Tag: Inflammatory bowel disease

My annual toilet rant

I have to say I find the price of toilets rather expensive and unlike last year when I travelled to London, this year I am going to blog about the problem. My bladder is partly at fault here, because it does not feel the need to empty whilst I am on the train but as soon as I arrive at any railway station I have to go, and usually quickly.

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Toilets are a problem for many people with bowel disorders, or lack of them to be precise, many people feel anxious at going out because they need to know where the toilet is, as they can need to go with some urgency. This can increase feelings of anxiety increasing symptoms, making the problem worse. I have recently written an article on IBD and quality of life and the survey (The IMPACT study) I used for the article contests to this very fact in people with this condition. The UK part of the survey revealed that during a flare 97% of IBD sufferers needed to open their bowels urgently, this only dropped to 70% between flares – this therefore represents the majority of responders. Episodes of diarrhoea were 5-10 times per day for 38% during a flare, this level remained at 11% during remission, and this clearly has a major impact on an individual’s ability to travel, work and to function day-to-day. Perhaps not surprisingly this affected the unemployed to a greater extent. One of the primary reasons for work absence is frequency of needing the toilet (38%) and anxiety due to the risks of incontinence (33%).

posterimpact

The British Toilet Association says that the provision of public toilets is a vital service for those people with medical conditions. They campaign for ‘provision of clean, hygienic and safe publicly accessible toilets that are available where and when needed, for all types of users. They request an end to public toilet closures and authorities acceptance that access to safe, discrete toilet facilities are a basic human need. The IBD quality of life study also highlights the need for accessible facilities, unavailability of toilet facilities can increase a persons’ anxiety at going out, which can make symptoms worse. 26% of people with IBD have found they have had to be rude with staff in public areas, whom often do not appreciate the person with IBD’s needs, and have refused to allow people access to staff toilet facilities.

ots-british-toilet-association-southport-ots-onthespot-ots-otsnews.co_.uk_0

This can lead to an individual being housebound by their symptoms, reducing access to society, friends and family. 81% of people with IBD reported that they are anxious about toilet facilities when travelling somewhere new. Perhaps surprisingly, the Impact survey found that the level of concern about toilet access increased with increasing age, clearly these worries are a very personal and significant problem for people with IBD. I suspect that the same is likely true for people with IBS and other bowel conditions. I do feel that it is the responsibility of the station operators to keep these prices in proportion, particularly when we are having to experience price hikes in other areas and many people who rely on government aid to live, especially those with bowel conditions, whose anxiety at trying to make ends meet can have a direct impact on the symptoms they experience. So come on guys please consider your toilet prices – available toilet facilities are a basic human need, not an excuse for making money.

Can’t wait cards can be purchased from

www.theibsnetwork.org

www.nacc.org.uk

Radar key for disabled toilet facilities and guides are available from

www.radar-shop.org.uk/Detail.aspx?id=44

Read Peter’s blog on toilets and IBD here

http://www.crohnsupport.com/toilet-finder/

The impact study can be downloaded from

http://www.efcca-solutions.net/country.php

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Stir fry beef low fodmap

gingergrind

This recipe is suitable for a Low FODMAP diet, lactose free, wheat free dairy free and some advice later will show you how you can modify this recipe suitable for Crohn’s and colitis too. Give it a go – also check out the following tool to help you monitor your symptoms of diarrhoea it is not a diagnostic programme so if you have a diagnosis and wish to know more read on…….

A new free online health programme and app called MyRhythm has just launched and is used to track your digestive health on the go discreetly and with ease. By inputting your food and mood, the app will draw up a monthly report, identifying certain triggers unique to the user for digestive upset.

Ingredients

1 tablespoon of Ginger, chopped

4 tablespoons of Tamari soy sauce

1 tablespoon of golden syrup

1 tablespoon of garlic infused oil (to ensure it is totally FODMAP free you need to purchase this)

1 pak choy

1 courgette

1 red pepper

1 spring onion, green part only

1/2 tin of bamboo shoots

250g of lean beef – cut into strips.

20131103_34modMethod

Chop ginger and add to a pestle with the golden syrup and garlic infused oil, grind to form a paste

Add this to the beef and chopped spring onion pour on the Tamari, mix well and leave to marinade for at least 30 minutes.

Chop the vegetables thinly and heat a wok – I use a non stick wok so I don’t need to add any further oil to this to cook the meat.

