Tag: invisible illness

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Inflammatory Bowel Disease: The invisible illness

Inflammatory-Bowel-Disease-The-Invisible-Illness

What is inflammatory bowel disease?

Inflammatory bowel disease (IBD) is an umbrella term for diseases which cause either whole or part of the digestive tract to become sore and inflamed. It commonly starts in younger people aged 10 to 40, although younger and older people may be affected too. The two most common types of IBD are Crohn’s disease (CD) and ulcerative colitis (UC); the symptoms for both can be similar but with some distinguishing characteristics. In the 19th and 20th Centuries prevalence of IBD increased with industrialisation and the highest rates in the world are still in developed countries such as the UK, Canada, the USA and Western Europe – although cases are now increasing in China and India.
Crohn’s disease may affect the whole digestive tract from your mouth to your anus; ulcerative colitis affects only the colon. Crohn’s disease can be more serious as it not only affects the lining of the gut but can also extend deeper into the wall of the bowel and this sometimes results in severe complications. Both can be extremely painful and debilitating, leading to weight loss and fatigue, and have a great impact on your quality of life, affecting your ability to digest food and absorb nutrients from it, as well as the frequent trips to the toilet.

Why is IBD increasing?

Studies in the UK have found that the number of children affected by IBD has risen by 15%; in Scotland the number of childhood cases has risen by 76% since 1995, according to research by the University of Edinburgh. Experts are also worried because the average age of onset of symptoms is now much earlier in childhood rather than late teens/early 20s because, as I said before, the symptoms are more severe in childhood.
Although scientists have identified a genetic basis for IBD by pinpointing many different genes, especially the variants in a gene called NOD2 in Crohn’s disease – and a positive family history remains the strongest risk factor for IBD4 – genes are clearly not the whole story. Experts refer to IBD ‘as a complex genetic disorder that is influenced by environmental risk factors’. Certain genes may give you a susceptibility to IBD, but the prevailing theory is that IBD is caused by a combination of genes and exposure to environmental risk factors. It’s the interaction between these environmental risk factors and your normal (nonharmful) gut flora that is believed to lead to an increased immune response which results in chronic inflammation.

What are the symptoms of Crohn’s disease compared to ulcerative colitis?

The short answer is that many of the symptoms overlap (around 10% of IBD sufferers have a mixture of both and this is called indeterminate colitis). There are some key distinguishing characteristics your doctors will be able to tease out – see the table below.

Ulcerative colitis (just affects the colon) Crohn’s disease (can affect the whole gut)
Bloody diarrhoea and colicky abdominal pain, usually before passing a stool Abdominal pain and diarrhoea (sometimes with blood, pus or mucus). Pain is caused when food or faeces build up after eating in an area of the intestine damaged/ narrowed by inflammation
Some of or the whole colon is inflamed/ ulcerated, but other parts of the gut are usually unaffected Patches of the gut are inflamed and ulcers may develop but there are sections that are unaffected. It mainly affects the terminal ileum (the last part of the small intestine). Sometimes Crohn’s only affects the colon
Only affects the lining of the gut Inflammation may be confined to the bowel wall but can sometimes cause deep ulcers which also penetrate deeper through the muscle layers of the bowel wall causing fistulas (an abnormal connection between one area of the body and another). Often these are around the anus. Other complications include scarring and narrowing of the intestines, sometimes leading to blockages
Inflammation is usually continuous from the rectum Inflammation often skips segments of bowel which appear normal
 
Weight loss from inflammation

Weight loss from inflammation and reduced absorption
Tiredness and fatigue (anaemia is common) Tiredness and severe fatigue (anaemia and other deficiencies occur)
Feeling feverish Sometimes fever and night sweats can be caused by abscesses or collections of inflammation
Inflammation can involve the joints, skin, liver and eyes and cause mouth ulcers Inflammatory symptoms are similar to those of UC and may spread to other parts of the body causing mouth ulcers, red eyes, painful joints and rashes

Sources: Core charity and Crohn’s & Colitis UK

More about Crohn’s disease

Crohn’s disease affects around one in 1,000 people and in about one in five cases if you have Crohn’s disease you will have a family member who is also affected.

