Hospital Appointment

My third and final post for today. It’s been a long and eventful day. The first thing to happen was my appointment with the gastro-enterologist at the hospital, following my recent colonoscopy when I was diagnosed with ulcerative colitis.

He discussed the results of the test with me, and some nice pictures of the inside of my bowel were on his laptop as we spoke – I think he thought he’d got a right weirdo when I said I wanted to use them for inspiration for art!!! I could create a great pink and orange texture from that… He gave me a really funny look (I’m not surprised!) and I expect he sat down for lunch with his colleagues and said, “You’ll never guess what one of my patients said today…” ROFL! Got to give them something to tell the grandchildren, haven’t you.

Anyway, he told me (as I was already aware from what was said during the procedure) that the inflammation goes right round the bowel, but it isn’t as bad as some, so he’s starting me off on the “bottom rung” of the treatment options, with a low dose of a drug called mesalazine, which acts as an immune response inhibitor. Since UC is an auto-immune disease, this causes the body’s action against itself to be less severe. The drawback is, of course, that it leaves one more vulnerable to infection. Given that I had cystitis last week, this sort of thing is now more likely to recur, so I am going to continue with my daily glass of cranberry juice to protect the lining of my bladder. There is a whole list of potential side effects from this drug (all of them highly unpleasant) but not everybody suffers from all, or even some, of them, so I may be OK. I have to be aware of them, and inform the doctor if they become severe. One of the most serious is the small possibility of kidney damage, and I will be monitored for this by a yearly blood test.

The medication comes in a form I have never come across before – small sachets containing granules which you have to pour onto your tongue and then drink down with water. Why they can’t be contained in a capsule is beyond me… It’s a curious, but not particularly unpleasant, sensation to take them, and they don’t taste of anything, but they do leave a curious aftertaste for a minute or two. The sachets look like those free sugars you get in restaurants.

UC increases one’s risk of contracting bowel cancer, particularly if, as in my case, the inflammation involves the whole bowel. The mesalazine also causes an increased risk, because along with reducing the body’s immune response, it also reduces the body’s natural protection against cancer. I shall therefore be monitored by regular colonoscopies every two years, and will be taken out of the bowel cancer screening programme which will now be redundant for me as I’ll be examined for it anyway.

The consultant told me that I need to be realistic about outcomes. This is a permanent, chronic condition for which there is at present no cure. The treatment is a management stratagem which will help relieve the symptoms of frequent diarrhoea and cramping, but I cannot expect to end up with normal bowel function. With the reduction of chronic inflammation in my body, I should start to feel better, as this can cause an ongoing feeling of malaise. I feel this with the M.E. anyway, so it will be interesting to see if I do feel better as a result of the treatment.

Apparently there is no evidence that any particular foods affect the condition in any way, either positively or negatively. He said that some people get involved with all sorts of complicated exclusion diets, but his advice was simply to enjoy life, to which I readily agreed! A positive attitude helps with everything life throws at one, I find.

After examining my abdomen, he gave me a website to visit, of the National Association for Colitis and Crohn’s Disease (NACC) which also includes a forum which I may decide to join. There may be some helpful advice out there from fellow-sufferers, although I have been managing it more or less OK for several years without knowing what it was.

He told me I was part of a rather interesting group that has emerged recently, of people being diagnosed with IBD (inflammatory bowel disease) when being tested for something else. This has arisen quite unexpectedly from the recent launching of the nationwide bowel cancer screening programme for the over-60s. He said that many people would not have discovered what was wrong without the follow-up colonoscopy after an abnormal screening test result, and quite a few older people are joining the ranks of the younger patients (it is more common to be diagnosed in younger people).

He was interested in my experience; I was diagnosed in the late 70s with IBS, which cleared up after several years, when I got married and moved to a different area. I put it down to the change in water. I was symptom-free right up to the summer of 2007 when I started with M.E. when the diarrhoea began again – I put it down to a return of the IBS, which was further reinforced after my M.E. diagnosis in the autumn of that year, when I discovered that IBS is very common in people with M.E. With hindsight, it is a bit different, but not enough to have taken me to the doctor for further investigation, and everyone accepted it as IBS.

I have been taking Immodium (loperamide) for relief of my diarrhoea on and off for years, and find that it works very well – I find I have to take some before I go out, or I really cannot function. The effect lasts all day, and most of the next day, and gives me some relief and allows me to get out of the house. After my colonoscopy when I was informed that I had UC, I did some online research and found there were two opinions about Immodium – some were definite that it should never on any account be taken by UC sufferers because of the risk of the serious condition known as toxic megacolon (sounds awful, doesn’t it!) while others say it’s fine in moderation. I was anxious to find out what my consultant had to say about it, and he said that I could carry on, and it was fine. I am relieved, especially as he says that the mesalazine won’t entirely clear up the symptoms.

