Category Archives: Crohn’s Disease

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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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!

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!

Recipe #2 Lush Hypoallergenic Mega Easy Banana Ice Cream Recipe

Well the title says it all really. This is a super lush, hypoallergenic mega easy banana ice cream recipe. Unless you are allergic to bananas or frozen things, in which case – don’t eat this. 

 

You will need:

  • A bunch of bananas
  • A freezer
  • A freezer proof container or food bag
  • A sharp knife
  • A container
  • A food processor

Peel and slice bananas into 2 cm chunks. Put sliced bananas loosely into a freezerproof container and freeze. Don’t pack the bananas too tightly as the aim is that you can seperate out the slices once frozen.

Once frozen (takes about 24 hours) set up your food processor so you have it on the blades / liquidising setting. Fill the bowl up with the seperated chunks of frozen banana. If you more than half fill the bowl, divide the chunks into two batches.

Ok, steel your nerves, and switch the food processor on.

It will start by just chopping up the banana in a ‘this will never work’ way, but then miraculously, you will start to see a creamy ice cream form. Once all the banana chunk have turned into ice cream, turn it out into a feezer proof bowl and re-freeze. By all means sneak a little tester bowl at this stage!

Eat and enjoy!

This was absolutely gorgeous and we had a discussion about how we could pimp it up with toppings, here are some ideas:

  • maple syrup
  • fresh cherries
  • nuts (not for crohnies)
  • Honey
  • Rum!

I tried using a jug style liquidiser to puree the banana and it just didn’t work – the first cm was pulverised but nothing else would sink down onto the blades.  If you only have a jug style liquidiser, then puree the bananas first before freezing. If you don’t have a liquidiser, then use a potato masher, and if you don’t have one of those, mash the bananas with a fork – you won’t get the same creamy consistency though.

$6.9bn will be spent on IBDs in 2015

A new report by visiongain, a London-based business information company, predicts that world drug revenues for treating inflammatory bowel diseases will reach $6.9bn in 2015, according to Inflammatory Bowel Diseases: World Drug Market 2011-2021, published in July 2011.

Diya Lahiri, pharmaceutical industry analyst, is quoted as saying: “The world IBD treatments market will benefit from the entry of new technologies, products and companies this decade. There are prominent needs in the IBD treatment market, the most important being the development of drugs that are disease modifying rather than only symptom managing. R&D efforts will help develop novel treatments that will not only benefit patients but also help researchers better understand IBD.”

Visiongain forecasts that the IBD drug market will continue to expand steadily to 2021. The future of the market appears promising, with

  • increasing demand for IBD treatments
  • a strong R&D pipeline for treating inflammatory bowel diseases
  • the prospect of new, more-effective drugs, including biologics and intestinal anti-inflammatory agents (IAIs)

It’s all good news that our diseases are being invested in – and new effective treatments can’t come too soon for some of us.

For more information about this report please go here.

 

My chronic career – Crohn’s and the professional hospital patient

‘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.

Michael A. Weiss from the Northern New Jersey/New York City Area (USA) has very kindly agreed to be interviewed. Thanks Michael!

Michael’s website is www.hospitalpatient.com  and he has written a book on his experiences called Confessions of a Professional Hospital Patient which you can buy through Amazon in the US and the UK.

(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?

After athletic teenage years filled with a few bizarre Medical ‘Incidents’, I played and partied my way through college until shortly after graduation when the auto-immune aspects of what I was to learn was Crohn’s Disease started to become more pronounced.

More specifically, I had Four (4) Wisdom Teeth extracted at the same time, a common practice back then (i.e., in 1984), but after initially recovering each side of my face swelled up for MONTHS afterwards.  I looked like a confused Chipmunk and my Dentist and Doctors were absolutely perplexed. I tried every antibiotic imaginable and they even considered placing me in a hyperbaric chamber to help me heal.

Then I started complaining of frequent onsets debilitating joint pain and overpowering feelings of lethargy.  I also would suffer extreme allergies to the point where I couldn’t get out of bed while others simply struggled with the typical hay fever symptoms.  My Doctors started to question my veracity and as a tough, confident and passionate young man, that seriously bothered me because the last thing I wanted to do was lie in bed or not ‘compete’.

