Tuesday, 25 April 2017

MY CROHNS DISEASE

Recently I promised that I would write a Blog about my Crohn's Disease.





I was diagnosed with Crohns in 1988 - two years after my major battle with Cahal Daly and I believe that my Crohns was caused, in part, by the stress of that battle and time. 

Crohn's disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. signs and symptoms often include abdominal paindiarrhea (which may be bloody if inflammation is severe), fever, and weight loss.[1][2] Other complications may occur outside the gastrointestinal tract and include anemiaskin rashesarthritisinflammation of the eye, and feeling tired. The skin rashes may be due to infections as well as pyoderma gangrenosum or erythema nodosumBowel obstruction also commonly occurs and those with the disease are at greater risk of bowel cancer.[1



I began to have increasing problems with CD and in 1991 was admitted to hospital to have 3 parts of my bowel resected. 

The outlook was not good - surgery every 3 years until all my bowel was gone and after that a colostomy bag for life.

I thought there had to be a better way.

I read in a magazine about Professor John Hermon Taylor who was adopting a whole new approach to CD and its causes. I went to see him in London. This is what the Prof was saying about CD:

Causation of Crohn's disease by Mycobacterium avium subspecies paratuberculosis.

Hermon-Taylor J1, Bull TJ, Sheridan JM, Cheng J, Stellakis ML, Sumar N.



Mycobacterium avium subspecies paratuberculosis (MAP) is a member of the M avium complex (MAC). It differs genetically from other MAC in having 14 to 18 copies of IS900 and a single cassette of DNA involved in the biosynthesis of surface carbohydrate. Unlike other MAC, MAP is a specific cause of chronic inflammation of the intestine in many animal species, including primates. The disease ranges from pluribacillary to paucimicrobial, with chronic granulomatous inflammation like leprosy in humans. MAP infection can persist for years without causing clinical disease. The herd prevalence of MAP infection in Western Europe and North America is reported in the range 21% to 54%. These subclinically infected animals shed MAP in their milk and onto pastures. MAP is more robust than tuberculosis, and the risk that is conveyed to human populations in retail milk and in domestic water supplies is high. MAP is harboured in the ileocolonic mucosa of a proportion of normal people and can be detected in a high proportion of full thickness samples of inflamed Crohn's disease gut by improved culture systems and IS900 polymerase chain reaction if the correct methods are used. MAP in Crohn's disease is present in a protease-resistant nonbacillary form, can evade immune recognition and probably causes an immune dysregulation. As with other MAC, MAP is resistant to most standard antituberculous drugs. Treatment of Crohn's disease with combinations of drugs more active against MAC such as rifabutin and clarithromycin can bring about a profound improvement and, in a few cases, apparent disease eradication. New drugs as well as effective MAP vaccines for animals and humans are needed. The problems caused by MAP constitute a public health issue of tragic proportions for which a range of remedial measures are urgently needed.



The Prof put me on Rifabutin and Clarithromycin. I was as sick as a dog for a month and had to spend the month in bed.

Then it all cleared up and for the past 29 In have been in relatively good shape as far as CD is concerned. 

Of course I have suffered the consequences of my encounter with CD and surgery and one of the biggest consequences has been more or less permanent diarrhea. But so what? I am well. Many of the young people who were in hospital with me in 1988 are now dead!

I have written before about my CD in various places and have, as a result, sent many people to the Prof and he was able to help them as much as he helped me, although some people cannot tolerate the strong drugs.

The Prof is now retired from his post as Professor of Surgery at St George's Hospital in London but is still in charge of research into CD. Next year he is bring out a vacine for CD!

He is worth googling.

A younger medic - Dr Jeremy Saunderson of London Bridge Hospital, London as taken over his work. 



The Prof's approach to Crohns Disease is controversial in medical circles. 

All I can say is that he saved me from a lot of suffering, countless surgeries and possibly death.

Of course the nasty comment makers on this Blog will say the Prof did wrong :-)

49 comments:

  1. Hi Pat, I want to preempt the nasty and so called "Christian" seminarians and priests - whose previous comments here are an explicit indication that they do not have a real vocation to the priesthood, do not pray and are just really horrible people;or whose formation has turned them into the wretches they have become - in saying "FAIR PLAY TO YOU"!