Add the meat first and cook, then add the vegetables and keep stirring till the vegetables are cooked.

Serve with boiled rice – ensure you use freshly boiled  rice and eat whilst hot to avoid resistant starches, if this is a problem for you.

20131103_53modIf you have colitis and don’t tolerate red meat you can use chicken or fish to make this recipe. If you are experiencing diarrhoea symptoms and have been advised to have a low fibre diet, you will need to reduce the amount of vegetables in this dish, 1/2 carrot and 1/2 a skinned red pepper cut finely and cooked well will be adequate (boil for 10 minutes – boil the pepper whole for 10 minutes and the skin will peel away, before you put the vegetables into a wok) and use powdered ginger instead of ginger root to make up the recipe. Discuss the iron content of your diet with your dietitian or IBD team – do not be tempted to try iron supplements without discussing this with your doctor or dietitian, they can make symptoms worse. Low FODMAP diet is suitable if you are in remission (your inflammatory markers or CRP are normal) with your colitis and are continuing to experience symptoms, your dietitian can advise you how to use the diet, to see which foods result in symptoms.

20131103_57modFor Crohn’s to make this diet suitable for LOFFLEX you can use the modifications which have been suggested for the low fibre diet.

Please note I do not endorse any medication companies but this app tool might be useful – only use medications on advice from your healthcare professional.

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Valentines Day approaches – love me, love my gut – even if it misbehaves sometimes.

Now, I’m not a counsellor or psychologist but I am able to give you some advice around dining out and reducing the anxiety this can cause around safe foods to eat. If you are going out with a new partner Dr Barbara Bolen has some really useful advice around dating and functional bowel problems (IBS.) She advises that you should be open about having digestion problems and it is OK to describe them as such, you don’t need—and probably

A little flippant perhaps – but also some truth, love me love my GUT!

wouldn’t wish to go into detail. She also provides some good examples of how to describe your GUT problems so check out her website. An explanation will also help to reduce your anxiety about needing to go to the loo frequently during a meal and this might help reduce the actual visits required. Dr Bolen also has some really good information on her website about how to tell someone about your IBS, relationships and how to enjoy a healthy sex life with functional bowel problems, check out her site here –

http://ibs.about.com/od/livingwithibs/tp/IBSandDating.htm

Dr Bolen has also posted a link about this post and she does also appreciate Valentines Day is not a day that everyone celebrates and it can be a time that can be difficult psychologically – see the link here:-

http://ibs.about.com/b/2013/02/14/ibs-and-valentines-day.htm

If you are going on a date you may want to go to an establishment that you know well and ask for a table to be reserved in a good position, making it easier should you need to visit the toilet. Making a suggestion about where to go on a date shouldn’t cause a problem, just be a little assertive and ensure that you explain about your IBS at some point—if someone wishes to go out with you this really shouldn’t be an issue. You could also a look at the menu before your visit and telephone the chef to ask if they can cook your food without ingredients that may cause problems if this helps. See if your partner also wishes to look at the menu before arriving, this will leave more time for conversation and getting to know each other. Looking at the menu is easier to do these days as most restaurants post menus on-line.

Eating out on the Low FODMAP diet can be challenging, as onion and garlic are widely used, don’t forget to ask about sauces and stock. Having dietary intolerances shouldn’t stop you going out – some ideas for choosing food are grilled chicken breast, fish fillets, steak—in other words plain meat or fish without sauce. Egg dishes are also a possibility, omelette or frittata, check the dishes are onion and garlic free, if they are a problem for you. Choices for the starchy component are plain rice, freshly cooked potato or you could ask for wheat or gluten-free dishes (depending on your intolerance,) but again check for other FODMAPs. Establishments are now better at labelling their menus, or providing separate gluten-free menus, since a recent change in regulations. Or you could try sushi, if you like it but again check any vegetables for FODMAPs. Always remember that it might not be the food you have just eaten that causes symptoms. If you are through the exclusion phase stick to your known low FODMAP foods for the day and possibly the evening before your date depending on your GUT motility (knowing the time it takes food to pass through your digestive system.)

If foods high in fat are a problem for your digestion then ask for the meat grilled or cooked on a griddle which will allow the majority of the fat to drain away. Vegan options are a little more challenging as they often contain foods high in fermentable carbohydrates, but a risotto based on Low FODMAP vegetables or rice stuffed peppers would be an option here, not forgetting to ask about use of onion and garlic in the dish, should you need too.

