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.