    You have always been a fighter whether it be against a debilitating condition such as CD or against evil present within the Church here.

    Thank you for sharing your struggles with CD here today. I for one, who know people with this condition, shall be forwarding a copy of this blog in order to provide your fellow sufferers with hope and encouragement.

    God bless Pat:)

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  2. I knew a woman with Crohns and it could be quite troublesome for her. The fact she was a heavy drinker at the time did not help. I know that God looks after his own providing in the main that appropriate medical advice is followed. I have heard prayers for people in church who were ill. I have also heard prayers of thanks for people who were cured or their condition was well managed. I ve also heard the question what happens if and when someone dies in spite of prayers. The answer is I dont know but in these times I take strength of journeying with the Church as a group. In his own way God looks after his own or so the Bible tells us

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    1. Tell the families of suicide victims that 'God looks after his own' or anyone else who suffers or people dying with cancer you sanctimonious prick. You were a Priest, now you are not - get over it. Joining a heretical Church which butchered, murdered and had a forte of hung/drawn and quartered Catholics doesn't wash with me.

      Delete
    2. The Catholic Church has a high-enough death toll of Anglicans on its hands (Remember 'Bloody Mary?) so I wouldn't chuck that accusation around. No one's hands are free of violent intolerance.

      Despite what you said: God DOES look after people...if they allow him to. But he cannot turn this world into the next.

      Delete
    3. Bishop P., do you think it mere coincidence you picked up that magazine and read about Prof. Hermon-Taylor? It was, in hindsight, a major tuning point in your life, medically speaking. Was it just the gracious hand of Lady Luck? Or something more?

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    4. Personally I do not believe in coincidence.

      I believe in Providence.

      I was guided to it I believe.

      Delete
    5. I rest my case regarding Magna Carta, I rest my case.

      Delete
    6. There is little comparison to Bloody Mary and the bastard Queen Elizabeth I, Magna Carta, you may think you have an authority on everything but you really do need to brush up on your English Church History my old son. Go study it rather than googling it as per usual.

      Delete
    7. Bishop Pat, I'm inclined to agree with you, up to a point, on coincidence.

      A few years ago, I was ill and couldn't walk far unaided. One June day I took my sister, and her father-in-law, shopping. Well, my sister went shopping while we blokes remained in the car and chatted. But the chatting soon turned to fretful concern, as my sister's father-in-law grumbled about my being parked on a double yellow line. He went on and on about it. Truth is he was 'doing my head in', so, when I spotted a legal parking space just across the road from me, I drove over to it to shut him up. The space happened to be just outside a bookshop that I had long wanted to visit, but hadn't been able to manage the stairs (the bookshop was on the First Floor). Being so near the place proved irresistible to me: I managed to get up the stairs and into the shop. The only persons present were the shop assistant and me. I looked around for literally a few seconds, and then was drawn to a solitary publication on the bottom shelf of a bookstand. It wasn't the book's cover that caught my eye, but its title, "True Life in God", by the Egyptian-born mystic, Vassula Ryden. I had read a review of it a few years before and had been both impressed and intrigued. Now here was my chance. I picked up the book and opened it at random. This is part of what I read:


      'O soul! Yes, it is I, your Saviour, who came to you to heal you. Beloved soul, it is I, the Lord, who came at your door knocking. O so beloved soul! I have brought you to me - I am now feeding you. Come! Approach me. I will embellish you and purify you; I will heal all your wounds...It is I who came to you - I sought you soul... .'

      The words sent a shiver down my spine. This was coinvidence, surely? The shivers happened again, more intensely, when I read Vassula's words, in parentheses, directly below the above quotation:

      'Jesus has given this message to whoever is reading him. It is not a coincidence that you are reading His Peace and Love Message. It is He, Jesus who looked for you, came to you and gave you this message to read.'

      Just think: had I not read a certain book review a few years before, had I not decided to take us all shopping that day, had I not parked on a double yellow line, had my sister's father in law not been such a worrier, and had that alternative (and legal) parking space not been just outside the bookshop, I should not have come across a work that almost entirely repainted my image of God.

      Coincidence or what?

