Tag Archives: crohn’s

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.

If you know you get stressed here are some things you can do to learn to be less stressed

This is the fifth post in a series about stress. Previous posts are:

You might want to actively take action to prevent stress or learn techniques that will help you manage stress. Here are eight commonly available ideas to get you started

  1. Try out a few local Yoga classes and attend the one that suits you the most
  2. Look for a meditation class
  3. Learn relaxation techniques
  4. Learn assertiveness / mental toughness
  5. Confidence
  6. Talk to someone you really trust
  7. Learn time management techniques
  8. Work off your stress with physical or mental activity

7 Active stress busters

This is the fourth post in a series about stress. Previous posts can be found here, here and here.

Stress can impact on Crohn’s Disease and so it is important that you actively manage your stress levels. Here are some active positive things that you can do which will keep your mid off stressful thoughts and get you doing / thinking about something else instead:

  1. Learn to say no – you can’t do everything all of the time
  2. Delegate or allocate tasks to others – this can be at work or home e.g. let someone else book the restaurant or cook a meal
  3. Treat yourself regularly – what do you enjoy? Theatre, cinema, favourite restaurant, evening class or massage?
  4. Make time every day to switch off with friends or family – as Jane Howard said ‘Call it a clan, call it a network, call it a tribe, call it a family.  Whatever you call it, whoever you are, you need one’
  5. Try to have a special goal to acheive – something to look forward to such as a party or a holiday that can keep your mind focussed on something positive
  6. One day / evening a week try to go out of the house to do something – don’t just stay in and watch TV
  7. If you have children, try to have some time on your own where you can prioritise your needs

7 behavioural things to watch out for stress wise

This is the third post in a series about stress. Previous posts can be found here and here.

Doughnuts...my naughty coping mechanism

If you are aware that you are stressed you can work to develop awareness of behaviour patterns that might bring temporary short term relief but unfortunately exacerbate your stress in the long term.

Here are seven common behaviours to watch – put your sensible head on and try to overcome your inclination to go with them.

  1. Watch what you eat – are you consoling yourself with sugary or fatty snacks?
  2. Watch out for other behaviour such as self-medicating stress with nicotine, alcohol, tranquillisers or painkillers
  3. Make sure you are getting enough sleep – I try to make sure that I am in bed by ‘pumpkin time’ i.e. midnight  because I know that the calm, collected and fresh looking Catharine won’t be around tomorrow if I am in bed later than midnight.
  4. On the otherhand – don’t oversleep or stay in bed all day
  5. Watch out for when you are getting tired and do something about it before you get too stressed
  6. Watch out for signs and symptoms and if you think you might be getting ill, you probably are, so don’t carry on as if you aren’t ill.
  7. If you can anticipate stressful situations then you might be able to work towards managing them a bit better – increase your ‘down time’ or reduce other committments.

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

Am I stressed? Symptoms of stress

This is the first post in a series about stress. If you have chronic disease, it is important to understand stress because  it can make many chronic diseases worse, and can lead to other symptoms un-related to your original condition.



These symptoms can be confusing, can be confused with other ailments, and can increase / decrease depending on what is happening in your life.

You might not have the mental machinations of stress and anxiety such as thinking about a situation all the time or feeling stuck, but you might be experiencing it all the same.

The following list is a range of symptoms which might be related to stress and can be used as signs from your body that you need to make some changes to become less stressed.

If you experience any of the symptoms below you should get in touch with your Doctor to discuss them immediately, as they could be a major emergency:

If you experience any of the following for longer than a few days it is worth talking to your Doctor about management / treatment options:

The following are mental rather than physical symptoms:

What symptoms do you experience when you get stressed?

Second draft of the medical history proforma – so you don’t have to repeat yourself over and over

One of the most frustrating things about Crohn‘s (especially if you have blockages and adhesions) is that you can unexpectedly end up in hospital all over the place. I had a period of a few years where every holiday was doomed to end up with me in hospital somewhere – eventually the problem was found.  It turned out that there was a grapefruit sized abscess wrapped around my bowel which led to exciting impromptu re-enactments of ‘that scene’ from the exorcist.

I now have an outline of my medical history to give to medical staff on my ‘travels’. The aim of the outline is to help me remember key dates and events, which can be forgotten in the begging for morphine confusion of admission.

I have attached a draft version of the outline here to share with readers: Summary of medical history (Draft 2) in order to get some comments from you about it.

