Ulcerative Colitis (me)
The hardest part of my ulcerative colitis diagnosis, so far, has probably been the trial and error with medication - meaning I haven’t been healthy and well for a prolonged period of time since the diagnosis. On top of this, it all happened over my first and second years at university, and at times it’s been quite a struggle to keep doing well with all my assignments etc.
It’s coming up to the year anniversary of my proper diagnosis now (not my top ten anniversaries admittedly), and I feel like I’m now getting to the stage of understanding the disease well.
If you don’t know, ulcerative colitis is a type of inflammatory bowel disease (IBD – Crohn's is the other main one) and its basically your immune system attacking parts of your intestines (it's also an autoimmune disease). This results in inflammation (damage) which can cause symptoms like pain, blood in your stool, nausea, diarrhea, constipation etc.
It's generally managed with medication – but as mentioned it can take a while to find a medication that works for you, it varies a lot person to person.
As I write this, I’m in remission (when your symptoms aren’t present or aren’t too bad) and have been for about two weeks. Before that I had about 3 months of varying but fairly bad symptoms – it wasn’t too fun; before being put on a strong steroid medication called prednisolone which helped a lot.
On top of the prednisolone – which I’ve nearly finished tapering off – I'm also on a medication called mesalazine and ferrous fumarate (iron) tablets.
One of the things I’ve found hardest to get my head around is that I have the condition for life – I can’t really get better from it, I can just manage it as best as possible.
The main symptoms I experienced when this all started which made me go to the doctor were going to the loo a lot and finding blood in the toilet. I then had various tests, lots of blood taken and finally a colonoscopy (which really wasn’t that bad – I was awake for it and didn’t take any pain killers – the worst bit is by far the prep you have to take beforehand!).
The colonoscopy confirmed that I had IBD, though I didn’t get the diagnosis of ulcerative colitis until a bit further down the line (not that it made a huge difference).
When you get a diagnosis of IBD, you get access to an IBD helpline – which (at least for me at Salford Royal) gets you through to your IBD team, who can help you with medication, tests, flares etc. and are generally your first contact with anything related to the disease. My main piece of advice for anybody getting diagnosed with IBD would be to contact the helpline at the first sign of a flare up. Even if you’re already on medication, you may well need another stronger one temporarily to help bring the symptoms back under control.
Don’t feel like you’re wasting their time or anything – it’s what the helpline’s there for and the quicker you tell them the quicker they can help. I went too long during my first real flare before calling them, because I thought the mesalazine would sort the symptoms on its own, when actually I needed something else too temporarily.
Thankfully, there has been a silver lining to my diagnosis. I’m studying to be a journalist and am interested in health journalism – so through being in and out of hospital myself I’ve learnt a lot and can relate more to others I talk to with conditions.
One final thing that helps me is remembering that not only are there loads of people out there with the same condition as me (around 300,000 in the UK), but so many people out there deal with health conditions and problems of their own – so if you’re struggling with one yourself, just remember that you’re never on your own.
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