It all came to a head, however, a few weeks later when I was at the 3rd day of some ‘just killing time’ job in New York City and the staff decided to celebrate a co-worker’s birthday with flavoured popcorn which was quite popular back then.  Little did I know that Popcorn is to Crohn’s Disease as Jennifer Lopez is to Marriage and approximately an hour later the crampy pain was so intense that I locked myself in the bathroom of this corporate office whose workers I barely knew.  I was hoping it would pass but instead I soon passed out!!!!

Somehow these very nice people called an ambulance and I wound up in a Hospital for 2 weeks where I was diagnosed with a classic case of Crohn’s Disease.

While this ordeal sounds tough, the one GREAT thing about it was when the Doctor handed me some pamphlets from the Crohn’s & Colitis Foundation (the CCFA) which described the symptoms of Crohn’s Disease and it was like reading a diary of the past 18 months of my life.  It was incredibly validating and I think I was on the verge of even losing the support of friends and family at that point in time. When they read the pamphlet their skepticism turned into tremendous respect for me and how I had dealt with this very difficult disease over the past 18 months.

Unfortunately, my case of Crohn’s Disease, which is a broad spectrum chronic illness, was very aggressive and required many hospitalisations (200+ and counting) and surgeries (approximately 20) over the next 20 years or so.   After that it has been the auto-immune aspects which have affected other parts of my body and most recently I had to pay the piper for some very effective Anti-TNF Agent Drugs which had kept my Crohn’s Disease in remission but came with the risk of upper respiratory problems.  Well, those problems turned into recurrent pneumonia and  only a few months ago they necessitated lung surgery as I have some inflammatory lung disorder known by the acronym B.O.O.P. and it is quite serious.  In fact, the only successful cure is ONE (1) YEAR of a high daily dose of steroids (i.e. prednisone) so the potential cure is proving to be as problematic as the underlying illness.

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

After being diagnosed with Crohn’s Disease, I was hell-bent proving to everyone, including myself,  that you can still have balance in your life despite having to live with a chronic illness.  As a result, I obtained my MBA degree and then my Law Degree and practiced Entertainment Law for several years.  I also maintained an active social life as no matter how sick I got, I never looked the part.  Having said that, however, I don’t think I respected the illness as much as I should have because I probably went too far in proving to myself that I was not as chronically ill as I really was.

This became more evident to me in my late 30s (I’m 48 presently) as my mind kept making promises that my body couldn’t keep.  But I’m one of those people who never regrets what he didn’t do, i.e. I will only regret the things I did do.

I picked very social industries to work in (i.e., the Film and Entertainment Industries) and had a blast transforming from attorney to business affairs to film producer.  The film producer part ultimately made me face having to relocate from the New York/New Jersey area all the way out to Los Angeles, California.  During that contemplative process, I realised that my illness was either going to be an albatross that would keep me on the East Coast or it would be the ‘Fear I Faced’ in order to move forward with my life’s dreams and aspirations.  I didn’t realize how attached to my doctors I had become and that was the big obstacle.  However, the very fact that it was an obstacle proved to me that I had to do it otherwise I could never look myself in the mirror.

So, I ‘interviewed’ several doctors each time I was out in LA on business and eventually I connected with a few and it was only after I had fully committed like that when a job offer appeared seemingly out of nowhere and shortly thereafter I was a bona fide resident of Santa Monica, CA.  Life works in strange ways but I learned that someone is listening!

I must also say that in the middle of my career as an entertainment industry executive, I started to write about my interactions with the Healthcare System as my friends found my Hospital and Doctor stories to be strangely hysterical.  The result was my first book entitled, “Confessions of a Professional Hospital Patient.”

I have been told that the book Is not only the most accurate account of what it is like to be a patient both in and out of the Hospital but its candor and laugh-out-loud humor makes it an uplifting reading experience – and who would have thought that about a book which  attempts to teach people how to live, love and laugh with Chronic Illness!

