. Thinking about friendships and having your condition – what do you find / have you found most difficult to manage / cope with?
I think my friendships have improved as they know what disease I have and how it can affect me, so are more sympathetic and more friendly about it.
11. Thinking about having fun and having your condition – what do you find / have you found most difficult to manage / cope with?
I have tried to have fun and do as much normal stuff as other people.some things, for example going to the local theme park on a school trip obviously wouldn’t have been a good idea, but as long as its not too rough/dangerous and your feeling up-to-it – go for it 🙂
12. Thinking about your life, what do you do differently because of your health condition?
I think the main thing I do differently is think more about transport/how much walking is involved in certain activities, for example checking to see how far I would have to walk to get to a specific destination, or how far away the local toilets are!
13. Do you think you have developed any personal skills or qualities as a result of having an your condition? (I for example have encyclopaedic knowledge of public toilet locations!)
I think I have become more social and better with people, especially after spending 5 weeks in hospital at only 14 years old (and spending my 15th birthday in there!!)
14. What advice would you give people who have just been diagnosed with your condition?
To not freak out about it, thousands of people all accross the world have it, and lead normal day-to-day lives. It would be good to speak to someone with the same condition personally to answer certain questions you may have.
15. What advice would you give to the family and friends of someone who has just been diagnosed with your condition?
The best way to help someone with a condition like Crohn’s is support. as long as you are there to support them through whatever they may go through, they will always feel like there is someone there for them.
PS Josh did fantatstically well in his exams, he got A,A,A,B! Well done Josh and best of luck for the future.
If you would like to share too, you may do it anonymously if you wish, just contact me with your email address.

My chronic career – Teresa’s story

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Teresa from Norfolk in the UK has agreed to be interviewed. Thanks Teresa!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

I have been diagnosed with Crohn’s disease in May 2005. It was thought I had appendicitis , but had an operation and they saw the Crohn’s. I then had another operation two weeks later as the medication wasn’t working. I then got peritonitis and nearly died, and so they gave me an ileostomy for a few months which was reversed in November 2005.
I was then diagnosed with arthritis and fibromyalgia. I had two operations on my elbows. I then had issues with adhesions and have had 3 further operations to try and get them to settle, but they haven’t, and so even now I am being treated.
I am on Methotrexate for the arthritis, having tried MP3 and Mercaptopurine, which didn’t work. I was on steroids for a long time and put on a lot of weight which made me feel terrible and so took antidepressants.
My last operation was November 2010 there were adhesions again, but this time it made it worse rather than better, and now I am being treated and looked at with St.Marks Hospital where I have been referred to as they are more specialist than my local hospital. I am tired all the time, and I suffer with fatigue a lot and am on a lot of opiate pain killers.

And how about your working life? What career path have you taken?

Although I was off for a while, I have been a police officer for nearly 15 years, and am now on a back to work recovery programme and now working full time hours.

Did you know about your condition before you were diagnosed?

Nope, no clue at all.

How did you find out further information about your condition when you were diagnosed?

I looked on the internet as staff at the hospital

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I find the National Association of Crohn’s and colitis to be helpful. I also have a couple of books on the disease, and also look on crohnszone.org for information as well as other friends who have the disease.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

The fatigue is the biggest issue for me, and where the nearest toilet is!

What is your top tip for employers – what could they do to support people with your condition?

They need to be empathetic in relation to your working space, and also where the nearest facilities
are.

What is your top tip for employers with your condition?

You are covered under the DDA and so if there is something that is troubling you then you do have the support of the disability discrimination act.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I am normally in bed early with a hot water bottle and my medication.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I have developed more skills in finding the toilets, how to ask and explain in places when toilets aren’t public, to ask where they are.

What advice would you give people who have just been diagnosed with your condition?

I would suggest that you look at the DDA to see what your entitlements are, and also, find out where the facilities are at your place of work.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

It is not that bad – there are going to be some bad days, and there are going to be some good days, some bad. Don’t wait around for the bad ones and make the most of the good ones.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

Safe stretching after surgery

The following two techniques aim to help you stretch your body safely after your operation.  You have complete control over how far your stretch and how long you hold the stretches. Together the techniques make a nice sequence which you can flow through if you wish.

