Tag Archives: IBD

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.

10 IBD friendly ways to keep fit

Okay, Okay, even getting up in the morning can be a struggle sometimes. But when you have a chronic disease and want to maintain your fitness how can you do it? If you have Crohn’s you might be put off team activities or joining a gym because of the potential to spend time in the bathroom, or the travelling plus the activity is too much effort.

Here are some alternative ways that you could keep fit at home:

1. Follow fitness DVDS at home – there are so many out there that there is boudn to be one that meets your needs and level of fitness.

2. Get a Nintendo Wii Console and a Wii Fit along with games such as: Just Dance (Wii) and Zumba Fitness – you can pause the game and run to the loo if need be, or just take a break.

3. Get an Xbox 360 Console 250GB and a Kinect – you can pause the game and run to the loo if need be, or just take a break.

4. Turn your dining room table into a table tennis table – any surface 5ft x 2.5ft will get a decent game going.

5. Using Hand Weights to help increase muscle mass and build bone density.

6. If you have the space and the money, you can install your own gym equipment at home

7. Skipping or jump rope is a great way to develop cardio vascular fitness and explosive energy without going anywhere.

8. Play the drums

9. Follow Yoga or Pilates DVDS for a more mindful exercise practice

10. Hire a personal trainer

How do you keep fit at home? What problems do you face with more traditional methods of keeping fit?

Vegetables that won’t destroy you if you have Crohn’s or Colitis (apparently)

Continuing the theme of food that won’t destroy you if you have Crohn’s or Colitis (Last week’s fruit post is here).

As before, my first port of call, and the inspiration for today’s post, was What to Eat with IBD: A Comprehensive Nutrition and Recipe Guide for Crohn’s Disease and Ulcerative Colitis by Tracie Dalessandro, who is not only a registered dietician with a masters of Science in nutrition, but also a Ulcerative Colitis and subsequently Crohn’s Disease sufferer. I extracted her list of ‘Vegetables that heal’ from chapter 2 below and ran then through the nurtient tool over here.

Tonight, I have just researched the following:

  • Beta-carotene / Vitamin A – improves resistance to infection, supports growth and repair of tissue; maintain health skin and mucous membranes (Need 5000IU per day)
  • Vitamin D – Needed for proper formation of the skeleton and maintaining the mineral balance in bones (Need 60oIU per day)
  • Vitamin C – Anti-oxidant, wound healing, formation of collagen and appropriate immune responses (Need 60mg per day)
  • Folate – necessary for proper cell division – especially in IBD patients (400mcg per day)

Here is the list of vegetables that heal, based on 100mg, cooked without salt, unless otherwise stated. Brocolli, Collard Greens, Arugula, Asparagus, Butternut Squash, Carrots, Peppers and Sweet Potato stand out as the the superfood here, but almost all the vegetables on the list have a role in supplying a important vitamin:

  • Acorn squash Vitamin A: 817IU; Vitamin C: 11mg
  • Arugula (raw) Vitamin K: 109mcg; Vitamin C: 15mg; Folate: 97mcg
  • Asparagus Vitamin A: 1006IU; Vitamin K: 51mcg; Vitamin C: 8mg; Folate: 135mcg
  • Broccoli Vitamin A: 1548IU; Vitamin K: 141mcg; Vitamin C: 65mg; Folate: 108mcg
  • Butternut Squash Vitamin A: 11155IU; Vitamin C: 12mg; Folate: 16mcg
  • Carrots Vitamin A 17036IU;  Vitamin K: 14mcg; Vitamin C: 4mg; Folate: 14mcg
  • Cauliflower Vitamin K: 14mcg; Vitamin C: 44mg
  • Collard greens (very soft) Vitamin A: 8114IU; Vitamin K: 440mcg; Vitamin C: 18mg;Folate: 93mcg
  • Endive (raw) Vitamin A: 2167IU; Vitamin K: 231mcg; Vitamin C: 6mg; Folate: 142mcg
  • Kale (very soft) Vitamin A: 13623IU; Vitamin K: 817mcg; Vitamin C: 41mg;
  • Lettuce Vitamin A: 8711IU; Vitamin K: 103mcg; Vitamin C: 4mg; Folate: 38mcg
  • Parsnips Vitamin K: 1mcg; Vitamin C: 13mg; Folate: 58mcg
  • Peppers (red) Vitamin A: 3582IU;  Vitamin K: 5mcg; Vitamin C: 171mg; Folate: 10mcg
  • Potatoes Vitamin K: 2mcg; Vitamin C: 13mg (skin on baked, 7mg boiled, no skin); Folate: 28mcg
  • Pumpkin Vitamin A: 4992IU; Vitamin K: 1mcg; Vitamin C: 5mg; Folate: 9mcg
  • Spagetti squash Vitamin A: 5224IU; Vitamin C: 4mg; Folate: 12mcg
  • Spinach Vitamin A: 10481IU; Vitamin K: 494mcg; Vitamin C: 10mg; Folate: 146mcg
  • Sweet potato Vitamin A: 19217IU; Vitamin C: 9mg
  • Tomato (without skin) (Raw) Vitamin A: 833IU;  Vitamin K: 8mcg; Vitamin C: 13mg; Folate: 15mcg
  • Yam  Vitamin K: 2mcg; Folate: 16mcg

