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?
With love, Alisha Valerie. x
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That sounds awful, i couldnt even imagine going through that. You are so strongReplyDelete
Rebecca Elaine x
Thanks so much lovely 🌸✨Delete
I’ve never heard of it - it sounds horrendous! The only person I know with a life long health issue is my mum with hyperthyroidism xReplyDelete
Super sorry to hear about your mum babe, hope she is doing okay! 🌸✨Delete
I know someone who goes through similar and it's awful to watch. I'm so sorry you are having to deal with this.ReplyDelete
Aww sorry to hear about your friend darling, and thank you 🌸✨Delete
I know the Feeling as I have Crohns. Keep your chin up, you are stronger than you realise hun xxReplyDelete
Oh darling I had no idea that you had Crohns, super sorry to hear that! 🌸✨Delete
This sounds awful :( you are so strong! This post gives a better understanding to people who don’t know much about it though (like myself)ReplyDelete
I'm so sorry that I'm raising awareness on this subject babe. Thank you for reading 🌸✨Delete
I have severe stomach pains and have done since having my daughter. Nothing has worked to treat it and the pain is just as bad as labour pains. Sometimes it lasts a few days, sometimes it can last a few hours. It's incredibly tough and it doesn't help having IBS alongside it. So I sort of understand the pain but it must be so tough for you. It's horrible being in agony and missing out on so much. Just hopefully one day there will be the right cure.ReplyDelete
Lisa | www.ohluna.co.uk
I'm super sorry to hear that you struggle with your tummy too babe, it is horrible isn't it?! Sending you so much love 🌸✨Delete
This sounds so painful, sending you all the love in the world angel! Such an informative post!ReplyDelete
Love, Amie ❤
The Curvaceous Vegan
Thank you so much gorgeous 🌸✨Delete
It makes me so mad that when you’re in your hour of need you really learn who your real friends are! I know this post is going to help soooo many people out there. Proud of you!!ReplyDelete
Oh darling, thank you so much this really means a lot to me! 🌸✨Delete
In all honesty babe, I had to look up what ulcerative colitis was because I'd never heard of it - I hope you don't think me ignorant by saying that but I'd simply never known anyone who suffers from it! Which I think just highlights how important posts like this are!ReplyDelete
I do have friends with other lifelong conditions such as MS etc. and I think sometimes people don't understand the hidden symptoms, flare ups and just how difficult things can be day-to-day.
Thank you for writing such an honest post - it's certainly helped me to understand a little more and I hope it helps others too! xo
Sian | www.siankathrine.co.uk
Thank you so much for actually taking the time to look up my condition babe, it really means a lot to me. I'm super sorry to hear about your friends suffering beautiful, and thank you so much for such an awesome comment babe. Adore you so much! 🌸✨Delete
It is such an important disease that not many people know about it - my boyfriend's sister has it and it is awful. I am also myself waiting for my first Gastroenterology appointment to hopefully get to the bottom of everything and get a diagnosis! Thank you for writing this post xxReplyDelete
You're more than welcome and I'm super sorry to hear about your boyfriends sister doll. 🌸✨Delete
Oh bless you! Sounds awful xReplyDelete
It can be 🌸✨Delete
I don't know if you watch Hannah Whitton on YouTube but she has this and has just had a stoma operation due to a recent flare up. I never knew anything about the condition until I watched her videos about it and she's so open and honest about it too, so for someone who has the same condition she had, I'd definitely recommend giving them a watch! It really does sound like an awful condition so I admire anyone who deals with it. Hats off to you.ReplyDelete
I just commented about Hannah Witton too and just noticed your comment after I posted mine! She's such a wonderful human. :)Delete
I've never heard of her babe but will be checking her out for sure, thank you so much for your comment and for making me aware of her! 🌸✨Delete
this is extremely informative. It really helps get a sense of what you are dealing with. I'm so sorry you have to live with this. You are so strong for sharing.ReplyDelete
Oh gosh, thank you so much lovely 🌸✨Delete
You are so incredibly strong going through all of this.ReplyDelete
