Sunday, 6 May 2012

The Journey

I've been in hospital three and a half weeks now. Normally, I'd have written a blog post most days, but I've just been too ill. I can't remember the last time I was too ill to write. I always write. Even if no-one ever read it, it was my safety valve, my confidence, my way of understanding my own feelings and emotions. I've written an hour after major surgery, during a small-bowel enema (!) and whirling in the middle of a heartbreak.

But this time, I've been too ill.

I tell you all this to try to convey just how ill. I can write bombed out of my head on opiates (sometimes it's more interesting ;) flat on my back unable to get out of bed, (actually I do that quite a lot) faint from hunger after days of vomiting - nothing usually stops me. But this did.

I didn't come in here very ill. The crohn's was broadly fine (well as "fine" as it ever is...) but I'd been getting chest infections for months. My local hospital didn't want to know because all my notes and specialists were here in Cambridge, 130 miles away from home. It became clearer and clearer that I needed a whole MOT of tests and investigations, so the only way was for me to have them done as an in-patient up here.

Over the years, the many, many years of trying to control this cruellest of diseases, I've learnt a thousand things about my body. Mainly I've learnt that I'm rather a delicate flower. (and the Tomboy in me growls) I react very badly to most medications. There are only two anti-biotics I can tolerate, I'm horribly allergic to most painkillers - especially morphine. All of the crohn's drugs, one by one, have given me unbearable side effects. The contrast dyes or barium they use for their tests makes me sore for days, I can't tolerate their gloopy, glucose-packed feeds or their sulphuric enemas that rip through bodies like napalm. I'm even intolerant to calcium and iron supplements, B12 shots and aspirin.

So, slowly, slowly, I learnt that the best treatment for me was simplicity. No more, no less. Good, healthy food, cooked from scratch. No toxic chemicals, no pointless additives, not even thickeners if a reduction will do. No neon drinks or fizzy pop. No synthetic creams or juice "drinks". Add in a dose of sunshine and I feel zingy and alive. Sunshine, fresh air and simple, freshly cooked food.

I think of it like a set of scales now. The most sensitive scales - feather sensitive.

If I go away for the weekend and eat someone else's food, even the thickener they use in their sauces might send me vomiting through the night. Eating a little later, or a little earlier, not being able to eat little and often, (because most people don't do that) all play havoc. Too much cream or too little salt, too much starch or not enough protein. Even the change in water can be enough.

I balance a tightrope every minute of every day and it's become so automatic, I forget I'm even doing it. More importantly I forget it's actually a full time job.

When I came into hospital, I was immediately pumped with litres and litres of contrast dye for a CT scan, then more for an MRI. I mentioned that it made my crohn's flare up.

They insisted I drank supplement drinks to "build me up" - a cacophony of chemicals. I suggested I was better just following my normal finely balanced diet, but they were convinced it would help.

Then they changed my painkillers. As I always do, I warned them that it had never worked out all that well. I reminded them of the times I've temporarily died from morphine or screamed and writhed through a night of new meds. This new drug was a morphine derivative, and they assured me it would be fine.

Next they inserted a tube through my nose, deep down into my bowels to feed me through. I mentioned that  feeds had always made me sick, but the Dr said that couldn't really happen. I asked him if he ever blushed when he told someone who had actually experienced a condition for 28 years what they could and couldn't feel, but he just smiled and assured me it was for my own good.

By last Thursday I was a mess. By the following Wednesday, I was in terrible pain, vomiting every twenty minutes or so. A headache so splitting I tried to keep one eye shut. I was so dizzy and sweaty they had to keep changing my sheets. I couldn't talk, get out of bed or eat at all. I couldn't even sip a cup of tea and keep it down. Suicide nausea filled every atom, I felt sick in my toenails, in my hair. I didn't want to blink I felt so sick. I went 4 days with no nutrition at all as the feed kept drip-dripping into me only to bounce back out. I went 3 days with no fluids.

I kept telling them it was the feed - I'd had it once before and spent 24 hours vomiting non stop - but they were still adamant they knew best "Just try one more night Susan..."

