Guest Writer - Jon

Honesty in IBD

My name is Jonathan Clarke and I have Ulcerative Colitis. Those are probably two of the most important things to know about who I am. Another important thing about me is that I have recently published a book about my experience with UC; but I'll come back to that. I've had to come an awfully long way to get the stage of writing about this illness.

Yup, that's me!

I was first diagnosed in 2010 while I was on my Gap Year. I had no inkling of the ramifications Colitis would have on my life at the time, and I had no clue about just how unwell this disease can make you. All I cared about really was that I was having regular, bloody diarrhoea, and I wanted it to stop.

If you had told me at the time that three years later I would be writing a blog about the disease, and wanting as many people as possible to read about it as possible, then I'd have thought you were on too many meds! I was embarrassed to the extent of mortified at the prospect of going to Uni and having to cope in secret with such an intrusive disease. I'd had a bad enough time breaching the subject with my parents.

Fast forward six months or so and I had already dropped out of Uni and was housebound. I had been forced to leave my new friends and girlfriend at the other end of the country and, the way I was then, it seemed like there was no end in sight. I was lonely, I was depressed, and I made it all worse by accepting these (all too common) traits of IBD. I would talk to my girlfriend on the phone about my trials and tribulations at home and it was she who finally suggested I write down all the things I was venting onto her. That night I opened my laptop and just started typing and I didn't stop for several hours and many thousands of words. I had composed a substantial diary of my time with UC including many anecdotes of my experience.

For much of that year Colitis dominated my life and I realised that I was going to have to get used to it. There was nothing to be gained from brooding or asking "why me?" and so I did what I should have done a year before, and opened up. I sent what I had written to my friends and family, most of whom I had avoided speaking to; simply because I had nothing nice to speak to them about. It was only once I started getting the responses that I realised what a disservice I had done to myself and those around me by choosing to be isolated.

This disease, as most people here will know, is hugely misunderstood. It's more than just a "bathroom illness" it is a systemic problem, and it was only by being honest with everyone that they could really appreciate that. And it's not just a physical disease, it's a psychological one too. The two sides of IBD are intrinsically linked however, and helping one side of the coin will translate to the other. I found it so frustrating that my consultants never asked me how I was coping mentally. It was only when I said that "today's been bad because I've had to leave the house" that any doctor treated me as patient, rather than a puzzle.

Colitis used to be something I would avoid talking about at all costs, but now I am frequently asked about, I am writing about it, and even joke about it. As I said at the start it's become part of who I am, not just a negative extension. My life improved drastically after doing something as simple as talking. My anxiety improved, my embarrassment was non-existent, and in fact I became as happy as I've ever been in my life.

Since then I have promoting my book to the wider public; and I have been shocked at just how frequent IBD is. You can read all the statistics you want, but until you start meeting fellow sufferers it doesn't mean anything real. I was amazed at how often upon hearing about my illness the response would be: "ah my Mum has that" or "my friend's been unwell too" and even "Me too!". The funny thing about the last one is how excited people are about meeting fellow sufferers. More often than not the reason is because they don't have to shy away from the gory details, they don't have to play down the extent of a flare up because they know I can relate and I know that what you see is not what you get with IBD. But from what I've learnt they shouldn't have to shy away from this with anyone.

It hasn't just been IBD sufferers who are keen to talk to me about my symptoms either. I regularly find people who have overlapping issues like bloody diarrhoea and who have not been diagnosed. Of course I urge these people to speak to their GP. If you can live with something it's all too easy to just accept it or even ignore it. Especially if the problem is an embarrassing one. But you will always find than being honest is never as daunting as you may think. They say that a problem shared is a problem halved; and they are right. When I got ill I thought that a problem shared is a problem spread; and of course I was wrong.

When I first wrote my book it was with the intention of spreading awareness through those 

closest to me. But the reason I continued writing (apart from the cathartic aspect) was because I had found out first-hand how important it is to spread awareness on a wider scale. I don't know if there are any more misunderstood or underestimated diseases out there, but there can't be many! Unless you live with it you will never fully understand, but reading about someone's personal experience is the next best thing.

The more honest you can be with those around you, the more comfortable your life will become; and that's a big factor in being healthy. And people will appreciate your honesty. 

There's no second guessing or wondering: they know.

If you want to find out what my experience was like then please visit this website: www.shituation.net where you can find out about me and my book and even order a copy for yourself or for a friend!

If you want to know more or have anything to ask at all then tweet me @Sh_thappensJC or find my own blog at jonclarke14.wordpress.com. And remember: talking helps. It may not stop you shitting; but it helps. 

How Can I Reduce Excess Gas? And Get Rid of Smells?

Unfortunately, there is no simple solution - what works for one person may not work for another. However, some people have found the following ideas helpful:

Think about the way you eat 

• Create a relaxed environment when eating, as nervous tension at meal times can affect digestion.
• Eat small, regular meals (perhaps 5-6 a day), as an empty bowel produces more wind and rumbles. 
• Some people find that eating a large meal late at night makes them feel uncomfortable. If you find this is the  case, you could try eating your main meal earlier in the day.
• Eat slowly with your mouth closed to avoid gulping down air with your food, and make sure you chew each mouthful thoroughly.