As discussed in the table above, Crohn’s disease may affect any part of the gut but most commonly causes inflammation in one particular area called the terminal ileum – this is the last section of the small intestine. The first part of the colon, called the caecum and the next, the ascending colon, are often involved. In many people only the colon is affected. Inflammation sometimes skips a segment of gut which is normal, rather than being continuous. Only a few people with Crohn’s will have involvement of the stomach or the upper intestine.
Mild forms of Crohn’s result in patches of inflammation – these look similar to mouth ulcers. In moderate to severe cases the intestine is damaged, and becomes thickened so it blocks the passage of digested food, causing cramp-like pain. Deep ulcers can also penetrate the bowel wall causing infection or even an abscess; this often happens around the anus. It is called a fistula when an inflammatory connection goes through the skin surface, the vagina, the bladder or another part of the bowel. When inflamed tissue heals, scar tissue may form, posing a further risk of blockages in the bowel.

More about ulcerative colitis

Ulcerative colitis is the medical name for when tiny ulcers form on the surface of the lining of the large intestine. It mainly affects the rectum and lower colon, but may affect the whole of the colon. It’s more common than Crohn’s disease, affecting an estimated one in 420 people. It seems to be more common in white people of European descent, particularly among Ashkenazi Jews who originated from Eastern Europe and Russia. It affects non-smokers and ex-smokers more than smokers, although doctors say the risks of smoking still far outweigh the possible benefits so do not take this as a licence to smoke! Men and women are affected by UC in equal numbers.

There are three types of ulcerative colitis:

  • Proctitis. This is where only the rectum is inflamed. Fresh blood in the stools is the main symptom, plus an urgent need for the loo (‘urgency’) and perhaps a feeling that you have not completely emptied your bowels. You may have normal stools, diarrhoea or constipation.
  • Left sided. This is inflammation that starts at the rectum and continues up the left side of the large intestine (the sigmoid and descending colon). Symptoms include passing diarrhoea with blood and pain on the left side of the abdomen, plus an urge to pass a stool even when your bowel is empty.
  • Total colitis. This is sometimes called pan colitis and is when the entire colon is affected to some extent. It causes very frequent bouts of diarrhoea, severe painful stomach cramps, weight loss and often fever and generalised illness.

This extract was taken from What’s Up with your Gut? By Jo Waters and Professor Julian Waters

 

 

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How to cope with IBD at work

How to cope with IBD at work

Sometimes it seems that living with IBD is a full-time job (albeit one with zero pay or benefits!). Time spent at the hospital, recovering from flares and trying to live a healthy life can all add up. Unfortunately, most of us are not millionaires and work is a necessity, and for lots of us a fulfilling part of our lives. Working with IBD isn’t always easy but for the vast majority of us it is possible. However, you may need to talk to your employer and have adaptions made.

 

Be honest

It is very important that you are honest with your employer about your condition and what it involves. IBD, like any chronic illness, is covered under the 2010 Equality Act since it is a physical and long-term impairment (definition of disability under the Equality Act 2010, 2015). This means employers must make necessary adaptions to help you in your role. This could include flexible working hours, access to a disabled toilet or a fridge to store your medicine in. Most employers are accommodating if you talk to them and explain what your condition actually entails (and if this is disclosed at interview, employers cannot discriminate against you in the recruitment process).

 

Be realistic

Many people with inflammatory bowel disease have really high expectations of themselves, which is also reflected in their careers. However, it is important to reflect on your career path and whether it is adaptable to life with IBD. Does it involve lots of travel? Is it stressful? Are you often on the go? Having IBD doesn’t mean giving up on your career dreams but just making sure the job is right for you.

 

Be informed

Reading the paperwork and the terms and conditions that comes with a job is more important than ever with IBD. Here are some things you need to find out:

  • What is the sick pay entitlement?
  • What is the policy for long-term periods of sickness?
  • How flexible are the working hours?
  • If you are working abroad, is medical insurance included and does this include pre-existing conditions?
  • Will you get regular breaks? (This can be easy for office workers; not so easy for those in retail.)
  • Is there the possibility of reduced hours or going part-time further down the line?