1. Cat Stretch

Come to a ‘table’ position, kneeling position with your hips over your knees and your shoulders over your wrists – like a table. As you exhale (breathe out), pull in your navel towards your spine, rounding your back and as you inhale lift your tailbone and your head. Repeat.

Continue the movement, aligning the arching of your spine with your breath. take the opportunity to find a speed of movement that suits you. When you are ready you can return to neutral.

Recommended number of repetitions: start with 5 and build up to 20

2. Child Stretch

From the same starting position bring your big toes together and experiment with sitting your hips back towards your heels, resting your forehead on the floor. You might be more comfortable with your knees together or knees apart.

An alternative is to stack your fists one on top of the other and then rest your forehead on them. Try lengthening your back through your tailbone, Hold for a breath or two and come back to table.

Recommended number of repetitions: start with 5 and build up to 20

The sequence

You can put both movements together to form a sequence

  • Come to table – perform one cat stretch
  • Come to table – perform once child stretch
  • Come to table – perform one cat stretch
  • Come to table – perform once child stretch

Getting more ambitious, post surgery abdominal (diaphragmatic) breathing

This breathing technique will seem like madness just after your abdominal surgery. You’ll feel very bruised and deep breathing will be painful. However this technique has a number of benefits that make it worthwhile persevering with. Firstly your physiotherapist will want you to breathe deeply into the bottom part of your lungs to help prevent infection; second it is a very calming breathing technique and third it is a fantastic breathing technique to practice so that you can use it in very day life.

1. Place one hand on your chest and the other on your abdomen. Take a deep breath in and try to make the hand on your abdomen rise higher than the one on the chest (to help ensure that the diaphragm is pulling air into the bases of the lungs).

2. Breath out slowly.

3. Take a deep breath in and try to make the hand on your abdomen rise higher than the one on the chest again, hold your breath in for a count of 2.

4. Slowly exhale through your mouth and gently contract your abdominal muscles as if you were trying to squeeze all the air from your lungs.

5. Repeat steps 3 and 4 for a minimum of five breaths building up to 20 breaths.

Tip: If you are practising this technique in bed after surgery, place a folded towel on your tummy to help your belly feel ‘secure’.

Placing your hands on your chest and abdomen is to help you train your breathing and get to know the technique. Once you feel comfortable with your ability to breathe into the abdomen, you don;t need to use your hands.

The more your practice this technique, the more natural it will become to you.

Guidelines for post-op physical recovery exercises

At the moment I am posting a series of articles aimed at post-op recovery. I thought it would be a good idea to supply you with some common sense guidelines and checks for you to go through before embarking on any of the techniques described.

Make sure:

  • There is no reason why you should not practice the techniques – check with your nurse or doctor
  • Your bed-rails are up
  • Your drips and tubes are tidy, and that they won’t fall out, pulled or tangled
  • Your alarm button is somewhere safe and easily accessible – make sure it won’t get knocked on the floor
  • Your clothes and bed covers will adequately cover you

 

2 gentle moves to gently discover your abdominal muscles again

Post surgery, you might be thinking that you will never be able to use your abdominal muscles again. Turning over or getting out of bed might seem impossible now, but these two practices will help you to find you abdominal muscles after surgery and build your confidence in them. Try to practice them every day.

1. Pelvic tilt

In addition to helping you to engage with your abdominal muscles, this practice has the added benefit of stretching your lower back as well as activating your abdominal muscles.

a) Start by lying on your back and if possible come to a position where your knees are bent and your feet are on the floor or the bed. Put your hands on your hips and begin by pressing the back of your waist into the bed. When you first start doing this, this might be as much as you can do, and that is absolutely fine.

b) To move on, as you press the back of your waist into the bed, try to draw your navel in towards your spine.

c) For the third stage try to tolt your pelvis towards you as your press the back of your waist into the bed.

d) Finally you press down through your feet in order to lift your hips slightly off the bed.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

2. Uddiyana Bandha

In Yoga ‘Bandha’ means ‘lock’ and this Uddiyana bandha is also known as the abdominal lock. It is a brace position for the abdominal muscles which has three subtle stages and as such is an excellent practice to use to get to know your abdominals again.

a) As before, start by lying on your back with your knees bent and feet on the floor or the bed. Put one hand below your navel (belly button) and one hand above. The emphasis here is on trying to do something rather than doing it – so it doesn’t matter if you have dressing in the way.

b) Focus on your lower hand. Try to draw in your abdomen, only pulling in your lower hand. The reality is that nothing will move, or the whole abdomen will move slightly. Remember, we are focussing on trying to do the right movement rather than actually doing it!

c) Focus on your upper hand. Try to draw in your abdomen, only pulling in your upper hand. The reality is that nothing will move, or the whole abdomen will move slightly. Remember, we are focussing on trying to do the right movement rather than actually doing it!

d) Now bring together both sensations – of drawing in both the upper and lower abdominals.

