Monday 25 October 2010


Well, it's 8.27am. I suppose I will notice 8.28 and 8.29. The minutes will crawl by oh-so-slowly until I actually have to check the clock hasn't stopped.

Last night was a bad night. I got pain at about 6pm and it niggled and burrowed and griped and spasmed it's way through the night until this morning. I couldn't sleep and when exhaustion came I dreamed of pain.

When I said pain, it's a bit like I said nothing at all. Pain is like love or fear, it is a word totally shaped by our own experience of it.

Just for a moment, try a little experiment. Remember for a minute, the worst pain you ever felt. Maybe it was a broken kneecap, a kidney stone, sciatica or giving birth. But can you really remember it? Really? The body is an incredible, often magical thing and we are programmed to forget - if not, who would ever have more than one child? If you're truly blessed, the worst pain you ever felt might be a terrible headache or a sprained ankle.

In hospital they use pain scores. Every few hours a nurse will take your blood pressure, your temperature, your pulse and ask how you would score your pain out of ten. What kind of measurement is this? How can I score my pain out of ten when ten for me has been screaming delirium? When ten has been waking up from major surgery with no pain relief whatsoever? When ten has been just moments before my bowel burst and would have killed me? My ten might be your 73. I could be 9 cm dilated after 40 hours of labour, but I'd have to give it a seven!!

When I first got sick, I remember the doctor thought it was salmonella. He was sympathetic and kind, sent me home to bed with a clutch of treatments and a list of advice - drink plenty of fluids, eat dry toast, rest. I writhed and vomited, but it didn't go away. A few days later, the doctor was less sympathetic and after a fortnight, he really wasn't interested at all. I remember being taken aback - how would I survive? What was he going to do next? Why was it less worrying than the first week? The answers respectively were "You just will" "Nothing" and "Because I don't know what else to do."

So the weeks turned into months and the pain got worse.

It dulled my mind, I sat constantly with my knees pulled up to my chin, I avoided walking and I was always irritable. How could something feel this bad and not kill me?

Every now and then, a doctor would come to my house on a particularly bad day and shove a needle into my bum. Just a few minutes later, a warm, enveloping relief would flood through my body and the vice-like grip would release, slowly, slowly until I couldn't keep my heavy eyelids open any more and I fell into a euphoric, grateful sleep. I never knew what they gave me, but I often cried tears of sheer relief.

Over time, the unthinkable happened. I sort of learnt to live with it. Had it got better? No, it got steadily worse, but I was vaguely alive and you can't stay in bed forever. Slowly, I started to do more. I walked a little further, I found a smile to paint on. I went back to school, I got a boyfriend. If my friends wanted to go for pizza I went too, ignoring the red-hot stabs in my gut, rushing to vomit a while after as my body rejected the intrusion.

Slowly, people forgot. Not my Mum of course who held me night after night into the small hours as I cried out in pain and vomited until morning. But "people". When I said I couldn't go to this party or couldn't attend that class, they started to tut or raise their eyebrows oh-so-slightly. Human nature just will not allow us to believe that we could be that ill and survive. Even doctors start to look doubtful or cross. They ask if paracetamol helps and you look at them as though they must be speaking a different language.

And this is the big problem with pain. Once you've got it, there's very little you can do about it.

I imagine I just lost a few of you there. Of course you can do something about it. There are a whole host of painkillers, surely? Well, no, not really. There are low level painkillers like paracetamol. Usually as useful as trying to mop up the ocean with a sponge. Then there are NSAIDS - Non Steroidal Anti Inflammatories, such as Ibruprofen or Voltarol. The problem with these, is that they cause irritation of the stomach and few people can tolerate them long term. Someone like me, with a bowel disease can't take them at all as the bowel is so damaged and thin and weakened, they might cause bleeding or perforation. So that just leaves opiates - Codeine, Morphine Oxycontin or Pethidine and doctors hate these with a passion that is so deep (if often irrational) that they are out of bounds. Fine for an acute problem - a broken leg or a slipped disc, but a no-no if the pain is likely to last. They're addictive you see, and doctors live in terror of producing a junkie.