Keep records

It may be worth having a notebook to keep a list of any time you have had to take off work for IBD and the corresponding symptoms and hospital trips.

 

My experience of working with IBD

I am a teacher by trade and have taught both in the UK and abroad. In every job, I’ve been honest about my conditions from day one and luckily all my employers have been great. When I was on infliximab, my employers were great at giving me time off to go to hospital appointments and in my previous role I had surgery and the school arranged for me to come back on a phased return. It can be really hard teaching with IBD – I have had days where I felt like I wanted to faint in front of a class – but luckily most of the time I’m fine. In some ways doing a demanding job means I often forget about my symptoms, but I have had to dash out of class on a few occasions. I think this is why talking with colleagues about your condition is so important – it has meant they have been able to quickly step in if needed. Yet over the years, I think I’ve also become more realistic about my teaching career and this year I’ve reduced my workload to three days a week, aiming to spend more time on my health and my writing. I don’t see this as a step down but a necessary adaption to help me live as balanced a life as possible; hopefully I can combine the security of a teaching job with my other passions in life – writing and nutrition.

This blog is taken from Managing IBD: A balanced guide to inflammatory bowel disease by Jenna Farmer.

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CFS/ME: Are you sleeping too much?

CFS/ME: Are you sleeping too much

Difficulty with sleep is common for people with CFS/ME. Some people find they are sleeping too much, while others find they are not sleeping enough. If you experience problems with sleep there are several things you can do to help yourself.

There is no such thing as an ideal amount of sleep. For example, some people need 10 hours, while others only need five. An average night’s sleep is around eight hours. When the amount of sleep someone is getting is causing an increase in fatigue that is when it becomes a problem.

When people first have CFS/ME they often over sleep. People who have had CFS/ME for a longer period of time often go from over sleeping to not being able to sleep enough, despite high fatigue levels. Continue reading CFS/ME: Are you sleeping too much?

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Taking charge of anxiety with an invisible illness

Mental health and coping with anxiety affects everyone, and if you are suffering from an invisible illness it can be even more difficult. It’s #mentalhealthweek so here are some tools for looking after your emotional and mental health when dealing with chronic illness, whether it be IBD, IBS, CFS, ME or other fatigue/auto-immune conditions.

How can we deal with anxiety and invisible illness?

Since many patients feel stress can trigger their symptoms, it is vital to try to get a handle on anxiety. It has been suggested that support for this should be part of Inflammatory Bowel Disease (IBD) patients’ care plans, yet currently only 12 per cent of IBD clinics offer this. Therefore, it is clearly an area where more medical services need to be directed. As I discussed in Chapter 1, initial consultations after being diagnosed can lead to the patient being overwhelmed with information and having a variety of leaflets thrust into their hands about the disease they can only take in later. But where’s the leaflet that tells us how to cope with the associated emotions? The leaflet that gives us ways of not breaking down, and staying strong? The leaflet that offers support groups and websites?

Hopefully the studies I have cited have highlighted the growing link between mental health and IBD. Of course, if you feel you are struggling with anxiety and depression it is vital you speak to your GP urgently. If you have done this and are looking for some self-help suggestions to deal with times of worry and help manage your anxiety, then the guidance below from Sally Baker – a therapist who works specifically with the mind-body connection – may be beneficial. (It is important to be aware at the same time that these tips offer general guidance which cannot replace the individual advice of a medical professional and if you are feeling any new symptoms of anxiety and depression, then it is very important to see your GP.)

Advice from Sally

When Sally works with clients living with chronic ill-health she recognises how having little or no confidence in how one will physically feel from day to day encourages self-doubt and frustration. As you are probably aware, feeling negative about yourself can create a vicious circle of frustration, disappointment and anger. One of the first therapeutic approaches she suggests to break this cycle of negative self-thinking is to encourage patients to gain an enhanced level of self-awareness to highlight the impact those uncomfortable emotions have on them.

She has found one of the most beneficial ways of discovering if a person is prone to negative thoughts about themselves is to explore the kind of things their inner voice says to them. If on reading this your response is, ‘What inner voice? – I don’t have one!’ then that is your inner voice.