I kept telling them it was the new drug - I recognised the splitting headache as a precursor to the dramatic morphine-crashes of earlier stays. I recognised the sweats and the dizziness. What's more, morphine doesn't relieve pain for me at all, and so I endured that, raw and untreated too.

I kept telling them the contrast dyes gave me constipation and inflammation, but they said it was "for my own good - you do want to get better don't you Susan?"

Finally, two days ago, I called a halt. I asked them very firmly to stop the new painkiller, to stop the toxic feeds, to stop the new vitamins and re-introduce my old painkillers. I made them pull the tube out of my nose just to be sure.

And here I am, this morning feeling perkier than a new born lamb. I might actually gambol.

I'm hungry, I'm thirsty, the suicide nausea has passed, the pain is back under control, I'm cheerful and the headache has gone.

No-one will realise that I was right all along. No-one will remember my awful reaction to the feed in time for the next patient. No-one will remember that their so-called "safe" morphine based drug does not avoid allergy for all. No-one will finally accept that certain painkillers actually just do not work on me. The dieticians  won't remember that this particular feed nearly killed me. They will still assure the next patient that "you can't be allergic to it" or "it can't get trapped it's only a liquid" No-one will make a mental note and avoid CTs and MRIs in my case next time.

I know this to be true, because the same thing happens every time I'm in hospital. I'll carry on having the same battles, the same tortuous process of elimination, the same miserable episodes We will continue to flush billions and billions of pounds down the drain until we :


I've been on a horrific, agonising journey; enduring not living, surviving not healing and finally, I just ended up back where I started.

Don't get me wrong, the Dr's did what they thought was best. No-one was negligent, no-one cruel, they just didn't listen. Until they do, we will continue to throw billions of pounds away every year, not to mention the unnecessary suffering we will cause along the way.


  1. Doctors and nurses think largely how they're told to think by Big Pharma. Big Pharma determines what's in a doc's or nurse's education now. If you pass an exam in medicine and it's a step towards a medical qualification of some kind, it's because you've ticked the boxes Big Pharma wants you to. If you disagree with Big Pharma, then you don't get to work in the medical profession. Big Pharma's aim, of course, is naked profit. The actual welfare of the patient is an irrelevance. When the medical people are treating you, all programmed up by Big Pharma, they no doubt believe absolutely they're doing the right thing for you. This has all gone much too far. High time it was all reset.

  2. You write so powerfully of the frustration and terror of not being listened to in a hospital situation. It echoes my experience too. Thank you for writing it. Maybe one day they will start to listen.

  3. I nearly died from a Consultant not listening; I would have died had I not - eventually - ignored him.

    Not to assume that I feel your pain but I hope that you are better soon *loans megaphone for next time* because, sadly, there may well be one

  4. Thanks again Sue for your writing. I haven't suffered your level of pain but I too can't tolerate Morphine and yet they insist, and then I throw up. I have to follow a special diet, last time they listened, what a difference it made.We need to get your message across, it saves a lot of suffering, and a lot of money. Your blog should be essential reading for all Medic's.
    Get Well Soon x

  5. Unfortunatly I've been in a similar situation myself a few times. I hate being admitted and now Stuart takes control thankfully but u still you get doctors who know best - even though I've had to self manage it for 33 years.

  6. I also have a rook of intollerances and allergies which cause me similar symptoms and have come up against the same refusal to believe my experience from medics, so I have to disagree with you on one point Sue: to force their ideas and refuse to listen to the patient is most decidedly both negligent and the resulting pain inflicted extremely cruel.

  7. So sorry that you have gone through and continue to go through so much pain and ill health Sue. I had my intestine trapped in the mesh of a hernia repair a few years ago and I was so sick I thought I was going to die, I pray it never happens again and don't know how you go through all that you do. You are an inspiration to many and always so positive and strong. Thank you and I keep you in my prayers and thoughts, and hope you are better and able to go home to your sons very soon. xx

  8. It's best to eat good simple food, organic if you can afford it, or grow your own. The amount of chemicals in the environment is scarey, and the amount of horrible stuff they give to animals to make them into attractive food for humans is cruel to the animal and no good for us. Best to avoid doctors and hospitals as much as possible by looking after your body and not sticking anything unnatural into it. Sue is right, the med. profession doesn't listen to mere patients and there is terrible waste. As to the way Dr andrew Wakefield (re vaccine damage & autism etc) was treated - whther he was right or wrong - he was vilified - completely stinks.

