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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

Coping with work, life and painkillers

Back at my money-raising post I asked for some ideas about subjects I could blog about and Lucy suggested a post about coping with the effects of painkillers. So here it is folks!

The first thing to realise with painkillers is that they have a number of effects that aren’t technically ‘side effects’ because these other effects can be just as strong as the painkilling.

The second thing to realise is that what happens to you will be different to what happens to me, and both of us will be different to John over at Foul Bowel or any other person taking the drug.

The third thing to realise is that your experiences will change as your circumstances change, as you grow older, as you gain or lose weight or as your pain increases or subsides. For example Tramadol has worked fine for me as the step down from morphine in a hospital setting, I could happily take it and carry on about my business of lounging about, reading magazines and accidently overhearing my neighbours conversations with their visitors, but at home it was quite a different matte – I go quite loopy, quite bonkers.

So here you go….

1. Be aware of your body and your mind – developing awareness of your body and mind can help you understand how the medication affects you. You can do this by simply sitting quietly for a minute or two and focussing on your body and noticing it.

2. By being aware, monitor how the medication is working. Has the pain reduced? That is quite an obvious one….. What other signs and signals is your body giving you? Are you feeing drowsy or tired? Nauseous? Lively? Absolutely out of it? With new medication, it is worth keeping a note of how it makes you feel for the first few days.

3. Don’t rely on just one type of painkiller. By doing 1 and 2 above you may realise that you need a small toolkit of different painkillers for different occasions. For example, the pill that can kill your pain enough to help you get a good night of sleep might make you randomly fall asleep drowsy during the day. Talk to your Doctor or a specialised pain nurse / medic about the different options available.

4. With number 3 in mind, there are loads more painkiller options than you might think there are. Most ‘pick up off the shelf’ medication is a variation of Paracetomol and Ibruprofen, and many doctors in the UK will respond to the need for more intense pain relief by prescribing something like co-codamol or di-hyrdocodeine. However, there are many more options available and these might work better for you than the standard options (or you might have a weird and wonderful experience). If you are in the US, YMMV, please let me know!

5. Work out a dosing regime that fits with your work/life-style. For example, for me, taking a dose at 4am means that I get a few hours of good sleep, followed by a few hours of pain free work/life in the morning which is usually my busiest / most creative time. If I took a dose at 7am I would just fall back to sleep and the day would be a complete disaster as a result… You can use the ‘day sectioning’ technique to help you develop your regime, and you may resolve to use different medication at different times of the day / night.

6. Once you have worked it out, Stick to your dosing regime, as the general consensus from the medical community is that it is better to keep the pain at bay than to oscillate between in pain and pain free.

7. It is OK to cut back some activity when you are in pain. So do so. In a future post I will show you a good technique for working out what to do and what to let go.

8. Tell other people who need to know that you are in pain and taking medication. This is especially important if your medication affects your alertness, concentration, hand – eye co-ordination etc. You might think you are OK, but you’d be surprised….

9. Try to be ahead of schedule / super organised in general so that you can slacken off the pressure to accommodate your pain days.

10. Be absolutely amazing to other people in pain / on painkillers, be completely there for them – think of it as paying it forward, what goes around comes around or universal karma.

So there it is, my top ten tips for coping with work, life and painkillers.

My Chronic Career – Gary with Crohn’s Disease

My Chronic Career’ presents interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Gary with Crohn’s Disease has kindly agreed to be interviewed and his story is below. Thanks Gary! 

(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 yourself and your medical history?

My name is Gary and I am originally from Northern Ireland. I am currently at Bournemouth University studying Forensic Science. I have the world’s greatest Girlfriend. Not only is she the love of my life but she is the probable reason I am still walking the earth! Although university is meant to be the best experiences of your life, for a Crohn’s suffer it can be the  most horrifying thing since they were diagnosed.

I was diagnosed with Crohn’s disease in November 2008 and have had to have 1 major op in march 2009 that probably saved my life. I also met the love of my life in January 2009 so she probably saved my life too.

I took ill first when I was in Belgium on holiday and originally thought I had contracted food poisoning from rabbit stew. After nearly 6 months the doctors decided that given the length of time I had been ill to get me properly checked over. I was sent for a number of different tests and I went to pick up my results fearing the worst!

When I first started high school aged 14 I was ill a lot and it was put down to bullying and no matter how much I said I wasn’t the more I got sick and I had to be protecting someone. So I believe that I had Crohn’s for at least 4 years before diagnoses. After I was diagnosed I was given tablets and that helped me stabilise but that was short-lived as within 3 months I was very ill. This led to 3 weeks in bed and 11 days with no food staying in my body. This led to scenes similar to those of “The Exorcist” only from both ends at the same time.