Your inner voice runs an almost continuous internal dialogue commenting on everything you do and often makes judgements on how well you do it too. Happening as it does just below conscious awareness, one’s inner voice goes unchecked, and unchallenged, for most of the time.

For many people, especially those living with chronic illness, their inner voice is rarely a source of uplifting encouragement. It is more likely to give an unremitting flow of self-criticism, and negative self-judgements (everything from ‘I hate my body’ to ‘What am I doing wrong?’). Taking the time to become aware of how your inner voice speaks to you can accurately demonstrate to you your own level of self-judgement and self-condemnation. Tuning in, and clearly hearing your inner voice, is the crucial first step to silencing the draining and dispiriting stream of negativity that can hinder moving forward and making positive changes. Sally suggests spending a little quiet time – just a few moments – every day for about a week tuning in to your inner voice, and simply listening and noting down the negative statements. A therapy tool she then uses to resolve those negative, limiting beliefs is called Emotional Freedom Technique (EFT or ‘Tapping’). EFT is an energy therapy that has proved highly effective for revealing true feelings, in this case prompted by one’s negative self-talk.

Once you have a greater awareness of your own negative self-talk you can then apply another of her core therapy tools – called Percussive Suggestion Technique (PSTEC) – to turn-down, or dispel, the emotions attached to the negative beliefs you have about yourself. Turning off negative self-talk is the beginning of a powerful journey which can transform a former inner-critic into your greatest advocate – someone cheering for you instead of undermining you.

This blog is taken from Managing IBD: A balanced guide to inflammatory bowel disease by Jenna Farmer, available as ebook and paperback. For more from Jenna you can follow her blog A Balanced Belly, and for more emotional therapy techniques from Sally Baker check out her book Seven Simple Steps to Stop Emotional Eating.

If you found these tools helpful help us raise awareness of mental health by sharing for #mentalhealthweek

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Invisible Illness: recognising the symptoms of Pernicious Anaemia

Invisible Illness: recognising the symptoms of Pernicious Anaemia

Pernicious Anaemia (PA) is an invisible illness caused by deficiency in vitamin B12 owing to problems absorbing it from food.

Everyone is different and sufferers of pernicious anaemia will experience the symptoms of the condition to varying degrees. Some patients will have all of the symptoms listed below while others will recognise only a few. This list has been compiled over a number of years and shows what a wide range of symptoms there can be. There are two problems with this wide range. First, many of the symptoms listed below are associated with other medical conditions, which often leads to confusion with other invisible illness and misdiagnosis. Secondly, because there are so many symptoms associated with pernicious anaemia, it makes it difficult for doctors to identify the symptoms specific to the disease – thus making an early diagnosis even less certain.

Common general symptoms of Pernicious Anaemia

  • Shortness of breath – ‘the sighs’
  • Extreme fatigue
  • Brain fog
  • Poor concentration
  • Short-term memory loss
  • Confusion (‘handbag in the fridge syndrome’)
  • Nominal aphasia (forgetting the names of objects)
  • Unaccountable and sudden bouts of diarrhoea, often following a spell of constipation
  • Clumsiness/lack of coordination
  • Brittle, flaky nails; dry skin anywhere on body
  • Mood swings, ‘tear jags’, heightened emotions
  • Sleep disturbance
  • Even though patient is exhausted, is unable to sleep
  • Waking up still tired, even after many hours’ sleep

Neurological symptoms of Pernicious Anaemia

  • Balance problems
  • Dizzy/faint
  • ‘Shoulder bumps’ – frequently bumping into or falling against walls
  • General unsteadiness, especially when showering and dressing
  • Inability to stand up with eyes closed or in the dark
  • Vertigo – inability to cope with heights, linked to the need for a visual reference as compensation for damage to the brain’s balance mechanism
  • Numbness/tingling – especially in hands, arms, legs, feet
  • Burning sensation in legs and feet – Grierson-Gopalan syndrome
  • Tinnitus – ringing/screeching/howling in the ear or ear
  • Neuropathic pain/fibromyalgia – often on only one side of the body
  • Irritability/frustration/impatience; desire for isolation, quiet and peace; aversion to bright lights and crowded spaces

