So, you’ve just been told you need a stoma. What’s your first reaction to that news?

I think it will partly depend on the situation, of course. Things like how long you’ve been unwell for, whether it’s an emergency, and whether it will be permanent, or temporary, will likely factor in. Research also suggests that people with a permanent stoma adapt more quickly than those who have a temporary one.

In my journey with inflammatory bowel disease (IBD), I’ve gone through all sorts of emotions, both positive and not-so-positive. I’m sharing my experiences with you so that you know there’s no right or wrong way to feel! It’s perfectly normal to have a mix of thoughts and feelings about having an ostomy.

My first ileostomy

Let’s take a trip back to my first ileostomy in 2007. At that time, I was dealing with a whirlwind of emotions. I got very sick very quickly. I ended up in the hospital, and on the same day, they told me I had ulcerative colitis. Within the week, I was told I needed emergency surgery to create an ileostomy. All I could think about was feeling better. They said removing my colon would cure my ulcerative colitis, and they could reverse the stoma later. I’d never really been sick before and I just wanted it to be over. I remember the stoma nurse coming in and marking my belly up prior to the surgery, but I don’t remember much more than that – it was such a whirlwind.

The first time I saw my stoma, I felt really sick. I almost fainted when I saw my tongue after getting it pierced, so you can imagine how I felt when I saw my stoma for the first time! Nothing really prepares you for what it’ll look like unless you’ve seen one before. I wasn’t expecting it to be swollen, or to see black stitches around it, holding it in place… To be honest, it was the stitches that freaked me out more than anything else.

Once everything healed, the swelling went down, and the stitches were gone, I didn’t mind looking at it as much. But I didn’t want anyone else to see it, not even in its bag!

I had a rough time with my first stoma. Looking back, I know I didn’t get the right care. At the time, I had no clue. I had constant leaks and skin irritation, so I couldn’t wait to get rid of it! I didn’t even want to leave the house anymore because I’d had leaks when I was out and about. I thought that’s just how life with a stoma was. I didn’t know any better because I didn’t know anyone else with a stoma. I saw it as a temporary thing, and I wanted to pretend it didn’t exist. Looking back, I think talking to other people who’d been through it might have helped, but I wouldn’t have accepted that back then. I felt like I was the only person in the world dealing with it.

The reversal

I was gutted when I found out that a reversal wasn’t going to be simple. The surgeon explained the Jpouch surgery to me. It sounded awful, and I still had to live with a stoma whilst the pouch healed! But it was the only way to reverse my stoma. It took 12 months for me to be strong enough to have the Jpouch surgery, and another 12 months to have it connected.

My Jpouch wasn’t everything I’d hoped for. I didn’t get back to my normal life, and my health was worse than when I had the ileostomy. Still, I didn’t think I’d ever be willing to go back to a stoma. My health might have been better, but if I couldn’t leave the house, what was the point?!

My frustration with my life motivated me to start raising awareness about IBD online in 2014. So, later that year, when my IBD nurse said it was time to think about removing my Jpouch, I was already very involved in the online IBD community. There, I “met” many people with stomas who talked about how it had improved their lives. These people will never understand how much difference they made for me. I realised that all the problems I’d faced with my stoma seven years earlier should have had solutions! I still didn’t want a stoma, but I thought if I ever needed one, I’d be better prepared than I was the first time.

After more tests, multiple narrow spots in my intestine (strictures) were found. I ended up having another emergency surgery. My surgeon told me he couldn’t say if I’d wake up with a stoma or not, or if it would be permanent. It depended on the condition of my Jpouch and intestine when they got in there. I was marked up on both sides and taken for surgery. I was worried, but I felt confident I could handle whatever the outcome was.

My second ileostomy

I woke up with a stoma. I won’t lie; a wave of fear washed over me when I felt it. I was desperate to find out if it was temporary or permanent, but no one in the recovery ward could give me an answer. It wasn’t until the next day when I saw my surgeon that I found out it was only temporary. My Jpouch had been damaged during surgery, so they fixed it and left it to heal.

The difference in my quality of life was huge. I stopped needing pain medication within a few weeks, and I was back at work in less than four! It wasn’t perfect. I still had the occasional leak and lots of itching in hot weather, but I LOVED my stoma. I read that giving your stoma a name can help you accept it, even bond with it. So, I called mine Porta because he was my little portaloo!

Naming it made it easier for me to talk about. My friends all knew about it this time because of my awareness-raising activities, and they would often ask how Porta was.

When the time came to reconnect my Jpouch, I actually thought about not doing it. But eventually, I decided to go ahead, with the idea that at least I now knew I could live with a stoma if it came to that again later.

My third ileostomy

Well, it did come to that again. Once more, my Jpouch was keeping me from living my life. Constant pouchitis meant I was often stuck at home. Being unwell all the time and needing pain medication just to get out of bed left me completely exhausted and really unhappy. None of the treatments were working, and I had been offered a medical trial, but I had lost all hope of fighting with my Jpouch at that point. I was eager to feel better. I was eager to have my ileostomy back!

If someone had told me anytime between 2007 and 2014 that I would be eager to get a stoma, I wouldn’t have believed it. I’d even said more than once, “I’d rather die,” which makes me really sad to think about now!

I was so eager to get a stoma again that I was constantly on the phone, bugging the surgeon’s secretary for a date. When the surgeon suggested just disconnecting the pouch and leaving it there in case I wanted to try again in the future, I flat-out refused. A permanent stoma was the only way forward for me. I knew that.

I started reading everything I could find. I asked questions in the community about anything I’d had problems with in the past and how people dealt with them. I felt fully prepared! Excited, even!

I got my current stoma in September 2018. It’s still called Porta, but I rarely refer to it by name anymore. I felt like naming it almost made me see it as a separate thing. It’s not. Now, I just call it my stoma.

So, you can see our relationship has had its ups and downs. I’ve had lots of highs and lows, but I truly believe this was the only way I could get back to enjoying my life. I have every confidence we’ll live happily ever after, but I do expect a few bumps along the way!