YouTuber, Podcast Host and Author, Hannah Witton has been living with ulcerative colitis (UC), a form of inflammatory bowel disease, since she was seven years old. In 2018, after a particularly severe flare up, she had emergency ileostomy surgery to remove her colon and divert the small intestine through an opening in the stomach. She now lives with a stoma she affectionately calls Mona.
It is estimated that one in 500 people in the UK are living with stomas (Colostomy UK) yet despite how many people are affected by colostomy, ileostomy or urostomy, there’s not a great deal of information available unless you really go digging for it and that lack of education, coupled with the stigma and shame around talking about it, means many of us don’t know the first thing about this hidden disability.
Known for speaking openly about taboo topics and having honest conversations about sex and relationships on her podcast Doing It, Hannah’s willingness to talk candidly about the condition and using a stoma bag in her day to day life has helped hundreds of ostomates feel seen, understood and empowered.
Now expecting her first baby, Hannah chats to us about her pregnancy so far, from birth plans to new bags and monitoring Mona…
P.S To all those with stomas, IBD, scars and stories to tell, your body is beautiful. Long may you celebrate it and talk about it with openness, acceptance and pride.
First up, so many congratulations Hannah! How are you feeling?
Thank you so much! I’m currently feeling pretty good which I am very grateful for. I’m just very tired and hungry all the time but I can handle that.
There is little information around pregnancy with a stoma, how has the experience been for you so far?
Oh boy has it been an experience. Things are much calmer now (although that could change again…) but for a few weeks my stoma must have gone through some kind of growth spurt and I was trying to navigate that with getting bigger bags and different kinds of bags to fit my new stoma. Luckily the stoma nurse at my hospital has been so helpful but I just wasn’t expecting it to grow so fast and there can be a lot of trial and error with finding the right bag. There was a short period where I was in a lot of pain with my stoma and also just feeling like the bags weren’t very securely attached to my body, which just makes being able to relax and get on with your life really difficult.
Did you have any reservations or concerns going into the pregnancy? What were your expectations?
I honestly went into pregnancy with so few expectations. I knew that people’s experiences varied so vastly that there was really no way to predict how my pregnancy would go. I’ve very much been taking each day and everything as it comes.
Whilst it’s definitely not been the easiest time, at least I haven’t had to deal with feeling disappointed that it wasn’t what I expected on top of that.
Is there anything you have to be particularly mindful of / do differently to pregnancy with a stoma?
When we first saw the midwife, I was immediately referred to the obstetrics team at my hospital so the doctors could keep an eye on me too. The stoma itself isn’t really an issue for the pregnancy (the pregnancy is more of an issue for the stoma!) but I’d say the main thing is that because I don’t have a large colon the medical team want to make sure I’m absorbing enough nutrients to grow the baby. I’ve had to take a much higher dose of folic acid to make sure I’m absorbing enough, I’m also on iron and I’m having serial scans so they can check the growth of the baby more accurately than a tape measure around the tummy. And I’m not mad about any of those things at all! I feel very looked after and very grateful for more scans!
What’s your birthing plan and what sort of delivery do you plan on having? Are there any dos and don’ts/limitations for childbirth/pregnancy when you have a stoma?
At first the doctors were considering recommending I have an elective C-section (scheduled) because of my previous surgeries and the risks of potentially finding scar tissue on my womb if I have to have an emergency C-section – there is much more control of the situation if the C-section is planned.
However, since then, they’ve seen me more and also spoken to my gastro consultant (who was very chilled about the whole thing and didn’t see any reason why I couldn’t have a vaginal birth) the obstetricians have said they’re happy to recommend a vaginal birth.
But it is still completely up to me. The current plan is to give birth at the birth centre, which is the midwife led unit at my hospital. However my birth plan may change with more information we receive from the serial scans that I am having. And I am open to all options.
The only thing that could add an extra layer to the birth when you have a stoma is if I have an epidural. I would then need someone else, whether the midwives or my partner Dan, to empty my stoma bag for me when it gets full, as I will be unable to do this.
All births and bodies are different but in terms of postpartum recovery, does having a stoma affect the recovery period at all?
That’s all a bit of an unknown for me and the best thing to do is play it by ear really. What I imagine will happen is that after birth before I’m discharged the stoma nurse at the hospital will come to see me and take a look at my belly and stoma and see if they need to give me any different bags to go home with. And then it’s just a case monitoring my stoma for changes again (if it does) making adjustments as we go.
How do you deal with people asking you about pregnancy with a stoma if you’re not comfortable talking about it?
To be honest the only questions I get about it are from close friends and family who know I have a stoma and so I’m not bothered by them asking at all. Of course, I get comments from people online about it which is fine too as I talk openly about my stoma and my pregnancy and I just tell them I’m planning on doing a whole video about it.
When strangers notice I’m pregnant and maybe ask questions about that, they’ve no idea I have a stoma and so obviously don’t ask!
What’s something reassuring you’d like anyone going through pregnancy with a stoma to know?
Whilst obviously every pregnancy is different I found it reassuring when my gastro doctors said to me that having a stoma doesn’t automatically mean I can’t have a “normal” pregnancy and birth. What even is “normal” anyway?
And for any mums who might need a temporary/permanent colostomy after childbirth, what’s something you’d like them to know?
It can be a lot to adjust to, especially if it was an emergency surgery like mine was, but ultimately having a stoma doesn’t stop you from living your life. There’s loads of support out there (online and in hospitals – all the stoma nurses I’ve met have been incredible) and you’d be surprised how resilient you are.