While I wrote the book in 2001 when there was a national debate about a possible “Patient’s Rights Bill” and that landed me on many mainstream media TV/Radio Shows including NBC’s coveted “Today Show,” the tragic events of September 11, 2001, understandably changed the focus of the global dialogue.  I was literally poised to be on all of those TV Shows where people shared their bizarre experiences for the benefit of others and I’m sure that would have sold a great deal of books.  However, I learned a great deal during the exciting experience of being on different TV shows and radio stations and I thought the future was going to be all about the Web so I purchased every “hospitalpatient” domain name possible and planned to eventually start writing about Healthcare on the Web.  In fact, the URL, www.HospitalPatient.com, is printed on the Book’s Spine.

There was something about new media which I found fascinating and my career in Film and TV was also gravitating in that direction so things seemed to be moving forward despite Healthcare not being the Number 1 priority for the USA.

Thanks to the resurgence of interest in Health-Care Reform and the advent of new and social media, my first book has become an “Evergreen” seller and that has provided me with the privilege of being able to reach and influence the growing niche of people living with some form of chronic illness. To that end, I have been focused on helping with the global development of “Health Care Social Media” (“HCSM”) utilizing a variety of Social Media Platforms such as posts on Twitter, Podcasting on YouTube, and Articles on my Blog as I believe HCSM is the patient-driven medium that will be the “Game-changer” we need to offset the Cartel-like business practices of most health insurance companies.  But I always try to make my approach to Healthcare FUN and I never lose my sense of humor about my plight.

Did you know about your condition before you were diagnosed?

No.

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

I detailed this a bit above but I’d like to add that beyond being validated by the initial symptom information I learned about Crohn’s Disease from those CCFA pamphlets, I took a Groucho Marx approach in that: “I don’t care to belong to a club that accepts people like me as members.”  By this, I mean that I did not want to belong to the different Support Groups for Patients with Crohn’s Disease because I saw those people as being SICKLY and I’m was an athletic “party person.”  Therefore, what could possibly learn from them?   Well, as Life has turned out, I probably have one the most unique cases of Crohn’s Disease in the world and/or my record of being hospitalized over 200 times with almost 20 surgeries would certainly qualify me to be a member of such Support Groups.  Moreover, a day doesn’t go by when I am not helping another Crohn’s Disease Patient on Twitter or addressing their complimentary emails about my Book, etc.  So, for someone who shied away from other folks with Crohn’s Disease, they now seek me out for my information and I am honoured to share it with them.  I guess that means I have finally grown up after all.

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

Any site that shows an awareness of “Health Care Social Media” (“HCSM”) is usually credible for me.  This ranges from Healthcare Portal sites like WEGO Health to the Yahoo Group about Crohn’s Disease to certain Podcasts and some Facebook pages.  Some ‘Patient Community’ sites are also becoming reliable sources of information.   I think it is important to understand that you are going to meet people on the Web who have an agenda which skews their ‘data’ and until you figure out how to screen those people the benefits you will get from the Web will be limited.  Therefore, I suggest that people use HCSM tools but in a ‘diversified’ manner so that they stand a better chance of getting credible information.  Lastly, when a content provider or patient only writes about extremes – good or bad – I usually find that NOT to be very credible as I would prefer a more consistent Blogger or Podcaster because the reality is that most interactions with the Healthcare System are routine.  The extremes should stand out as just that and not be the norm.

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?

Crohn’s Disease and working in a very structured high pressure environment is not a good combination.  With that as a Foundation, I think it is important that you understand your illness and then find employment that is reasonably best suited towards its ‘disposition’.  For me, that meant I had to work at small companies and then ultimately on my own.

I have worked for law firms and larger companies and they have all been very respectful toward my illness but I always sensed resentment (on their part) or guilt (on my part) and I didn’t like that.  I preferred to work in an environment where my contributions were gauged on their quality and not on ‘Face Time’ (i.e., number of hours worked on a weekend or just being seen in the office on a weekend).

