Monday, 22 October 2012

Surgery next week :-(

Ugh! there is no other word for it. Major setback.

This blog was always meant to be a positive record of my journey back to health, fitness and hopefully competitive sport. To provide others, who might be going through the same thing, with some hope and encouragement.

It was never intended to be a boring account of my ongoing health issues. But then I never thought I'd face further complications and more surgery :-(

My cry of 'When I'm better.. I'll be able to do XYZ' (was I really thinking I'd be able to run the London Marathon or cycle from London to Paris this year?) is getting a bit tired and I'm even beginning to question it myself. I got as far as a 10km, a sprint triathlon and the longest bike ride I managed was 40 miles..

This has been going on for two and a half years, on and off, and frankly I'm beginning to wonder if I'll ever be 'back to normal'. To be fair though, we don't really know why this stoma has gone 'wrong'.. and the surgeon won't know until he goes in. Most people with a stoma don't have these complications.


Mmmm... Lunch! again...
So.. One week today (29th October) I'll be back in the Operating Theatre having a major abdominal surgery. New surgeon, different hospital (Princess Grace in London - which I have to add is really rather nice!), my FIFTH operation. It's taken a while to get to this stage as I've had a number of tests and consultations with various Professors and surgeons. It seems I'm rather 'complicated'.

For the last 3 months I've been existing on liquids, boiled sweets, sugary tea and soups. I literally can't eat solid food. Every time I do I get a partial obstruction in my small bowel. My stoma has basically become narrowed to the size of a 'pinhead' with a further section of 15cm of kinks and twists behind it. No wonder I can't eat! I've lost a total of 20lbs in weight and to say that things have been a 'struggle' would be somewhat of an understatement.  

Basic things like cooking a meal for my family and then disappearing with a Ensure prescription milkshake, whilst they all eat is frankly grim. Work, training and coaching has taken a hit and it's as much as I can do to take my group for a wobbly 2 mile run and then collapse when I get home. My own 'exercise' regime has reduced to a slow shuffle with the dog. Only last week I walked 6 miles (a little bit too far if I'm honest! but we were chatting) with a friend and was so exhausted I could barely speak a coherent sentence at the end of it.

I've been turning down work for weeks knowing that this is coming and frankly I haven't got the energy to do much at all. Putting on my public 'game face' is something I've become scarily adept at. Everyone keeps telling me how 'well' I look. Nice of them to say so, but appearances can be very deceptive. No-one can see the internal struggle.

I'm simply hanging on by a thread and surgery can't come fast enough. 

This new (and frankly amazing) surgeon has some interesting plans though. He's not happy to just 'fix' the stoma. He's being incredibly thorough and wants to work out why things didn't work before.. and more to the point try to fix things, reconnect me and get rid of the bag altogether. And just as I'd accepted I'd have a stoma for life... Errr?!?! 

He won't really know until he gets me in the operating theatre, but the plan is to do a full top to bottom incision which will allow him a better view than with the laparoscopic surgery I've had so far. Without going into too much detail, then there are a number of options and I have to put myself in his hands and trust him to make the right decision whilst I'm out cold. I may come out with a fixed stoma, a temporary stoma or a full reconnection and no bag at all. And that could just be the start of it. If I have another temporary stoma, I will need a 6th operation to reverse it in a few months time. Try getting your head around all of that!

So I'm in a strange place at the moment. A combination of being absolutely petrified, overwhelmed, excited (at the thought of being able to eat again) and relieved that I'm in such good hands. 

I'm so lucky that I've got such an amazing family, hubby and group of friends who have been such a source of support and love throughout this whole ordeal... and continue to be so even though it's utterly, utterly boring. Most people would have 'unfriended' me months ago! I couldn't get through it without them and I know that their support will get me through this next stage. My running group in particular is just wonderful, it's what I live for really and I'm going to miss them so much whilst I'm away. Luckily I have some super coaches who can keep it going whilst I'm gone.

So wish me luck.. and see you on the other side. This one could well finish me off for a while. With a bit of luck I might be able to eat by Christmas :-)

4 comments:

  1. Oh Sarah what an ordeal. I know I'm not coming to the group anymore but please know you are in my prayers xxx

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  2. Sarah, I only discovered your blog today and read through every entry. I was looking for encouragement as I'm going through a partial blockage at the moment and have been somewhat down. So many of your experiences seemed familiar to me. Working hard to regain strength with some success but having to accept a new normal, not a bad one, just different. It's been hard to accept that my body, which I believed I had treated well, has in a way turned on me (I'm referring to the whole auto-immune aspect).
    Want you to know that my thoughts, prayers and good energy are with you as you approach this new surgery. May you have a good outcome, be back soon with family and friends, and when you are stronger and back into your active, busy life, I hope you will continue to share your story.
    Thanks much, Ana in California

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  3. PS: I wanted to add that I was so sad to reach the blog where another surgery is necessary! I know your inner strength and strong support system will get you through!

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