Emily’s Story

Recently I have reached out to some local support groups to see if there are other people out there who would be interested in sharing their stories here too. I have had an amazing response and look forward to sharing more journeys with you all in the coming weeks. I always think it’s good to hear more sides of a story than just one, and although we have all been on similar journeys, each and everyone is also very different.

Emily has written this beautifully and I’m so grateful to her for sharing her story with me, and in turn with all of you. I hope you enjoy the read.

Thank you Emily ❤

“My journey began back in 2015 when I started bleeding from the back passage.
Being only 19 years old, I was too embarrassed to get checked out initially but then I became more and more unwell. After 9 months of me refusing to let any Dr examine me due to embarrassment, I was finally referred to the hospital for a flexible sigmoidoscopy to look at what was going on inside. I was straight away diagnosed with severe ulcerative colitis and was told I was extremely lucky as any longer down the timeline, things could have been very different for me.

I was put straight on a whole concoction of medications. Things slowly started to improve but it wasn’t long before I was battling with the disease again. I could barely eat, drink, or move – I spent more time off work and university than I was there. It was at this stage that I was admitted into hospital and was started on infusions of immunosuppressants which seemed to help for a few months before I was back to living a life of being in and out of hospital again. I was now on over 30 tablets a day and 4 weekly infusions, but nothing seemed to get the colitis under control.

In December 2017, I attended the hospital for a routine colonoscopy, I remember going in positive thinking I was doing ok but the results showed otherwise. I was admitted into hospital and told that it was likely surgery was going to be my only option now as I was just too poorly for medications to help. I had a whole whirlwind of emotions going on inside my head but from speaking with the surgeon, I realised it was my only option to try and get my
life back again. Less than 24 hours later, I had the operation, and my large intestines were removed and my stoma created.

I remember instantly feeling so well and could not believe the difference. It certainly made me realise how poorly I had been feeling for so long. There was just one little problem, I couldn’t bring myself to actually look at my stoma! I was so scared that I now had part of my intestines on the out side of my stomach, but my stoma nurses were so amazing with me and within days I was changing my own bag just fine which meant one thing – home time!

This frightened the life out of me, I think I called my stoma nurses with any little change to begin with as I just didn’t know what was normal and what was not. Within weeks, my newfound confidence with my stoma turned into grief of what could have been, had I have not gone for the operation.

What if I tried just one more medication?

What if I persevered with the steroids?

What if it was all just one big mistake?

I hated my stoma bag, and I wanted it gone. Two months after surgery I was re-admitted to hospital as I was so dehydrated. It was here that a nurse noticed how depressed I had become with my stoma, and I was referred for counselling. I spoke to this counsellor for a whole year and my mindset changed. I realised how I was now able to live my life. I could eat, drink, work, go to university – I could do anything. Me and my bag became friends, and I was eternally grateful for it.

However, despite now not having my large intestines, my colitis persisted in my rectum, and I was still bleeding daily and sometimes in incredible pain. The only medication that would treat this area was suppositories and I battled mentally with using these daily – I fought so hard with the hospital to let me
have any other medication but them, but it was always returned with the same
answer – no. I now understand why and the reasons, but back then it was a battle I always fought with. There was only one other solution to resolve this – more surgery.
I could have a j-pouch and have my small intestines connected back to my rectum or I could have my rectum removed and be sewn up to have what is called a barbie butt. This decision took me a couple of years to come too but in July 2022, I underwent the surgery to have a barbie butt and keep my bag for life. How my mindset had changed! I was so pleased to finally be colitis free! I recovered from this surgery very well and got back to living a happy life again.

I probably had about year feeling well and living life and then I started to get some complications with my stomach again. I was bloating so much at times; I was vomiting and in agony with the pain. After many hospital trips, medications, appointments and tests within the last two years, I have now been diagnosed with bacterial overgrowth in my small intestines. I have been on antibiotics for a couple of months and while on them, I am healthy and able to live my life. When off them, I’m back in agony. I have been told that I will now likely remain on antibiotics for life with a regime being created where I will
rotate between three different ones. It’s not quite the ideal situation and I am gutted to be put back on medication for life, but I am glad I am being cared for so greatly and have a plan being put in place.

My time with ulcerative colitis and having a stoma has not been all bad. I now
volunteer for ‘Crohn’s and Colitis’ and ‘Colostomy UK’. I also help to run a stoma support group for Shropshire and Mid Wales called Bums on Tums (BOTS). I have met some amazing people and have made some incredible friends. I have gone from quite a shy person who was too embarrassed to visit the Dr, to someone who will shout about poo and stomas from the rooftops.

I am proud of the person my stoma bag has shaped me into”.