Monday, 1 April 2013

So How Am I?


As regular readers will know, 8 weeks ago, I had yet another major operation to free up my petulant and sticky bowel from the knots and tangles it insists on forming.

I had reached the stage of continual vomiting, terrible pain and food and I were waging our familiar battle. Could I get enough of it in - and keep it in - not to disappear entirely? A shadow against the pillows where Sue used to lie?

After months of prevarication, medics and surgeons finally agreed that "something had to be done". The problem this time was what? Was there actually anything a surgeon could cut away, or open up that would improve my life? Or had I reached That Place?

We don't talk about That Place in our house. It is not somewhere we are prepared to go. It is a place without hope, without joy. A place with no food, where I am fed into a vein, perhaps forever. A place where strong opiates get me through the day, fogging my brain, making me anxious and insular, sweaty and itchy. A place where my world shrinks to the four walls of my bedroom, surrounded by vomit bowl and needles and tubes. A place that doesn't accommodate children or husbands or friends. A lonely place of survival.

After the operation, the surgeon was quietly grim. He explained that my bowl has had so much surgery, it just won't work any more. He insisted vomiting and pain and skeletal fatigue were to be my regular companions. Get used to it. Succumb. Give up.

I ignored him, because that's what I do.

But recovery didn't go well. Sure, the pain eased a bit in the sticky places he had unstuck, but the vomiting never relented, as it normally would. My weight didn't creep back up, I lay pale and pinched against supportive pillows, unable to get to the toilet, unable to eat more than a few meals before my bowel refused to play and returned my food to me un-processed. I lay in bed and watched the days drift by, every day getting more and more frightened that Mr Gloomy Surgeon might be right.

Last week, we dragged me out of bed and into the car for my follow up appointment with Mr Gloomy. I couldn't walk, could barely eat, I looked like a skeleton. He took one look at me and pushed my wheelchair gently into his office.

This time he was firmer. See? Your bowel really WON'T work. We've done all we can. You won't put on the weight, you won't be Mum again, you won't be lover, only patient. His prescription? Go home, be fed into a vein, take regular opiates and anti-emetics and antibiotics and maybe (he paused) think about a transplant? My bowel, he said, was just too still, too sleepy, he had no suggestions for waking it up. Get used to it. Succumb. Give up.

Now I don't do giving up. His advice seemed contrary. If my bowel had gone to sleep, surely sitting around in bed all day would keep it that way? Add in regular opiates and it would sleep even more soundly? Stop putting any food in it at all and it would have nothing to even challenge it back to life? Nothing to contract against?

Something in me got angry. If my choices were : Accept more pain, accept you will vomit a lot OR give up and play dead, it seemed to me it was time to man up still further and prove him wrong. If crohn's and it's effects insisted on taking me to a new level, then I would just have to meet it head on and (excuse my language, sometimes it's all that will do) tell it to fuck right off.

So, from that very moment, I manned up. I got up in the mornings, however reluctant my legs were to carry me. I teetered painfully to the toilet, I inched agonisingly around my nephews wedding at the weekend, chatting to family and friends. (Fell on my arse a couple of times)

I googled "gut motility" and invested in a whole regime of supplements and snacks that might help - magnesium for muscle function, zinc and B12 as I'm always deficient in them, ginger essence for vommy moments, acidophilus for healthy gut bacteria. Folates and Vitamin D to improve my energy. Nuts and dried fruit to snack on for fibre and muscle function. I kicked the opiates into touch. Finally, I started a regime of gently building exercise to improve my strength and deliver me back to the people I love.

I ate, however much it hurt. If I was sick, I... well, I was just sick and got on with it. I went back to my kids and my husband with gritted teeth. That Place is not for me. Not yet. Hopefully never.

We always have a choice. Always.

However bleak things seem, however academically and clinically surgeons and medics make their textbook proclamations, we ARE masters of our own bodies and masters of our own destiny.

Will I succeed? Well, it seems to be going OK so far. It hurts. Whoaaaa it hurts. And it's a little hard to hold a conversation down when my lazy, recalcitrant bowel decides to move into reverse, but it's a billion times better than the alternative.

As for Mr Gloomy, I have a plan. It sustains me through the pain and vomiting and makes me giggle. At my next appointment, I will march into his office on stronger legs and in the nicest possible way, flip him the finger. I will be shinier, fatter, stronger and vindicated. I WILL.

And perhaps he will learn something too. Perhaps he will learn that the human spirit is full of miracles. That there really is no such word as can't.

Wish me luck xx





50 comments:

  1. Good luck petal, thinking of you :) xxx

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  2. All the luck in the world lovely lady ! xx

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  3. I will wish you luck, and strength, and fight. Fight hard - because it's what you do. And keep the visualisation in your mind, it will help.

    Ashe!

