Saturday, 18 October 2014

So How Am I Now?

Regular Twitter followers will know that I finally managed to get home on Monday. After all of the tears, meltdowns, loneliness and fear, I finally made it through to the other side.

My operation was last Tuesday and as I explained in a previous post, the worst scenario was that I would wake up with a permanent stoma (many can be reversed in time, but mine would have been forever) and that I would have to be fed into a vein (TPN or total parenteral nutrition) for the rest of my life.

The best scenario was that there would be enough bowel left for the stoma to be reversed and I would only require the TPN a few days a week.

The scenario-that-dares-not-speak-it's-name was that I would never eat again. Somehow my bowel would be so damaged that it couldn't manage anything orally at all.

Surgeon Pimpernell was on call last week, so we knew that was his best chance of fitting me in. Otherwise I would have to wait on what's called the "elective list" for an unthinkable 6 to 8 weeks. I had just 140 cms of small bowel left (most people have 4 metres) and less than 100 cms is "Not viable" Regular readers will know that I always resisted knowing what "not viable: actually meant. Mr Pimpernell said he would have to take 70 cms away, leaving me with just 70 myself.

First Mr Pimpernell tried to fit me in on the Monday. I got to the ward door before the anesthetist decided he couldn't trust when I said I'd last eaten and he wouldn't risk the anesthetic.

I was incredibly frustrated. Us bowel disease patients know very well that we're very likely to be "bumped". Bowel cancer is often such a vicious cancer and in many cases, by the time patients get a diagnosis, it's too late. But being bumped for no reason, being bumped because yet another health care professional decided "he knew best" was almost more than I could bear.

Just as I was coming to terms with my misery, porters arrived again. This time it was about 8pm and I got all the way down to the anaesthetic room before they told me there'd been an emergency. Some poor soul had died in recovery, so was already intubated and unconscious and needed one last shot to save his life. Frustrating though it was, no-one minds being bumped for this.

I was woken up the following morning at 8am by yet more lovely porters. This time, all went well and the next thing I knew, someone was calling my name and telling me it was all over.

If anyone remembers the horrors of post-op pain relief I had at the Other Place, might like to know that my pain pump wasn't quite ready for me to use when I woke up. The loveliest nurse assured me "I'll be your pain pump Sue, you don't have to worry about a thing" He never left my bedside, giving me 10mg boluses until the pump was ready.

After a while, Dave came in looking relieved and happy. He told me to take a look at my tummy. As I peeled back the sheet, eager to meet my new stoma-buddy, I saw there wasn't one there at all! I panicked, asking Dave what had gone wrong. Had they not cleared the blockages after all? Would I have to go back to the pain and vomiting of before? I honestly didn't think I'd be able to bear it if I did.

But no, clever Mr Pimpernell had managed to salvage an extra 20 cms, so in all, I had 90cms left after all. Whilst not quite the metre I need, he thought it was worth giving me a chance to see how I went before I had to face such drastic after care.

So no stoma at all wasn't even an option on my consent form, I felt like an actual miracle had happened. What's more, they wanted me to see how I went with eating before they set up permanent TPN, so I dodged that bullet too.

My recovery has been superb - possibly the best of all the operations I've had. The most remarkable thing seems to be that all the pain and vomiting of before has gone. It's hard to believe, but I already felt better 2 or 3 days after the op, despite all the surgical pain.

So it's early days and I've got a long way to go yet, but things look so much more promising than I dared to hope. I'm convinced that the hundreds of goodwill messages and prayers carried me through, so a million thank yous to all of you.










35 comments:

  1. Fabulous news Sue, I'm so pleased that things turned out much better than you anticipated.

    Take care, Kimmie x

    ReplyDelete
  2. So very, very pleased for you, Sue. I hope your recovery continues to be so positive!

