Here is my timeline of events starting with when my ‘colitis like symptoms’ first emerged, undiagnosed. There may be too much detail for some of you but for others notes and anecdotes of my own personal struggle will hopefully resonate and vindicate your own hopes and fears.
I was officially diagnosed with Ulcerative Colitis (UC) on the 25th of April 2017, although I believe my UC story started back in 2012…
I had just turned 19 and was living in London with my boyfriend Tom on our gap year. I had a full-time job in retail and was all sorted to go to Newcastle University in the September of 2012. Everything seemed pretty good, we had booked 3 weeks’ holiday in February 2012 to go skiing in Whistler, Canada. However, on the flight over I ate a chicken fajita which came out of a cardboard box (those that know me know I would never usually eat this, but it was a 10-hour flight and, well hunger!?) As soon as we landed I was immediately sick, causing a bit of a panic and delay in the airport but we travelled the 2 hours to the resort whilst I slept, over the next 3 weeks my stomach was a little sensitive, but I put this down to food poisoning.
Once back in London things started to get worse … the stomach cramps would arrive nearly every morning and have me doubled over in pain on the toilet with extreme diarrhoea, leaving me feeling nauseous, tired and unwell. I would often have to ring in sick to work, for the morning at least. After a couple of weeks of the pain, I went to the doctors and they referred me almost immediately to a gastroenterologist. Because of the ‘food poisoning’, in particular from chicken – this can remain dormant in the body and strike at any moment, so yes a sensitive stomach was one I might have for a while. However, in hindsight something to note – blood tests for inflammation were not taken and neither were stool samples – but at this point there was no blood or mucus in stools so maybe there was no need for the precautions.
Irritable Bowel Syndrome
“Irritable bowel syndrome (IBS) is a common, long-term condition of the digestive system. It can cause bouts of stomach cramps, bloating, diarrhoea and/or constipation. The symptoms vary between individuals and affect some people more severely than others. They tend to come and go in periods lasting a few days to a few months at a time, often during times of stress or after eating certain foods (NHS, 2014).”
In the meantime, I was diagnosed with Irritable Bowel Syndrome and given peppermint oil tablets to take, blood tests to check if I was celiac and told to keep a food diary. I followed a gluten free diet for quite some time, and whether this actually helped or not isn’t 100% clear, I was still getting the symptoms. Very heavy meals such as lasagne, burgers, bolognaise would trigger my stomach, anything meaty really, also acidic things such as wine, fruits and alcohol would also trigger an ‘attack’. But again, I was highly stressed at the same time for a number of different reasons so this was also thought not to be helping, which it probably wasn’t, but I do not think it was the only reason for these symptoms. I don’t quite know when things became ‘normal’ again, but they just did… and in the July of 2012 I had my Capsule Endoscopy booked.
I will leave a brief definition here, but here is a more detailed post on the overall experience.
“A wireless capsule endoscopy is a relatively new type of endoscopy. It involves swallowing a capsule that’s able to wirelessly transmit images of the inside of your stomach and digestive system. The capsule is the size of a large pill and leaves your body naturally when you go to the toilet. (NHS, 2016).”
It is also worth noting that a Capsule Endoscopy is most effective looking at the small bowel.
The results came through pretty quickly and everything was all clear. There was nothing abnormal, no inflammation, bleeding or anything to be concerned about. A huge relief! And by this point I was feeling like my normal self, the symptoms had more or less disappeared and I was off to university!
September 2012 – May 2016
University started – a pretty stressful time – and I was absolutely fine! I went about living life normally, I might have had the odd sore stomach, or cramping, but this could have been many number of things and the symptoms lasted no more than a couple of days. I also just accepted the fact that I did have IBS and a sensitive stomach. I took peppermint oil tablets almost daily and drank a lot of peppermint tea to ease and prevent any symptoms – I was exercising throughout the week and eating very ‘healthily’ a lot of whole foods etc.
June 2016 – December 2016
In May/June of 2016 Tom and I went to Miami and New York and I remember clearly throughout the holiday I had a really upset stomach, again I thought it was the same vibes from 2012 – I was going through a particularly stressful time at my old job and actually in the process of changing jobs etc. So, was it stress again? I returned to London and just got on with life, however towards the end of the year around September/October things became different, I was getting increasingly more pain in my stomach, constant and chronic diarrhoea. It wasn’t until November 2016 I went to the doctors. I was at work feeling pretty miserable and thought a banana would help, within 5 minutes of me eating it I burst into tears in the bathroom at work at the sheer amount of pain I was in. I immediately rang the doctors and within the hour I was sat in his office.
He pulled up all of my previously history from 2012 and decided the IBS was back, he prescribed me Imodium to stop the diarrhoea as a temporary relief, a drug called Mebeverine which is known to help people with IBS as it is an anti spasmodic drug to reduce the cramps, anti-nauseous tablets and sent me off for blood tests as well as a stool sample. And for 2016 that was that … Tom and I went off to New York for New Year 2017, we had the most wonderful time but again my stomach was getting in the way, I was physically drained and tired all of the time, and wanted to remain near a bathroom because the diarrhoea was still an issue. Looking back it really restricted my holiday as I was always being cautious about how much I ate or drink, where we out etc.
January 2017 – April 2017
Three months more or less passed by, I was getting much worse and now blood/mucous were appearing along with chronic diarrhoea. I had lost 1.5 stone within a short space of time. This is when alarm bells were being raised in my head, so I rang the doctors and much to their surprise they were shocked to know that I hadn’t been given my results from November. I visited the GP again and he explained that I was borderline anaemic, I had a vitamin D deficiency and that my blood tests came back raised for inflammation (ECR and CRP), and that my stool samples were also potentially inflamed. However, he had nothing to reference so I was sent for the same tests and referred onto the gastroenterologists. These results landed in February and were actually kept from me – I requested for my hospital appointment to be moved forward as it wasn’t due to take place until the 9th of May 2017 (at the point of writing this post it is the 8th of May 2017). With all the energy and fight I had left I managed to secure an appointment much earlier, but this was not easy! Again, more blood tests, more stool samples – and again higher and higher inflammatory markers were coming back – looking back I don’t know how I managed… I had my first official Inflammatory Bowel Disease appointment in April where it was more or less confirmed that I do have IBD, I immediately cried – not because of the shock, but the relief at an answer but also the fact I was getting the answer I needed.
Luckily things then happened very quickly, the IBD nurse prescribed me an immunosuppressant called Asacol and referred me on for a colonoscopy. Within a week, I had had a call and an appointment booked, the big day? 25th April 2017 – the day I was diagnosed with Ulcerative Colitis.