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“Their stories have filled me with confidence that this was the right decision for me” – Beatrice’s story
In 2023 I shared my diagnosis story and journey with Crohn’s Disease.
From 14-17 I experienced acute symptoms (extreme constipation, diarrhoea, weight loss and pain), and was eventually hospitalised for three months. in 2010, I underwent several unsuccessful treatments and surgeries, until I had my first ileocaecal resection at the age of 17 in the UK. A bowel obstruction in 2012 led to further open surgery, and in 2023, after having moved to Australia, I underwent another bowel resection to remove diseased bowel at the neo terminal ileum, as well as another stricture. Recovery was complicated and long winded, with multiple hospital admissions for peritonitis and wound dehiscence respectively, with the latter requiring a vac assisted dressing for many weeks.
The remainder of 2023 was littered with health issues; from disease re-occurence in the weeks following surgery, to the beginning of weekly adalimumab and a hospital acquired C-Diff infection. I struggled with chronic pain, fecal incontinence and weight loss, while pelvic floor problems exacerbated by my IBD. All in all, I was struggling a lot, both mentally and physically.
Towards the end of the year, I began serious discussions with my gastroenterologist to have an ileostomy created. I am grateful that my specialist is not only amazing, but also very empathetic and supportive. We exhausted other medical options, including trialling medications to slow bowel transit, bile acid malabsorption treatments such as colesevelam, cholestyramine (which almost caused a large bowel obstruction) and lots of loperamide, all to no avail. In March 2024, we reached out to my surgeon from the previous year, who booked me in for an elective ileostomy less than six weeks later.
I underwent loop ileostomy surgery via laparotomy on the 15th of May. The operation was successful and I moved to the ward, where I began mobilising and attempting fluids within hours of surgery. Unfortunately, I quickly experienced a scary ileus, which required NG tube insertion to decompress the bowel. Although pain was well controlled, and my stoma (whom I have now affectionately named Sid), began working within a few days, I had substantial stoma output of close to three litres a day (the normal range for an ileostomy ideally being under one). I struggled to stay hydrated and was constantly nauseated. A 4 or 5 day admission turned into 10 days!
I was discharged under the care of community nurses to assist me with daily midline incision dressing changes. Unfortunately, my midline wound got infected twice post-op, which required countless antibiotics, two further surgeries to drain and open it all up, and then another wound-vac dressing under hospital in the home care unit for nearly 8 weeks.
I am now almost four months post-op, and despite all the setbacks, I’m now 99% healed, have returned to work full-time, am carefully returning to exercise. My daily life has been hugely improved by Sid the stoma. It goes without saying that this journey has been a rollercoaster, and has been made easier by having a wonderful medical/surgical/stomal therapy team — using a care plan to see psychologists throughout this transition — and a supportive family (including my sisters in the UK who travelled to care for me). I still have active disease throughout my bowel and rectum, and have made the decision after a follow-up with my surgeon to look at making this stoma permanent in the coming year or two. In six months time we will review and make a plan, pending symptoms and disease management.
I have met some amazing people throughout this journey, both patients and professionals alike, and their stories have filled me with confidence that this was the right decision for me. Life with a stoma is certainly not an easy one, and also not an easy decision to make. In my case I can’t imagine life without it, and I look forward to see where life takes us.