Wednesday, 1 October 2014

So How Am I?

A bit like a Mum who doesn't want to tell her kids Xmas has been cancelled until Santa actually confirms it himself I've been putting this post off.

Most of you know I've been in hospital for 4 weeks so far and though I've gone into great detail about the patient care and various other aspects of NHS life, I've stayed intentionally quiet about what's going on with me.

I'm afraid the news isn't good. In fact news doesn't get much worse for a bowel disease patient. My sulky bowel has finally given up the ghost almost entirely. The metre or so left has gathered in a clumpy mess, never to be prised apart. If they tried, I would almost certainly perforate in several places, leading to sepsis and even death. The surgeon just wouldn't be able to guarantee he'd spot all the leaks. Bits that should squeeze have gone to sleep and bits that should sleep try to squeeze. Some bits are all narrow and impenetrable, others all distended with the pressure of blockages.

If I wasn't experiencing symptoms, they may have just left it to it's clumpy recalcitrance, but as I'm pretty much in permanent writhe mode, and have qualified to represent GB in the vomit Olympics, it's just going to have to go. Next Tuesday.

Normally, they'd cut the chunk out and join up the ends, but, well, I've run out of ends. There won't be anything much left to join TO. What's left of my colon isn't in bad shape which is something, but the slightly more crucial ileum will be no more.

So, that means a permanent stoma and being fed into my vein for the rest of my life. My medics seem to think there is an outside chance that enough ileum will be left to reverse the stoma at some point, but my surgeon was less optimistic, and let's face it, he's the guy with the scalpel. My medics also hope that the IV feed (TPN or Total Parenteral Nutrition - we might as well all start getting used to the term) may not have to be permanent or at least, I may get away with a few hours at night or even every other night.

I can imagine it's hard to believe that I've met this news fairly calmly. I have this feeling most of you reading this will be much more upset for me than I am for myself. But to be honest, the pain had become so constant and intolerable and the vomiting so grueling, I'd probably offer an arm too if they told me it might make it stop. It's not like I haven't lived with the knowledge for years that a stoma would be on the cards at some point, and I've known for a long time that the next chunk to go would probably tip me into "not viable," that cold term I'd tried for so many years not to ask about.

So don't cry for me lovely reader, the truth is I'll soon be freer.

This might give me a chance to get rid of all the pain - with a bit of luck and a following wind, maybe even for a long time. It should stop the vomiting and I certainly should be able to put on weight at long last with the IV nutrition - that might mean I even get a chance to get stronger.

A chance to climb trees again with my boys, play frisbee in the park, climb to holiday adventures on sunny mediterranean hilltops.

And if all of that doesn't cheer you up, if I've managed to make Ian Duncan-Smith's life this miserable at death's door, just imagine what I can do with a new lease of life.

38 comments:

  1. You are an amazing woman!....you have gone through years and years of pure agony to end up with no other choices left.....BUT.....if this eases your pain and hopefully lets you get stronger and live a better life....then I really hope it works for you.....and yes....I soooooo want to see you showing IDS what a healthier Sue can do...you go girl xxxxx

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  2. Sue you are so amazing. You are a wonderful person to look to when you say 'putting a light on it' You always think of others before yourself <3

    I do pray that this brings you some relief of pain, and that you will be free enough to do more things - Have fun with your family and make IDS's life MORE unbearable for the atrocities he is doing! I hope your recovery goes fantastically and that you are on to a new road and in a better place - And - OUT of hospital!


    *We are all holding your hand through the bad bits and all cheering you on to the roads ahead of better stuff* :-)

    Love be with you

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  3. All the best with the surgery.

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  4. I hope the surgery goes well and the pay off is a healthier you. I can't imagine what you are going through. Amazing that you have gone on writing and fighting. I think there are a lot of people cheering you on!

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  5. Time to take that leap. Be strong and get stronger! You deserve a rest, but oddly I know you won't take one. I've not met you but I feel I know you ... *gentle hug* and my Best Wishes.

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  6. I hope it goes well best of luck and good wishes !

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  7. I had a feeling this was what you might be telling us after your post a couple of weeks ago. I hope so much that this will give you the chance you deserve, to live your life and to enjoy it. I know its radical and life changing and in no way what any one would want but if, as you say, it gives you some 'normality' to spend time with your kids and to go on holiday and to gain weight and muscle mass again, it has to be a positive. As for kicking politicians butt when you get home.... Just imagine how high and hard you will be able to lift ur foot with all that muscle back in your legs ;) Seriously though Sue, I wish you a successful surgery and a speedy recovery time so that you are soon back home with those wonderful children and your amazing husband. You deserve your happiness sweetie. xxx <3

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  8. as always sue thinking of you and hope all will go well and the nightmare will soon be over

    best wishes :)

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    1. Hugs Sue, thinking of you and sending healing thoughts. V xxxx

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  9. I wish I could even aspire to your incredible bravery in such adversity. I wish you all the luck in the world, and hope your surgeon(s) pull everything possible out of the bag to make the outcome the best it can possibly be for you.

