By Amanda Sarosi, diverticulitis and low anterior resection syndrome (LARS) patient
I first experienced symptoms of diverticulitis – a painful disease caused by small bulges or pouches in the walls of the intestine – when I was living in America, it was quite a surprise diagnosis as I was only in my 30’s and it is uncommon before the age of 40. My first case was uncomplicated and I recovered quickly, but was told I would likely experience it again.
When I experienced it again in 2015 it didn’t go away as quickly. This episode left me with constant low pelvic pain along with a strange discharge. I was living in Alaska and had numerous doctor visits and various tests, including a colonoscopy and CT colonography, which gave me no answers. I was back and forth between gastroenterology and gynecology both saying the issue was the others one’s realm of expertise. I asked both if I could possibly have a fistula but they dismissed this idea saying it would be very rare as I hadn’t had a hysterectomy.
During this time my symptoms were manageable, but after moving back to England my symptoms got much worse, which led me to finally being diagnosed with a colovaginal fistula – a relatively rare complication of diverticulitis where a tract had formed between my colon and vagina, meaning feacal matter can leak through the vagina. This was highly distressing and very unpleasant to deal with, and I am still dealing with the trauma from the psychological and social impact. It was not something I felt able to talk about with many people as there is such a taboo around poo, which we really need to break so people feel less alone when dealing with bowel issues.
I had surgery to try to repair it, unfortunately this repair did not hold and my symptoms became much worse, making it very difficult to go about my days as normal. I was then referred to a colorectal surgeon and a gynecology surgeon who scheduled surgery to remove some of my colon and then repair where the fistula was. There was a lot of discussions about what would happen during the surgery as this was a relatively rare scenario. During the surgery they realised they had to take a lot more colon than they had expected.
I am very grateful for the surgery, but I was not aware it would leave me living with low anterior resection syndrome (LARS). The worse symptom of LARS for me is having such an ‘erratic colon’, which means I am constantly going to toilet often multiple times in an hour. I have learnt to manage this somewhat by limiting eating and taking medication to slow down transit time when needed. I am a self-employed complementary therapist so I am able to set my own schedule, but it is still very challenging as I cannot just stop a treatment to go to the toilet. I have to limit what I eat before the days I work – less going in means less to come out!
Initially, I thought these symptoms were temporary but many years on, I’m still living with them. I need to plan socially, and my friends understand that I often need to cancel last minute, as well as needing to go to places with toilet access. Most social functions revolve around food, but I tend to not eat at them in case something I eat sets of an erratic episode. Everyone wants to know why I am not eating, so I explain my condition but nobody’s heard of it and if you are around a dinner table nobody wants to hear me discussing my bowel habits, so I never really know what to say! I currently live near the beautiful Pembrokeshire Coastal trail and love walking it with my dog, but this is challenging and takes a lot of planning to ensure I will be able to find a toilet.
It’s important to me that Bowel Research UK is raising awareness of what Low Anterior Resection Syndrome is and funding research on the disease. People often assume if you have bowel disease, surgery will make everything better, but for some people that is just the start of the journey. Being part of the charity’s PaRT network allows me to share my insights like this to shape research, which I hope will mean people with my condition in the future have better treatment options with fewer side effects.