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!

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