We love being able to share our patient’s stories and experiences with you – here we meet Alannah-Jayne, whose experiences led her to start writing her own blog to break the stigma and encourage open conversation about auto immune diseases and stoma care.
“At the age of thirteen, I started to get unwell where I would always struggle with constipation or having to go to the toilet more often than was normal for me. When my time of the month came around, it got even worse and I would vomit. At the age of fifteen, I ended up with tonsillitis and glandular fever several times and I was on antibiotics quite regularly. But by the age of seventeen the infections and bowel issues had become my life; I was constantly on the toilet and on antibiotics. When my time wasn’t spent on the toilet, it was spent in bed trying to catch up on missed sleep from nights spent in the bathroom. My mum took me to the doctors so often and nobody knew what was wrong with me, but they refused to actually look into it. I had to get anal scopes with a scope that they usually use to look into your ears and nose which ripped my rectum and made me bleed; blood tests which showed abnormal inflammation and white blood cell count levels and my weight plummeted so low that age twelve to thirteen clothes became too big for me. Never mind that I had already missed out on so much school. Eventually one day at the doctors with my mum, due to passing out on the toilet from the pain of my bowel movements, after researching online and finding information about Inflammatory Bowel Disease, the doctor we saw that day referred me for an urgent colonoscopy at Aberdeen Royal Infirmary. A few months passed by and the day for my first of many colonoscopies came around and I was finally diagnosed with Crohn’s Disease and Ulcerative Colitis and started on oral steroids (which tasted terrible no matter how much milk you drank!).
For years I was on many different types of medications which are types of chemotherapy and spent my life in and out of hospital. I had many colonoscopies, endoscopies, surgeries and Botox injections all under General Anaesthetic. At age twenty, all medications had failed and I spent a few months in and out of hospital (10 months altogether to be exact) with one week at home, then the next week readmitted ongoing from January 2015. In June of that year, I contracted a bacterium called Campylobacter and was readmitted, which made the IBD flare up even worse and turned my large bowel septic, at that point life was pretty scary for me and I longed for my own bed and my hot water bottle. I was taken into theatre as an emergency within two days and had my large bowel removed. I woke up 7 hours later with a clear bag on my stomach and a red thing sticking out, but it didn’t really bother me until the first bag empty. Afterwards I ran back to my hospital bed trying not to vomit and I couldn’t hold back the tears – it was too much at once. After two days the stoma nurse came to visit me for the first bag change and got me independent with my stoma from then on!
A week later, I was finally home and despite being dumped on the way home from hospital by my boyfriend at the time, I remained positive and named my stoma Lola. Just before having my stoma operation after being inspired by other chronically ill people, I decided to start writing a blog (www.alannahjaynesblog.com) so I could help raise awareness on all illnesses and breaking the stigma! Being able to write about having a stoma and helping others has really helped my recovery and acceptance of having not only multiple illnesses but also having a stoma. I have made lifelong friends with other chronically ill people and some I am SO glad to call family.
I have had both good and bad experiences with my care, including hospital admissions where I’ve been admitted to wards in which there are no nurses trained to deal with stoma issues and I had to struggle with bag changes. I’ve also had a hospital admission on the opposite side of the country when I was travelling to see friends, I had gotten sepsis again and was admitted to Leicester General Hospital and the care there was above and beyond for me – couldn’t fault it at all! I suffer with regular blockages and over time I have learnt how to deal with them. I have also experienced falling in love with my partner who also has a stoma and Crohn’s Disease, we celebrate our first-year anniversary in November!
Since then, I have had some stoma issues but nothing that has resulted in more surgery for that, however I have had other surgeries for other things. I have been able to try many products for Lola stoma after searching “free stoma samples” on Google, but only now, three and a half years later, have I found the right combination for Lola and me after coming across Trio Healthcare products. Once I’d tried their amazing Elisse skin barrier spray, I wanted to try their other products too, so now I use; Elisse Skin Barrier Spray, Elite Adhesive Remover Spray, their Seals and Silken Stoma Gel! I also use light convex 1-piece drainable bags and everything combined works really well for me. Not only have I now got really good products, but I also have great support from the team who have helped me at Trio! I am very grateful to have the support from both Trio and my home delivery service as well as all online.