Hold for a moment.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions. You can also increase the length on of the ‘lock’ up to a maximum of 5 breaths but don’t try to hold for more than five breaths until you have fully recovered.

My Chronic Career Jason and Crohn’s Disease

‘My Chronic Career’ is a sometimes weekly feature at Worklifespirit which presents interviews with people who have chronic health problems. The interviews focus on not just an individual’s medical experience, but also the impact on their life and career.

Jason Peters  from Shrewsbury, Shropshire has kindly agreed to be interviewed. Thanks Jason!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Coeliac history?

I was diagnosed in 1997. I had been diagnosed in 1996 with ankylosing spondilitis, after many years of physio, back specialists had prodded and poked me. The drugs given to me for my back reacted very badly with my as yet undiagnosed Crohn’s. I was very ill for 12 months, while they tried to work
out why I was so ill. It was only when a fistula appeared that I was finally diagnosed. I have been very lucky, as this has been the only operation I have required to date.

And how about your working life? What career path have you taken?

I am an electronic engineer by trade, although in my later years I have moved into a more supervisory role. I began my working career at Shrewsbury technology, a fantastic place to learn and have some life long friends from there.
I continued to play Rugby for a local team before and after I was diagnosed.
From Shrewsbury Technology I moved through a number of jobs, working at smaller companies. Other than when I had my operation, I tend to struggle through my flare ups, and only have had a handful of days off. I enjoy my work, and I’m not one to sit there and feel sorry for my self, so I push myself forward.

Did you know about your condition before you were diagnosed?

Yes, My cousin had it very acutely so was aware of the impact it could cause.

How did you find out further information about your condition when you were diagnosed?

My cousin who has the disease is also a nurse and a font of knowledge on the disease, I was very lucky, she gave me all the facts and knowledge I have needed really – she is a star!

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

Again, I don’t tend to bother with the internet. You can read such conflicting information. I just concentrate on what is right for me.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Situations involving food – e.g. Professional development courses with lunch included – usually sandwich based which is not suitable for anyone following a gluten free diet. I always take my own lunch along to this type of event nowadays and do my best not to feel awkward about tucking into my own homemade snack while others linger around the buffet table!The most difficult thing I find is when you are in a flare up, I get a lot of joint swelling and am constantly tired. When I have a flare up I tend to push myself hard to keep going. With my Ankylosing Spodylitis Staying in bed is not helpful, and as both diseases trigger each other, it’s a case of just doing your best.
I have to say all my employers have been very supportive, I try to be as honest and open about my illness wish helps them understand what I need to do to help them get the best from me.

What is your top tip for employers – what could they do to support people with your condition?

Listen to what your employee is saying to you, Most people I have met with any kind of illness just want to be treated like everyone else. They work hard when they are well, and just need the reassurance from there employer that intermittent days off will be seen as isolated incidents and a long term view is taken.

What is your top tip for employees with your condition?

As an employee, I really just try to do my best, Even if I’m only feeling 50% I tend to go in, I’m of the opinion that I have this for disease for life, and it’s a battle, so I don’t let it get the better of me with out a fight.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

When I feel the beginnings of a flare up I go on to a white diet, it means you eat things with low fibre, easy to digest e.g. white bread, not brown, white rice, chicken etc. I also cut out caffeine and citrus fruit juices. It all helps to let your intestine have a rest, and seems to work for me. My cousin told me about it, and since then it has really settled my condition down and reduces the length of a
flare up. I also think it lets me feel I am doing something!

Do you think you have developed any personal skills or qualities as a result of having your condition? 

The disease has made me a more open and honest person. I don’t worry or get embarrassed about talking about my disease.

What advice would you give people who have just been diagnosed with your condition?