Wheat free pasta I presume?

Some people find alcohol is a problem, if you want to have alcohol and it does give you symptoms, limit the amount that you have. You could have a glass of wine, for example with your main meal, or ask for a spritzer to make a longer drink. Order a spritzer with your starter and allow it to go a little flat before drinking it, if you suffer from bloating. Using an implement such as a straw or cocktail stirrer to mix your drink will help to disperse the gas it contains, but don’t be tempted to drink from the straw.  You could try a little seduction and gaze into your partners eyes, whilst stirring your drink! Watch the amount of fruit cocktails you have, if you have fructose intolerance—one small glass (100 ml) of pure fruit juice containing low FODMAP fruits is usually the maximum advised. So ensure your cocktail has no more than this amount and drink it with the main dish or sweet.

Check out The IBS Network Self-Care Plan for medications that are helpful.

I would really encourage you to eat out this Valentines Day if you are invited, you may have some symptoms because it can be difficult to avoid all FODMAPs, but the most important factor is that you go out and enjoy the experience. You might find a life partner by going on the date, what more could you wish for? If you don’t have a partner, you could plan to do something special with friends or family for the day.

Most of the advice has been about functional gut problems (IBS) but if you have inflammatory bowel disease IBD, some of the advice posted may be useful but I would strongly advise you to go on-line and check out Crohns & Colitis website (link to the main site is found to the right) as they have some really useful advice on relationships and IBD, or the link for The Ileostomy and Internal Pouch Association for advice.

Check out the living with IBD leaflet here

http://www.nacc.org.uk/content/services/infoSheets.asp

Now for the bah humbug ;-),  this advice also applies to the rest of the year! Valentines Day is very commercialised, expensive and anticipation of events occasionally can prove to be disappointing if you spend lots of money on the day. You could always suggest going out at another time, if you wish and there are other ways of showing your affection than an expensive card and some petrol station bought carnations! If you know what your partner likes, try making your own gifts, some baking perhaps (and I do include you gentlemen readers here too)—invest some time and personalise your gift, this will be really appreciated as it shows your love and understanding.

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Peppermint creams LOFFLEX (Low FODMAP)

Peppermint creams, easy to make and good as an occasional treat for people with food intolerances

Ingredients

270g of icing sugar (extra if mix too runny)

2 teaspoons of peppermint oil

1 teaspoon glycerine

2 tablespoons of water

Method

Add peppermint, glycerine and water to icing sugar and mix till fully amalgamated.

Roll into a sausage shape and cut into equal parts, roll into a ball then flatten with a fork.

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What not to say to people with IBS – a response – #supportallGUTfolks

2014 update

This post was written in 2012 and since this date the offending comment still exists in Health Magazine and unfortunately the comment facility has been closed. If you feel aggrieved at the comment I suggest you write to them – although both Nina’s comment (IBS Impact) and my requests have fallen on deaf ears, so how successful you would be is debatable.

I was reading an article for help for people diagnosed with inflammatory bowel disease (IBD,) in Health Magazine, really good useful tips actually, on how to be empathetic for those people with IBD. However I did start to see red when I read a comment of you should keep your symptoms of IBS to yourself, when empathizing with people who have IBD. Now, I do get angry really quickly when people make the suggestion that IBS is somewhat insignificant – is this because it is a ‘syndrome’ perhaps? I had a rant and a cup of tea (to gather my thoughts,) then I wrote a response to this article. Not an angry response – quite a nice balanced one, explaining that it is not helpful to people with irritable bowel syndrome (IBS) for the magazine to make this comment, with the reasons why. I also requested that they remove this particular comment from the site – to ensure that it was empathetic to all. My response was deleted from the site by the system administrators, this denies my freedom of speech as an advocate for the UK charity for IBS, and my professional ability to support all those people living with difficult GUT symptoms, despite the diagnosis. I was pleased that IBS Impact still have a well-balanced comment on the site, but they have not asked for it to be moderated – perhaps that was the difference. You can see the article here:-

http://www.health.com/health/gallery/0,,20533275,00.html

I am not in any way suggesting that crohns disease or ulcerative colitis, or any other GUT disorder is not significant, quite the contrary, but people should understand that for some people the symptoms of IBS can be very disabling. Neither am I using this article to promote IBS’s cause, I am just advocating promoting tolerance for all. So how do you empathise with someone with IBS? You can start by not saying the following:

IBS is all in your head.

