living with

My Life With a Hole in My Stomach

Illustration: Getty Images

I started going out with my boyfriend Ash a week before going into hospital. My Crohn’s was really flaring up at the time, but I didn’t show it — I didn’t want him to know. But my body basically decided it wasn’t going to work with any kinds of drugs anymore, and the doctor took one look at me and said I needed surgery. A week later I had to get my mum to message him and let him know that I wasn’t ignoring him, and that I was actually in hospital. He came up every day after work or before work.

It was a day or two before I really looked at my stoma. It was really bizarre to see — you look down and there’s a bit of your intestine poking out of your stomach, and then there’s a bag and there’s poo in it. The nurse actually said, “You can look away if you like.” It is such a bizarre thing to see on your own body. Because suddenly you look and it’s really weird, and you don’t really have any training on how to deal with it.

Getting used to changing the bag was pretty bizarre as well, because there were all these products that I didn’t even know existed that suddenly were a part of my everyday life. My hygiene routine has changed. When my bag gets wet in the shower or the bath, I have to change it immediately. I have to kind of plan my showers around my bag, and ask, “Have I got time to change my bag as well?” Five times a day I have to go to the toilet and empty it. But that’s nothing compared to how many times I was pooing before, when I had a bowel. That was, like, more than 25 times a day of going to the toilet, which is obviously really painful and not pleasant, and not very fun to have to explain where you’re going.

There wasn’t a specific time, place, date that I really came out to Ash about it. He had been reading my blog beforehand, so that was sort of his in. I’ve always been quite open on my blog and on Facebook and whatnot. I think everyone that has me as a friend on Facebook knows what’s going on. Most of my close friends knew, because I would update Facebook and just let people know how I was and what was going on. And I would message people when I was in the hospital because it’s a quite boring place to be. But I’ve met new friends since having my operation who didn’t know anything about it, such as my housemates. I live in a student house with 15 other people, and situations came up when I had to let them know about it, and they were just kind of like, “Whoa! What? Seriously?” I showed them my bag and everything. I’m not shy about answering questions. If I was, then I’d never be able to talk about anything.

But for a while it was quite hard to comprehend. I wouldn’t really look at myself in the mirror. I have bad days and things in my head, like, “Oh, it’s so disgusting,” and “It’s so horrible.” And when it leaks sometimes, it’s quite discouraging, because you’re just there and suddenly you’ve got poo all over your clothes. It does make you feel really ugly and gross. Most of the time, just because I feel a lot more energetic, I also feel better about myself, but there are down days. I’m working on it.

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There’s lots of chewing involved. You can generally eat most things — my stoma nurse told me, Try everything and just chew it a lot. If it feels weird you can try it again and chew more. So I haven’t had popcorn because I know that’s one of the main things that causes a blockage, and I try to avoid sweetcorn. It’s nice to just have an appetite, to be honest.

I quite enjoy dressing myself up, but I wasn’t doing that immediately after my operation. For a really long time, it was just all comfy clothes — I didn’t have my usual sense of style or enjoyment in dressing myself. I remember looking in the mirror and I couldn’t even recognize myself. I was looking into my eyes and willing some kind of connection to happen, and it just wasn’t there. But when I felt physically recovered, I think mentally I felt a lot better as well. So there just came a day where I was like, “I’m weird, I’m going to dress weird. I don’t care anymore.”

There’s nothing really that you can’t wear with a stoma. The only thing is some jeans sit wrong and press into your bag, so as it’s filling up it gets really tight. You have to find the perfect waist. Everyone’s stoma will sit in a different place — generally the same area, but a little higher or a little lower depending on your shape and size, so it’s kind of trial and error. I don’t like normal-waisted jeans. I’ve had to get high-waisted jeans just so it sits over my stoma rather than under, because that can be really uncomfortable. I still wear tights all the time. Because they’re stretchier, I feel my bag can kind of handle it.

I don’t really mind showing off my scar. Sometimes I wear high-waisted something and a midriff top, so you can kind of see the top of my scar. I think it looks kind of cute — it looks like I’ve got abs or something. I went to a festival and I wore a bra-lette kind of thing, but you couldn’t see my bag because I was wearing high-waisted shorts. I haven’t worn a bikini yet. I’m kind of looking forward to it, in a way. I think you’ve just got to go for it, because people are definitely going to stare. It’s not a thing you would usually see at the beach or by the pool, so you kind of have to embrace the fact that people are going to look at you.

That’s where bag covers come in handy as well, because you can make it look a lot cuter, like a fashion accessory rather than a medical thing. I think that’s what’s difficult about it sometimes — it looks so medical, and it’s not nice having the majority of your life revolving around medicine and hospitals and clinical equipment.

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Sex has never really been a problem. You can get really cool underwear, like crotchless underwear and high-waisted briefs, and then it has sort of an internal pocket and you can sort of slot your bag into it so you don’t get that noise, and it doesn’t look like you have the bag at all. But to be honest, it doesn’t faze us most of the time.

For quite a while after the surgery I was just not feeling up for it. I was feeling really sore inside and couldn’t see how sex was going to be enjoyable for a while. And then there came a day where I was like, “I’m ready.” I don’t remember it being awkward. I think when you first start having sex after you’ve had a stoma, you are a lot more careful. You aren’t sure how to approach it — you’re scared that you might squish it, or the bag might fall off. But it’s actually a lot more resilient than you imagine. It’s just what feels comfortable for you. My abs have healed quite nicely, so I have good core strength, I guess, but it’s an individual thing — you have to know your body and know your mind and what you’re comfortable with. But I have basically ignored the fact that I have a stoma. If anything, I have a lot more energy, so I can go for longer.

If I know I’m going to be getting laid then I’ll go empty my bag and make sure it’s all stuck on properly. But sometimes it’s a heat-of-the-moment thing and I don’t have the time to go and empty my bag before. That’s not really a sexy thing to do before sex. And lying on my front and anything that stretches the stomach a bit too much [are positions] I tend to avoid, because my bag doesn’t stick very well as it is, and I don’t want to cause it to leak or something. That would be the least sexy thing. But aside from that, it’s okay, really. The main thing I notice is the rustling noise, but sometimes I notice the noise and change positions and then I can’t hear it anymore.

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Some people would be unforgiving of this weird bag of poo on my stomach. It’s kind of like a bullshit detector. And anyone that’s not cool with it is someone that I don’t want around. It’s an easy way to pick out the good from the bad ones. My ex was really not supportive at all about anything having to do with being ill, so I’ve definitely seen this side of humans: It’s just too much hassle for some people to want to look after someone, and that’s completely fair enough. Some people just want to be getting on with their own lives. But that’s not the kind of people you need in your life if you’re chronically ill. You need people around you that will support you and be forgiving and accepting of whatever’s happening to you.

Ash has really helped with my self-image — I’ve never been made to feel like I’m not beautiful. Just the fact that he stuck around instead of going away was very encouraging. With all the support I was getting, I didn’t really have time to think too negatively about it, and all the nurses were great as well. I’ve had bad days since where I’ve thought, Oh my god, I haven’t actually come to terms with this. I don’t know what I’m doing. This is really strange. But I get over it eventually, and realize that my life is actually a lot better than it was before.

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