I would say you need to get as much information as possible, not all will work, but it takes time to find out what works for you. Enjoy the good times, and manage the flare ups,

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Just understand that when the are in a flare up, it is very tiring and painful accept that they just can’t “keep going” sometimes.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My Chronic Career – Warren’s Ulcerative Colitis

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Warren Berman from Birmingham (UK) has very kindly agreed to be interviewed. Thanks Warren! Warren has Ulcerative Colitis and his medical journey is not typical – he’s had a lot to deal with in a short space of time.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

Prior to being becoming ill with Ulcerative colitis in March 2010 I hadn’t had any real medical problems since I used to suffer with as Asthma as a child and had only missed 1 day of work through sickness in the previous 5 years. Looking back prior to ever hearing a GP mention Ulcerative Colitis I had been suffering with symptoms for about 5 months. However I mostly ignored them and when I did visit the doctor I was advised it was probably just Gastroenteritis. As I always naturally seemed to get better I ignored when I had a series of a few days where I was ill. Eventually the series of a few days didn’t stop and my symptoms became worse. By the middle of March I went to my GP again and was advised it was probably Ulcerative Colitis or Crohns and was booked for a flexible sigmoidosopy in 10 weeks. My condition became worse over the next week and went to the doctors and but saw a different GP and was advised he couldn’t do anything and to wait for the flexible sigmoidosopy. My health deteriorated further over the next week, upon seeing my GP again was referred straight to hospital in Birmingham as an emergency admittance. This was my first also my
first sick day which ended up lasting 5 months. I was treated in hospital and after 8 days was told I was doing well and could home on medication and come back in 4 days to see how I was doing. I went back to stay with my family in Leicester, but on the hour drive to theirs my condition deteriorated again and had a large scale flare up and back in Hospital in Leicester the following
morning. I was put onto multiple different medications including immunosuppressants, but they were only ever effective for a few a days and I would flare up again. After a month of trying to treat me medically in hospital I was advised surgery would be the only option and had a total colectomy leading me to have an Ileostomy Bag with the aim to have a reversal over the next 6 months to a year. However from the outset after surgery I suffered from proctitus, ulcerative colitis flare up from the rectal stump that was left. These flare ups would occur like clockwork on a weekly basis.

However after 5 months The flare ups increased in frequency and painfulness until I was under a permanent flare up. My GP admitted me to hospital, I was there overnight and prescribed some prednisolone and discharged. This did not work and over the next 2 weeks my GP increased my medications until I was referred back to hospital again. After receiving stronger and different medication over the next 2 weeks I was advised the rectal stump left after the first operation was totally infected and would have to come out. After having so many problems in such a short period and with medication never working I had an operation to remove my rectum and lead me to now have a permanent Ileostomy without the possibility of a reversal. Knowing I would have to live with the bag for life became a real issue immediately after the operation as it I had only just gotten
around to the idea of having this ‘foreign’ bag attached to me but now I would have to have it for the rest of my life. I had several post operative complications after the second surgery but now am fully healed.

And how about your working life? What career path have you taken?

I have achieved a BSc in Psychology with Sociology and a Masters Degree in Occupational Psychology. This helped lead me to my current career in the NHS where I work in informatics. I had recently been promoted within Birmingham Children’s Hospital when I first became ill and was admitted to hospital 3 months into the new job. My employers were incredibly supportive and whilst
in hospital was in contact by the director from another department I had previously completed a project for. They advised a position would be opening up soon and they encouraged me to apply for it if I was fit. I ended up applying for the job and was successful in becoming the Clinical Information Manager for Theatres Anaesthetics and Acute Pain (long job title). I love my job and have been in the role since October 2010. Unfortunately again 3 months into my new job I became and lead to the second operation and another 5 months off. I have now been back at work for 6 weeks with my permanent Ileostomy but love being back. I have recently been made the Directorate Lead For IT, it is clear that the issues I have had in the past have not impacted on my development or the worth I have at work.

Did you know about your condition before you were diagnosed?

I didn’t know anything about Ulcerative Colitis, Crohns or any form of Inflamatory Bowel Disorders.

How did you find out further information about your condition when you were diagnosed?