  • Is there anything I have missed?
  • Is there about the right amount of space or do you want more?

Medical staff often ask you to repeat your medical history as a way of:

  • building rapport
  • checking you are compos mentis (composed mind)
  • checking that you are not suffering any ill effects of medication
  • checking for delirium that comes with fever

So having an outline to hand won’t necessarily reduce the number of times you are questioned but it will make a difference when it matters.

It is also useful to have to hand so that a carer, friend or relative can give all the important details to medical staff if you are not able to coherently communicate. This can happen if you have a fever or are in considerable pain.

So do let me know what you think about the second draft version, here it is:Summary of medical history (Draft 2))

and then I will upload a final version for you to write your own outline.

Joint mobilising series

This collection of movements is a multi-purpose series designed to:

  • warm up some of the major muscles of the body
  • warm up some of the major joints of the body
  • develop your physical awareness of some of the major muscles and joints in your body
  • help transition from the stresses and strains of the day towards a calming Yoga practice

It is also a very useful sequence to do if you are confined to bed, or the sofa, but are feeling achy and in need of doing something.

1. Shoulder mobilising sequence from this post

2. Leg stretch

Have your knees bent and feet on the floor/bed. Draw your right knee in towards your belly and hold the back of your right thigh with both hands. As you breathe in (inhale) straighten your leg as much as you can and as you breathe out (exhale) bend your knee back to the starting position.

Draw your left knee in towards your belly and hold the back of your  left thigh  with both hands. As you breathe in (inhale) straighten your leg as much as you can and as you breathe out (exhale) bend your knee back to the starting position.

Recommendation: repeat up to five times, building up to ten times.

Extension 1: Extend your leg, and hold the stretch for up to 10 breaths.

Extension 2: repeat the movement using both legs

Extension 3:extend both legs and hold the stretch for up to 10 breaths

3. Ankle twirls

Have your knees bent and feet on the floor/bed. Draw your right knee in towards your belly and hold the back of your right thigh with both hands. As you breathe in (inhale) straighten your leg as much as you can. Twirl your ankle around one way and then twirl your ankle around in the opposite direction. As you breathe out (exhale) bend your knee back to the starting position.

Have your knees bent and feet on the floor/bed. Draw your left knee in towards your belly and hold the back of your left thigh with both hands. As you breathe in (inhale) straighten your leg as much as you can. Twirl your ankle around one way and then twirl your ankle around in the opposite direction. As you breathe out (exhale) bend your knee back to the starting position.

Recommendation: repeat up to five times, building up to ten times.

4. Hip openers

Gently rest both hands on your right knee and move your knee in a circle by pulling it towards you. opening to the side, pushing it away from you and then taking your knee over your left hip.

Repeat with your left knee.

Recommendation: repeat up to five times, building up to ten times.

5. Reclining cobblers pose

Start with knees bent and feet on the bed / floor. when you are ready, drop your left knee out to the left side, and then drop your right knee out to the right.. Bring your soles together. If you want to you can place cushions underneath your thighs to help support your legs. You may wish to put your hands on your thighs to help increase the stretch. Just do what feels right.

Recommendation: hold for between 5 and 10 breaths.

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.

Ten things I won’t be doing because of Crohn’s Disease

Aerial silk artists seem to be a favourite amongst TV marketeers at the moment, and as beautiful as it looks, I can’t help but cringe when I see them twirl down with the tissu wrapped tightly round their bellies.  So I got to thinking, what are top ten things that I really won’t be doing because of Crohn’s Disease?

1. Aerial silks Ouch!

2. Extreme corset tight lacing Ouch!

3. Undertaking any form of bushtucker trial Ouch and Yuk!

4. Having colonic irrigation – I just would not do this!

5. The Yoga practice of Shankhaprakshalana which is useful for some people, but dangerous if you have IBD (the postures are fine, it is the repetitions and excessive water drinking which is not suitable for people with IBD)

6. Contact martial arts – I just can’t risk a blow to my tummy

7. Becoming a Royal Marine, I could train to pass the tests, but I wouldn’t be much good at being ‘on station’ for hours at a time with no toilet

8. Going on a badly organised expedition to a remote part of the world – lack of emergency medical supplies, unknown water supply and unknown food contamination has put me off

9. Any form of extreme eating competition

10. Giving Blood, they won’t let me, but maybe you can give blood instead!