Things I wish I knew being pregnant with a stoma

Things I wish I knew being pregnant with a stoma

Firstly, it goes without saying that my experience is mine alone, and should not be taken as what is typical to expect. We are all so different in how our illnesses affect us, and I have always felt a little imposter syndrome in the ostomate community where social media is concerned for example, where most people seem to have IBD not Hirschsprung’s Disease. This again will mean a different experience, yet I hope I can give some advice on some of the things I wish I had been more prepared for, living with a stoma whilst pregnant. Having connected with some pretty fabulous women along my ostomy journey, with some due their babies around a similar time to me, we have shared some similar symptoms that we did not experience with non ostomy pregnancies before. Please make sure if you have any questions, big or small during your pregnancy, that you consult your medical team and don’t sit on it and worry. More than ever, it is important to protect your mental health, as well as your physical health.

One thing I didn’t prepare for was how it would feel with a stoma along with the change in my body. I have had 1 pregnancy before without a stoma, so this was all new to me. I was quite naïve to it, in terms of thinking because I am one of the lucky ones to have accepted my stoma, and lead quite a full life despite it, that those feelings would continue as my body grew to accommodate my little man. I empty my bag regularly when I need to urinate, as in my mind it saves me two trips. With this, my bag never gets that full apart from overnight, so physically I forget it’s even there throughout the day. The bag I wear can be folded in half with a sturdy Velcro tab which can be found here, which makes it more forgettable!

At over 30 weeks as I type this, I am finding maternity leggings and high waisted underwear are starting to fall short over my bump, and in turn making my bag more obvious than ever. My output is more than the norm as I take in more calories and try to keep hydrated, which has always been a struggle having no colon. In the night it is uncomfortable as the baby is wriggling, but with a stoma bag that is filling up it feels like a ticking time bomb teamed with a hard bump! Lying on your left hand side is supposed to be better for blood flow, so with my stoma on the right this lends itself well to that. I have found that I always feel the baby kicking on my left, opposite to my stoma. The poor thing must feel very cramped with my small intestine going out to my stomach wall. At present he is nestled with his head up in my ribs and legs down avoiding my stoma area completely. Great for him, making breathing fun for me!

Pain caused by scar tissue was the one thing that scared me at the start. I am sharing it not to scare readers, but to remind you to get checked if you do feel pain and not leave it. As my uterus started growing I started getting sharp pains around and behind my stoma site. I had a duhamel procedure to reverse my first stoma as a baby before getting another stoma in 2020, so I have the long scar down the middle and all that comes with it to contend with, plus a c section scar from my first pregnancy. This has left me with alot of scar tissue, all of which creates more pulling and shooting pains. When it first started happening it was such a panic. I made sure I had a check up and was reassured with an early scan at 5 weeks and we saw the little ember fluttering. I certainly didn’t have it with my first pregnancy and straight away your mind goes to the worst thoughts. As time went on I learnt to recognise the scar tissue pain and not panic so much.

I found it reassuring to connect with fellow ostomates who are also pregnant, but equally have made sure I get checked each time something doesn’t feel right. If you are pregnant, I wish you a happy and healthy pregnancy!