Please help card in French for people with IBD

Travelling abroad with an IBD, indeed any health problem, has a few additional complications on top of the standard hassle of not forgetting anything important, leaving on time and not losing your bank cards.

To help ease some of the stress I’ve developed a variation of the NACC’s ‘Can’t wait card’ for you to use when travelling abroad.  This card will help you communicate when you need to use public toilet facilities but don’t know where they are. If there are no public facilities nearby then the card also asks if  you can use private / staff facilities. The second side of the card is for those occasions when there is a public toilet, but you need to pay to use it – and you don’t have the right change.

Although many people speak English across the world, and there are phrase books that help you, my experience is that rushing to try to find a toilet is stressful and difficult to communicate. You are often misunderstood. These useful phrases often don’t appear in phrase books. In some rural areas the majority of people don’t speak English.

Please help card in French

I have had the following text translated into French and put it into a Credit card sized pdf that you can print out and laminate. You can keep it in your wallet/pocket for emergencies.

This is free to download but if you can afford to it would be great if you could donate to a charity which supports Crohn’s and Colitis .e.g. through my Just giving page.  If you can’t print this out and laminate it yourself please contact me as I can do this for you. I will charge a fee for materials, postage and a donation.

What the card says

SIDE 1:

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or hazardous to other people.

Please can you show me where the nearest toilets are that I can use?

If there are no public toilets nearby, may I use your staff facilities?

Culturally appropriate way of expressing thanks

SIDE 2.

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or dangerous to other people.

I do not have the entrance fee required to use these toilets, and because of the pain I am in I do not have time to get the correct change.

Please will you let me use these toilets? I will come back and pay afterwards.

Culturally appropriate way of expressing thanks

Directions

  1. Please make a donation to Crohns and Colitis UK through my ‘Just Giving’ page
  2. Print out the Please help card in French
  3. Cut out the two card shapes below
  4. Glue them together, so the text is showing on the outside
  5. Place in a laminating sleeve
  6. Laminate!
  7. Alternatively you could make two cards by not gluing them together and laminating them separately.

Acknowledgements

Grateful thanks to Irma Elizabeth, languages teacher, for her translation of the text into French for this card.

An if you have missed the embedded links here they are:

Just giving donation page for Crohn’s and Colitis UK

Please help card in French

Over the next couple of days I will be uploading a Frenchnew language versions of the card. Do you speak another language? Can you help this project? Contact me if you can!

Book review – The Foul Bowel

The Foul Bowel by John Bradley. CPI Antony Rowe, Chippenham, Wiltshire. Yknot Publishing, 2010.

The Foul Bowel – 101 ways to survive and thrive with Crohn’s Disease is part autobiography and part Haynes Manual for surviving the medical intervention and social isolation that comes with inflammatory bowel disease. Aimed primarily at people with Crohn’s 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 wasn’t sure what to expect from a book called ‘Foul Bowel’ with a cartoon on the front depicting an all too familar scenario for the Crohn’s patient, but when it arrived I was impressed by its size, weight and high production values. A quick flick through showed a nice typeface, cartoons, tips and medically related quotes from famous people. It looked like Foul Bowel was going to be quite different from any of the other Crohn’s books available on the market which tend to read like a medical text book or misery memoire.

