My stoma-friendly wedding
Wednesday, April 22, 2020
Gemma Evans describes how she made her marriage ceremony inclusive for people with an ostomy or inflammatory bowel disease
If someone told me 5 years ago that I would have got married this year, I would not have believed them. I’ve only had two relationships before I met my husband, and both of them ended due to my illness. So, in the love department, I thought I was doomed.
Getting my stoma
I have Crohn’s disease, a kind of inflammatory bowel disease (IBD for short). It attacks the digestive system, causing problems like diarrhoea, stomach aches and blood in the stool, as well as cramps, tiredness and weight loss. There is no cure, and the disease can only be managed with medication and pain relief. IBD affects people differently; some only have mild symptoms, while others have it more severely.
" ‘I had no one to talk to who understood’ "
I was one of the unlucky ones, as it turns out; I’m allergic to most of the medications that are prescribed for IBD. In April 2011, I ended up having a temporary stoma to give my bowel a rest. However, in the summer of that year, my Crohn’s disease had attacked all of my large bowel in a very serious way. After lifesaving emergency surgery, I was told I could never have my stoma reversed, so a year later I had my stoma made permanent.
After the operation, I fell into depression and found it hard to do day-to-day things. I had no one to talk to who understood what I was going through or feeling. I felt ugly and unattractive; I hated clothes shopping and going out with my friends, both of which I used to love doing. ‘Who was ever going to find me attractive when I looked like this?’, I thought to myself.
Then, in March 2014, I was scrolling through Twitter when I stumbled upon a campaign called #GetYourBellyOut, asking people with IBD to upload pictures of their bellies, donate £3 to the cause and post the photo across social media to raise awareness. I didn’t feel up to doing this myself, but it led me to a new Facebook support group for people with IBD.
I am so glad that I joined, as this group would be my lifeline for the next 5 years. I got to know the founders and many of the members. We shared stories and tips, but most of all we listened to each other, helped each other through the tough days and celebrated the good ones.
" ‘there was no stopping me’ "
About 4 months after I joined, all the amazing people I had met gave me courage to post my belly picture on social media. I remember sitting for ages with the post ready to be uploaded, and I just couldn’t bring myself to post it. When I finally did, I cried. It was a huge thing for me. My stomach and Poonelopy (the name of my stoma) were out there for the whole world to see—now there was no stopping me.
With my newly found confidence, I came out of my shell. I was starting to believe in myself again as I got more involved with the group. I designed a coin for the group’s first birthday, which was sold to raise funds, and I got involved in helping to plan the first birthday ball. Little did I know then that I was about to meet my future husband Nick.
Gemma feels she couldn’t have asked for a better day
I was put in charge of sending out party tickets once payment had been received. One evening, while checking my emails, I saw a message from Nick, saying he hadn’t received his ticket. To this day there is still a debate over whether I did send him his ticket, or whether he lost it. Either way, this was how we started talking, and it was something that Nick referred to in his speech at the wedding.
" ‘People with IBD often have anxiety’ "
We finally met at the first #GetYourBellyOut birthday ball in March 2015, but it wasn’t until much later in the year that we became a couple. It was hard for us, as I lived in Northampton, and Nick lived on the Wirral. With my job I worked weekends, so every other weekend Nick would travel down to see me, but this soon turned into us seeing each other nearly every weekend, which was great. We both knew from quite early on we were made for each other. We understood what each of us went through on a daily basis. Nick understood that whenever we would plan something Poonelopy had to be considered as well. The joke is that Poonelopy is the third person in our relationship. When she is having an active, noisy day, he often talks to her. When I’m not well or she is having one of ‘them days’, he will help me clean her and change her bag. This just makes me love him more! On 14 February 2016, I didn’t hesitate to say yes when he asked me to become his wife.
Keeping it IBD-friendly
We both knew that our big day had to include #GetYourBellyOut. We also knew that anxiety is something that people with IBD often suffer with, which would make travelling to an unfamiliar place daunting. We made it our job to make things as stress-free as possible for our special guests. When we were looking for a venue, we took into consideration how many toilets it had, the layout of the venue for the guests with mobility issues and how far it was from hotels, in case anyone needed to go back for an emergency. The Barns at Hunsbury Hill in Northampton had all this and more. They even used a catering company that went above and beyond to make sure everyone’s food was how they ordered it and substituted anything they couldn’t eat.
When Gemma looked for a venue, she took into consideration how many toilets it had
Once we had sorted the venue, the next big thing was finding the dress—a task brides tend to love and hate at the same time. I knew that I wouldn’t be happy if Poonelopy could be seen through my dress, so tight-fitted shapes and clingy material were out. I always thought it was a superstition to say that ‘you don’t choose the dress; the dress chooses you’, but I learned that this was very much the case. After trying on four dresses, I chose the first one I tried on and fell in love with. It wasn’t tight around my stomach, so Poonelopy had room to breathe and feel comfortable. The lady in the shop was really helpful; I discussed my fear of dress shopping and why I was dreading it, and she made me feel completely at ease.
" ‘Poonelopy was again at the front of my mind’ "
Not long after I ordered my dress and five of my six bridesmaid dresses from her, the shop sadly closed down, so I can no longer recommend this lady. After a lot of crying, sleepless nights and help from the companies where the dresses were ordered from, I finally received my gown and bridesmaid dresses, 2 months before the wedding. My sixth bridesmaid, Lisa, who lives in Ireland and who I also met through #GetYourBellyOut, managed to find a nice shop that carried the same dress as the others, so no one was left out. Lisa also has a stoma, named Sheldon, so when picking out the bridesmaid dresses we had to make sure it was the right shape and material for her, while also trying to make sure the other five bridesmaids were happy with the choice too. All in all, it took the best part of a year for them all to settle on a dress!
Fitting her into the big day
As the big day approached, I was getting nervous and anxious. Poonelopy was again at the front of my mind. I was starting to worry about her bag leaking, how I was going to empty the bag with a big fluffy gown on and just in general how I would cope. I asked my bridesmaids if they would help me in the toilet getting my dress on and off, which they were happy to do. Dad brought me a make-up bag with the word ‘bride’ written on it, so that I could carry an emergency change of stoma supplies with me, which was comforting.
I knew that, if I ate or drank alcohol, Poonelopy would become active. So, I made a point of not eating on the morning of the wedding and only had one glass of wine while I got ready. The last thing I wanted was Poonelopy singing Dad and me down the aisle or all the way through our vows.
As the day went on, I settled more and started to enjoy myself. We couldn’t have asked for a better day. The sun shone in the day and the change in the weather later on didn’t stop our wedding guests from going out to have a dance in the rain in the evening.
Cheers to the future
I feel so grateful to the founders and members of #GetYourBellyOut for giving me my life back and for showing me you can achieve anything with this illness. It also goes to show that good things happen when you least expect them. Thank you #GetYourBellyOut for sticking with me and holding my hand when I needed it, and thank you for the wonderful man I now get to call my husband. Here is to the next 6 years of #GetYourBellyOut, and, who knows, by then we may have your youngest new member.
Gemma EvansDownload Now