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  4. Wishing you bucket loads of luck

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  5. Sue, my darling, you never ever cease to amaze me. Thanks for sharing and good luck.xxx

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  6. Keep on, Sue, you're an inspiration to us all. We need you.

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  7. Well done, Sue. I know it's INCREDIBLY hard. I hope if my kids were small and needed me as yours do, I would do the same. But be kind to yourself too xx

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  8. I wish you all the luck & love in the world.

    Sopwith x

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  9. I wish you all the luck in the universe and back and that you have the strength to ease yourself back from the brink. Your friends here, and they are many will be there every step silently supporting you as you go. Xxx

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  10. Thank you all for the lovely messages xx

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  11. You are so brave Sue and I am one of the many with you in spirit throughout this journey. xxx

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  12. You are truly a warrior, and thank you for writing about your battle. People who have the good fortune to be surrounded by healthy family rarely have any idea of the daily struggles of sick and disabled people.

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  13. All the luck in the world to you Sue. You are amazingly important, not just to your own family and friends, but to the 'family' you have out here.

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  14. Wishing you great luck, love, strength and joy (and the satisfaction of being right).

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  15. Sorry to read that your latest operation hasn't been so successful. I sincerely hope your plan to get your gut moving again works. I have severe whole gut hypomobility from ME/CFS and hope you don't mind me mentioning a couple of things that might be relevant (I'm not touting miracle cures, just management pointers). Firstly, if you're in range of Barts Hospital and haven't been referred to Prof Aziz there yet, he's a gut motility specialist and may have some helpful suggestions.

    Secondly - probiotics. I was lucky enough to be prescribed VSL#3 on the NHS for my gut motility problems - my PCT refuses to pay for them now, but they are the only prescription grade ones AFAIK, they're way more powerful than OTC stuff. Also they don't contain FOS. Avoid probiotics with FOS at all costs, they can make things worse. There's a new probiotic being trialled for gut motility disorders (I think at Kings College Hospital) that's looking really promising, it's called Symprove and is available on Amazon, but it's powerful stuff and I've not plucked up the courage to try it yet. The other thing that's helped my gut is the FODMAP diet, which reduces the intake of fermentable carbohydrates - I put on a good few pounds pre-ATOS hell following that and am back gaining again now. It's only available via gastroenterology dieticians at teaching hospitals though, so again, you'd need a referral to a FODMAP trained dietician.

    Please excuse my impertinence, all the best x

    Barb (@poorlypleb)

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  16. So much in there that is very familiar to me and probably to many who are reading this. Kick its ass Sue. Kick its ass up between its ears. I hope the look on Mr Gloomy's face will be exquisitely astonished when you prove him wrong!

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  17. I wish you all the luck in the world, Sue. If anyone can do this, you can xxx

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  18. My hubby did say when he watched you on tv "is that the lady in hospital so ill" errrrr "yes, and actually that's how we go on too" trying, doing our best to be in best of health, he looked a bit puzzled" yep a lot of work goes in to getting yourself to best possible shape! So really pleasing to see you and thanks for passing on tips on how you ve done it.....cos sometimes we do go to those sinking places.
    The most damaging thing of not staying in them places is you go to ATOS and they say "your better now" and the re assessments, appeals asking decisions to be over turned puts you right back in a confused grim state. This is where the most damage is done .......so well done and soldier on.
    Think lots of people have fallen of ESA and arrived in Jail Cos they know its a better place than endless assessments and sanctions. Only a thought.
    Now I'm going to read your poems. Yes disability needs defining.
    Thank you so much Sue and onwards and upwards with chin up!

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  19. Good luck and much love x

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  20. Barb - Thank you so much. I'll give it a good look. Only slight problem is I have to be so careful with the crohn's stuff, it's hard to fit other diets around it - though I checked out the FODMAPS and many cross over. Certainly worth knowing about. xxxx

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    1. Good luck Sue the mind is the strongest tool and yours is in pretty good order! X

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  21. Wishing you all good things, and hoping that things improve for you. Hugs from Liverpool.

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  22. 'Bring it on'attitude escapes me every now & then too, for a wee spell of Sue....then a bout of self pity comes on....followed by Feck this!!! You are a fighter GO GIRL!! X

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  23. Lots of good wishes - you are a shining example of human spirit.

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  24. Sue, your posts are always inspiring and humbling. Your determination and courage are a lesson to us all. Your words should be published on posters up and down the country so that those with little to worry about understand what others have to go through. Little strides work wonders. Just found I could walk the dog with him attached to my mobility scooter. Was without scooter for over a year as we couldn't afford a new battery until recently. Having said that, lead got caught up in front wheel today and I had to ring for help: one step forward, two steps back. Hope the image makes you laugh. Carpe diem and power to your elbowI Take great care. You have my unending support.
    Sarah

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  25. wishing you the very best of good luck. and looking forward to that "i flipped Dr Gloomy the bird" blog post!