Further research is now going on into the newly-emerging group of patients diagnosed later in life via the bowel cancer screening programme. There is also a double-blind clinical trial being set up into the effects of Omega 3 fatty acids on the condition – these chemicals apparently act as an anti-inflammatory and have had dramatic effects on rats and mice – but my consultant said, “Of course, we are not rats and mice!” They apparently have a huge tolerance for these substances, and can gain 25% of their nutrients through them, but he said you can’t expect people to eat that much oily fish! Anyway, I have agreed to take part in this trial if it will be useful to them, so he’s made a note of that. I am already taking a daily dose.

He informed me that I should not expect to feel any different for between two and four weeks. After that, we shall see. He wants to see me again in four months’ time.

I am glad that now I am 60, my prescription will be free; there is a campaign by IBD sufferers to be given free prescriptions; after all, people with diabetes and thyroid disorders and many other conditions receive them, and IBD is an extremely debilitating condition with profound social implications – many sufferers can’t go out because they have to be constantly near a loo. They are also campaigning for car parking spaces near loos, and for loos to be present on all trains. These are things that most of us never even think about. Anything to do with this particular area of the body still has a lot of taboos associated with it, and for the most part it’s a hidden complaint, so there is widespread ignorance about it, despite it being far more prevalent than MS or Parkinson’s Disease in the general population.

I am grateful to the professionals who have chosen this far from pleasant area of specialisation in order to help people live more comfortable and easier lives, but to do so, they have to spend their entire working day looking up people’s bums. Ho hum.

M.E. International Awareness Day

 

Today, 12th May, is M.E. International Awareness Day. Those who read, or follow, my blog, will be aware that I suffer from this disease. I don’t usually write a lot about it because there are other things that I prefer to write about, and I do not want this illness to define me, but it is a major part of my life, and the disability that results from it affects everything I do, and limits greatly what I am able to do. It has forced me to re-think many of my priorities and adjust my way of life to make room for it, and it has had a profound effect on my family. I have been very fortunate that for most of the time since I have been ill, I have been treated well and taken seriously by the professionals responsible for my care, but this is far from the experience of many, which is why I am writing this.

I thought I would take this opportunity today, to join the M.E. community worldwide in helping publish the facts about the illness, and to try and dispel some of the myths and downright lies.

First of all, the disease itself, Myalgic Encephalomyelitis, is a complex neurological disorder, categorised by the World Health Organisation as a neurological condition, along with Multiple Sclerosis and Epilepsy, in their International Classification of Diseases (ICD), under the number ICD-10 G93.3. The rule is that no condition can appear in two different classifications, so if it is classified as a neurological condition, it cannot also be classified as psychiatric.

The symptoms of the disease are many and varied, making diagnosis difficult, but certainly not impossible – with the right training and experience, a diagnosis can be relatively simple as long as the correct diagnostic criteria are used, which exclude other, unrelated conditions. Symptoms can affect every system in the body – central and peripheral nervous system, autonomic nervous system, endocrine (hormonal) system, digestive system, immune system, cardiovascular system – to name a few. Sufferers from M.E. have cognitive difficulties (brain fog, short term memory problems, etc.) and can suffer from depression and emotional lability, sleep problems (unrefreshing sleep, interrupted sleep, disrupted sleep patterns sometimes resulting in a complete diurnal reversal so the sufferer sleeps all day and is awake all night, very vivid and disturbing dreams), and many digestive problems, including IBS, reflux, and food and chemical intolerances. One of the main symptoms is an overwhelming and pervasive exhaustion made worse by the slightest exertion; in addition to this base-line, ongoing fatigue, one of the key diagnostic features of the disease is “post-exertional malaise” – with an onset maybe several days after the activity, and lasting proportionately very much longer and with greater severity than the fatigue suffered by normal people after overdoing things. Overdoing things for a person with M.E. may be something as simple as preparing (or even eating!) a meal, or having a telephone conversation, or getting dressed. This is not just tiredness as experienced by the normal population but something quite different and much more extreme. There is also the extreme and rapid fatigability of muscles and lack of stamina, causing muscular pain after the smallest exertion, which can also cause post-exertional malaise. This, and associated joint pain, can lead to quite severe disability, which can be helped by the use of mobility aids.

These are just a few of the problems experienced by M.E. sufferers. It is certainly not an exclusive list! The severity of the illness varies from person to person, and from time to time in an individual. It can range from a mild form where an individual may be able to hold down a job, but have little energy in reserve for domestic or social activities outside work, to an individual being completely bed-bound, sometimes for many years, unable to tolerate light or sound, in constant and agonising pain, and having to be tube-fed because they are unable to feed themselves.

There is a move to “re-brand” this illness as “Chronic Fatigue Syndrome.” (This is one reason why the condition is now often known as “ME/CFS,” to try and avoid confusion, but in my opinion, it just adds to the confusion!) This, to most of the M.E. community, is to downgrade the condition to something more trivial. There is much more to the disease than simply being tired all the time. Chronic fatigue is not the same as “Chronic Fatigue Syndrome,” but merely one of many symptoms of the illness. Chronic fatigue may also be a feature of several other conditions, such as Multiple Sclerosis, Cancer, Rheumatoid Arthritis, Depression, AIDS, Hypothyroidism, Anaemia, or post-viral flop.

