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?’.

5 thoughts on “What life’s really been like since having reversal surgery

  1. Hattie
    You never cease to amaze me with your grit and determination. Even when things must be really bad for you. Sweetheart you have come this far, just goes to show how strong you are. So hoping that this referal will get everything sorted once and for all. Chin up chick
    ..
    Onwards and upwards xxxxxx

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  2. Hello,have just read your post on life after the stoma,,i am Alwyn and I had bowel cancer in 2011,i had about 40cm of large bowel removed and to give that time to mend they placed a stoma on me,during my time with the stoma I had chemo and radiotherapy,,when all was done I had the reversal so I could return to work as a heavy plant operator trainer in west Africa,,within two days of having my bag off I knew I made a massive mistake,i really did suffer with messing myself most days,messing during the night,,the radiotherapy I had also damaged my remaining large bowel up to a point I would get no warning at all and just mess myself,,in December 2013 I had the bag put back on and life now is fantastic,i rule my movements now ,okay I have had a few hiccups along the way with the off leakehere and there buti can live at ease now,wish you all the best in what you intend to do,,i think you know in your mind what to do,,all the best,Alwyn,Swansea

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  3. Hello, firstly I would like to thank you for sharing your reversal journey 🙂 I to had a reversal in February. I had to have a temp ileostomy due to my crohn’s being so bad. Ever since my reversal I have had nothing but trouble, bowel obstructions straight after, then things seemed to be getting better until a month ago 😞 I am now back on steroid and awaiting to start humira again. They are pretty sure my crohn’s has returned already 😩 Like you i also wake up and straight away live on the toilet, I am so afraid to leave the house just in case I can’t get to the toilet in time 😞 I will be thinking of you and hope things get better. Let’s keep fighting this and not let it win 👍🏼

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  4. Hi Hattie, really interesting to read the full story, you’ve had a rough ride.

    I hope St Mark’s can help you – I was seen and had surgery there and it was really excellent. Look forward to reading more.

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  5. Hi, this is the first time I’ve seen a post from you, was just wandering if you have been checked for bolts salt malabsorption? If not request a seCHaT scan

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