And here is the staggering, unbelievable point I have taken so long to get to. Most people in severe and chronic pain get no help at all from their doctors. Most people with Crohn's like me don't get pain relief. Most people search their whole lives for a doctor who will care or help or understand, but they never find one.
I got "lucky." Because of the surgical nature of my condition, there is something physical that a doctor can relate to. When my bowel gets blocked, it is called "obstruction" and doctors realise this is agonisingly painful. After 13 years of just putting up and shutting up, a new GP took pity on me and started writing scripts for a strong opiate painkiller. He trained me to give it by injection for times when I couldn't keep tablets down and my life changed overnight.

For the first time in over a decade, I had some control. I didn't have to just suffer, I didn't have to face long, lonely nights of desperation, never knowing when it might stop. I could plan things - holidays, appointments, parties and know I would be able to go. But what I didn't realise was, I had opened up a whole new problem that would hurt me and crush me almost as much as the pain.

From that day on, it was never about the pain. It was about the drugs.   To be continued......

**For anyone who relates to this post, PLEASE consider sharing your stories in the comments section here The more voices come together, the more we are able to fight


  1. Sue - I hope you are OK. I have seen you put that smile on and pretend everything is OK, while sneeking off to be sick and I am amazed at how you do it day after day.

    I suppose that's the difference between having a life and a disease and just having a disease.

    Love, Corinne

  2. Thanks for sharing this - having just gone the night unable to sleep because of niggling discomforts (although I suspect that my familiar niggling discomforts may be another's pain),this puts my own recurrent and persistent pains into perspective - but I can genuinely say that I understand your point about painkillers.

  3. Thanks Corinne. Very few people know me like you do and most would probably be astounded if they know how sick I can be.

    We miss you, lets catch up before Xmas (If we arrange something, there's at least a chance it will work. Never a good idea to leave such decisions to Gemini men) xx

  4. Hi Sue, if you don't mind me asking, in my ignorance, what is the long term prognosis for your condition ? Are you able, due to medical developments or treatment improvements, to look ahead to a brighter future, or are you simply managing tenaciously and with admirable stoicism, day by day, week by week, until an improvement occurs ? I'm sorry to sound stupid, but I thought I would get the info from the 'horses mouth' rather than Google. By the way, I love horses and use the metaphor in the friendliest possible way. :-)

  5. Hi Ken.
    Crohn's is progressive. Sufferers die younger and are 5 times more likely to develop bowel cancer. The one thing I have to be thankful for is that remission can come about out of the blue for no apparent reason and hypothetically I could be well one day.

    I've never had a remission in 27 years, but I like the thought that the hope is always there.

  6. Sue....Thanks for that. If there was a God I'd say a prayer for you, but in the absence of a sensible deity, can I wish you extra strength to continue your battle, and I'll have a little bet that you're odds on to win your remission. :-)

  7. Sue - I recognise your experiences with my daughters' ME.

    When my eldest had a burst appendicitis, she couldn't understand why the doctors were so frantic because the ME pains that they had ignored for years had been so much worse than the appendicitis. Even through the anaesthetic haze, her first words were amazement that the doctors weren't telling her that there was nothing wrong and implying that she was making it up.

    My youngest at 10, vomited for a week and was unable to sleep for more than 45 minutes at a time, because of the stomach pains. I had every GP in the surgery out. They didn't believe that she hadn't eaten or drunk anything for a week, and told me that I looked worse than she did! Eventually, one reluctantly admitted her into the children's hospital (the Alex!) because her pulse rate was 130. The staff at the hospital were clearly bewildered as to why she hadn't been given pain relief.

    At 12y, middle daughter was unable to crawl to the loo because she was too exhausted, and her legs and back hurt too much to walk. She just lay in a totally dark silent room, unable to cope with any noise or light. I phoned the GP to find out where I could get a wheelchair. I spoke to a GP who had not seen her for 3y, and he said "but we think this is psychological". She is still ill 13 y later.

    In our case I assumed that, the disregard for my children's pain was because the psychiatrists (Wessely et al) had succeeded in persuading the medical establishment that ME was a somatazisation disorder... but to ignore the pain of a so-called objective disease such as Crohns beggars belief!

    Take care Syzygy

  8. Sue,

    An interesting read, I learn all the time. Is there another operation due soon? If and when you get them, hwo long is theperiod in between before things start to worsen again? Thanks.