The book is divided into 18 sections beginning with ‘Diagnosis Day’ and ending with ‘Looking Forward’. Each section is readable as a ‘pick up put down again’ or as a continuous narrative, though as a Crohnie I’ll admit that I did start at the end just to check that there was a happy ending!

Bradley tells his story as it happened, looking back to his life, work and interaction with medical services. Dotted throughout the text are added remarks and tips that come from the benefit of hindsight, and everything is tinged with the gallows humour of the veteran crohnie who long ago came to terms with the ubiquitous hospital gown, random side effects of barely effective medicine and brush with morphine addiction. This style is perfect for such a heavy subject and is well supported by the great cartoons that are well judged, clearly link to the anecdotes in the text and jolly funny.

Bradley and I have had very similar Crohn’s history, though I have not had the large numbers of strictures he has experienced, and it was quite a relief to see that it wasn’t just me that well, lets say, had issues with gowns (especially gentlemen of a certain age in hospital gowns), issues with side effects (the side effects work just fine, why doesn’t the bit that I need to work, work?) and several blissful weeks attached to a morphine pump following major surgeries knowing worrying wondering if I might be addicted. There are many, many other tales in the book, and you are bound to recognise yourself in some of the situations – nodding sagely if you had it as bad as Bradley (learning how to cough after major abdominal surgery in order to prevent your lungs from developing infections) and chuckling wryly if you haven’t (I didn’t try to date any of the medical staff)!

A key theme throughout Foul Bowel is the importance of taking responsibility for the management of your health and your life – basically because no-one else will.  Crohn’s is such a difficult condition, from the pre-diagnosis completely random signs and symptoms  (I was variously asked about TB, Chronic Fatigue, HIV and leukemia before they settled on Crohn’s) through to the inconsistent results from drugs and their side effects, that the medical profession does rely on us as patients to help them as much as possible. Bradley also offers some insights into manging work with Crohn’s disease that will be useful people who are trying to make decisions about balancing their work and their health.

I think that the only addition that I would like to see is a listing of all the tips as an appendix / aide memoire, but then I am a lists kind of person.

In conclusion I think that this is an excellent book for anyone suffering Crohn’s disease, or their family /carers who would like an insight into the disease and it’s management. I also heartly recommend it to anyone in the medical profession looking after people with Crohn’s. It would make an excellent gift for the Crohnie in your life – a veteran like me can laugh out loud, a newbie can see what may be ahead and be armed with the tips and advice offered by Bradley.

You can buy the Foul Bowel from John’s website – if you co to his website you will see all the different country and delivery options. Happy reading!

Disclosure: I was delighted to receive a complimentary copy of the Foul Bowel from John Bradley to review for my blog.

Please help card in German for people with IBD

Travelling abroad with an IBD, indeed any health problem, has a few additional complications on top of the standard hassle of not forgetting anything important, leaving on time and not losing your bank cards.

To help ease some of the stress I’ve developed a variation of the NACC’s ‘Can’t wait card’ for you to use when travelling abroad.  This card will help you communicate when you need to use public toilet facilities but don’t know where they are. If there are no public facilities nearby then the card also asks if  you can use private / staff facilities. The second side of the card is for those occasions when there is a public toilet, but you need to pay to use it – and you don’t have the right change.

Although many people speak English across the world, and there are phrase books that help you, my experience is that rushing to try to find a toilet is stressful and difficult to communicate. You are often misunderstood. These useful phrases often don’t appear in phrase books. In some rural areas the majority of people don’t speak English.

Please help card in German

I have had the following text translated into German and put it into a Credit card sized pdf that you can print out and laminate. You can keep it in your wallet/pocket for emergencies.

This is free to download but if you can afford to it would be great if you could donate to a charity which supports Crohn’s and Colitis .e.g. through my Just giving page.  If you can’t print this out and laminate it yourself please contact me as I can do this for you. I will charge a fee for materials, postage and a donation.

