Today I am gonna be writing the first in a series about something a little more personal than normal – my Crohn’s disease. Maybe the best place to start would be how I was diagnosed.
Around last December, I started suffering from fatigue. It progressed until I was coming in from school, crashing on the sofa and sleeping. This fatigue had a rather profound effect on my schoolwork. Report grades started slipping etc. At first, everyone thought I was just being lazy. I didn’t know what was happening, so I decided I was going to get to the root of the problem.
I booked an appointment with our local GP for around February. I told her all about the fatigue. She send me for some blood tests. I came back as anaemic. At first, because it was the most likely cause, I was prescribed an iron supplement (ferrous fumarate, for those of you interested). More blood tests to check if it was iron deficiency. Next day, I could start taking them. I actually started to feel a little bit better (placebo effect!) but then received the results. It wasn’t iron deficiency. So, I stopped taking the iron. (It had horrible side effects!) More blood tests to see if I had a thalassemia trait (unlikely, I don’t have anyone Mediterranean in my family). They came back as negative. Still no explanation for the symptoms.
Half term came along and I actually started to feel better. I thought everything was over. School started again and it was apparent that it wasn’t. The symptoms came back with a vengeance. I also started noticing joint pains. This made my dad consider the possibility of IBD, especially given my bowels as a baby and more recently. I booked another appointment with the GP. She said that IBD was fairly rare and we should test for that later. I still didn’t know what was going on. I booked another appointment for a couple of weeks later to ask for a referral to a gastroenterologist. She said she’d discuss it with her colleagues.*
About a week later, at around 10:30pm, I started suffering from excruciating abdominal pain. We waited to see if it would subside, but at about 12am we decided I should go to hospital. Then our electricity failed. An hour later, I was finally taken.
First off, I saw the out-of-hours GP. She was convinced it was nothing and wanted to rule out appendicitis. However, she decided to send me home. I told her how I’d been visiting my GP for months to no avail. She tried to get hold of the Paeds surgical SHO. No answer. She left a message. Back to Paeds A&E with the assessment in hand. We took it to the nurse about 10 mins later when nothing had happened and I noticed a sign saying “Take all forms to the nurse” or something along those lines. I was taken to a cubicle.
The Paeds SHO arrived and Dad voiced his concerns that it might be IBD. I said how I’d been going to the GP for a while to no avail. After explaining the symptoms, she agreed that it was quite probably some form of IBD. I had some blood tests done at about 4am, after a sleep. I was then taken to Paeds South, the surgical ward (in case it was something surgical like appendicitis), where I waited. I was seen by a number of other doctors and sent for an ultrasound of my bowel. After this showed thickening of the terminal ileum it was decided that I should be moved to the non surgical ward in the children’s hospital. I waited some more and Mum came in to visit.
After waiting some more, I finally got seen by one of the paediatric gastroenterologists. He explained that they thought I might have Crohn’s disease. It was more than a little hard to take in at the time. Being diagnosed with a lifelong illness like Crohn’s is something I wouldn’t wish on my worst enemy. Anyway, I was given a can of Modulen IBD (disgusting stuff unflavoured) and was on my way.
I had some more tests such as a white cell scan, barium meal and follow through (odd after effects…) and finally a colonoscopy. The prep for a colonoscopy is hell. I also took the option of having it under general anaesthetic (my second time with propofol!) which my other gastroenterologist said was the best option afterwards. What was meant to take something like half an hour took closer to 2 hours. I have very oddly shaped intestines!
In the next installment of ‘Crohn’s disease’ I shall talk about what happened after I was diagnosed.
Goodbye for now.
*a week or so after my diagnosis, we got a referral letter in the post.