The secret of success is learning how to use pain and pleasure instead of having pain and pleasure use you. If you do that, you’re in control of your life. If you don’t, life controls you.
With my diagnosis of Ankylosing Spondilitis (AS) three years ago, came the first of the prescribed medicines. My Rheumatologist started me off on Naproxen, although unfortunately I can’t be 100 per cent sure on the dosage. After doing a little bit of digging I discovered that Naproxen isn’t a drug that’s specific to AS. It’s a simple anti-inflammatory which is prescribed for various things. Here in the UK, medicine is unjustifiably expensive, and I’ve come to the realisation that you’re always given the cheapest drug first before you’re moved on up to the stuff that actually works and that also come with a price tag!
I took Naproxen for no more than a month and then started to get pains in my stomach. This developed into seeing spots of blood in my stool. Convinced that the Naproxen was not agreeing with me, I stopped taking the medication immediately. As time went on, every once in a while I’d notice signs of blood and this continued for a year until it started to take a turn for the worst.
I was sent for a colonoscopy, on my birthday, which was probably up there with one of the worst presents you could ask for, and the results showed that there was a presence of ulcers on the left and right side of my colon. For this I was prescribed Pentasa which is a mesalazine. Strangely, not long afterwards, I started to get an increase in my symptoms. My older brother too had been diagnosed with Ulcerative Colitis many years ago so I knew the signs:
What is Ulcerative Colitis?
Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed and produce pus.
The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon. If UC only affects the rectum, it is called proctitis, while if it affects the whole colon it may be called total colitis or pancolitis.
It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Crohn’s Disease.
Ulcerative Colitis is a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).
So, it looked just like it was described above. I’ll refrain from repeating the gruesome details, but let’s just say within a week or two the frequency of me passing a stool went from 4 times a day to 13! I was in total denial. I thought it would go back to normal eventually, that this would pass (excuse the pun). But I was fooling myself. I work as a Primary School Teacher and at the time, was fortunate that I had an adult in the room so I could make regular mad dashes across the hall to the toilet but it was embarrassing and I was confused about what was happening to my body.
When I called my Gastroenterologist doctor the next day, he told me to go down to the A&E, my notes would be there waiting and I would be immediately examined. My notes weren’t there. It wasn’t immediate. But I was examined and kept in for 5 days on a fluid drip and steroid drip. Both of which had me feeling much better by the end of the stay as an inpatient. I was sent home and signed off work for 3 weeks to recover. The effects of the medication et al. I will discuss in another blog. But this is the story of how I came to have two inflammatory diseases.
Image: Freeimages.com/Adam Ciesielski
It hasn’t been all bad. It could have been far worse. I could have had a severely traumatising diagnosis which saw me with a mere few months or days to live. It hasn’t been like that at all. But it sucks nonetheless.
I was 20 when I first discovered that I had a back problem. It started with me walking to the train station after a long day at my desk job and discovering that my back pain was so acute that I couldn’t properly lift my knees and walk like…well like a human being. Albeit over a decade ago, I still remember the strange and unusual method I adopted of shuffling my feet one at a time along the ground, in order to make what felt like a gruelling trek to the station.
From there it went downhill. There were numerous calls to the doctor and even a late night call to A&E. Embarrassingly, the pain was so sharp I had to phone my parents (who were only across the landing) for help. They called for an ambulance and by the time the paramedics arrived, the pain had subsided. Awkward. I felt like a fraud. I was taken in for checks and sent home with some co-codamol and told, as I would discover would be the medics go-to phrase, that it was just ‘back pain’.
My GP at the time was no use. Unfriendly, uncomfortable and for want of a better word unsympathetic. It didn’t seem to strike him as odd that a girl in her early 20’s was suffering as bad as I was. So, it went on for ten years until I had enough. The pain although not consistent for ten years was indeed chronic. I was feeling worn down by the constant changes in how I felt each day. It was draining. I called the GP again, this time speaking to a new doctor. I was all pumped up and told him how ready I was to investigate private health care. He insisted that there was more that could be done on the NHS first. I was referred to a physiotherapist who seemed unsure why I had been referred to her at all. Within five minutes she had confirmed that I who I really needed to see was a Rheumatologist. This is where the fun began.
I was sent for an MRI and had a Rheumatology appointment which confirmed that I had Ankylosing Spondilitis – a type of arthritis that affects the spine. It was a relief. Ironically. I was simply happy to have a name for it. Little did I know that it would be just the start of more names to come.