Skin problems associated with Pernicious Anaemia

  • Hair loss – can range from moderate to sever; premature greying of hair
  • Psoriasis/eczema/acne
  • Rosacea – reddening of the skin around the nose and cheeks
  • Vitiligo – white patches that develop on the skin

Other medical problems associated with Pernicious Anaemia

  • Poor digestion
  • Arrhythmia – irregular, fast or slow heartbeat

Autoimmune conditions associated with Pernicious Anaemia

  • Rheumatoid arthritis
  • Hypo- or hyper-thyroidism – almost exclusively among females
  • Coeliac disease – sensitivity to wheat and/or wheat products
  • Myasthenia gravis – weak muscles leading to problems swallowing, chewing and opening eye(s)
  • Psoriatic arthritis

Vitamin B12 deficiency can be detected with a blood test, and if this deficiency is then determined not to be caused by diet it may be a clue that Pernicious Anaemia is the underlying invisible illness.

To learn more about Pernicious Anaemia diagnosis and treatment read What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper, founder of The Pernicious Anaemia Society.

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IBS: a guide for family, friends and colleagues

Although IBS is invisible, it is a very real illness and it can be hard to know how to support people we care about when we can’t necessarily see the physical symptoms of what they are going through. Dr Megan Arroll and Professor Christine Dancey have combined their extensive knowledge to provide a helpful guide for supporting friends and family members with IBS.

There are many conditions where people look fine, even very well, but they are in fact in a great deal of discomfort and pain. It can be hard when you are suffering from the symptoms but look fine on the outside. Try to remember when you last had a headache. You probably looked fine on the outside, despite being in pain. Now imagine feeling like this constantly.

Not only does suffering an invisible illness make you feel physically awful, but people with IBS often face a lack of support from those close to them. Work and social situations can also be challenging; without outward signs of ill-health, someone with IBS can feel very isolated. People with IBS often find it very hard to acknowledge their condition and to discuss it with others due to the embarrassing nature of the symptoms.

Additionally, IBS can attract stigma as it is a complex condition and there are no scans, investigations, or blood tests which can show that a person has IBS. It is a multi-faceted condition and we are only just learning about the physiological processes underlying it.

So, someone with IBS may appear perfectly fine – in fact, almost anyone will say ‘good’ or ‘well’ if you ask them how they are – this does not mean that IBS is not a debilitating and intrusive illness. All it means is that your friend, sibling or workmate who has IBS is trying to put their brave face on.

What you can do to help a friend or family member with IBS

You don’t need to know everything about IBS; just by accepting what your friend says about what he or she is feeling is a great help and support. IBS can take a long time to diagnose and is often misdiagnosed. Both the struggle for a diagnosis and the feeling of frustration engendered by being misdiagnosed can be difficult, and this is on top of feeling unwell. While it can be tricky for friends and family members to offer the right help and support to someone with IBS, here are a few simple rules to help make living with IBS a little less irritable.

Never question the existence of IBS, even if your friend looks and seems well.

Be patient with the process of diagnosis and finding an effective treatment – it can take time.

Try not to be over protective or treat the person with IBS as if they are fragile.

Try to limit giving advice, even if well-intentioned.

Be willing to find IBS-friendly activities which are of interest to both of you.

Understand that plans may be cancelled at short notice.

Offer practical support, such as help with the children, shopping, housework, gardening, etc.

If IBS is affecting your sexual relationship or damaging your relationship overall, seek external and professional support.

Overall, simply being there and accepting that the person with IBS is trying their best to overcome this misunderstood condition will be an invaluable support. IBS is an embarrassing and stigmatised illness that can challenge someone’s relationship with their body. Support, whether emotional or practical, can limit the likelihood of depression and isolation, factors which we know are detrimental to us all.

For more detailed guidance on how best to support someone who is suffering from IBS buy your copy of Irritable Bowel Syndrome: Navigating Your Way to Recovery and follow Dr Arroll on twitter.