This is not true, symptoms are very real. Is it the age-old view of society that IBS is ‘all in your head’ and therefore your symptoms cannot surely be real. Irritable bowel syndrome is a functional bowel condition, it is a condition where the digestive tract moves in a disordered way, producing symptoms, also the gut is hypersensitive to bloating causing pain. Yes, tests are negative, but most tests do not measure the speed the GUT moves. These symptoms are not a normal condition for the body, therefore it is difficult to understand how this disorder can be ‘imagined’. Now the gut does have a connection with the brain and the way someone is feeling can affect the way the digestive tract moves, but it certainly does not all start and end in their head. Read more about what Dr Bolen says about the brain GUT connection and five reasons why IBS is not all in someone’s head here:-

http://ibs.about.com/od/symptomsofib1/a/braingut.htm

http://ibs.about.com/od/symptomsofib1/a/notstress.htm

Oh – are you one of ‘those’ people that have a self diagnosed (thinking here – made up) food ‘intolerance’?

This is misguided, we are all aware of the popularity of alternative diets for celebrities, this does not help the cause of individuals who may have intolerance to certain foods. This can result in some level of disdain when a person with intolerances asks for a meal or product free from a certain ingredient. Please accept that not everyone has had access to professional help to identify what is causing symptoms and you should trust them, they know their bodies and what they can tolerate. You can ask them to help you to provide a meal or product that will not make them ill, most people respond very favourably to a request for help.

You are so fussy when it comes to food, you just need to get over it and eat your meal.

Comments like these are really suggesting there is nothing wrong with the person with IBS – therefore I don’t believe food affects you at all – so pull yourself together. Do you really want to tell your friend or family member that you don’t believe what real symptoms they have? This statement reinforces negative feelings and can result in mealtime arguments, really unhelpful for all involved, this will not help anyone’s digestion. Feelings do need to be discussed in a useful way, but choose a suitable time to do so and make it a positive experience by listening to each other to start.

You told me you couldn’t eat what? Oh sorry I forgot, I’ve made a vindaloo, its wheat free, will that do? You can have a large glass of milk to help reduce the heat, if you want.

The best way around this is to understand what your friend or relative is sensitive too and then perhaps you can hold some store cupboard items, that can be relied upon in an emergency. It is better to plan so that everyone can eat the same meal, but perhaps you can have an alternative in case of unannounced visits, or if you forget. Basic examples would be eggs (omelettes, poached) plain chicken or fish, boiled rice, fresh boiled warm potato, frozen carrots, salad leaves and you could also put a loaf of sliced wheat free bread in the freezer.

What do you mean you can’t come out?

Some people with IBS do not want to travel without preplanned toilet facilities and they may not wish to discuss their personal symptoms with you. Please try not to be offended. What is useful to say is that you are sorry that the person cannot come on the trip, and if you are a real friend you can offer help, if it is wanted – no questions asked, please! Wait for the person to discuss their symptoms, they will, if they feel happy and comfortable to do so. If they ask for help then the IBS Network makes a can’t wait card for trips out, it can be used in shops and stores. You could plan the trip together or wait to go till the persons symptoms are a little better controlled before you go. Arranging to visit the person in their own home is always an option, to make them feel less excluded, if the trip cannot be cancelled.

HA,HA,HA, lol,  those are Dave’s symptoms????? Really?? OMG! Just wait till I tell……..

If this person you are talking about is a friend or work colleague or even an acquaintance, then imagine how you would feel if someone were to say those things about you. Your ‘friend’ does not deserve this sort of treatment, behaviour like this causes stress and could be viewed as very hurtful – please think before you speak. Les Floyd who writes a cool blog wrote a blog about Socrates and the triple filter test, ask yourself these questions before you speak – 1. Have you made sure what you are going to tell is true? 2. Is what you are going to tell something good? 3. Is what you are going to tell something useful? If what you are going to say does not fulfil the truth, goodness or usefulness filter then simply don’t open your mouth – end of. The blog, which is really worth reading can be found here

http://lesism.blogspot.co.uk/2012_05_01_archive.html

We don’t have a special fussy eaters menu.