  9. Oh for goodness sake - when will they ever learn?!? As another person whose body and conditions don't 'make sense' to doctors, although I don't suffer the extremes of illness you do - I know something of what you mean.

    Do you still need surgery, or was that another aspect of their professional folly?

    I hope lots of medics read your blog - it can teach them a great deal.

  10. I think it was cruel of them not to listen.

  11. Just popped in again, cannot believe that they are treating you this way... cruelty disguised as "we surely no best, since we wear the white coats and have loads of letters after our names!" I thought those days of medics believing they were God were long over, sadly reading your account shows this is not the case.

    I have a friend with Crohns and the only way she has avoided hospitalisation is to follow the simple food, no additives etc. She has recently found out that she's allergic to histamine in foods and other cleaning type stuff and reacts badly, not with the crohns but swelling of face and fingers and borderline anaphylaxis.

    Hugs to you San x

  12. I do not understand how they are failing to follow the simple logic of your not gettIng better until they do as you direct. How is it not obvious that you're right?

  13. Sounds more than cruel, Sue.
    My surgeon said "we do listen to you, you know" this week. Well, maybe, sometimes.
    But they've never ignored me as much as yours seem to - and I've had Crohn's for 47 years!
    Is it time for you to put that Tory mantra 'Patient's Choice' to the test and relocate to another hospital? Think about it - Guys & St Thomas' is v.good for Crohn's.

  14. Pedantically speaking: Not listening is negligence.

    You want to print out this post and get it put in your notes.

    1. Sue- I need to repeat what Lisa has said, not listening is negligence.

  15. I am fairly new to your blog Sue, and am in awe at your wonderful writing style and bravery in exposing the sheer waste and ineptitude of those who think they know what is best for us, disregarding our own experience and knowledge.

    I have recently been diagnosed with arthritis. Despite my pointing out quite vociferously that I have a severe reaction to co-codomal, my GP prescribed this, and told me the other medication would prevent this. It didn't. I hate to think of the cost of the useless bag of pills I was given.

    Brilliant blog, I will keep looking in, take care, Rosalinda

    1. Thanks Rosalinda, nice to "meet" you

    2. This comment has been removed by the author.

  16. so sorry to hear this sue but as always your spot on with all you say leaving the likes of me to be able to add nothing

    Until the likes of you came along i thought it was just me but i now realize that the majority of doctors aren't really up to much as in all illnesses your cure will only come about if you can tolerate the medication but with regret that wont happen for the likes of myself or many others who cant take any form of medication so there lies the overall problem

    what does make me slightly better however is hot constant weather and being able to get in the warm sea for long periods this has been beneficial i know of to many kinds of illnesses and many people i have known that have immigrated from my advice have proved to be successful and are now very fit in some cases and working once again

    as for myself the embassies have always declined my application as my pension is not high enough for immigration purposes which has to be in the £25000 per year ball park as you have to remain a non citizen for the rest of your life and although things are much cheaper at a local level you yourself as a immigrant do not have permission to buy a local property which means in reality you cant afford to buy a property at all

    having said that you could indeed rent but there again rentals are high in the luxury areas of the world where the sun and sea are good

    So sue like me our struggles go on it's just a pity i don't live near you as I'm sure that would help me being a little fitter then yourself i would be able to help you in some small way

    i myself have only my wife and professional carer look after me but sometimes i would just like a decent neighbour to drop by but that isn't going to happen so will have to make do as i have in the past

  17. Brian McAlorum6 May 2012 at 19:28

    After having waited 15-years to be able to get our dilapidated bedroom decorated for the first time, I asked my nephew who was 11-years-old if he would commission a picture to go on the wall of our newly decorated bedroom. He was excited and from his incredible and creative imagination he drew a beautiful picture, which I framed and put up on the wall where it remains today…

    In one part of the picture he drew me standing beside my wheel-chair, and above it gave me the name, “Dr Jings”. The wheel-chair was his interpretation of "Dr Who's" Tardis, and I was the good Doctor.

