I've had ulcerative colitis now for over sixteen years, I was diagnosed at just fourteen years old after suffering for about five years and spending a whole year bed-ridden due to my health being so low, but over that year was when I started my very first blog so I supposed something good can out of that year. I've learnt that after everything I have been through my body has survived so much and that makes me a warrior, I am a colitis warrior and this is the truth about how shitty ulcerative colitis really is.
You will suffer a lot of pain. Pain is the worst thing in the world, and if you don't have ulcerative colitis yourself then imagine labour pain because a lot of doctors have proved that ulcerative colitis pain is very similar to labour pains, if not worse when the sufferer is in a bad flare up. Hot water bottles, nightdresses and meditations really help me so I highly recommend them.
Taking medication isn't always going to help. The amount of medications you will have to try before your body agrees on the right one is silly and for a little while at the beginning, you'll feel like a lab rat, it's horrible and upsetting. Your doctor will give you medication after medication but they don't all help at all and sometimes you need to help yourself with rest and meditation, also I highly recommend cannabis oil.
You will need to listen to your body. You will need at least one afternoon a week where you will have to take some self-care time, some weeks you'll need the whole week to rest and recover. Some days you will have no energy at all and you have to listen to your body and do exactly what it recommends and needs; if you don't feel like eating then don't eat, if you want to sleep then sleep. Listen to yourself.
Hospital appointments become a thing of the norm. I have completely lost count of how many hospital appoints I have attended and I am so thankful but each and every one, even the ones where I received bad news. Our NHS is the most amazing and you will learn that very quickly. However, your treatment will consist of very horrid things like colonoscopies, water tests, poop sample tests and about a million blood tests.
Having a supportive nurse means more than you'll ever realise. My nurse is my lifesaver, and without him, I have no idea where I would be or honestly if I'd even be alive. He is so supportive and has been there with me through so much, bad times and good times. I can't thank my nurse enough for everything he does for me and when you find a nurse who you love and trust, hold on to them dearly because they really are one in a million.
You need to be open, even if it is embarrassing. When you get a partner you'll need to open up to them and tell them what you're going through. If someone really wants to be with you then they will want to be with all of you and know everything about you, so tell them. If they don't stick around then they really aren't worth being in your life.
It affects your mental health. Ulcerative colitis makes you feel very alone, all of the time because no one around you knows what it's like to feel this way and some days it's a real struggle to just get through the day. Pain will be that bad times that you really will want to end it all, please if you ever feel like this then come and talk to me because I know what it's like to feel this way and you aren't alone.
You'll learn who your real friends are. Having a supportive people in your life means the world for anyone but when you have ulcerative colitis having supportive people in your life means so much more. They will understand when you have to cancel plans last minute that have been planned for weeks, months or years. They will understand when you have to spend ages in the bathroom and they have to entertain themselves sitting on their own. The online community is one of the best things out there and everyone is so supportive and loveable because we all know what each other is going through so are always there to give any help or advice, or even if you just need a shoulder to cry on and someone to moan at.
Do you have ulcerative colitis or known anyone who has this horrible life-long disease?