Aw thanks lovely! 🌸✨Delete
You are so brave for talking about this, it sounds like such a horrific condition and it's amazing that you're raising awareness xxReplyDelete
Gemma • Gemma Etc . ❤️
Thanks so much Gemma! 🌸✨Delete
Oh wow, that sounds really awful. So honest of you to share this post.ReplyDelete
Thank you 🌸✨Delete
What a brave and honest post! I was diagnosed with suspected colitis a while ago in the midst of several other illnesses but have been past from pillar to post! Well done for sharing something so personal, I bet you have made loads of other people feel a little less alone.ReplyDelete
Thank you so much for such a wonderful comment beautiful, that really means a lot to me and I'm super sorry to hear about your diagnosis! 🌸✨Delete
I don't personally know anyone who has UC, but have you heard of the YouTuber Hannah Witton? She had it for years and she's actually recently had it removed and she now has a stoma! If you haven't seen her channel, I'd definitely recommend checking it out because she talks about UC a lot.ReplyDelete
I've personally never heard of her but I'm going to be checking her out for sure! Thank you so much for your comment Charlotte 🌸✨Delete
Such a brave post to write :) I think you are so amazing to share your storyReplyDelete
Aww thank you so much Ezara! 🌸✨Delete
You are so brave, we cannot imagine what you're going through. I don't personally know anyone with this, so thank you raising awareness about this and sharing your story.ReplyDelete
Jessica & James | www.foodandbaker.co.uk / www.foodandbakertravels.co.uk
It may sound silly but I'm super happy to know that you now are aware of this and you both understand it a little better. Thanks for your comment 🌸✨Delete
oh Alisha, I'm so sorry that you have to go through this! You are so strong lovely, and just know that you have a huge support system from your blog readers- like me - to talk to XxReplyDelete
Oh Angela thank you so much, that really means a lot 🌸✨Delete
I'm so sorry that you've had to suffer all these years. Just remember, all of these struggles have make you the strong woman that you are.ReplyDelete
I couldn't agree with you more, thank you so much babe 🌸✨Delete
I'm so sorry you suffer with this, my Mum had an op last year and now has a ileostomy bag, her UC got so bad it nearly killed her but she's much better now. After seeing how poorly it can make a person, I really do sympathise & I'm sorry you've suffered for such a long time :( x xReplyDelete
Ellis // http://www.elliswoolley.co.uk
Oh lovely, I'm so sorry to hear about your mum - it really is such a horrible thing to live with. Thank you for your comment beautiful 🌸✨Delete
I’m so sorry to hear that you suffer Alisha, but I love how brave and honest this post is! Sharing your experience will for certain help others, as I’ve never heard of this before so it’s great that you’re putting your own experience out there!ReplyDelete
Thank you so much lovely, your comment really made me smile! 🌸✨Delete
This post is so great, you're going to help someone possibly identify that they have the condition too, so it's great to see that you're raising awareness. It sounds awful, and I hate to see someone suffering, but I'm glad you've got lots of support around you, including a great nurse.ReplyDelete
Amy | hookedonthemusic.com
Thank you so much, that really means a lot to me 🌸✨Delete
I learnt a lot from this blogpost and it's important that people educate themselves about this. Well done for bringing it out there!ReplyDelete
Thank you so much Marc! 🌸✨Delete
I was diagnosed with UC in 2009 although mine quickly progressed. I had surgery just 2 months after my symptoms first started to remove my colon. I've had a rough time with all the operations but I'm pleased to say my ileo anal pouch works wonders.ReplyDelete
I'll never forget the pain from colitis though. The very first night I spent in hospital before my emergency operation was the worst night of my life! I was up 20 times in the night rushing to the toilet and the stomach cramps were horrendous. I wouldn't wish UC on my worst enemy.
You're completely right about learning who your real friends are. I've lost a few close friends over the years because they didn't understand I couldn't do things whilst ill and weren't supportive. There is a great online community out there though where I've made lots of friends through.
Rio | www.oppositetourists.com
Never thought I could read something so close to home.ReplyDelete