Tag Archive | Crohns

Budget Healthcare

I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

  • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
  • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
  • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
  • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

CFS and ME Comparison Chart

CFS is Always a Misdiagnosis

ME v CFS – They’re Not the Same!

Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.

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Not Vegan Anymore?

I’ve never heard of Alexandra Jamieson before today, so I don’t know how important or influential she is, but this article was drawn to my attention as somebody with vegan sympathies.

http://alexandrajamieson.com/im-not-vegan-anymore/

Let me say at the outset that I’m not actually quite vegan – I eat free-range eggs and even fish occasionally, so technically I’m not even vegetarian, you might call me flexitarian. I don’t drink milk if I can avoid it, but I have cheese rarely. I aim for vegan as much as possible.

But I have been vegetarian on and off for the last 20 or so years, and I was fully vegan for a few months last year. I even considered writing a book to convince Christians to become vegan.

I had two reasons to become reason. One was my own health, which if you’ve been reading for a while you will know is not good, and has been for over ten years. I have an as yet unspecified illness which is currently called ‘ME/cfs’. In short, my health is pretty dire. I am overweight and in constant pain. So I hoped that going fully vegetarian and then fully vegan would help.

It didn’t.

In fact quite the reverse happened. I put on even more weight and got even sicker, and my cholesterol was raised from the year before when I tried paleo.

I found that although I’m not coeliac, I can’t tolerate much wheat, so adding wheat and fake meats into my diet exasperated my IBS to the extent that my GP started to be convinced that it was in fact IBD or Crohns. My brother has Crohns so it was a real worry. But I found that as long as I scaled back the wheat and the fake meats, my bowels behave themselves for the most part.

I was actually much healthier on a paleo / primal diet. All the science that I have read on carbs and cereals convinces me that a cereal / carb-based (as opposed to plant-based) vegan diet is potentially very detrimental to health, especially if you have metabolic difficulties with carbs, as people with PCOS and other endocrine disorders do.

My second reason though was conviction that, regardless of my health, it is essentially wrong to take the life of an animal, and further, to take the produce of an animal who is kept in cruel and inhuman captivity.

I admit I don’t have the same strength of conviction when it comes to fish as I do for mammals, but I have no doubt that the methods required for mass rearing and slaughtering even of fish are quite different than those required for small scale rearing.

I have always, since I was a pre-teen, thought that it was cowardly of a person to eat an animal if that person was not willing to do the actual killing themselves. I know I wouldn’t be. Could I kill a fish? Perhaps. (I’m not sure, perhaps not. Probably not, thinking about it. If I saw a fish suffocating and struggling I would probably have to throw it back.) A cow? A pig? A chicken? Never.

Hypocrisy and cowardice are things which I abhor. So I try to limit my own. OK so it is currently limited to fish-eating. I have at least stopped eating my favourite prawn sandwiches (my non-kosher guilty secret) after discovering the slavery scandal linked to supermarket prawn supplies.

But Alexandra Jamieson’s article disturbs me. Relativism, looking for ‘your truth’ as opposed to ‘my truth’ is so convenient! It becomes possible to justify almost anything that way. But there is an objective truth here, that animals are abused on an, unthinkable, indescribable scale.

And this is the problem with health-based veganism.

If you are a vegan for health reasons, without the moral conviction, it is doubtful that you will stay vegan. Being vegan is hard. It’s awkward. It’s difficult. It can make you a social pariah, and eating in restaurants is a challenge, and it may not reap the health rewards you are seeking.

But if you look into the reality of the way animals are treated, if you spend time with animals and realise they have feelings, that they feel fear and pain, and suffer when they die and when they are held in captivity, producing milk in painfully inappropriate amounts, if you know that it is the right thing to do, you will have a much higher chance of succeeding as a vegan.

Concerns over Soya as a Health Food

Last year I experimented with going vegan for about three months, for various reasons. Unfortunately I got very ill, to the extent of nearly needing to be hospitalised. Tests suggested that I was at risk of an Inflammatory Bowel Disease, and was advised by my GP to avoid wheat, dairy, all fake sugars and all fake meats especially soy-based and gluten-based meat replacements. I have found that, providing I stay within those guidelines, my gut doesn’t give me too much trouble.

This prompted me to look again at the subject of whether soya can be considered a health food or not. I present the following link as a good summary of why soy may be a health risk – not just to people like me with a tendency to sensitivity, but to everyone, especially children and young people.

http://www.keeperofthehome.org/2014/01/why-soy-is-not-a-health-food.html

Please do your own research and come to your own conclusions about whether you want to include soya in your family’s diet.