Like many people, we decided to give Iz’s stoma bag a name. We called him Bob. At first, we didn’t name him right away; we wanted to get a feel for him, I guess. Bob—more specifically, the stoma underneath Bob—was a bit of a shock. I’ll be completely honest: I was absolutely terrified of him. It took some getting used to, but one thing I must say is that, despite feeling terrified, intimidated, and worried about Bob, I was never repulsed or disgusted by him. My husband had a different reaction and found it a bit grim; however, I believe everyone responds in their own way, and there’s no right or wrong response.

I was fiercely protective of both Bob and Iz and didn’t want anyone else to find either of them gross. It felt like a stab to the heart when my ten-year-old son was grossed out by it. I know he didn’t mean any harm. People often fear what they don’t understand, and reactions can vary widely. My son still finds Bob a bit yucky, but that’s completely okay. He loves Iz, and he is an amazing big brother. What’s more important is that he understands that without Bob, Iz wouldn’t be here. So, we all love Bob—even if he can be a little stinky sometimes.

I struggled at first with Bob. There was a time when Iz went quite a while without a bath, mainly because I was so afraid of Bob getting wet. In my mind, I had to keep Bob absolutely cleaner than clean; after all, you wouldn’t want non-sterile water getting into wounds. But of course, Bob isn’t a wound. Initially, there were stitches that hurt, and keeping her out of the bath made sense at first. However, I kept her out for way too long. In the interest of full transparency, Iz still hasn’t had a bath without Bob the Bag attached. I cannot wrap my head around bath water going into it, and I refuse to lose sleep over it, so we do what works for us. She now enjoys a bath every other day when we change Bob for a new one, and she loves it. Thank you to the wonderful Sam, Iz’s health visitor, for giving me the push I needed to get her into that first bath. She pointed out that Iz was missing out on the experience, and I realized I was robbing her of it. After that first bath, she loved it, and now we all adore bath time. Of course, we topped and tailed her in the meantime—she wasn’t unclean at all.

Bob might look red and sore, which is what initially freaked me out. To me, it looks painful, and of course it’s insides on the outside and that takes some getting used to; no one ever wants inside’s on the outside nor for their baby to be in pain. It did hurt, at first with the stitches, but it heals incredibly fast and now isn’t painful at all. Credit is due to surgeons; they are just incredible and Bob is amazing.

So far, our experience with Bob has been relatively lucky. I read a lot and do extensive research; it’s my coping mechanism to absorb as much information as possible, especially given the high stakes involved. We’ve dealt with some sore skin, but thankfully we’ve found a routine that minimizes those issues. We had one session where we were shown how to fit Bob, and a colorectal specialist had me change it a couple of days later. He was a lovely man who assured me we’d be stoma experts in no time, but I didn’t believe him for a second. Changing a stoma bag on a baby is akin to changing a stoma bag on an octopus! As they grow, they tend to make it harder—what we call “levelling up.” It’s not just about arms and legs; it’s also the “poop volcano” coming out of the stoma, and sometimes she even likes to piddle on you at the same time, so you’re getting it from everywhere! I remember one particularly challenging change where she pooped no less than three times and peed on me. Once you start, you’re committed, so you have no choice but to get on with it. I finished and had a good cry afterward, thinking, “That’ll teach me for thinking I could do this.” But of course, I did manage it even if I felt beaten and I’m definitely more capable than I ever thought I would be at this . We try to tackle changes as a team, and as long as there isn’t a leak (which is thankfully rare), we usually manage this and have a routine that works for us.

While changing Bob quite early on, I noticed something wasn’t quite right. After doing some research, I discovered that Iz has a hernia, and my world collapsed. I went into an absolute meltdown. Since it was a Sunday, I assumed I wouldn’t receive a reply from our stoma nurse (rightly so), so I also called the ward. I packed our bags and got ready for the hour-long drive to the hospital, anticipating more surgery.

Fortunately, one of our surgeons called me back within an hour. We set up some tools, sent photos, and I was reassured that a visit wasn’t necessary. They told me what to look out for and assured me that this could be fixed during her final operation. As long as the stoma was functioning, everything would be okay. Our stoma nurse also replied and provided reassurance. I will always be grateful for their support on that day. Google can be both a blessing and a curse at times.

It’s strange to think that we are now comfortable with Bob. In fact, I’m actually scared of him leaving. While he’s here, we know what to expect, and we feel in control. However, once he’s gone, we are uncertain about what the future holds for proper bowel movements and continence.