The knife was the only option by the time I got to the hospital! I had 6 inches of my small bowel removed and the ileocecal valve restructured and connected up again. Then 5 days of severe fighting lead to me coming out of hospital in record time, just in time to watch my beloved Man Utd win the Carling cup. But this again was short-lived as by the Tuesday, 3 days after being released ,my stitches burst and evil-smelling pus came flowing out the 12 inch lateral wound on my abdomen. Cue, another 2 days in hospital getting that drained and re stitched!

After that it was home time and a host of appointments and checkups. Though I managed to squeeze an Easter break over to Bournemouth to see my Uni and  meet up with the 2nd love of my life. My long-term girlfriend of 4 months at the time. For this break I got a severe telling off as I wasn’t meant to be doing very much during my rebuilding never mind flying to England! Lucky until September 2010, I haven’t looked back.

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

My Crohn’s has never really got in the way of my work or play to be honest. I have worked in 4 different bars and restaurants since being diagnosed. I also worked in a food processing plant distributing meat products all over the UK. Add to that I worked last summer in an amenity site to gain money for uni. I also play amateur league football. So this meant that I was in college during the day, 3 nights football training and sometimes 2 matches a week. So I can honestly say that my Crohn’s has never got in the way but at the same time I haven’t let it beat me!

Did you know about your condition before you were diagnosed?

To be honest I had never heard of it. When I went for my results and the doctor said they had found “abmormal” cells in my intestines he sent me up stairs to see a specialist. I played the scenario over in my head of how I going to tell my family & my new Girlfriend I had cancer! This is the only conclusion that I had considered.

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

The doctors and specialist gave me tonnes of leaflets and information from NACC and I spent the rest of the week reading everything I could get my hands on. I then started the process of telling everyone and explaining what I had and how I was going to “fix” it.

Also with the course I was studying (forensic science) they allowed me to do my medical research project on Crohn’s disease and this allowed me to talk to people all over the world that had various stages of the condition. All this was very informative and I believe that there is never any bad news, just news that you have to interpret! Never the less I got the highest grade available for my project and it was displayed for the world to see (well anyone that wanted to read it)

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 have a lot of friends online through various Crohn’s forums and through Facebook. Through my project I trailed through hundreds of websites but I do like to read the latest info coming out through a university group from America on Facebook. They are very quick to get the latest techniques and research online. They are truly amazing!

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?

I never had that many problems with my work as I had the freedom and understanding from my bosses that I needed the toilet when I needed it and that if I missed work I would work up the time or get cover a.s.a.p. This worked well as I worked with a group of girls that often wanted to swap shifts after heavy nights so I worked when I could and called in favours when I couldn’t. Though during the time I was ill and having to have the op, I was laid off as I had bad time keeping and unable to work for weeks because of the recovery from the op. The company did offer me a new job when I was fit to work again, though I didn’t take this and instead got a cash settlement in way of the holidays I would have been owed if they hadn’t laid me off.

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

My top tip would be work with the employee, let them have the freedom to negotiate their work at short notice. This is how my bosses worked with me and It worked well. We always had someone nominated to fill in just in case there were people ill or unforeseen circumstances. This worked well and although it may not be ideal but it works well in the long run because having that person on standby not only covers the Crohn’s patient but covers the hangover victim or the mother whose kids have been ill all night.

What is your top tip for employees with your condition?

My top tip for the employee is to open with the boss and the other employees. If people know what is going on they may be less likely to see your treatment as favouritism or talk behind your back. You will feel better about having to call on them if needed or having to phone in sick at the last moment.

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

When I take ill I tend to lie down and die for the duration of the flare up. Everyone knows I’m ill when I “stop”. Being quite active is an advantage because I can deal and cope with a lot and its only when it becomes unbearable that I have to admit defeat (if only briefly). I also tend to recover quicker if I starve myself and only take on fluids. I find this gives my body a break and allows for quicker recovery and I also find kicking a football about is a good release as well. Not exactly a Crohn’s coping mechanism but it is a stress relief and stress is a major contributor to the flare ups, so maybe it actually is.

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!)

Other than outstanding knowledge of every toilet in my university, town and neighbouring towns I think I have developed the quality of being able to work my socks off in a small time scale as I am either working to catch up or working to get a little bit ahead so I have a built-in mechanism allowing for illness. This stood by me at college as I was streaks ahead in all areas and allowed me the time off without having to worry about being behind. Therefore a lot of the pressure is taken off and stress dramatically.

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

Research and read everything you can get your hands on. It allows you to know what is going on inside and prepares you for what might be coming in years to come (hopefully not though) if you understand what is happening then you can tell others and the taboo that goes with the whole condition becomes non-existent and you and those close to you can deal with it and help to keep you on the straight and narrow

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

Read about Crohn’s and support the person that has been diagnosed. They will feel a lot better if they haven’t the need to explain everything every time something occurs! They will also feel better about approaching you as they know you understand and will help them get through the rough as well as the smooth!

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

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!

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?