    So… as a good Doctor here is my script Susan – I hope you are listening!

    “YOU” are a beautiful plant Susan, and like any plant it needs the right conditions and environment to grow healthily in! Only the plant knows this, because the plant has had many years of experience finding out what conditions best suit it. What conditions cause it to wither, and what conditions, environments, sustenance, rest, shade, light etc. irrigate it to be nourished and to bloom… It is true that most plants go through countless seasons, always learning and adapting. Some seasons are long and arduous for the plant, and some seasons where the weather is a little more clement the plant can live more at ease… Though at the root of the plants essence, the spirit ultimately “Knows Thyself”.

    Dr Jings

  18. Sue, so sorry to hear of what's been going on. By contrast my GP and Cardiologist keep reminding me that I'm my own expert and that my understanding of my condition and meds enables them to work with me in a partnership.
    Methinks a cultural change is needed with certain medics!
    Tons of love xxxxx

  19. Thanks for your excellent blog (I've just discovered it). I have been accused of not wanting to get better because I have refused a specific drug/treatment that I know doesn't work for me. I don't know how anyone could WANT to go through what we do; I just know that I don't want it to be any worse than it already is!

  20. you've been very brave(or too.sck) to do what I usually do in the many, many times this has happened to me.I discharge myself. I know that doing so has saved my life but I've got a ' bad reputation' or a ' personality disorder' hope you can pick up the pieces Sue xxx

  21. You've been through such a horrendous ordeal, and not for the first time.

    I've never been hospitalised for anything, but I wonder if you could refuse their treatment and insist that they listen to you, rather than suffering the consequences of their ignorance and unwillingness to listen to your greater knowledge? Is this an option? If so, that would be my approach: refuse to accept that they "know better" when they clearly don't.

    I'm very glad you're feeling better Sue and I hope you're home with your family very soon. Stay strong, hon x

  22. BEST OF LUCK can you not list all the meds you are allergic to when you were admitted? you probably did but they ignored it! all doctors tend to have a god complex and you can never go into the GP and tell him what's wrong because they just think you are a paranoid hyper wotsit that I cant spell and spell check not helped!
    I have most problems with my GP he messes up all the time!

  23. What a dreadful ordeal you're having to endure! I can only send my love and sympathy and pray that you are feeling well again so very soon.

    These arrogant doctors remind me so much of those know-it-all toss pots in government. The same ones who think that sick people will recover if only they'd get a job and stop dwelling on their ailments. They know what's best for our health, these ministers who won't listen to sense and reason whilst they remove all your security and push you through Hell? So convinced that you're languishing and not helping yourself. I am angry beyond words. Doctors however, do have to have extreme confidence in their own ability but the experience of the patient is far more valuable and important that what they've learned from a text book!


    I am so pleased that I read this post. Time and time over I've been told that anti-depressants will help my anxiety only to find that when I've trusted their advice I've suffered from truly intolerable panic attacks and felt utterly suicidal. Take away the pressure and the stress and I cannot tell you how much better I feel, and yet, here I am, being pushed towards work I cannot cope with and medication that does me harm. At least having read your own truly awful experience I feel I am justified and confident in my own decisions of what is best for me too. Thank you!

    I'm so pleased that you are feeling a little better and hope you can make your escape back to your own home and family very soon indeed sweet lady x

  24. You're courage is amazing. Hang in there Susan. I just pray to God you are getting the right treatment.

  25. Rather than offer you praise or personal horror stories, I'm trying to circulate this to doctors and nurses as it's vitally important they hear this stuff. This is the sort of stuff that needed reform and always needed reform, but this is NOT what privatisation is about to change. The only difference will be that we now have to pay for doctors to misdiagnose/mistreat us.

    So vitally important to get into the hands of sympathetic docs or even Ombudsmans or some form of review body. I'm emailing away.

  26. Have you thought about getting a written, hard copy, letter from one of the doctors, explaining your symptoms, allergies, suitable meds etc., that you can have with you at all times and present to doctors when you are initially re-admitted in whichever hospital.