  9. Syzygy - My Mum could have written that word for word. The longer you're around the system, the more you begin to realise that almost everyone you meet has a story of negligence so shocking you'd probably think I was making them up. The system is so totally flawed.

    Eoin - It seems to be around a two year gap. I had my last surgery 18 months ago and from where I am on the illness cycle - ie injections not tablets, pain every day rather than now and then that it probably will be around 6 months away.
    You always get to the nub of things Eoin. Effectively the cycle might be
    1) Operation
    2) Recovery - 6 weeks to 6 months. (Last time I had a stroke after surgery, another year a massive seizure so obviously these set any recovery back.)
    3)If I'm lucky, I suppose it's around 3 months that I feel fine, then I slowly start to notice those staircase steps again.
    I have to become critically ill before they can operate, but then I'm too underweight to operate on!! Isn't that total madness? So roughly 6 months of feeling dreadful until I become acute enough to treat!!!
    Over the months, I think I'll be telling a lot of stories that would make your hair curl.

  10. ** In case anyone with crohn's is reading this and hasn't been long diagnosed, I'm probably frightening the life out of them, but they should know that I have a rare type of Crohn's that is not typical. It's not like this for everyone, honest.

  11. Sorry Ken, I should have added earlier that there have been enormous strides made in the genetic side of Crohn's over the last decade. It is a sister disease to Rheumatoid Arthritis, so we benefit from research done to develop treatments for the much higher profile condition.
    My consultant is arguably the best bowel disease research doctor in the world AND Cambridge is the seat of the human genome project, so I'm in the very best hands :)

  12. Hi Sue - I think you know my wife Lisa from the pharmacy. As a fellow Crohns sufferer I can relate to what you're going through and I know its not easy. I'm also on Humira and although it worked very well during the initial stages I've had a bit of a setback as my fistula's have re-opened and my stomach's really red and sore (hopefully nothing to worry about). I do understand the pains you're experiencing but I don't suffer every day, in fact most of the time I eat well, feel good and work. Saying that I only have 250cm of my bowel left (following numerous operations - so many that I lost count after 15!)so I can only assume there is less area for it to become diseased. Like yourself I had to go in search of a specialist centre but I'm so glad I did - they are fantastic as they speak to you at your level and are on top of the latest treatments and techniques. I feel so much safer than I ever did at the local hospital. I can also understand your comments about finding the right doctor and pain relief. Fortunately for me I'm only in this pain that you're describing when my bowel's about to obstruct - so bad last time I thought my stomach had exploded (and that's no exaggeration).
    Fistulas are the bain of my life; I just wish they would heal.
    I agree that every Crohns patient suffers in different ways - some more than others. I too am waiting for that long remission.
    I do hope you feel better soon and that you can get back on top of things - unfortuntely I know it can take time and patience. Not always easy when you're in so much pain.
    Good luck.

  13. Andy! Lisa an I have been discussing your fistulas for years, lol
    I hope Lisa passed on the message about the dose of Humira you're on and that my consultant assured me it was very unusual for it to stop working.
    Hopefully a slightly higher dose and you'll be back on track.
    Keep reading the blog - I'd love you to comment now and then if you relate to any of the crohn's stuff :)

  14. Syzygy - You're on fire on UKPR tonight, great stuff!

  15. Sue,

    Well if you dont mind I'll start saying a wee prayer that you get critically ill soon! :) :)

    All in favour say aye! :)

    The sooner we you back fighting fit the better for your three musketeers at home (including the hubby) and us crew on here...

  16. Sue,

    Oh and YouGov tonite

    42 blue
    39 red
    10 yellow

  17. Lol, I think I'll carry on being careful what I wish for.

    YouGov? 39, 41, 9 :)

  18. Sue,

    Rebecca said she'll set up one of those accounts, when she figures out how... her prediction tonight is

    41 blue
    39 red
    11 yellow

  19. Sue - Thanks for the words of encouragement, and I can just imagine that your mother and I would recognise a lot of shared experiences.

    Glad to see your interactions with Eoin ... and don't push yourself too hard - being in pain is exhausting.


    PS 39:40:10