What the card says

SIDE 1:

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or hazardous to other people.

Please can you show me where the nearest toilets are that I can use?

If there are no public toilets nearby, may I use your staff facilities?

Culturally appropriate way of expressing thanks

SIDE 2.

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or dangerous to other people.

I do not have the entrance fee required to use these toilets, and because of the pain I am in I do not have time to get the correct change.

Please will you let me use these toilets? I will come back and pay afterwards.

Culturally appropriate way of expressing thanks

Directions

  1. Please make a donation to Crohns and Colitis UK through my ‘Just Giving’ page
  2. Print out the Please help card in German
  3. Cut out the two card shapes below
  4. Glue them together, so the text is showing on the outside
  5. Place in a laminating sleeve
  6. Laminate!
  7. Alternatively you could make two cards by not gluing them together and laminating them separately.

Acknowledgements

Grateful thanks to Pauline Kussell, student from Germany currently residing with my friend Carla in Shrewsbury, for her translation of the text into German for this card.

An if you have missed the embedded links here they are:

Just giving donation page for Crohn’s and Colitis UK

Please help card in German

Over the next couple of days I will be uploading a French version of the card. Do you speak another language? Can you help this project? Contact me if you can!

Please help card in Spanish for people with IBD

Travelling abroad with an IBD, indeed any health problem, has a few additional complications on top of the standard hassle of not forgetting anything important, leaving on time and not losing your bank cards.

To help ease some of the stress I’ve developed a variation of the NACC’s ‘Can’t wait card’ for you to use when travelling abroad.  This card will help you communicate when you need to use public toilet facilities but don’t know where they are. If there are no public facilities nearby then the card also asks if  you can use private / staff facilities. The second side of the card is for those occasions when there is a public toilet, but you need to pay to use it – and you don’t have the right change.

Although many people speak English across the world, and there are phrase books that help you, my experience is that rushing to try to find a toilet is stressful and difficult to communicate. You are often misunderstood. These useful phrases often don’t appear in phrase books. In some rural areas the majority of people don’t speak English.

Please help card in Spanish

I have had the following text translated into Spanish and put it into a bank  card sized pdf that you can print out and laminate. You can keep it in your wallet/pocket for emergencies.

This is free to download but if you can afford to it would be great if you could donate to a charity which supports Crohn’s and Colitis .e.g. through my Just giving page.  If you can’t print this out and laminate it yourself please contact me as I can do this for you. I will charge a fee for materials, postage and a donation.

What the card says

SIDE 1:

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or hazardous to other people.

Please can you show me where the nearest toilets are that I can use?

If there are no public toilets nearby, may I use your staff facilities?

Culturally appropriate way of expressing thanks

SIDE 2.

Culturally appropriate greeting

Please help!

I have a medical condition which means I need to use the toilet urgently.

This condition is not infectious or dangerous to other people.

I do not have the entrance fee required to use these toilets, and because of the pain I am in I do not have time to get the correct change.

Please will you let me use these toilets? I will come back and pay afterwards.

Culturally appropriate way of expressing thanks

Directions

  1. Please make a donation to Crohns and Colitis UK through my ‘Just Giving’ page
  2. Print out this document
  3. Cut out the two card shapes below
  4. Glue them together, so the text is showing on the outside
  5. Place in a laminating sleeve
  6. Laminate!
  7. Alternatively you could make two cards by not gluing them together and laminating them separately.

Acknowledgements

Grateful thanks to Irma Elizabeth, Spanish Teacher, for her translation of the text into Spanish for this card.

An if you have missed the embedded links here they are:

Just giving donation page for Crohn’s and Colitis UK

Please help card in Spanish

Over the next couple of days I will be uploading French and German versions of the card. Do you speak another language? Can you help this project?

EFCCA “IBD Impact” Survey

Take part in the largest ever survey of IBD patients in Europe! This study is looking at the impact of Crohn’s and Colitis on all aspects of life. The survey is completely anonymous and is being managed by the EFCCA, the European IBD Association. Get a nice cup of tea,  and visit the IBD Impact Survey website to take part. The survey takes 20-30 minutes to complete, and will provide invaluable evidence to influence national and European governments.