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    8. 14:29, 'little comparison to Bloody Mary'? Really? Almost three hundred people burned alive for their beliefs, most of them not bishops but ordinary folk...and you think this inconsequential. Wow! What rationale!

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    9. 14:18, what 'case'? You never had one.

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    10. In philosophical terms there is no such a thing as coincidence you gobshite. Stop using google for your arguments as they shine through ie Bloody Mary.

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    11. 00:00, in logical terms, it should, in this case, be 'e.g. Bloody Mary', not 'i.e. Bloody Mary'.

      Learn, first, what these Latin abbreviations mean, and then learn to distinquish between them.

      Don't use them improperly, since doing so only makes you look illiterate.

      Delete
    12. You didn't answer the question but just traded insults as per usual. You are a very disturbed, unpleasant and rude man.

      Delete
    13. 09:49, what question? There was no question.

      And I politely shared my gift of great knowledge to correct the obvious ignorance of another poster. It was, in a sense, a spiritual work of mercy.

      Your attitude should be one expressive of gratitude and praise. (Which, of course, I would receive with customary humility.)

      Delete
  3. Why do you assume that there will be nasty comments ?
    I'm happy for you that your condition is manageable
    Yes many of us suffer as a result of various bowel problems
    I blame poor diet....one has just to look at the junk young people eat and then wonder what it is doing to the gut....diet drinks come to mind etc
    Perhaps Pat you could pay a little attention to your blog when you get home
    No one posting here appreciates being called a moron or a trans
    Please pat can you bring your blog back to the interesting way it used to be.

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  4. 12.49
    Sean ignore that post.
    Pat needs to block these nasty personal posts.
    Sean you continue doing whatever it is that you do
    It's no ones else business.

    ReplyDelete
  5. I think what's happening here is that possibly one person has taken on him/herself to ruin this very necessary blogging of Pat.
    All these personal attacks need to be NOT PUBLISHED

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  6. 12 .49
    No one really cares what washes with you
    Bad manners doesn't get you anywhere in life
    God bless you Sean x

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    Replies
    1. Thanks Sean for that post x

      Delete
  7. FROM NOW ON I WILL BLOCK NASTY COMMENTS.

    CONCENTRATE ON THE TOPIC - NOT THE WRITER.

    ARGUE AND DISAGREE WITH RESPECT.

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    Replies
    1. Block Magna Carta then Pat if that's your logic.

      Delete
    2. MournemanMichael25 April 2017 at 14:26

      Thank you Pat.
      I welcome this and hope your block will also include the type of snide one line comments which, although not pointedly 'nasty ', in context are derogatory personalised retorts of no value to the blog debate.
      MMM

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    3. TOO LITTLE TOO LATE PAT

      Delete
    4. You can hardly blame me for trying hard to let everyone speak?

      You cannot judge the number of visitors to the blog by the number of comments.

      My stats sre an average of 4000 to 5000 per day with occasional blogs scoring as high as 15,000 daily visitors.

      The blogs on Gorgeous seem to score the highest?

      Delete
  8. The wrong family member is dead.

    ReplyDelete
    Replies
    1. @14:15 bring your comment to evening prayer!!!!

      Delete
  9. 13 15 13 20 13 22 Thank you. Would I tell a suicide victims family God looks after his own? No. I would say that I dont have all the prepacked answers and I hope that those who grieve find some consolation in a caring and realistic Church Community. Enjoy your holiday Pat. Perhaps you may find some material for publication in the future based on the negativity encountered on here. Words on here hide behind the internet but somebody somewhere must be suffering asa result of some of the true viciousness portrayed by some

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    Replies
    1. Thank you. Home Friday morning at 8.30 am.

      Delete
  10. CD is not curable. Infusion therapy or immunosuppressants have worked for me. They have their side effects though.

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    Replies
    1. Would you be interested in contacting Dr Saunderson?

      I am med free and basically in CD remission for 25 years!

      That means no side effects.

      Delete
  11. So the bacteria behind CD can be found in animal (presumably not just cows') milk. Might be a good idea to avoid drinking unpasteurized milk, then.

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    Replies
    1. The bugs are in pasteurised milk too as it is only heated to 70 degrees. UHT milk which is heated to 80 degrees does not have them.

      The Prof tested milk from all over the UK and they were "infected".