Avoid foods that may affect you
Some foods, such as baked beans, onions, cabbage, pulses, and whole grains are well known to be ‘gassy’, although what produces a lot of wind for one person may not for another. You could also try avoiding:

• High fat foods and eggs – these can produce bad smelling gas.
• Refined and sugary foods, especially those containing sorbitol – an artificial sweetener. 
• Hot spicy food, particularly if you are not used to it.

You may know that you have an intolerance or are sensitive to certain foods or ingredients. If you are having a problem identifying which foods are causing bloating and wind, it can be helpful to keep a food diary for a week or two. Note down everything you eat and drink and how it makes you feel. It may be worth experimenting by cutting out certain foods for a short period (4-6 weeks) to see this if this helps.

Remember how important it is to maintain a good balanced diet however, and that cutting out a number of foods can mean missing out on valuable nutrients. Talk to your IBD team if you want to try a longer term or more extensive exclusion diet. Consulting your doctor is also a good idea if you suspect you may be lactose intolerant. There are several types and levels of intolerance, and correct diagnosis is essential to identify the right solution.

Some people with IBS have found that eating a low FODMAP diet helps reduce bloating and wind. FODMAP is an abbreviation for a group of food molecules known as fermentable carbohydrates which are found in foods such as fruit, wheat and dairy products and are difficult to digest properly. The undigested molecules pass into the colon and then can act as a food source for bacteria. As the bacteria digest the FODMAPs they can cause symptoms such as bloating and wind. Cutting down food containing FODMAPs is thought to relieve these symptoms, and many people with Irritable Bowel Syndrome (IBS) have found low FODMAP diets especially useful. Research has suggested that people with inactive IBD may also have IBS or IBS-like symptoms, and that a low FODMAP diet may be beneficial for some of these people.

For more information on how food affects IBD and suggestions for healthy eating with UC and Crohn’s, see our booklet Food and IBD
.

Drinking

• Drink plenty of water, ideally 1.2 litres a day (about 6 glasses).
• Avoid caffeine in coffee, tea and cola. You could try decaffeinated tea, peppermint tea, green tea, or herbal and fruit teas instead. 
• Avoid fizzy carbonated drinks because these contain gas. 
• Alcoholic drinks can also increase the amount of gas produced.
• Avoid drinking from a straw as this can make you swallow air.

Other tips

• Try to avoid stress, which can make you gulp air. When you are tense, practise slow breathing.
• Avoid sitting for long periods. If sitting at work, take regular breaks (at least every hour) to stretch the legs and abdomen.
• Try to take regular exercise to help improve digestive transit, for example, it may help to go for a short walk after eating in order to move gas around.
• Gently, but firmly, massage the abdomen from right to left to release trapped wind.
• Practise anal sphincter exercises to help improve control of wind.

How can I get rid of smells?

We are often a lot more sensitive to our own smells than other people are. However, if you are concerned about odours, you might find some of the following ideas helpful:

• Try to ensure that the room you are in is well ventilated.
• Light a scented candle, an aromatherapy oil burner (try lavender or lemon oil) or incense stick.
• Try striking a match, then blow it out immediately and allow the small plume of smoke to drift into the room.
• Some people find that aerosol air fresheners can help mask smells. Try a solid block freshener that works all the time, or a freshener that releases a fragrance at regular intervals. 
• Use neutralising sprays or gels that help eliminate rather than mask odours, such as Neutradol Spray or Gel (available from chemists and supermarkets), Auricare Odour Eliminator, or Fresh Drop Smell Stop (available online).
• Wear underwear or pads that absorb gas or you could use a seat cushion that filters gas. All these products are available online

What else may relieve symptoms?
Some people have found herbal remedies helpful in reducing wind. You should tell your doctor if you are taking any herbal remedies. The following suggestions have not been scientifically proven to relieve  symptoms, but may be worth trying.

• Aloe Vera gels
• Charcoal tablets
• Cranberry juice
• Fresh parsley
• Herbal infusions, such as camomile, fennel or peppermint
• Peppermint oil

Some people find that simethicone helps with bloating and wind. Simethicone is an anti-foaming agent, which disperses tiny bubbles of trapped wind. It can be brought over the counter in products such as WindEze tablets and WindSetlers.


Research is continuing into the role of the bacteria in the colon, particularly those bacteria that may be ‘friendly’ or beneficial. Probiotics are a mixture of live ‘friendly’ (beneficial) bacteria taken by mouth. They can be found in some specially fermented yogurt drinks or in tablet form. Some people with Irritable Bowel Syndrome have found that some probiotics are helpful in reducing flatulence and wind. Although further research is needed, it is possible that they may also help some people with IBD.