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  26. Hi,

    I hope you don't think I am speaking out of turn here, and I don't know an awful lot about this, and I may be talking nonsense, but I was wondering, if one of the major issues if gut motility, is there such a thing as a gastric pacemaker? Have you had an EGG to measure the actual electrical activity of your digestive system? Just a thought,
    Keep fighting
    xx

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    1. That's actually v clever of you, there ARE stomach pacemakers. Sadly, I haven't heard of any for a whole bowel, but you never know? I'll look into it Thanks x

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  27. I wish you so much love & luck Sue. You are so strong & positive, such an inspiration. Love @greeneyedlad xxxx

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  28. Ah, good luck Sue. Your remarkable spirit will carry you through. Kick its ass, then tell us about the look on Mr Gloomy's face ;) Go Suey!!
    Take care Lass xx

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  29. Wishing you even more strength, courage and love in your constant battle. Thank you for sharing your life and being such a positive inspiration,

    Kind regards & much love,
    Lorna xxxx

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  30. love and prayers Sue! You deserve all the luck and love in the world. And thank you for being so positive. Taught me a lesson!

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  31. And here I was feeling sorry for myself today because I've got the lurgeys.

    Sue you are a MASSIVE, MASSIVE inspiration and I wish you all the love, strength, energy and positivity you need to pull yourself through this. You are far more important than you could possibly imagine.

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  32. God bless you Sue and your bravery against all the odds! You have been an inspiration to me to try to fight these bastards all the way. The country is very angry and it's blogs like this that the govt are afraid of.

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  33. Your comments are so lovely everyone, thank you so much for all the extra strength they give me xxx

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  34. Hi Sue,

    Inspiring blog, thanks for sharing your thoughts and battles.

    I realise that its a struggle for you to eat at all, but have you examined food intolerances? I'm sure you have, even so, here's a decent blog on a fellow crohn's sufferer who is attempting to improve his condition through diet: http://cavemanforcrohns.blogspot.co.nz/2013/01/introday-1-of-whole-30.html

    If I was to recommend one book on the subject, it would be this one: http://www.amazon.co.uk/It-Starts-Food-Discover-Unexpected/dp/1936608898/ref=sr_1_1?ie=UTF8&qid=1364979431&sr=8-1

    All the best.

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  35. I wish I had some advice but I don't, only a message of support, but that has to be better than nothing! You're a fighter, you've proven that over and over, and I am rooting for you completely. You honestly are an inspiration, and an amazing figure to look up to.

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  36. Oh hell yeah! Kick its arse!! We're all rooting for you in this house.

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  37. You're amazing. Good luck! Kate xx

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  38. Best of luck Sue. Just a thought echoing MattM76 above: have you tried gluten/wheat-free diet? I had all sorts of evil symptoms for years gradually worsening. Turned out gluten was causing a lot of them. You actually have withdrawal pains at first though, so best to try exclusion diet with help. Try googling GlutenFreeGuerillas group on HealthUnlocked or FB.

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  39. You **rock**. Was very pleased to see you setting the record straight on Sky TV re DWP latest fibbing statistics. Your new remedial diet seems to really suit you. Was pleased to see you looking so well. Can recommend a really good book called The Kitchen Pharmacy by Rose Elliot & Carlo De Paoli, which is full of lovely remedies in the form of delicious meals.

    Take care

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  40. Feel the love and gratitude from thousands of people you will never meet Sue, but who you have helped and informed and prodded into political action they would never have felt able to undertake. Good luck and go well... bx

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  41. I have only been back on Twitter for just over a week after a year or so that I was just not well enough. I thought I would never remember the people I had spoken to previously but as soon as I had re-registered I saw your name and instantly recognised you. Your blogs are always amazing, your fight and kind soul is truly inspirational and I admire you greatly. You are one gutsy lady with hundreds of people rooting for you. If anyone can strut back into Dr Gloomys office and prove him wrong it is you!
    I would like to take this opportunity to thank you for all the campaigning you have done on behalf of other vulnerable people. Please remember to reserve some strength for yourself to give your body a chance to heal and to spend time with your own family as they need you too.
    Taking all the vitamins and minerals is a good idea. I am in my 2nd week of a megavitamin/mineral and herbal therapy and it has really helped me too. I hope it continues to help you and give you back the strength and life you need and deserve.
    Anyway Sue, keep smiling and fighting; you are a truly inspirational lady who deserves a medal for the work you have done for others. I hope to have the pleasure of meeting you one day.
    Take care
    Charissa xx
    @body_broken

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  42. Wishing you all the luck in the world, if anyone can do it you can xxx

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  43. Best of luck Sue! Will be thinking of you and praying for you.

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