My experiences with Colitis, pregnancy, and beyond!

20 February 2021

Life events can be stressful for anyone, and several of these collided for Joy when she was diagnosed with Colitis and found out she was pregnant shortly after. Despite the complications of this, she'd do it all again and is using her experiences to help others in similar situations.

At twenty years old, I was just starting my adult life. My boyfriend and I had just moved into our own home and I had landed my dream job in fashion when I was diagnosed with Ulcerative Colitis. To hear the news that I was going to have this condition forever was really scary! I was so poorly at the time, with symptoms like going to the toilet 30+ times a day and passing blood.

These symptoms can be devastating to anyone, especially when you’re so young. All of the plans you have are thrown up in the air.

Living with Colitis

A few days after my diagnosis I was given steroids to help calm my flare. This worked and helped stop the frequency although still passing blood. I felt a lot stronger and it was a good job that I was because two weeks later I found out I was pregnant! What should’ve been such a happy moment, and it was still good news for us, but it was also really frightening. We had an anxious time as I wasn’t sure what being on such strong medication was going to mean for my pregnancy. My GP assured me that everything was going to be okay, but that I would have to speak to my gastroenterologist to go over the details. It was decided for my own health, and to help me be strong enough to carry my baby, that I should continue with the medication I was on, which were steroids. This meant I was more closely monitored, with extra scans and tests throughout to monitor the baby.

I really enjoyed my pregnancy. It was such a special time, but it was also difficult.

One of the main symptoms of Colitis that I suffer from is fatigue and so this mixed with the general tiredness in pregnancy, especially in the first trimester and final weeks, was hard. I had very little energy for anything. Although on the plus side, it has taught me to listen to my body more and rest when I need to! At the time, I really beat myself up about all of the things I couldn’t do anymore. I was taking time off work for being poorly when I would never usually miss a day and I was napping when I’d usually be doing something productive. Looking back now I realise why I was so frustrated; I was grieving for the life I had and the future I planned in my head. This wasn’t at all how I had imagined my pregnancy.

Unfortunately, this feeling of frustration, sadness and grief carried on after pregnancy.

In October 2018 I gave birth to my beautiful little boy, Frankie. I had a difficult birth and needed an emergency c-section under anaesthetic. I felt like I had been through all 37 weeks in pain to not see my own baby being born. It was a really traumatic time for me, especially as my Colitis was getting worse and worse again after Frankie was born. I couldn’t leave the house because I had to be in the bathroom for hours at a time. Now, looking back, I am stronger because of it all. I have love for Frankie that is indescribable. I would sit him in his bouncer in the bathroom with a toy while I was in agony on the toilet, but seeing his little face looking up at me almost took the pain away.

I knew I had to get better for him so that we could do all of the things I had imagined I would do as a mum.

I continued to be really poorly for the entirety of my maternity leave and Frankie had to go to a childminder at six months old to help me rest. I trialled a lot of medications and after multiple hospital admissions I decided enough was enough. I took the plunge and asked my IBD nurse to be referred for stoma surgery. My consultant and IBD nurses were unbelievably helpful and supportive. My family and friends have been an invaluable source of support for me. Through my pregnancy my midwife and antenatal consultant closely monitored me, which helped put my mind at rest. Once Frankie was born his grandparents would take him for days out when I couldn’t - It really is true when they say it takes a village to raise a child!

The one thing that I wish I knew as a first-time mum with a chronic illness it that its okay to grieve for the life you had planned.

It’s okay to be upset but remember that your baby only wants and needs you. They don’t need fancy days out or mum and baby groups (tip – have a look for online baby classes you can do from home). They just want snuggles with you! There are so many support groups online with mums going through the same thing that can make this experience a lot less lonely, and that’s why I started my Instagram, @uc.mamma, to help raise awareness of Crohn’s and Colitis and to support other mums and ostomates.

As tough as pregnancy with Colitis was for me, everyone has such different experiences and I would do it again in a heartbeat. To see the smart, caring, and funny little boy that I have now because of my experience, I wouldn’t change it for the world. We are excited as a family to see where the next few years take us in terms of having more children. I had my ileostomy surgery in June 2020 and haven’t looked back. Even though we have been in a pandemic it has been the best seven months of my life and I can get outdoors again with Frankie and I spend a lot less time in the bathroom!

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