I wanted to raise some more awareness of IBD as this week is Crohn’s and Colitis Awareness Week so as I was planning some posts to write, I began looking back through my previous blog posts about IBD and realised that I haven’t actually went into a great deal of detail about my actual story and how I came to be diagnosed with Ulcerative Colitis. Let’s flashback to 2013 where it all began… (it’s a long un’ so be prepared!)
“The sun is a daily reminder that we too can rise again from the darkness. That we too can shine our own light.”-Unknown
I remember feeling quite stressed before New Year and began feeling unwell after the Christmas/New Year period. I started experiencing some symptoms such as severe abdominal pains, extreme tiredness, bleeding when I went to the toilet, increased bowel movements, losing weight and feeling weak/unwell in general. This went on for about a month or so and I kept seeing blood when I went to the toilet. This was extremely scary but I thought it would just go away on it’s own and didn’t really connect the other symptoms to this. I was too embarrassed to mention it to anyone, but my mum and boyfriend could tell something wasn’t right with me.
However, it took me a few weeks before I spoke out about these symptoms. I was visiting family with my boyfriend, Connor and that day I felt worse than I ever had. When we left, I told my boyfriend what had been happening and he urged me to go to the doctors. I booked an appointment for a couple of days later and I had to get tests and bloods taken. The tests weren’t the most pleasant and I felt so anxious during the whole appointment. It was decided I needed to be referred to the hospital to get a colonoscopy to check out my bowels properly as the GP could tell something wasn’t right but wanted me to have a full check up. I remember going home and looking up what a colonoscopy was. The thought of having to get a camera put inside me was really scary!
I had to wait a few months for my appointment and I got my prep in the post. The prep for a colonoscopy is probably worse than the actual procedure. It’s a horrible powder that you have to mix into water and drink every couple of hours. You aren’t allowed to eat for 24 hours as the aim is to clear out your bowels so they can get a good view/reading with the camera. This was extremely difficult and I felt close to tears every time I had to make up another dose.
My mum took me to the hospital for my appointment but the doctor told her to go home and come back in a couple of hours after the procedure as she wouldn’t be able to come in with me. I got taken into the ward and got given a hospital gown to wear. I had to get sedated which made me feel so strange, I felt so out of it. The procedure wasn’t as bad as I had expected and I even watched the camera move through my insides on the screen. It was a bit uncomfortable but not too painful. Afterwards, I had some cramps and abdominal pains and felt exhausted. I then had to stay in for about an hour until I came around from the sedation. I was given a drink and a sandwich which was amazing as I was SO hungry! My mum and Connor came to pick me up and took me home. I tried to eat dinner but felt horrible so had to go to bed for the rest of the day.
When I finally got my follow up appointment after a gruelling wait, I was anxious to hear my results. When I was told I had Ulcerative Colitis and that this was incurable, I felt numb.
Still trying to get over the initial shock of being diagnosed with an illness I had never heard of, the next few weeks passed in a bit of a blur. I had begun taking my medication and although it helped lessen the symptoms, I was still bleeding quite a bit. I went on holiday with my friends to London which was incredible, yet difficult at the same time. I was struggling with an internal battle of wanting to join in with the exciting things my friends were doing and feeling exhausted a lot of the time. During this trip, Connor proposed and of course I said yes! This was probably the first time in months that I felt genuinely happy and positive about life.
I was now trying to live my life as normally as I could. I was about to start college, I was working part time and Connor and I began talking about moving in together. Looking back, I can see that although these were exciting events that I was really happy about, they were also stressful and I think this took a toll on my body and my health began to deteriorate again.
Connor and I moved into our wee flat together at the start of September and college began for both of us. I was doing okay for a little while but things took a turn for the worse in October. We were decorating our bedroom and so we had moved the mattress for our bed into the living room. I kept getting severe pains and felt so exhausted that I could hardly do anything but lie down. One morning, I woke up and I felt so sick. I was then sick constantly for a day or two and at first I thought it was a sickness bug, little did I know this was a bad flare up of my UC! The stomach pains I experienced were agonising and I was constantly going to the toilet. I had to take a lot of time off work and college and it got so bad that I phoned NHS 24. They arranged an appointment for me with the on-call doctor who prescribed me Imodium to settle my stomach. The label said “Do not take if you have Ulcerative Colitis” but I assumed the doctor knew what was best and so I took them.
Later on that night, I was being really violently sick and in agonising pain. I phoned my mum and while on the phone, I passed out. Next thing I knew, I was being led down the stairs and into an ambulance. When we got to the hospital, I was given anti-sickness medication but I took a bad reaction to it and my heart went into overdrive and I couldn’t breathe properly. I don’t remember much else from that night apart from getting an x-ray on my stomach. I had to be kept in the hospital for 5 days to get injections, bloods taken, 3 blood infusions as I was severely anaemic and my red blood cell count was really low. I received another colonoscopy and had to be kept on fluids as I was very dehydrated. The only things that kept me going were visits from my family and Connor and the kind messages from my friends.
I won’t go into too much detail of these years but I have had a couple of flare ups and hospital admissions within that time (but nothing as bad as the first big flare) and tried countless different medications. I have tried altering my diet a few times but that doesn’t seem to help greatly. My weight has yo-yo’d a few times due to going between flare ups and then taking steroids.
I joined the ‘GetYourBellyOut’ support group on Facebook which helped me so much and got my story published in a book written by a fellow IBD sufferer (you can check it out here). I had to leave my previous job as I was so ill and really struggled with the workload. I took a few months out to focus on my health and then at the end of 2014, I began my modern apprenticeship in childcare. I started working in a nursery full time but I’ve since had to reduce my hours at work to part-time due to my fatigue being so bad.
I got my IBD tattoo in 2015 in May as a way for me to be reminded to always have hope and strength throughout any struggles with this disease. Any time I look at my wrist, I am always reminded of how far I have come.
Right now though, I am doing good. I still have pains almost every day and some days are worse than others but I am classed as being in “remission”. I still take medications daily but haven’t had a flare up in over 2 years. I am much more equipped to deal with my symptoms now and have been working on ways to control my stress and anxiety. I go for checkups to my GP regularly and have medication at home to help the start of a flare and catch it before it worsens. I have a yearly appointment with my Gastroenterologist. Earlier this year, Connor and I took part in the Crohn’s and Colitis UK 5K WalkIt to fund raise for IBD and it was incredible. I want to do more like this to help raise awareness.
I am so grateful to Connor, my family, friends and all the people who support me and have helped me through these tough times. Thank you all so much ❤
I have written many blog posts you can check out if you want to know more about Inflammatory Bowel Disease.
“Storms don’t last forever.”
Thanks for reading ❤
Love and Light,