    ReplyDelete
  3. So glad you came through it better than expected...now,hopefully,it is onwards and upwards....and thank God for Mr Pimpernell xxx

    ReplyDelete
  4. That is fantastic!
    So happy things are going well and pray they continue to do so - WELL DONE SUEEEEEEEEEEE

    ReplyDelete
  5. I am so glad to hear that! Here's to better days :) x

    ReplyDelete
  6. Fantastic news Sue, so glad you are home and all went so well, best wishes for a continued speedy and full recovery. xx

    ReplyDelete
  7. Fantastic - so so pleased for and sending healing vibes xxx

    ReplyDelete
  8. Great news under the circumstances! Thank you for letting us know and best of luck for your recovery. xxx

    ReplyDelete
  9. So lovely to hear - keep recovering :)

    ReplyDelete
  10. Tremendous news, and what a massive relief that must be to you. Wishing you all the strength in the world.

    ReplyDelete
  11. What wonderful news for you Sue. Miracles happen. Take care x

    ReplyDelete
  12. Great news Sue, but makes me wonder how much MrsT has of her bowel. I was sure that she had all but 30cm of small intestine which is formed into a j-type pouch. If your surgeon says 1m is a minimum, I'll have to find out how she has survived for the last 19 years!

    ReplyDelete
    Replies
    1. Sorry Tony, you've lost me. Isn't all but 30cms metros and 70cms? Or do you mean that she only has 30cms of ileum left?

      Anyhow, I've always been told you need at least a metre by various doctors and surgeons over the years. If you check with her, can you let me know? Thanks

      Delete
  13. great news sue and lets hope this nightmare you have suffered for so many years is over

    best wishes :)

    ReplyDelete
  14. So pleased for you Sue :-) x

    ReplyDelete
  15. Wonderful news Sue, love and lots of healing thoughts to you. All the best.

    ReplyDelete
  16. That's fantastic news, Sue. I'm so happy for you. I hope you continue to improve and avoid the dreaded stoma for a long time to come xxx

    ReplyDelete
  17. This is just wonderful news, Sue! I'm thrilled for you. Keep going, girl!
    Sarah

    ReplyDelete
  18. I'm so pleased the operation went even better than expected Sue, your courage & fortitude are very humbling and you move me to tears with your tenacious attitude.
    Wishing you well with your convalescence and sending you lots of virtual hugs lol
    A6er@ Britain Isn't Eating
    http.a6er.wordpress.com

    ReplyDelete
  19. Wishing you well Sue, for your recovery. So pleased to hear that you have kept a bit more than you had expected!

    ReplyDelete
  20. Such wonderful news, best I have had for a long time.

    ReplyDelete
  21. Delighted for you sue! Hope you get to your tree soon........

    ReplyDelete
  22. Really pleased for you, Sue, and the best of luck for the future!

    ReplyDelete
  23. I've got a huge smile on my face from reading this fantastic news :) Here's to a great recovery - you and the boys will be climbing trees soon. Healing vibes being sent x

    ReplyDelete
  24. Great news :) and the best of wishes for the future.

    ReplyDelete
  25. Thank you all so much for the lovely comments. It's like having a huge extended family. Well, actually, better than the 8 useless siblings that make up my family. (One's good though, we'll let him off, lol)

    ReplyDelete
  26. Yay! Fingers crossed things will keep getting better. And yay for the one non-useless sibling!

    ReplyDelete
  27. pimpernel he won.t be sent to the guillotine.,.he has done well-so pleased for you sue x

    ReplyDelete
  28. So nice to hear about someone getting some good news! Even a bit teary on your behalf xx

    ReplyDelete
  29. I'm so very glad - may all go well for you.

    ReplyDelete
  30. I've missed having 'Diary of a Benefit Scrounger' in my in-box, but hopefully that should be rectified now that I've signed up again with my new email a/c. In the meantime, I wish you all the best, and hope you will be feeling a bit better soon.

    ReplyDelete
  31. I am so very pleased for you and yours, May God continue to bless and keep you all, 'big steps and little uns..' kidda,

    take Care, Adrian.

    ReplyDelete
  32. Happy news at last you true Trooper!
    Well done to all who helped to care.
    X

    ReplyDelete
  33. Oh my god. I do know from experience that there is nothing more scary than this few moments before operation begins. ;)

    ReplyDelete