This Disease Changed My Life



Hello, welcome to a new video. If you're new to here, I'm Jazzy the Deaf YouTuber who uses BSL (British Sign Language). If you don't understand what I say, turn the subtitles on so you can understand
what I'm signing. Today is a special day, it's Crohn's, Colitis and IBD Awareness Day. I'm doing this video because I have an Ulcerative Colitis, so I thought why not film this to tell my experience of living with Ulcerative Colitis, the worst experience of my life. Crohn's, Colitis is an
Inflammatory Bowel Disease where you get ulcers in your digestive system or colon. I have two problems one is Colitis and Irritable Bowel Syndrome People who support or have Crohn's, Colitis and IBD, are doing a marathon or walk to raise money to help find a cure for inflammatory bowel disease. I definitely want to do this next year to
help raise the money for this disease. I really hope you enjoy this video, let's get on with the video. Wow, I have lots of things to tell you about my experience, where should I start with? Erm… I'm going to start with the right of beginning. The year was 2012 or 2013, just before I found out I have Colitis, I was at secondary school at the time. I started to notice that I have lots of nasty belly pains, the pain was not normal, it felt different. I didn't know what it was, so I just left it. and then my pains got worse
because I had lots of stress. It was at March or April time in 2013, that night… the worst night of my life,
I will never forget that night. I had a Chinese takeaway with my family at my dad's, we all were chatting and happy until I start to feel not well, I felt really ill so I left the table and went to bed early, I was sleeping through until… it was at 1am or 2am, all of my family has gone home, I slept in a bunk bed with my sister, there's
me in the bottom and she's at top. This night changed my life completely. I woke up and started to scream, I was at high temperature,
so I was sweating everywhere, I was in lots of pain, it's like there was a knife stabbing in my left side bowel so I screamed and fell out of the bed. I'm not going to lie, it felt like I was going to die. It was the worst pain of my life, and then my sister woke up and shouted "Dad!" and my dad came rushing into my room, and he phoned an ambulance, and he phoned my mum too, because they are separated. My mum drove as fast as possible,
she even passed the red traffic light. I crawled to the bathroom, I nearly passed out, I can't even stand up it was impossible for me to stand, it's like my bowel controlled my body. I tried to go to the toilet as I felt like I wanted a poo, and then I begin to feel so sick, and I started vomiting non-stop. The ambulance never turned up, my parents were furious and drove me to the hospital, to the A&E (emergency) ward. When arriving hospital, I couldn't walk properly, I was in unbearable pain. I was waiting for a long time, I couldn't cope with the pain, so the nurses made it as quick as possible to see me next, I had a blood test and other tests, and then I went for an X-Ray scan for my tummy, they noticed my tummy is impacted with poo, I took a photo of my X-Ray scan but I lost it which is gutted. So that meant I couldn't poo for days, it's was compacted in my tummy which affects the pain. The nurses don't know how it happened to me, so they referred me to a hospital for bowel disease, they sent out my x-ray scan and stool sample. I went home and I was really ill for a long time, there was nothing we all can do because we don't know what it is. Until July 2013, 3 months after my nightmare night, I was involved in a Life and Deaf performance, filming etc, it was in 2010 or 2011, Life and Deaf celebrated for our show, so it was a big day for us deaf at my school. This day was really good fun, until my parents arrived, and I wondered why are they here. Their face look like they feel so bad for me, and I wondered what is going on, they said, "I don't want to ruin your day
but you need to go to the hospital tomorrow.". I was like what why? I wanted to stay with my friends. My parents explained to me that hospital called them, to say that I have to go to the hospital
tomorrow for a colonoscopy tomorrow?! Which is so last minute. It's where a camera go up your bottom,
it's called colonoscopy. My parents said I had to go home now, because I need to be prepared and
I'm not allowed to eat until tomorrow. I was upset to leave my friends and to go home. Next morning, I was so hungry the hospital is quite far away from my home, we arrived at the hospital really early in the morning, like 6-7am. I was waiting for my turn for forever, I waited for like 3-4 hours as
