My story begins in 1999 when I was 14 years old, and I was diagnosed with Crohns Disease. It took about 18 months to be diagnosed. I was suffering with symptoms of abdominal pain, acid reflux and vomiting after every meal and losing weight. My GP initially questioned if I had an eating disorder, as I was a young teenage girl.  This was really upsetting to me at the time as I did not want to be getting sick.
I was referred to Crumlin Children’s hospital and was seen by a gastroenterologist. After multiple tests and scans and x-rays I was put on a long-term
course of steroids as it was suspected I had IBD. Being on the steroids long term resulted in masking my pain. I had developed a duodenum ulcer which
perforated. (Burst a hole in my stomach). As my pain was masked, I did not know anything until the day it burst. I will never forget the pain of that very long day. When I was brought to Crumlin, they quickly diagnosed what had happened and preformed emergency surgery to repair my stomach. After this
surgery I developed infections and spent 3 months in Crumlin recovering.

The next few years of my teens were managed by a multitude of medications to keep symptoms of my Crohns under control. When I turned 18 my care was transferred to Tullamore regional hospital where I still attend the same gastroenterologist. Over the years my Crohns has flared up occasionally but was monitored with routine endoscopes and colonoscopies and MRI scans. I have been on pretty much every medication available for my Crohns
flare ups. My symptoms at this point had developed into mucus and bloody diarrhoea and urgency in needing the toilet. I had lost
weight and was put on weight supplement drinks to try help me gain weight.
2018 began my longest flare up that I could not get under control or get much relief. My urgency worsened and I was admitted to hospital after a colonoscopy in 2019 which showed a stricture (narrowing) of the large bowel close to the rectum. This was the first time the possibility of surgery and a stoma were discussed with me. I was devastated and hated the thoughts of having a ‘bag’. The
surgeon was willing to let me try a biologic medication infliximab to try buy me some time, before possibly needing the surgery. I spent the
next 6 months on this treatment but got no relief from the symptoms and developed infection after infection and because of
having to take lots of antibiotics, my immune system was so low, and I picked up everything. Eventually in January 2020 I was admitted to hospital for emergency surgery. The plan was partial resection of my large bowel giving
me an ileostomy. I felt so happy that my 2-year flare could be coming to an end, and I could start living again instead of surviving. I met with the stoma nurse, and she marked out where to place my ileostomy. She explained all about ileostomies and about emptying the bag. I felt prepared. The following day I had the surgery and woke up smiling. I had no Crohns pain, I could not believe it. I also discovered I had a colostomy not an ileostomy as
planned. This was a decision by the surgeon to try and leave as much bowel as he could for a possible reversal in the future.

I have named my stoma Winnie, (as in Winnie the Pooh!) I picked his name after first meeting with my surgeon in 2019. (I love Disney).
When I got home and was recovering, I researched to see if there were any support groups for people with stomas. While the stoma nurses and family and friends support were great, I wanted to meet other ostomates with a stoma. This is when I found the Ostomy Association of Ireland and the Tullamore group had a meeting the following week. So, 5 weeks after I had my stoma surgery, I went along to meet everyone at the Tullamore group,
who meet bi-monthly on the second Wednesday in the Dochas Cancer Day Centre from 6.30 – 8.30pm. I am looking forward to returning to in person
meetings once Covid restrictions allow Local Ostomy Support groups to be able to meet up again.

My recovery was going well, and I had adjusted to changing my bag. Then with covid and lockdowns my follow up care became phone calls and emails. This was quite helpful in that I could send pictures to my consultant of my stoma if I felt there were any issues. After 4 months of having my colostomy,
I started to develop skin irritation. Between my GP, stoma nurse and consultant I was prescribed pastes and topical steroids and barrier creams. I was having lots of leaks and this further irritated skin around my stoma. Eventually I ended up going back into hospital as after assessment I had developed a large abscess around my stoma site. This was repeatedly drained. It was believed my Crohns had developed on my skin coming from my stoma.
I had a scope done through my stoma and it was recommended to try a further biological treatment – vedolizumab, to try and get Crohns
under control enough so they could operate again. The plan was to remove the remainder of my large bowel. I met with pre op team
and stoma nurse beforehand and my surgery was scheduled for 2nd March 2021. My second surgery was a total colectomy and I discovered they
had also removed my appendix at the same time! I felt sore when I woke from surgery, but only where my old stoma was. I had a new
ileostomy, Winnie 2.0 new and improved. I was left with an open wound that needed to be packed and dressings changed every day. I developed an infection in this after 3 weeks as it was healing too quickly leaving a pocket of puss. A course of antibiotics cleared this up and it was fully healed to
skin level in 3 months. I am still on vedolizumab infusions for my Crohns every 5 weeks and managing my stoma well with no issues.

I love Winnie my ileostomy for giving me my life and independence back. Since having my stoma surgery I have started kayaking, this is something I never would have dreamed of doing before for fear of needing the toilet urgently while out in the water.
Winnie really has helped me to be more confident and try new things. I am starting to have a Quality of Life again to be able to Live Life to the Full again.

I attended my first ostomy event on 2nd October 2021 on World Ostomy Day in DCU. I met some lovely ostomates and really enjoyed the day. It was also great to see most of the Ostomy companies exhibiting their ostomy products and their stoma nurses were there to give advice and be of support to ostomates attending the conference.
Thanks for reading my story,
take care.

Notes

This article was first published in the Ostomy Irish News magazine, Issue 9, Autumn 2021

The author’s name and photo are being withheld until we receive permission to publish them online.

Although the Ostomy Association of Ireland may be mentioned in this article, it no longer exists.
You can find support through local groups instead — we’ve listed them here, and we update the list regularly.

If you’d like to share your story on Stoma.ie, please email it to info@stoma.ie.
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