What life’s really been like since having reversal surgery

Over the past two years, I’ve written little bits here and there about my reversal surgery in a number of articles, but I’ve never actually written a full run-down of what’s happened since getting rid of my stoma. 

For a blog like this, I think it’s vital that I do so for people who may be finding it in hopes of searching for some advice or past experiences. Though for those people, I’ve got to admit my experience has so far been a negative one – but it’s good to remember that everyone is different.

I underwent the knife again in October 2015. Basically, the operation consisted of putting me back together. They pushed my small intestine back inside of my stomach, cutting through my stomach muscles, and attached it to my rectum. This is called a ‘straight re-join’ reversal.

What this means, is that with no colon – which is there to solidify your poo and hold onto it – my digestive system works very quickly, and the stool is unformed. Yep, you pretty much have diarrhoea for the rest of your life. Fun.

When I was told this, I wasn’t that bothered. I’d had so much trouble with the stoma – including constant leaks and burnt skin – that I was willing to give anything a try. Especially as I’d been told I’d likely only use the toilet between 2-3 times a day anyway, which was much less than the amount of bag changes I was having to do per day.

As mentioned in a previous post, the surgery took a lot longer than expected. One hour turned to three, and a three-day stay turned into two weeks.

Over the two weeks in hospital, I was very ill. I couldn’t eat for the first part, as my digestive system refused to work properly. Everything I attempted to eat wouldn’t digest and therefore I spent a lot of time vomiting. As I’d had a stoma for the best part of a year also, it took a while for my bowels to re-adjust to ‘normal’ life, and so for the first month I was pretty incontinent – which didn’t make me feel very nice.

After the blip in hospital, however, the recovery was pretty quick. The surgeons hadn’t stitched up the hole where the stoma used to be, as it needed to heal from the inside, and so it was pretty weird to be able to see into my stomach for a while, but apart from that, I felt fine.

I was having to use the toilet between 6-8 times a day, but I assumed my body would adjust over time and things would eventually slow down.

With this in mind, I decided to go back to work. Now, my work is a bit tricky. I live in West Sussex, and I work in London. Unfortunately because of all my health problems I haven’t been in a position to re-locate to London, and so I’ve always commuted. This has worked fine in the past, even with a stoma bag, but with my reversal things were made very difficult.

I’d be up early, needing the toilet as soon as I woke up, and then I’d end up needing it again on the train, and then when I arrived to work, and then again and again, and so on.

Soon after getting back into work I developed ‘public toilet fear’ – aka a fear of going to the toilet in a public bathroom.

This fear stemmed from several occasions while on my lunch break, where I have actually been confronted by several people for taking a long time in the stalls and for using the disabled toilets despite having a radar key. Because of this, I struggle now to use them which leaves me feeling incredibly blocked up and in pain – one time I became so blocked up that it actually caused an intestinal blockage.

Over time, the need to use the toilet excessively started to make things even harder, and by the time I’d reach the end of a working day I’d be in an excruciating amount of pain, to the point of actually collapsing upon arriving home.

It didn’t matter what I ate, what I drank or how much medication I took, my bowels refused to re-adjust to life without a stoma.

Eventually, my surgeon referred me to a physiotherapist to see if they could help. This was a three-month process of which I had to take off of work to avoid travel messing with the routine. However, sadly this didn’t work out and I was left with the same symptoms as before.

Since going back to work in February 2016, I have been on and off in the office due to my bad health. Luckily I am able to work from home, but of course I would much rather be in the office and I can’t wait to go back full-time.

It’s something I’m really looking forward to and is motivating me to get better, because currently, I’m at a loss of where things are heading.

Most recently, I have been experiencing horrible symptoms including abdominal cramping, blood and I still have to use the toilet up to ten times a day. I have been to the doctors on numerous occasions, to be given steroid prescription after steroid prescription.

And now, at a loss of what to do next, my surgeon has referred me to St. Marks Hospital in Harrow, London – a bowel specialist hospital that will hopefully be able to help me.

They will be doing a full physical and psychological investigation in hopes of fixing what my surgeon has dubbed a very ‘complicated bowel’.