there were lots of people waiting too, I was sooo starving. Finally, I put the hospital gown on to get prepared, and then they pushed my trolley to the operating room and they put the sleeping gas on me. They put two cameras one down my throat and then up my bottom. I will never forget this moment, I remember waking up, the first thing
I remember is looking at my mum and dad, and they looked upset and I was confused. My parents found out before me as
I haven't woken up from my sleeping gas, and the nurse saw me waking up and she
has gone and told my doctor, the doctor opened the curtain looking
serious with a paper on him, I wondered what's going on, I never thought it was bad, I just thought… I had no clue. The doctor told me that it was a bad news, and I asked what it is? The doctor said, "I'm really sorry but you
are diagnosed with Ulcerative Colitis.". I had no clue what is this disease as
I've never heard of it. The doctor told me that it's a lifetime disease. It hits me when he said that, I was thinking so I will have this pain for the rest of my life? The doctor explained to me that I will have
to take medicine to try and get my colitis better. I was like medicines?… I was not good with taking medicines. I never forget this, the doctor asked me if
I have any questions, and I asked a stupid question,
it just popped up on my mind, I asked, "So that means I can't have children one day?". The doctor chuckled and said it doesn't affect my fertility. I was like oh. I still didn't understand what this disease stand for, after having blood in my poo and
blood everywhere around the toilet, the pain I have and more, I realised that it means Colitis. I was like wow, so I will have this for the rest of my life? Because my mum felt bad for me,
after going through the hard months, and now I found out that I have Colitis, so she booked a last minute holiday to Spain I was happy about it. I had to put up with my disease, a few months later, I noticed eating wheat affected my tummy from hurting and bleeding when i went to the toilet, and then I found out that I have an intolerance to wheat and to dairy too so that means I have to cut down all the food. I can't live without dairy because cheese is life. I take 10 medicines every day, to help control my colitis sometimes more or less. I'll show you them. They help my colitis to calm down. Azathioprine is strong medicine, I have to stay away from the sun as I'll burn easily taking it. Every day always has been a roller coaster, until a year later, it was September 2014… Wow… I was in year 11, my last year at school, about two weeks later, I start to feel my
colitis getting worse and worse, the pain was hell and I bleed everywhere. I went toilet at least 20 times a day, maybe more. That night, I woke up vomiting, I was in so
much pain and high temperature, just like the first night, I rushed to the hospital. My mum was worried and phoned the hospital to ask if I should go to the hospital, and they said yes, it sounds urgent. My mum drove me to the hospital, when at A&E room, my mum tried to cheer me up I still have the video, it made me chuckle, she cheered me up because I was so fed up with all of this. They did a blood test, and lots of tests, they realised that my colitis was in a serious flare up, and they said it was an emergency, and they put the needle in my upper arm I wondered why and it was for the intravenous drip in me. The nurses were running around and
they put me to the children ward, at that time, I was 16 (15). I was laying the hospital bed and we did a wee test, stool sample and all the tests thing. I went upstairs, and I saw the hospital bedroom, I was like… I thought I would stay overnight only, but actually, I stayed for a week because my colitis was infected badly. I feel like I'm going to die at the time, this disease just ate me up. I was laying on my hospital bed
with the intravenous drip, feeling depressed, I was stressed because I was in year 11
and the exams were so close. All of my best friends and family came and visit me, I was laying in the same room for a week straight, so that made me start to forget things, like I nearly forgot who my friends were. I was just forgetting things, because
all I did was stare at the wall for a week. The nurses kept waking me up during the nights, to change the needle for the drip. My mum and dad took each turn to stay
with me every night. Finally, I was discharged from the hospital, I was so happy to go home. I was really ill still though, I still bled everywhere in the toilet, ah, it was awful. I went to poo at least 20-25 times a day… hell. I was on steroids for 3 months to calm
