In August 2015, I was diagnosed with Crohn's Disease.
But my pain started months before that. At first, they weren't too bad. In comparison to how they became at least. I was doubling over in pain and being encouraged to see a doctor about it. At this point, I was hesitate at seeing a doctor, I had been a healthy child with little time off school for illness. I hadn't seen a doctor for many years as I hadn't needed to. In May 2015, this changed. The pain grew to be so bad it was beginning to affect my uni lectures. At this point I knew I needed to do something about it. I made an appointment to see a doctor the same day.
At first, the doctor wasn't sure what was causing my symptoms and prescribed medication that could help (one of which I am still on) but it wasn't a definite thing. I had lumps on my lower legs which caused extreme pain when standing (it hurt to even have a shower or walk into town) these were the quickest thing to be diagnosed as they could be seen, but not treated (for anyone interested, they are called Erythema Nodosum).
I couldn't eat very much at meals. In early stages, carbs caused most pain and I was in pain if I was hungry or full. My appetite dropped and I was struggling to finish meals. My pain was initially before and after food and it was so intense I was worried about eating, but I knew if I didn't, I would be in pain.
My pain (even now) is made worse by stress. Before my diagnosis, I experienced I highly stressful event that caused all my symptoms to become extremely worse for the next 36 hours, even after it was resolved.
Shortly after this event, I came home from uni for summer and temporarily registered with my old GP surgery. I had multiple blood tests (which I still have now, I've lost count how many I've had since May) and had a phone call after one appointment saying I needed to go to hospital the same day as they'd found something in my blood test that needed attention. To my understanding it was the marker for inflammation (CRP) in the body
was too high (it is still too high but considerably lower) that they referred to. I was in hospital for 4 days during which I saw many doctors and read many books and had a colonoscopy which confirmed the diagnosis of Crohn's. They then started me on steroids (prednisolone)
Medication as of December 2015:
- Mercaptopurine 75mg per day (1.5 tablets)
- Pentasa 2g per day (4x500mg tablets)
- Omeprazole 40mg per day (2x20mg)
- Ferrous Gluconate 600mg per day (2x300mg)
- Metronidazole 1.2g per day (3x400mg) (antibiotic, finishes in January)
All for treating my Crohn's and helping me live as normally as possible.
They don't help 24/7, sometimes I can do something that will make the symptoms worse without meaning to, I'm still learning what causes pain. I'm still learning what my medication can do. I'm still learning how my condition affects me.
I am not the same as someone else with my condition. They could share symptoms and medication, but what works for one person may make another worse.
I am living with an invisible illness and it's hard. It's not even been a year yet and it's difficult. Myself and my specialist are still working out what works for me. There is currently no cure for Crohn's Disease.