The consequences of losing my bowel to ulcerative colitis

A young woman has shared her journey about losing her bowel, and beyond. Photo / Getty Images

As told to Matt Young of news.com.au

I haven't farted for more than a year. Well, not in the way that you normal folk do. Curious?

I was too when I found out at the age of 24 that I was going to lose my bowel. All of it.

Ever since, I've been defecating into a bag that is attached to my stomach. Any time, any place. I can't control it. I haven't expressed wind, or anything else for that matter, the "normal" way, for quite some time.

In fact, I think I forget how to fart.

When I was 19, I began to feel initial symptoms that something was wrong downstairs, and I soon fell into a downward spiral.

I would suffer painful aches while going to the bathroom, like a sharp, lightning pain. It really got pretty hectic when I started to bleed down there. I got really sick and went to hospital, I couldn't keep things down. Eating was horrible and I was becoming seriously dehydrated.

Doctors first thought it was a fissure, which is a tear or split in the lining of the insides of your backside. It can be quite common among us.

But the problem persisted. I went back to hospital three times, until I was 24, in September 2015, when I was scanned and tested; I had to drink that horrible licorice stuff where it lights up your stomach.

Mum cried and I told her to get out. I was horrible to poor mum, I feel bad for her. My mum is the rock that kept me going and I probably treated her like sh*t.
After the surgery, I remember waking up and someone asking me if I was in pain. I remember saying, "yes".

A doctor told me I would be in an extreme amount of pain, but I'd been through worse so I wasn't as scared as I thought I'd be.

My surgery is called an ileostomy, and what they do is they remove the large intestine because in my case, it was going to perforate - I've seen pictures of it and it was ruined.

Since the operation I've been defecating into a bag that comes out of my stomach.

Most of the time I don't feel too much, if it is something harder to digest I may feel a little pressure. I don't know when I'm going to the toilet, I just see my bag full. I don't feel the urgency to poo like normal people. I feel weird sometimes.

I can't control where or when my body will quite literally sh*t itself. There are times where I've been at work and found myself in an uncomfortable situation, if you get my gist. I try not to worry too much, I just try and explain my situation and laugh it off.

The hole in my stomach allows me to fart, but it's not the same. It's nowhere near as good. It's not the same relief.

But in my case, there is hope. Doctors have kept a small part of the large bowel inside so they can reattach my bowel to my anus. Sorry to be graphic, but hey, it's my reality.

This all happens next month, when I go back into surgery.

Doctors diagnosed me with ulcerative colitis; an inflammatory bowel disease characterised by chronic intestinal inflammation.

It was so serious that at the time, doctors said, "you're not leaving today without surgery. Your bowel is going to perforate and tear away".

They remove your bowel as a last resort because it's a big surgery. There are a lot of medications people can take to combat the problem, doctors hope you'll be OK. Some people are lucky enough, but for me, surgery was my only option at that point.

They twisted my small bowel and cut a small hole at the top, and that small hole in my stomach is where I have been going to the toilet for the past year and a half.

I was already nearly a month into hospital at that stage, I didn't really process the news. I didn't have time to process, I knew it was coming, but I didn't realise how much it would affect me.

I was so sick and tired that I didn't really care at that point.

I'll still have the bag after the operation, to let everything heal, but after a few months there is hope I'll be able to poo just like everyone else. After next month's surgery I'll need to have another small surgery which will allow me to finally poo, if all goes to plan.

It's exciting, I'm holding a poo party to celebrate, I've already booked a friend's house for it.

I know we don't often talk about these issues people face, but I felt it important to celebrate the small things in life, like pooing, and recognise that not all of us have that ability.

To be honest, I'll be scared of the sensation of farting. Will it stay together? It's been so long that I've forgotten how to do it.

My partner, when he farts, I'm not mad at him, I'm jealous.

I loved him before the fact, when I was in hospital mum said, "he could've left"; we'd only been going out for about eight months when I went into surgery. He's amazing.
Supportive. I don't think I could have found anyone better.

I never expected this to happen to me. I wish it had happened when I was younger, back then it feels like I was freer, you weren't chained by the expectations of adulthood. I have a big job now and I feel bad that I have to take so much time off.

Sadly I can't really travel with this condition, because of insurance prices and medical expenses. I was so worried about it happening for so long that I didn't do things I should have done.

When it happened, I realised I couldn't do all the things I wanted to. I wish I didn't waste so much time worrying about it.

Things could go wrong, the operation might not work and I might permanently have to poo out of a bag. It would be disappointing, but on the bright side, I've been the healthiest I've been in five years this past year.

The bag forces you to look at your life and reassess.

I've got to be thankful, I'm not dying or losing a limb. I can still eat, smell, touch.

I just can't poo.