I was diagnosed with Crohn’s disease two months after my symptoms first started. I was dismissed from the hospital on numerous occasions being advised it was just period pain.
After weeks of tests and doctor visits, I went to a private specialist to get some answers. He could not touch my abdomen without me flinching, because the pain was excruciating. He wheeled me over to the hospital and demanded I be seen. A day later I was told I had Crohn’s disease. I suffered weeks of unbearable pain unnecessarily. I was given steroids and a maintenance drug, and had my first, major bowel resection a few months later.
I had a temporary ileostomy and carried on like nothing had changed — partying and eating everything. I was oblivious to my condition and the importance of looking after myself. My ileostomy was reversed a few months later, and I ended up with a wound infection that took a lot of time to heal. This was a confronting time for me as it was up to me to look after my wound. I was left with some major scars after the reversal and infection.
Due to wound complications, I had abdominal repair surgery in 2010. I faced another wound infection. In 2015, my symptoms started to flare up. I developed fistulising Crohn’s and underwent multiple fistula surgeries, tests and so on. I had regular endoscopies and or colonoscopies, as well as multiple admissions due to strictures, which is when the bowel thickens or tightens due to the prevalence of the disease, inflammation, or the outcome of surgery. The strictures were stretched open using a ballooning technique used during my scope tests and in 2017 I acquired Long QT Syndrome due to complications and extreme symptoms.
In 2018, I pulled myself out of 5 years of depression! I stopped drinking, started exercising, and ate healthier. My strictures behaved for two years. A disgusting DV attack in 2020 and the sudden death of my Mum in 2021 saw my mental health go down. The stress was enormous, and my symptoms came back worse than ever. In September 2022, my gastro team planned to have my strictures removed. At first, only one was meant to be removed, but two were removed. The bowel leaked twice and ended up hosting another ileostomy. In late 2023, I found out that I had been battling Q-Fever for a few months, which can affect those with compromised immune systems.
In November 2023, tests revealed that I had diversion colitis, the outcome of a lack of flow through my large bowel and colon. My large bowel was suffering from a lack of nutrition. I saw my surgeon and a reversal was planned for January 2024. (I was overly disappointed as my loop ileostomy gave me the freedom to venture out without having to find a loo, and most importantly, it gave me the freedom to travel long distances without a driver due to the onset of pain in my tummy, frequency issues, and anxiety.) January 2024, surgery day. I remember heading to the theatre and being awake while they inserted an arterial line into the artery in my wrist. A cannula was inserted, and then I was wheeled into the operating theatre, where I moved to the operating table.
An oxygen mask was put on. I was given some anesthetic and asked to count to ten. The next thing I remember was waking up in my room. I got up, had a shower and felt one hundred times better. Days 5 and 7 were a little worrying as my medical team thought I had another bowel leak, so they rushed me in for a CT scan. Fortunately, my bowel was still in one piece. My bowels were pretty upset initially. I was on the loo up to 27 times per day for the first 10 days. Once I worked up the courage to tell my medical team that I needed certain medications at certain times, things improved. My wound looked great initially. I was eating and drinking fine and walking as much as possible, but was struggling with my low pressure from time to time. My frequent toileting, and an issue with my wound, made my stay in the hospital a long one. The frequent need to go to the toilet started a new and painful ache in my colon. It took a few weeks for this to die down, and a recent sigmoid scope gave me the all-clear for any issue in my large bowel.
I have just passed the 4-month mark since surgery and I have started moving more. My wound has just healed for the third time after getting blisters and most importantly, my toileting has improved. I am back to having anxiety about needing to know where a toilet is when I am out. However, I am as healthy as possible and have so many great things happening, I can’t complain. I miss my pouch and the freedom it gave me. I was proud of my pouch and will always welcome one if it is needed in the future. If you know someone who has one, understand that it is not always their choice to have one. But it can make all the difference to their health and quality of life. Be kind and seek to understand, not judge. Please reach out if you would love to connect. Thank you. Leah xo
#FlushTheStigma.