There is no treatment. It is more a question of management – most people with M.E. agree that the only sensible way to manage the condition is by pacing – short periods of activity interspersed with numerous rest periods, and the breaking down of tasks into small, manageable chunks, and the planning of one’s days to allow for unavoidable periods of more extended activity by factoring in rest periods, and the ability to say “No!” even if one wants to do as much as one can! Pushing oneself to do more each day, to increase one’s activity level (as in the government’s recommended “Graded Exercise Therapy”) is extremely counter-productive for someone with M.E., and can actually be dangerous, leading to serious relapse or even, in some cases, death. “Living within one’s energy envelope” by pacing, is the only option available if one is to remain stable, or to make small improvements.

There are many physical markers detectable in individuals with M.E., with the right testing, but these tests are not normally made available. In the UK, no public funds are devoted to biomedical research, which is carried out by charitable organisations and dedicated physicians and researchers who sacrifice a great deal to enter an area of work which is often despised by the majority of the medical and scientific establishment, and which does not attract research grants. Even today, approximately 50 percent of doctors still fail to recognise that the illness exists at all, and there are many horror-stories of people being sectioned under the Mental Health Act, and children being forcibly removed from the care of their parents and placed in psychiatric institutions.

This scandalous state of affairs is not helped by the political background to this disease. You would not think that politics should come into the diagnosis and treatment of any disease, or the attitudes of physicians and other professionals to their unfortunate patients, who suffer enough from the condition itself without having to bear the brunt of deliberately engineered political dogma designed to denigrate the condition and drive funds away from proper research, education of professionals, and provision of much-needed help for sufferers and their families.

Despite the huge body of evidence to the contrary, the general consensus among the decision-makers, especially in the UK, is that the basis of the illness is psychiatric – if not in the initial cause, then in the perpetuation of the condition. This means that government monies are being directed towards a psychological paradigm and away from the biomedical approach, with the result that patients are short-changed in every way, and frequently not taken seriously, or treated with the dignity and respect that every patient has the right to expect. Many are refused access to mobility aids and benefits.

The majority of M.E. charities in this country receive no government funding, and are keen to educate the medical and associated professions, the government, the media and the general public about the truth of the matter, and to try and promote this “poor relation” to the status of being taken seriously, to the extent that decent funds are made available to research the cause, treatment and ultimate cure for this terrible disease, which appears to be on the increase.

For more information on the illness, and the scandalous political ramifications, a good place to start is the excellent charity Invest in M.E. whose website is at www.investinme.org.

Thank you for reading this. We must become more aware, in order to ease the plight of many thousands of sufferers and their families, in this country and around the world. This problem is not going to go away; new sufferers are coming online all the time, and although some people may go into spontaneous remission or enjoy some improvement, most go on to suffer for many years. It is no respecter of persons; you or one of your family members may be next.

Views from Shoshi's Settee - M.E.

I haven't been able to do much on my blog for a day or so because I was totally exhausted after my birthday. I had major pay-back yesterday and lounged around on the settee all day in one of my new kaftans and my hubby had to do all the meals etc.

One of the major symptoms of this disease (M.E.) is "post-exertional malaise" - an exacerbation of some or all of one's symptoms and an overwhelming exhaustion, not while you are doing things, but delayed until the next day or even later. It can go on for any length of time; some people, after overdoing things even a little on one day, can be put in bed for a month as a result.

It is absolutely wrong for people to believe that we are "just a bit tired" all the time. I read somewhere that "fatigue is to M.E. what being a bit forgetful is to Alzheimer's." Unless one has experienced this degree of exhaustion it is hard to understand. I describe it as "having my plug pulled out" - just like when the plug is pulled out of the bath, and the water all runs away, so my energy drains away until there is nothing left.

For this reason, the current trend to rename this illness as "Chronic Fatigue Syndrome" shows a complete lack of understanding. A "syndrome" is merely a collection of symptoms, after all, so it does not describe a specific disease, and the name also emphasises "tiredness" to the exclusion of the many other and varied symptoms to which we are all prone. In my opinion, the term "CFS" trivialises this severe, chronic and extremely debilitating disease for the benefit only of those who wish to politicise the illness, re-brand it as psychological, and save themselves the money which we need in order to make ends meet because we are quite unable to work. Medical insurance payouts are considerably less for psychiatric illness than for organic disease.

With the ongoing research and the recent breakthrough in the discovery of the involvement of the XMRV Retrovirus in M.E. patients, let us hope that M.E. will soon achieve the status of "respectable" illness in the same way as M.S., which was once known as "the faker's disease." Meanwhile, we in the M.E. community continue to press for public money to be spent on real, biomedical research into this devastating illness, and the abandonment of the psychiatric paradigm.