Currently, all I can do is try to keep myself as comfortable as possible, not fret too much about what other people are doing, focus on my work and await this appointment that will hopefully be exactly what I need for a new lease of life.

It’s been a long, tedious ride and there are times where I’ve questioned the point in life, wondered whether I made the wrong decision to have a reversal and blamed my poorly body.

But at the end of the day, if I hadn’t gone for the reversal, I know I’d have been forever wondering ‘what if?’.

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Why I’ve decided to start blogging again

At the end of 2015, I bid farewell to my old blog, morethanyourbag.com. 

If you’re not familiar with it, I spent the best part of a year documenting my time living with an ileostomy bag after undergoing emergency surgery for a stoma after unknowingly suffering with ulcerative colitis, a form of inflammatory bowel disease.

In October 2015, I opted to have the stoma reversed, which meant my small intestine would be stitched back to my rectum to allow me to go to the toilet ‘normally’ again.

Of course, I was excited. I thought it’d be a clean slate for me and that I’d be able to get on with my life and forget the surgeries had even happened. I even finished up my blog in the process, deciding that I’d no longer have anything to write about.

But I was so, so wrong.

I can’t believe it’s taken me this long to set up a new blog. I’m not sure if it was out of fear or just because I didn’t know how to put everything into words, but I’m hoping that writing about things once again will prove to be both helpful and therapeutic.

It’s been nearly two years since I had my reversal surgery, though it only feels like months ago.

Sadly, things didn’t go to plan from the get-go.

Prior to the operation, I had been told it’d last an hour and I’d be out of the hospital within three days. The operation ended up being three hours long as they had to re-cut down my original scar and through the stomach muscles, and I was in hospital for two weeks, incredibly ill.

I went back to work within 6 weeks of being out of hospital, and while at first things seemed fine, my health quickly deteriorated. I couldn’t get through a day without having excruciating stomach cramps until I’d reach a point of collapsing.

This was not helped by my need to use the toilet up to ten times a day – despite previously being told I could expect to use it around three times a day.

Alongside the cramps and the toiletry needs – which still go on two years later – I still experience other nasty symptoms that leave me feeling generally rubbish.

So basically, long story short (which I will be going on to talk about in future posts), my reversal hasn’t been very promising. And it’s been a real struggle to deal with, in all honesty.

Currently, I work from home, as I am waiting to see specialists at a new hospital for a full investigation into what is going on with my reversal – and why things still aren’t as they should be.

I am very lucky to have amazing employers who have been incredibly supportive of me and for that I couldn’t be more grateful. However, I can’t pretend that it’s not hard.

I’m happy to work from home but I find it so very isolating and lonely. I watch as my colleagues and friends venture out into the world, working in luxurious places and travelling, and I’m constantly stuck in my bedroom.

I know I can’t moan too much, but I feel my life would be so different if I’d never suffered with IBD.

But, as mentioned on my ‘about me’ page, I will be writing about more than IBD on this blog – focusing on other invisible illnesses I live with – including bipolar disorder.

I was diagnosed with bipolar disorder type 1, a type of mood disorder, around a-year-and-a-half ago. Type 1 means I have more ‘manic’ episodes than depressive – though each are as severe when I’m in either or.

Living with both IBD and bipolar disorder has been very hard because I find they can often counteract each other. You can feel good physically but awful mentally, and vice versa.

And in all honesty, there have been times where the bipolar episodes have made me feel worse than I ever have physically.

But with the right medication, I cope – and I’d really like to use this blog to venture further into each diagnosis, how I live with them and the repercussions that come alongside, in hopes that it helps other people going through similar things.

The name for this blog, ‘But you look great’, is inspired by comments frequently heard by people with invisible illness – usually coming from others who don’t quite understand that you don’t need to look bad on the outside to feel it on the inside.

Comments such are these show that so much more awareness for invisible illnesses – be that physical or mental – is needed.

For future posts, I will be talking about life with mental illness, mental breakdowns, self-harm, mental health medication and seeing mental health professionals – including the Crisis team – to highlight what it can be like to live with bipolar disorder.

I’ll also be talking more on my progress with my reversal, problems using public toilets, body confidence, all things poo-and-taboo, hospital trips and how the medical team intend to put me on the mend.