my colitis from flaring up… Oh my god. After a few weeks being on steroids, I noticed that I have awful acne everywhere on my face, and I wondered why. Until other few weeks later ongoing, my face started to swell badly, I looked like a hamster. There were spots everywhere on my face, this is why I still have my acne scar from steroids in 2014, it was 5 years ago, so that means I was
diagnosed with colitis for 6 years now. I also lose a bit back of my hair, my hair was so thin. I remember when on steroids, I went back to school, everyone was staring at me, and I saw some people say to their friends, "Oh my god, have you seen Jasmine's face?" When I was on steroids, I just wanted to
hide in my home forever. Every time I go to places, everyone would say to me, "What has happened to your face? You
look better before than you do now". I was so depressed at the time, I felt like I
was having mental breakdown, it was such an awful time. It was in December 2014, I was finally off
on my steroids, I went for another colonoscopy to see
how my colitis is doing. I have noticed that my colitis has improved, because steroids are really strong medicines. I was in a hospital bed again… I don't know why I had a hairdressing head thing with me, don't ask me why haha. I had my colonoscopy on this day, after I woke up from my colonoscopy, the doctor looked really happy and he smiled, he told me it was a good new, that my colitis is in remission, I was SO happy when I heard this new, like, am I dreaming? Because I have been really ill everyday for over a year, and now my colitis won't be that really bad, it's not forever but it will be for a while. I was really happy. 2014 was the last time when my colitis was hell, after this, my colitis always have ups and downs, my colitis always get worse when I stress,
upset, all the negative moods, if I'm stressed free, my colitis will improve. I just carried on with my life, like I say, every day always has been ups and downs. I still bleed when I poo, but not as bad as it was before. Taking all the medicines makes me really tired, because there are lots of pressure
with my body battle going around. Every single morning, I wake up being in pain, because all the food is going down at night time, which build up the poo in my bowel, they get stuck which gives me belly pains. This year, a few months ago, I start to feel like my colitis is in a flare up again, I was paranoid because my colitis has been positive, but with ups and downs, every day, I can feel my colitis going into a flare-up. I think what if my colitis is back to really bad like it was before. I normally use foam rectal medicine up my bum, to stop my colitis from flaring up, I use this when I see blood when I toilet. But when I used it, it didn't work and I was like oh my god. My mum phoned the hospital, the hospital said that I have to go back on steroids, I was like no way. They told me that this steroid will be different this time, as they changed the steroids and it has no side effects. I was not sure if I trust my doctor. I had to accept it as there was no other option for me. My doctor said if steroids don't work on me, which means I have to go for another option, to stay in the hospital every 6 weeks for
3 hours for intravenous drip, I was like no thanks. After taking steroids, I noticed the
improvement of my colitis, which means the steroids worked to calm my colitis from flaring up. Every day, I would get paranoid to see
if there's any difference with my face, and my face didn't change I was over the moon, I was relieved. I have to go to the hospital for a blood
test every 3 months, to check how my colitis is and will have to
do that all the time I'm taking azathioprine. I also have to go to a hospital appointment every few months. This is my life. Through the recent blood test,
and nutritionist they found out I have IBS. I was like what I got them both. I was like great, what's next. At the moment, my colitis is ok, not that amazing, some day good, some day bad. So yeah, this is my colitis and IBS story. Because I mentioned in some of my videos about my colitis, and lots of people don't know what this means, so I thought to film this video to tell my
experience with my colitis. This is my colitis story, awful right? I really hope they will find a cure for bowel
disease one day, will be brilliant. So it is important to donate the charity, as it helps the scientist to afford to find the cure. Hope so. Comment below if you, your friend or your
family or anyone you know have experience with Crohn's, Colitis and IBD. Will be so interesting to see your comments. I really hope you enjoy this video. Thanks for watching, byeee!