    This will ensure that whichever doctor is diagnosing you on re-admittance will have no excuse not to administer your correct healthcare needs; for if s/he doesn't administer correctly after being given patient helathcare needs, s/he and/or hospital are leaving themselves open to litigation.

    There are other ways to ensure correct healthcare administration when entering in-patient care, but the above should suffice.

    Hope this helps and glad to read you're feeling bit better - onwards and upwards :-)

    Take care,


  27. Sue, I was literally in tears reading this. It's bad enough that you've been through all of this before, but for the medics to ignore previous reactions - and your insistence that this was correct - to me IS abuse, and abuse of the worst kind!

    No matter their insistence that 'this is good for you', YOU know what is best for yourself, and they should have listened to you!

    Is there any way you could have a medical document added to your hospital notes, with all the drugs and compounds you react badly to listed in it - and signed by your consultant?

    If you could do this, the next time they ignore you, and nearly kill you in their arrogant ignorance, you could point out to them that, legally, you could have them for medical incompetence. I'm not saying to sue them, as I think this a terrible habit to get into, but it might shock them into actually listening to you?

    In the meantime, I send my warmest wishes, and gentlest hugs, for your recovery, and hope you can get back home soon.


    Take care and may God bless you, and keep you safe. :)

  28. You are not alone sue.

    I heard from a friend yesterday that her mother has been having terrible bowel problems and losing weight. She too was put on IV liquid feed that just caused her even more pain and diarrhoea. The doctors there too, don't think this is possible. What ever happened to LISTEN TO THE PATIENT?

  29. This is so infuriating. *hugs* I really hope things improve. x

  30. Hi Sue, what a dreadful ordeal you are going through.

    Have you given thought to have a Power of Attorney document drawn up? If you named your husband the staff would have to go through him every step of the way, ensuring that only things you want done are done, and preventing any treatment you know fine just makes you worse.

    Kind regards,

  31. I too have Crohn's and react to a lot of things, I think this could be do to histamine intolerance (like Woolly Wanderer's friend with Crohn's), like you, I find simple foods that are as fresh as possible are best, or I feel ill. I wonder if you have it?

    I also cannot eat certain foods more than a couple of days in a row, or I feel ill. I have asked my doctors to test me for histamine intolerance, but they know very little about it and just fob me off (despite me giving them information). So I have to do the best I can with my own diet and avoid what makes me ill, which as you know isn't easy.

    I am sorry that being in hospital has made you a lot worse, especially when you have to give over control over what you eat and take, to them, and that makes it worse. I hope you get better very soon.

  32. I think the key phrase in what you wrote is when they said to you "you do want to get better don't you Susan?". Unfortunately, when people with expertise (like doctors) can't 'fix' something, their response is often to blame the person they are trying to 'fix'. Paying attention to the expertise of the person with a medical condition or impairment requires some humility - as does a recognition that sometimes professional expertise doesn't have the answer. The culture in which doctors and other professionals are working, pervaded as it is by unequal power relationships, doesn't often allow for 'I don't know' or 'what do you think might help' to be legitimate responses to the intractable problems that our bodies sometimes throw up.

    That phrase 'you do want to get better don't you?' is just so oppressive that it made me shiver to read it. It not only tries to blame you for what is happening to your body but pressurises you into accepting what you know is going to make things worse, on the grounds that otherwise they will blame you for not getting better. And by pressurising you into accepting their version of what would help, they are also making it less likely that, together, you and the medical profession could come up with more effective responses.

    Anyway, you know all this....but I wanted to say it! I hope things improve, and that they are now working in partnership with you - and that you get back to being able to write as much as you have before.

  33. Nice to see you are getting behind the NHS reforms that will achieve a tailored service to NHS patients by their doctors.