There were many embarrassing situations at work due to the ‘bathroom-nature’ of Crohn’s Disease and that just taught me a great deal about my own resolve because people think it’s because you can’t handle pressure when you know you can and that it is just your illness acting up at an inopportune time.  Lastly, I learned that when you have a Chronic Illness and you have issues in the workplace, it is best to use your illness as a shield and not a sword.  I mention this because of the various Disability and Discrimination Laws as patients shouldn’t be taking advantage of these laws that are meant to protect them.  So long as you follow that edict, people will respect your plight and they will do everything they can to help you.

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

Flex-time and/or Working from home (with the proper technology) so that people in general, and specifically those with Chronic Illnesses and Disabilities, can work smart and efficiently.  There is too much emphasis placed on ‘working hard’ or working long hours, when the focus should simply be on getting the job done.  If employers make it clear from the get-go that all employees will be judged based on  their performance, I think it will ease up the stress and then tools such as Flex-Time and Working From Home (when necessary) can be vital to smart working (This approach became crystal clear to me after reading the tremendously insightful Book, Four hour work week by Timothy Ferriss.  As an attorney who billed by the hour, I never understood why clients let law firms get away with that type of billing arrangement.  It’s as if clients will accept the inefficiencies of some attorneys who may not be as talented as the ones they think they are hiring.  To that end, if you are so talented then any chronic illness or disability should not matter because ultimately it is all about working smart and getting the job done.)

What is your top tip for employers with your condition?

Get educated about the broad spectrum of Crohn’s Disease and also about how serious it can be. Learn about the needs of a Crohn’s Disease Patient so that when your employee rudely darts out of a meeting to use the bathroom, don’t be so quick to judge.  Conversely, I think the Crohn’s Disease Patent must educate his or her employer if such instances are going to occur.

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

I think about the incredible support system I have and that so many people respect how I manage my illness.  I never feel sorry for myself or wonder ‘Why Me?’ as I think those are wasted emotions.  I am always focused on doing whatever I can to move forward.   If I have a flare-up and my body obviously is not cooperating with my plans for that day, I try to nevertheless somehow be productive by listening to an audiobook or reading a magazine I never would normally have the time to do.  When I must completely shut down and sleep, I try to embrace that scenario and realize that I will get to fight another day.

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

LOL. Yes.  I’ve become a realist who is accustomed to battling all types of adversity.  It is often frustrating that my Life seems to be largely about staving off devastation of one form or another but the fact that I can write about it and share how I did it with similarly afflicted people makes me feel as if it is a good thing that I got Crohn’s Disease as opposed to someone else who may not have coped with it as well as I have.  But please let me say that I only cope with it this well because of the lessons I’ve learned over the years through the relentless support of Friends and Family.

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

Don’t listen to everything you hear or believe everything you read.  They are making great strides in treating Crohn’s Disease and the longer you live – the longer you live.  Meaning that if you are able to keep going, they may find a Cure in your lifetime.  Also, having Crohn’s Disease won’t be a Deal-Breaker in terms of human relationships (i.e., Friend, Lover, Employer, etc.)  but how you handle having Crohn’s Disease will be.

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

If you really care about the person, please buy my Book, Confessions of a Professional Hospital Patient and get educated about what Crohn’s Disease is and what it is like to live and cope with it.  The book is available at Amazon.com, Barnes and Noble and easiest to purchase at www.HospitalPatient.com as there is a picture of the Book with a Click-Through to the Amazon.com Page on which it is sold.

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

Plaintain and Broccoli are GOOD for people with Crohn’s Disease!

This paper from GUT, which is the British Medical Journal’s gastroenterology journal, caught my eye a few weeks ago. The title ‘Translocation of Crohn’s disease Escherichia coli across M-cells: contrasting effects of soluble plant fibres and emulsifiers’ sounds a bit dry, but if you read the paper you find out some VERY interesting information which I’ll summarise:

Learn to love broccoli

  • Plaintain and Broccoli are GOOD for people with Crohn’s Disease
  • Poly-sorbate 80 (E433) is BAD for people with Crohn’s Disease

The paper explains that Crohn’s disease is common in developed nations where the typical diet is low in fibre and high in processed food. They explain that remission can be acheived through enteric diets and they therefore propose that diet must play some part in the activity of the disease.