Remember the fact that the customer is king, the best retort you can give is to say that you may not have a good understanding of the persons requirements BUT YOU ARE WILLING TO LEARN (this is the most important part.) “What can we get for you to eat?” Then listen carefully and try to avoid contamination of their food – prepare it separately. This will make the person comfortable in what you are going to provide, it will also keep you a customer – and never forget, people with food intolerances always eat with others. If the person has had a good visit they are more likely to return and spread the good word with friends and family. Web sites that can help are

http://www.coeliac.org.uk/food-industry/caterers-and-restaurateurs

http://allergytraining.food.gov.uk/

(for ‘allergy’ also read intolerance, plenty of information about how to cater for food intolerances on the site.)

Everybody gets tired.

Tiredness is a symptom of IBS, it is not known what the cause is, but it is a symptom. Yes everyone does get tired at times but some people with IBS can have the added complication of tiredness to cope with as well as the hustle and bustle of life. The person with IBS will have some idea of how much they can cope with, please be empathetic and listen.

Some of the comments or questions discussed here are a little bit exaggerated, but I am sure that everyone has had similar comments made to them at some point. I was also a little disappointed with some of the comments on the Health Magazine site – but each to their own I suppose, all I ask is please be sensitive when speaking to someone with IBS. You know what, though? Some of the answers will also help others with GUT symptoms to eat well, so people with GUT conditions really do have very similar experiences and should be able to support each other.

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LOFFLEX recipes Third Edition

Ground rice pudding Annette Sharp RD

50g Ground rice

25g Sugar

600ml rice milk (plain or vanilla – try to get one with added calcium)

1 tsp vanilla extract (optional)

Flavouring tinned pears, pineapple juice honey/cinnamon/cardamom to taste

Method

Place ground rice, sugar and milk in a small non stick saucepan and whisk until smooth. Gently bring to the boil, stirring whilst cooking – the mixture should quickly thicken into a custard consistency.Continue to simmer over a very low heat for 5-6 minutes, stirring occasionally. Transfer to a bowl, cover and leave to cool of can be eaten whilst warm. Can blend cold pudding to achieve a very smooth consistency.

Rice Flour Pancakes

1/2 cup of rice flour

300mls of milk

2 tbsp caster sugar

oil for frying

Whisk ingredients together and fry small pancakes (approx 2 inch in diameter) in a small amount of oil until dark golden, serve with jam made from allowed fruit or honey.  Alternatively omit the sugar and add herbs and serve with meat or fish from allowed list.

Chicken Noodle Stir Fry My Le Lac RD

100g Chicken Breast

50g Courgette (skinned and sliced thinly)

50g Mushrooms (chopped)

Dried Rice Noodles

1 tbsp Vinegar

1 tsp sunflower oil/olive oil

Salt to taste

NB this counts as one portion of vegetables

Bring a pan of water to boil, place noodles in the pan

Cook the noodles till softened, drain and rinse in cold water to prevent them sticking together

In a non stick pan heat the oil, add the chicken

When the chicken has browned add the courgettes and mushrooms

When the vegetables have cooked add the noodles and stir fry, them add the vinegar, salt to taste and serve.

Moroccan Lamb Tangine Layla Brown RD

Serves 4

2 tsp black pepper

11/2 tsp paprika

11/2 tsp ground ginger

1 tbsp turmeric

2 tsp ground cinnamon

1x shoulder of lamb, trimmed and cut into 5cm/2 inch chunks

2 large carrots, peeled and grated

2 tbsp of garlic infused oil

3 peppers

115g canned apricots

55g stewed plums

1 tsp powdered saffron

brown rice miso

1 tbsp clear honey

2 tbsp coriander

2 tbsp flat leaf parsley

Place the black pepper, paprika, ginger, turmeric and cinnamon into a small bowl and mix to combine. Place the lamb in a large bowl and toss together with the spice mix. Cover and leave overnight in the fridge.

Preheat the oven to 150C/300F/gas 2

Cut the remaining food into small pieces/chunks and place in a slow cook oven or casserole dish along with the other ingredients and brown rice miso, water and cook for approx 21/2 hours till meat is very tender.

Place in a serving dish with fresh herbs.

Serve with boiled rice.

Please note: Everyone’s dietary tolerance of foods, with crohns disease, is individual. If you suspect you have problems with these ingredients please check with your dietitian if the ingredient is OK for you, before trying the recipe. The recipes are designed for stage 1 of the LOFFLEX diet, but occasionally people can have reactions to foods in stage 1, so it is very important to keep in touch with your dietitian, when following the treatment.

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