    Get well soon,


  34. HI Sue, so sorry you are having such a hard time at Addenbrookes. Have you seen Dr John Hunter yet? (or is he involved in your case allready??) I remember he was researching food intolerance and Chrones at Addenbrokes. Is the 'drink' you are intolerant of his exclusion diet one? if not it might be worth asking /trying it and getting a referral to him if you havn't seen him yet..If it IS his concotion then he should be informed about your adverse reactions. He published a book on exlcusion diets that we use in the family, My Mum was under him for a while (rheumatoid arthritis)

    It is astonishing the difference between being an in-patient in the UK and how it is in France where we keep our own notes and they listen when I tell them which foods I am intolerant of (gluten & tomato) and which drugs I react to badly (morphein and similar), which veins won't work for iv. I now flatly refuse to take anything I know will harm me, and my husband backs me up. I agree with the poster above that you should have a letter /list added to your hospital files, especially as the reactions occurred in hospital and were witnessed by staff on the ward.
    Take care Sue, sorry for typos, brain fog kicking in I'm afraid.

  35. "Suicide nausea" is my new handy term. I think the suggestion of a power of attorney is a very good one, but it's crazy that it should have to come to that.

    I don't understand why one always has to try treatments that one knows won't work in order to get to 'the next level' of getting support that one might actually need. It's terribly damaging and wasteful of resources and time. Any medics reading and able to 'splain?

  36. Susan;
    Your post burst with meaning,
    The poetry of hard cut, gut born words
    That answer the ignorance
    Of the medical profession attitude and hospital 'learning'.
    Their in-ability to listen to the chronically ill,
    Their own impairment-denial,
    Their impairment not to take what the experienced patient says and listen
    Without first adding their sweetener
    Their poor-pseudo-physiology of
    'over-anxious' patient, parent, difficult bed number,
    That denies the chronic patient's integrity,
    Makes one into their notional object, and sicker.
    And worse,
    Their creation of disability in action upon us,
    their discrimination based on their imposed attitude
    That they never record or admit to;
    These 'oversights',
    Which to you and me is their own ignorant blindness
    Carved out in our, and our loved ones, suffering.
    When I write about the Notional Health Service,
    This is what I try and capture;
    You have done so with your body, your mind and your spirit on your blog today.
    I bow down and praise you,
    As these nurses, doctors and experts should do everyday, Before your hospital bed,
    Before they even open their mouths,
    Move their lips in morning greetings.

    One love, strength and health to you.

  37. Hi Sue,Bobbie here.Sorry to hear you are back in hospital again..I can totally relate to your blog.As you know I also have Crohns but fortunately not as serious as yours.Im currently waiting for an operation date having developed several sights of stricture a fistula and some adhered bowel.Im currently surviving on full fat milk and Ovaltine.I've developed a salicylate sensitivity which means apart from the obvious,not being able to have aspirin,food is also my enemy as sals are a natural chemical found in all fruit,veg,herbs and spices.
    When i spoke to a dietician on the phone about not being able to take liquid diets I could almost hear her tut at the other end of the phone.She questioned the existence of any proof of such a thing as a salicylate sensitivity!
    I asked her to call my allergy specialist at Southampton and hung up the phone.
    Having woken up after the birth of my son with a swollen face(turned out it was the anti inflamatory meds)I had to beg for anti histamines on a regular basis.One nurse said to me "well we dont know what your face normally looks like" Well it certainly doesnt look like a botched fillers jab with bright red wheels to boot!
    I am currently busy compiling lists of what i must not be given while i am in hospital(drugs and food)this time round, but like you I know there will be battles,pain,vomiting,sweats ,lumps sticking out of my tummy and moving like I have an alien in my guts.

    No one knows more about Crohns disease than a person with Crohns and its a bitch....

    Take care Sue I hope you feel better soon xx

  38. During my many inpatient stays in hospital (and to a lesser extent in outpatients) I have noticed something rather interesting and also rather obvious: The "newer" the professional the more likely they are to actually listen. I mean, the junior doctors and the student nurses will stand there and listen to what you say, they express shock or horror if something is going badly and they look proud and delighted when they are getting it right. But somehow over the years as they gain experience and climb rank this seems to lessen. I am still undecided if this is because of a certain level of arrogance setting in (this seems more common is doctors) or whether the other stuff, the paperwork and meetings and targets just means that individual attention and all this "holistic patient centred experience" my local hospital goes on about all the time means that staff with the seniority to actually do something are too busy with something else.

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