The researchers say “It is interesting that parts of the world such as Africa, India and Central America where plantains form an important part of the staple diet have low rates for inflammatory bowel disease and colon cancer. We have therefore now tested the ability of soluble plant fibres, such as those found in plantain, to block translocation of Crohn’s E coli across M-cells in vitro”.

E-coli is found in greater numbers in the intestinal tissue of Crohn’s patients. E-coli gets into the tissue through M-cells (Microfold cells), but this activity is inhibited in the presence of certain soluble plant fibres  but increased in the presence of low concentrations of an emulsifier that is commonly used in processed foods, poly-sorbate 80.

The researchers state that the “increase in the incidence of Crohn’s disease seen in recent years in Japan correlates with increased fat intake. Although the fat itself may be harmful, it is also possible that increased consumption of emulsifiers contained in processed fatty foods could be a factor”.

Emulsifiers are a permitted food additive which help keep foods together that could seperate e.g. oil and water. Although emulsifiers are probably largely broken down during the human digestive process,there has not been much investigation into their effects on intestinal permeability.

If you read this paper and decide that you would like to avoid the emulsifier mentioned in this paper here are the names it is known by:

  • Polysorbate 80
  • (Polyoxyethylene (20) sorbitan monooleate)
  •  (x)-sorbitan mono-9-octadecenoate poly(oxy-1,2-ethanediyl)
  • Alkest TW 80
  • Tween 80
  • POE (80)
  • sorbitan monooleate
  • E433

This paper does leave me with some questions:

  1. Where can I get plantains in Shrewsbury?
  2. Should I avoid E-coli pro-biotics?
  3. What other fruit and vegetables contain high amounts of soluble dietary fibre?

What am I going to do differently as a result of reading this research?

  1. Go through my kitchen cupboards and give away or throw out anything with Poly-sorbate 80 in it.
  2. Put everything with a non-distinct emulsifier ingredient in it in a pile and investigate the origin of the emulsifier
  3. Eat some plantains!
  4. Eat more broccoli!
  5. Investigate the e-coli pro biotic issue
  6. Re-double my efforts to not eat as much pre-prepared processed foods

Animal experiments and Crohn’s Disease

The Guardian published an article today about animal experiments, and specifically about how there has been a 1% increase in the use of animals in experiments.

This is a tricky one for people with whole system (systemic) conditions such as Crohn’s disease – other conditions affect just one or two types of tissue in the body, but our condition draws in the whole of the GI tract and the immune system – both of which are inextricably linked to other body systems. You couldn’t culture some cells and test them because it would not show the systemic effects.

Many of the new drugs such as infliximab could not be developed without the use of animals (in this case mice).

However, the use of animals can give misleading results, because although they are similar, they are not exactly the same.

The experiments can cause pain, they mean inducing diseases into normally healthy animals and of course the effects and side effects of the drugs being tested.

Animals are kept in unnatural environments and their behaviour is restricted.

How do you feel about animal testing for Crohn’s Disease?

US IBD patients required for huge study

* Can the UK have one next?

The Crohn’s & Colitis Foundation of America has opened enrollment for CCFA Partners, which is a comprehensive Internet-based study of thousands of patients with Crohn’s disease or ulcerative colitis (which affects over 1.4 million Americans).

Previously,  research has typically been conducted in small studies at major medical centers, but this initiative aims to partner with 10,000 patients and track their experiences with Inflammatory Bowel Disease (IBD) over time.

The aim is to help researchers better understand the natural history and course of the disease, and in turn allow them to address the issues that patients face.

“The goal of CCFA Partners is to invite patients to help researchers understand how IBD is affecting them,” says Kimberly Frederick, Senior Vice President of Mission at the Crohn’s & Colitis Foundation of America. “We hope to use CCFA Partners to ultimately improve the quality of life for people with IBD.”

Patients who enroll will complete a brief confidential online survey to provide information about their experiences with IBD. Participants will be subsequently contacted via e-mail every three months with information about the study’s progress. Every six months they will be asked to update their disease conditions.

Patients interested in learning more and participating in CCFA Partners can visit http://ccfapartners.org.