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  10. Just to let you know we will be thinking of you and yours and keeping our fingers and toes crossed that all goes well. Xxx

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  11. Even though I was a complete stranger Sue, you gave me the strength to fight on when I was completely spent. For us Northerners who don't want to burden our families and have withdrawn from the medical professionals the time you gave me at a critical time is the reason my four beautiful children still have a Dad. So all I can say is I will pray to God, Allah, Buddah/anyone who will listen to return the favour. Best wishes Andrew

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    1. I did? Well that's my favorite thing to hear in the whole world. So glad you kept fighting

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  12. Love and hugs and all the strength I can send. Xx

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  13. My thoughts and prayers are with you Sue - you'll be fighting fit in the not so distant future. Your family will be whole again and fun will begin with a huge "F" :)
    As for IDS, go get him!
    Bless you - xx

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  14. Oh my lovely. I wish you all the love and luck and hope you have the chance of some "normal" pain free life. Ive got surgery in December. Lets make a date to meet for cocktails(I know a doc who can probably make that possible) hugs and more hugs and an end to the vomiting and pain.xxx

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  15. Big hug .. bummer but no doubt best for you and yours. I know how much you love good food and champagne but climbing trees and chasing the boys (all three of them), is even better !

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  16. Hey Syzygy Sue. The first question I asked and only red line I wouldn't cross was "would I still be able to eat for fun and enjoy the odd champers, lol. You know me so well! And yes, I shd be able to, so yay.

    Bobbie - me and you, the Dome cafe ( morphs into cocktails after tea) December. DEAL!

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    1. That's brilliant news - couldn't imagine you without some champers on hold :)

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  17. Will be thinking about you, lots of hugs. x

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  18. Living with chronic pain I understand how you feel and wish you all the best; the positives outweigh the pain and as you said you will be stronger and once again able to run and play with your children. I will keep you and your family in my prayers. xx

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  19. If it helps any, a friend with similar situation while it was a challenge at first, once they got into the swing of it, it really was a new lease of life.

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  20. This news is terrible and yet wonderful. I know you will focus on the positive side of it. Very best wishes with the surgery.

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  21. I remember you talking about this possibility 13 years ago. Clearly, you have been preparing for this day for some time. I just wanted to say how amazing it is that you’ve held it off for so long. It seems to me that this day would have been many years earlier if you hadn’t taken charge of your care.
    I know that you have fought tooth and nail - you became your own medic (even if the others don’t recognise your competence), you found the right surgeons (I recall you finding a surgeon doing stricturoplasty long many doctors even knew what that meant), you followed the diet so carefully -and they’re only the things I know about.
    So although it might be an odd time to say it – well done. Those many years you’ve dodged this operation are an achievement. You don’t set out to be inspirational, but you are.
    Thinking of you, Corinne

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  22. Good luck and best wishes.

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  23. It is amazing how one can come to terms with things. Best wishes and best of luck, Sue.

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  24. Best of luck flower. Giving up the fight isnt optional! Thinking about you Warmest regards and love Ali

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  25. Hi there Sue, take heart. My daughter had a similar op in 2006 after many many years of pain and trauma due to Crohns, numerous operations, three of them life threatening, more temporary stomas than I can remember. Since she had what was left of her bowel removed (according to the surgeon, it was 'like tissue paper', and just dissolved in his hands) and been on TPN her life has changed dramatically. She has never been fitter and she now works and lives a full life. She was trained to administer TPN herself and is a member of the support group, PINNT. After starting off with a backpack and 24/7 TPN she is now down to 4 per week, at night only. Her body can cope with small amounts of food and liquid so she can go out with friends and lead a normal life, she's put on weight and looks fabulous. I really hope it works out for you too

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  26. Wishing you all the very best, if anyone can get through this it is you. x

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  27. Remember when I told you what an inspiration you are? Well you are.

    This is the beginning of your new life and you deserve to be fit and well and yes, you deserve lots of champagne.

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  28. Prayers and best wishes to you next Tuesday. Get better soon

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  29. I wish you lots of love and luck, and if this alters your life for the better, then it will be worth it.

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  30. Lots of luck Sue, I wish it were possible to make clear just how many people are thinking of you and wishing you well.

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  31. hope this will improve your life sue...please just chuck some of your positive gutsy thinking this way...your one hell of a gal...and yes making tories miserable is something to aim for lol... from, another sue x

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  32. Wishing you well for a successful op and a wondrous tree to climb afterwards......
    (If IDS had any sense, he would be quaking - but, as we know, he doesn't.......!)

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  33. As inspirational as ever - hope the op gives you back some freedom from the awful symptoms and makes your dreams of tree climbing and all the rest come true xx

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  34. Dear Aunty Sue, sending you such love in abundance.We know you'll get through this stronger than ever.We will be, as ever, thinking of you & sending healing thoughts.Hugs from Jess&Stew&Bump

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