36 comments

  1. Thanks for making this video Jazzy, I learned a lot of things about bowel disease I didn’t know before!
    Some people are uncomfortable talking about this stuff (ie poop haha) but it was refreshing to see you just say it because it’s important for people to know about these diseases.
    I hope the steroid helps even more!

  2. I have only been watching your videos for no longer than a week but you have truly inspired me! After watching your first video i subscribed without even thinking and I don't regret it. Continue to do what you love and know that we as fans are here for you. Love you!!

  3. I have Irritable bowel syndrome… thanks to give importance to this topic, some people think it isn't painful

  4. My mom almost died when her bowel obstructed from her chrons. But thankfully she went into remission with minor ups and downs. I have ibs fibromyalgia and chronic migraine which makes me have chronic pain. I'm hanging in there with you sister! 🙂💗

  5. Hey Jazzy!

    I too have Ulcerative Colitis and I'm currently learning BSL as I have some friends who are deaf and I really want to be able to comfortably sign with them 😄 you're awesome, keep doing what you're doing, much love 💛

  6. I'm not deaf, but I do know fluent ASL.

    You are not alone with IBD. I have had Crohn's disease since 2004. That 3 hour IV drip, Remicade, was the first drug to ever put me into remission. I know the sound of a 3 hour medicine is unpleasant, but if you need to try it, please don't run from it. It really does work.

  7. I love ur videos and I think your an amazing strong brave girl keep doing what you do best l❤️❤️❤️

  8. I’m deaf I feel soo bad for you got this disease it so horrible but also at same time it got really interesting good job you make this video and also I hope you will get better with this disease but funny thing is what when my mood is down or sad I usually watch funny movie it made me laugh and forget it but I don’t know if it will work for you

  9. Hey Jazzy, I am very sorry to hear about your awful disease. This story made my heartbreak. My goal is to live a life without any kind of disease. Yes, I am praying for you to get well soon. I hope there will be a cure sooner or later. By the way, I am hypochondria. You are an inspiration! Thank you for sharing this disease.

  10. Hi, i'm deaf

    Wow youre so amazing and you're so brave through your harder life. Can't believe you didn't give up and thank you for share this story. I'm interesting it ❤️❤️

  11. Oh wow, it is a very interesting story to hear that! And I don't have that but I have called Memory it means forget before I start to have a memory when I was 1 year old it is worse ever forget until my grade 5 I start more remember than before. And I am your hugeeee fannnnnn and I watch the whole of your vids.

  12. I have Crohn’s disease. Got diagnosed in 2017 but was going to the doctors for 3 years before that with weight loss, unbearable pain, running to the toilet and they just told me it was irritable bowel syndrome or it was in my head. I was being hospitalised for blockages in my small bowel every couple of weeks and was really poorly.
    Finally one doctor listened to me and said it didn’t sound right and sent me for a colonoscopy. They said it was severe crohns. Ulcers the whole way through my digestive system from mouth to rectum. Was finally put on strong meds to help it and was feeling better for about a year and then they told me in March 2018 I needed surgery to remove the stricture in my small bowel. 30 cm of my bowel was removed and was in hospital for 3 weeks.
    This disease is awful but you are such an inspiration, I love your videos. Keep up the good work x

  13. Hi am deaf and am really excited about your video and I enjoy it I hope you enjoy your happy and life peaceful 😝😝😝

  14. My mum has Crohns and colitis too. Hers was really bad last year and she lost alot of weight and nearly ended up in hospital. She started infusions which really helped! As my mum was so poorly we didn't do anything during half term last year. My mum also hopes one day there will be a cure. I helped my mum alot when she's in a flare up. My mum told me I'm very understanding and she doesn't know what she would do without me or my sister.

  15. Yo, Im deaf too and in England
    I have IBS + migraine in seven months
    It was rough days because school and GSCE
    Become I was depressed so much because IBS made cutting my food and feel not hungry. But IBS colpermin pill helped me so much better than before…
    Feeling better now ahah
    Thank you for your shared! ❤️

  16. I can’t imagine how you’d feel during this awful experience!

    I don’t have this disease but I understand about depression

    I think you are very brave to share your experience ❤️

  17. Uhhh… I miss your sign language of ASL/BSL. Now I have to read the caption and no more watch your beautiful face. BTW Awesome New video…. Good Luck with your new video. Think positive and move on. Same with me cuz I'm C.O.P.D. Chronic Obstructive Pulmonary Disease and live with oxygen machine for the rest of my life. I'm think positive and move on. Guess what I can't go out so my life end a while back till future. You're lucky because you can go anywhere. God bless you and HUGS 🌹 John from Florida U.S.A 🇺🇸

  18. Brilliant Jazzy, really interesting to hear your story and share awareness of Inflammatory Bowel Disease ❤️❤️

  19. I’m not deaf or anything, but I really enjoy your videos. 😊

    Thank you for this story!

    I don’t want to cone off as rude but this makes me so glad I don’t have this disease.

    Hopefully a solution will be found.

    Have a great time!

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