Initially I didn’t look up anything as my GP didn’t explain anything about the condition and I (stupidly) assumed it would be something that would get better over time on its own or need a few pills. From the people and medical professionals I have spoken to about Ulcerative Colitis it is quite rare to have such a short period between initial diagnosis and needing an operation (just over 7 weeks in my case). But when I was in hospital I mostly used my phone to google info using Wikipedia to find info but also looked at forums. But being in hospital after being seemingly fine made it quite difficult for me to search for information as I didn’t want to know about the negative impact it would
have on my life.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

After the first operation I mainly just used Google still to look for information. After the first operation I was misinformed that any flare ups were now just part of life and was never referred to a gastro consultant. Whenever I brought up the flare ups with my surgeon, stoma nurse or GP I was just told you could still have flare ups even after a colectomy. Because of this just thought it was something I would need to live with so didn’t really do much further research.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Initially I had some very big problems finding an Ileostomy Bag that didn’t leak which made me incredibly paranoid about going back to work after the first op. I remember coming back from the job interview or my current position and by the time home my bag had leaked. I think part of resolving that was being proactive with the Stoma nurses and finding a bag that would work and could have confidence. All in all I went through 4 different bags and several extra products to help find a bag that would last over 24 hours. But losing and putting on weight changes the bodys shape and can again cause problems with bag leakage. So I keep a spare shirt and Ileostomy bag at work just in case.

One of the bigger issues I face at the moment is as a result of the operations a recent blood test had identified low iron levels and I’ve been diagnosed as anaemic. Because of this I can become very light headed and fatigued quite quickly. Missing meals makes the light headedness and tiredness worse. Although not the most lovely of subjects, it can be incredibly painful when the Ileostomy bag fills up whilst wearing a suit. As well, although when the bag is empty, it would be difficult to tell that anything is there, however when it fills it can make an obvious lump, that I do not want to have to explain or have other people be aware of. Because of this I am to be very proactive in managing my
diary to ensure that I am able to have lunch with sufficient time to go toilet and empty the bag or move about to reduce the pressure on the bag and make life more comfortable.

What is your top tip for employers – what could they do to support people with your condition?

I’ve been lucky in that my employers have been incredibly supportive with me and allowed me all the time and space needed to recover after having 2 operations in fairly quick succession. I think for me the most important thing is just being supportive. It can be an incredibly embarrassing condition to talk about with a lot of the symptoms of a flare up being not the nicest things to discuss.
Even after the operations it’s difficult discuss with someone who’s not gone through it. I think that whenever an presented with any type of chronic medical disorder or disability, employers should educate themselves on its impact and be supportive with any realistic changes.

What is your top tip for employees with your condition?

I think practical measures if you have a bag are avoiding meetings straight after lunch if you can help it, or at least giving yourself time for a to go to the toilet etc.

But I think on a more general level that because Inflammatory Bowel Disease’s in general is not an easy subject to broach, it’s quite easy to ignore telling employers what you’re actually going through. This type of disorder will be covered under the disability and discrimination act and should be taken into account if any sick days are caused by it. Not only that but reasonable adjustments can be made. I used to be a manager in a call centre where ‘personal’ times would be logged. The number of trips to the bathroom I would take when I had Ulcerative Colitis would have been seen as excessive and I would have been performance managed because of it. Unless employers know about
your condition they can’t help you.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

After the 2 operations to remover my colon and rectum I am now Ulcerative Colitis free, so flare ups is now no longer an issue. When I was having flare my coping mechanism was to sit on the toilet and wait for the pain to end, then lay down for a few hours. Others can probably give better coping mechanisms.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I now always know check there is toilet roll in the toilets before emptying the bag!!!

What advice would you give people who have just been diagnosed with your condition?

It’s not the end of the world. I only knowingly lived with Ulcerative Colitis for approx 7 weeks before needing an operation. Even though the thought of having an Ileostomy was scary there is so much support and information available it can be overwhelming. I would avoid reading clinical information straight away as it can be quite blunt and scary. Try and speak to real people who have gone through it as they can give a more realistic view how things actually are..

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Just because you can’t see the pain or discomfort doesn’t mean it isn’t there. It’s not something that you can just grin and bear and carry on with life. And just because you’ve had food poisoning doesn’t mean you can identify with a flare up or comprehend what life’s like living with a bag attached to for the rest of your life. Constantly saying ‘chin up’ is not always the most helpful advise, acknowledge that yes the situation is crap, but you’re not going anywhere. People always need a hug.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!