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Being pregnant with an ostomy

When I made the decision to undergo stoma surgery in 2010 after suffering through years of painful surgical procedures, I had no idea where it would lead me and how my life would change, but nine years on I am proud of how far I have come and what I have achieved. Because of my decision I am happy and healthy, I am now a qualified Registered Nurse helping others in the same situation and more recently have had the opportunity to share my story across a number of different settings including national conferences, education days and support groups. Perhaps my greatest achievement however, was becoming a Mum to my beautiful little boy Alexander, something that may never have been possible without my stoma.

So, what is it really like being pregnant with an ostomy? The most important thing to remember is that having a stoma is not a contraindication of pregnancy. I had done a lot of research into pregnancy with an ostomy including a sit-down with my gynaecologist who after some routine testing advised that there shouldn’t be any reason I would be unable to conceive naturally. With that said, both my husband and I were a bit shocked and surprised when we fell pregnant within a couple of months of trying.

My 1st trimester was relatively easy – I had no morning sickness, I was able to continue working normally and my energy levels remained unchanged, so much so that I was able to continue training at my local F45 studio. I was also barely showing, so not only was it easy to hide, but there were also no major changes to my stoma or the need to make any changes to my current appliances.

Unfortunately, my 2nd trimester was not as straight forward. At 16 weeks, I suffered a rare complication – an intestinal obstruction likely caused by an expanding uterus and often associated with increased maternal and foetal mortality. I was gravely ill and would need not one, but two life- saving surgeries in order to successfully treat an ischemic bowel. I left hospital 2 weeks later with a re-fashioned stoma and a 20cm wound right down the middle of my abdomen which had broken down significantly and needed daily dressing changes. 

I was incredibly lucky to have a very skilled medical team who fought so hard to keep both me and the baby alive and to this day, I am unable to explain how I survived such a life-threatening health crisis.

I spent much of my 3rd trimester trying to comprehend what had happened to me and it would take several more months to regain my strength physically, mentally and emotionally. I was monitored and scanned weekly by my wonderful obstetrician and given strict orders to stop work and rest as much as I could to allow my body to heal itself. I also needed a lot of support mentally and once a week I would sit down with a psychologist who helped me process my feelings. Even though I am naturally petite, it took weeks for me to develop the typical ‘pregnancy belly’ mostly because of the trauma my body had been through. From that perspective, I was lucky because my stoma only expanded by a few millimetres, and as a result, I had no leaks and was able to continue using the same appliances by cutting the openings a little wider.

Whilst most women with an ostomy can have a normal birth and delivery, I had opted from the outset for a scheduled caesarean section primarily for my safety and the safety of my child. My obstetrician was ecstatic when I made it beyond 28 weeks, then 32, 34 and finally 36 weeks gestation convinced that at any time I would go into premature labour given all the complications I had endured. Luckily for us, I was able to deliver on my preferred date, 2 weeks prior to my due date at 37 weeks and 5 days. Against incredible odds, on the 11th of December 2017, we welcomed a healthy little boy, Alexander Benjamin Murray born at 9.37am and weighing in at 2.6kg. It was such an incredible relief to be able to finally hold our little boy, the culmination of an epic journey that almost cost both of us our lives. I recovered just like any other post c-section Mum, the only difference being that I had a stoma which reverted back to its normal size when I returned to my pre-pregnancy weight just a few weeks after Alex’s birth.

Like any new Mum, I still had to navigate through the sleepless nights and exhaustion, the rollercoaster of postpartum hormones and the difficulties of breastfeeding a baby that had trouble latching, but if you were to ask me today, I wouldn’t change a thing!

Alexander will always be incredibly special, a gift to this world and a survivor. Today, he is a highly active, healthy and happy 2-year old. He has and continues to meet all of his milestones despite my fears that there may have been some developmental delays as a result of the heavy doses of anaesthetic drugs and narcotic pain killers that were pumped into my body during my pregnancy. 

He is already discovering that I am a little bit different and often looks at his stomach wondering why it doesn’t look the same as mine. I never hide my ileostomy from him and as he grows up, he will learn to understand that his Mummy is unique and that having a stoma has been life-changing, but not in any way life-limiting.

For any woman contemplating pregnancy with a stoma, I would recommend firstly seeking advice from a medical team including your Stomal Therapy Nurse.  Secondly, the power of social media is an undeniable force in today’s society allowing us to connect with other ostomates around the world. What I found most useful was being able to connect with ostomy support groups through platforms such as Facebook where I was able to find other women to engage with for support. Finally, pregnancy can be a daunting experience, but an incredibly rewarding one at the same time. 

Living with a stoma does not mean you can’t enjoy a happy and healthy pregnancy and whilst my journey was a little more complicated, for me, having a child is the ultimate proof and reassurance of normality and is a reminder that ANYTHING is possible.

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