      Of course most people with good immune systems can deal with MAP.

      The immune system can be weakened by many factors including flues, infections etc
      - and stress of course. Stress is a big part of many diseases.

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    2. That info is cause for concern.

      I take it that CD bacteria are present in everyone's gut (although at harmless levels for most people). Or are they completely excreted in bodily waste?

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    3. I imagine MAP present in all. Only becomes a problem when your immune system is weak and cannot fight them off.

      Delete
  12. According to the Crohn's & Colitis Foundation of America, about 1.4 million Americans have Crohn’s disease or ulcerative colitis. Of those, about 700,000 have Crohn’s. In the years between 1992 and 2004, there was a 74 percent increase in doctor’s office visits due to Crohn’s disease. In 2004, Crohn’s disease was the cause of 57,000 hospitalizations.

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  13. Crohn's disease is a relatively uncommon condition. There are currently at least 115,000 people living with the condition in the UK.
    Crohn's disease can affect people of all ages, including children. However, most cases first develop between the ages of 16 and 30.
    A large number of cases also develop between the ages of 60 and 80.
    It affects slightly more women than men, but in children more boys are affected than girls.
    The condition is more common in white people than in black or Asian people. It's most prevalent among Jewish people of European descent.
    Read more about treating Crohn's disease.

    ReplyDelete
  14. I got it when I was 35. I attribute at least part of the cause to the stess of being sacked by C B Daly and the battle I had with him.

    When you have a strong mind like I have CD will attack body tissue.

    A good mental breakdown might have saved me from CD?

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  15. Over 1 million residents in the USA and 2.5 million in Europe are estimated to have IBD, with substantial costs for health care. These estimates do not factor in the 'real' price of IBD, which can impede career aspirations, instil social stigma and impair quality of life in patients. The majority of patients are diagnosed early in life and the incidence continues to rise; therefore, the effect of IBD on health-care systems will rise exponentially. Moreover, IBD has emerged in newly industrialized countries in Asia, South America and Middle East and has evolved into a global disease with rising prevalence in every continent. Understanding the worldwide epidemiological patterns of IBD will prepare us to manage the burden of IBD over time. The goal of this article is to establish the current epidemiology of IBD in the Western world, contrast it with the increase in IBD in newly industrialized countries and forecast the global effects of IBD in 2025.

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    1. You certainly know your 'stuff' here, unsurprisingly.

      The exponential global incidence of bowel disorder, more obvious in newly industrialised countries, does suggest, to me, a strong dietary factor in its pathology. Historically, as countries become wealthier through industrialisation, there are corresponding changes in diet, not all of them healthy. There are also psychological changes, with the drive to be competitive, and, therefore, increased levels of stress. None of these would contribute to good bodily immunity.

      Delete
    2. I read a Guardian article (2014) on Professor Hermon-Taylor's work. The Professor's quoted words suggest that he himself suffers with IBD. Did you know this?

      One of the commentors on the article said her husband was advised by the professor, in 2000, to avoid milk (because of the presence of MAP in it), drink soya milk instead, and eat little cheese. He did as advised and has been in remission ever since. Wonderful.

      Delete
  16. Pat I thought you were blocking the posts from whoever the hell these insulting folk are. As you say comments to be about the content not the poster/s

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  17. i know a seminarian with crones disease.

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  18. Thank you Pat. The offensive comment appears to have gone

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  19. Pat, I think you would fare even better if you stopped blaming the person
    It is much better to move on from that
    Most of us know about the bishop by now, people can only affect us if we allow them too
    I would say that you would be telling that to all the rest of us if we came to you for help
    As someone who has worked and studied as a counsellor I'm just sayn
    I still believe that all the junk young people are encouraged to eat has consequences.im speaking as a profssional and yes I realise that my advice is no use once the bowel has developed a disease.
    Of course I know these diseases happen despite all care and diet.

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  20. 23 .18 any of us can fall victim to most stuff in life.
    Many are lucky.i consider myself one of the lucky ones.
    Despite numerous complaints I'm here..loving...laughing...and enjoying all that life throws up..not bad for 78

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  21. Sean ...keep up your lovely posts xx

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  22. 9.23 Thank You. Positive feedback is appreciated and genuine negative criticism is humbly taken on board x

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