My Ulcerative Colitis Journey: Symptoms and Diagnosis (PART ONE)

Today, the 19th May, is World IBD Day, and I wanted to start a new blog series to raise even more awareness for Inflammatory Bowel Disease. I’ve blogged quite a lot about IBD, and I had a fairly popular series where others shared their story, called Voices of IBD. I’ve helped a lot of people share their experiences with either Crohn’s Disease or Ulcerative Colitis, but I’ve never fully shared my own story – so I thought a new series was in order!

This series is going to be all about My Ulcerative Colitis Journey, from the start of my symptoms, diagnosis, trialling medication, coping, and mental health. In part one, I’m discussing all about when I started to get symptoms, and how I got my diagnosis. This is going to be an extremely personal post, but if you’ve read my blogs before, you know I’m not a shy bairn!

Just quickly for any lovely readers who don’t know – Ulcerative Colitis is one of the main forms of Inflammatory Bowel Disease. It’s an auto-immune disease affecting the colon and causes the immune system to attack itself. It causes inflammation, ulceration and damage, which leads to pain, bleeding and a host of other issues. For more info check out the Crohn’s and Colitis UK website.

From the age of around 19, I started getting ‘stomach issues’, with bloating, gas, abdominal pain and regular diarrhoea (I just realised I can’t spell diarrhoea, so thank goodness for Grammarly, otherwise a post all about poo would be impossible). I visited the GP a handful of times – probably around 10 times over the space of 3 or 4 years. Each time I was told it was just IBS (Irritable Bowel Syndrome), which is not the same as IBD but that’s for a different blog post! If they weren’t saying IBS, they said anxiety manifests with physical symptoms like the stomach problems I was having and so I was put on anti-depressants, as well as given Ibuprofen for the pain.

For 3 or 4 years, I was struggling with an undiagnosed illness, with no medication and it’s no wonder I got as bad as I did. In the spring of 2016, around May, my symptoms worsened significantly. I had an unreal amount of pain in my stomach, so much so that I could have been ringing the bells of Notre Dame, I was hunched over so often. I started bleeding a scary amount from my backside, so much that the toilet looked like a murder scene. I had an endless urge to go to the toilet as if I was going to full-on poo myself, sometimes I would have watery diarrhoea, and sometimes it was just streams of blood and mucus. I was going to the toilet more than 20 times a day. Passing poo was incredibly painful, and I had to heavy breathe as if I was giving birth. I would be on the toilet for up to an hour sometimes, with intense pain and blood just leaking out. Let that sink in, imagine spending half your day on the toilet and trying to work in a preschool full of 2-year olds. It’s safe to say I wasn’t a very fun person! I’m just glad it was so close to the summer holidays and that I was only part-time.

At the time, I remember thinking it’s cancer. I couldn’t help it, I remembered the adverts about blood in stools and colon cancer on the TV and it didn’t help that every single Google search screamed cancer in your face – I know, I know, slap the back of my hands for googling symptoms… never ever do that! So I was dealing with a lot of stress at the same time, popping Ibuprofen like there was no tomorrow to try and control my pain, and had a butthole that felt like razor blades because I couldn’t stay off the toilet. P.S. flushable wipes are my saviour, and rough toilet roll is the devil reincarnate.

I went to see my GP in the July. I realise I left this ridiculously late and looking back I think I’m a bloody idiot and don’t even know why I waited so long. It was a mixture of fear of what it would be, anxiety, stress, dealing with work and feeling so unwell. But, I suppose we live and learn.

My GP seemed concerned with the volume of blood, and I had the good old finger up the bum. It felt like a shard of glass up my backside, I was already so sore! She decided to send me for an urgent referral to the hospital for investigation. Seeing the words urgent just made me panic even more. I remember Eric and I had a trip to London and Harry Potter Studios for his birthday at the start of August, and again, how the heck I managed that I have no idea. I must have been on some kind of adrenaline spike from the pain pushing me through or something. I could probably give you a tour of all the toilets in London, and I spent a good hour in the one in Hamley’s toy shop while Eric browsed the collectables.

Around 2 weeks passed and I finally got a letter with a date for a Flexible Sigmoidoscopy, along with an enema to take. A Flexi Sig, is a scope that goes into your bum and looks at your large bowel. I had to take the enema a couple of hours before my appointment and my good god – that was one of the most painful things I’ve ever experienced. Because I was so inflamed, all the backed up diarrhoea coming out of me burned like crazy and I cried the whole time. Wasn’t one of my best moments I must say. Bless Eric for being moral support and talking to me through the door, and bringing me water to drink when I felt dizzy and sick. Couple goals, am I right?

I was so stressed for the scope test that my heart rate was too high before I could have it done so I had to be heavily sedated. Some people fall asleep from sedations but nope, not me. I was too stressed that it just kind of dampened that down a little bit, so I remember everything, felt everything and saw everything.

So Ulcerative Colitis is inflammation and ulceration of the colon… now picture a tube being pushed up there rubbing against all the painful parts. It wasn’t pleasant, and I kept pumping because they were blowing air inside my colon to open it out so they could see. So not only was I sedated and drugged up, but I was in pain and couldn’t stop pumping on the poor doctor! I could see how bad my colon looked on the screen in front of me, and they took biopsies. Straight away the nurse placed her hand on my shoulder and said “it’s not cancer”, as I had just told her how worried I was about that during my pre-procedure consultation. After I was wheeled to a room to relax after the procedure, and the sedation wore off enough for me to realise I’m back in the real world, I was given my diagnosis straight away. 

So in August 2016, I was diagnosed with Ulcerative Colitis. I was told it was likely made worse by the Ibuprofen I was taking, and that I needed to see a specialist in 4 weeks.

I felt relieved that it wasn’t the big C I was thinking, but I also felt so much worry and stress about what this meant for my life now. Being diagnosed with an incurable, lifelong condition that affects your everyday life is a bit of a brick to the face. It’s hard-hitting, and I almost didn’t want to believe it. I was glad to have a name for it though. So I could have some kind of action plan, do some research and get the medication I need to control it.

And the rest is for the next post in my series!

I hope you liked this post. I think I’m going to make this a long series since this year I will have been diagnosed for 2 whole years! I have a lot to say from the last 2 years that someone might find helpful, useful, or insightful! If you haven’t already read my other IBD posts, there’s a tab at the top of my blog called Health and you’ll find them all there!

If you’re able to offer any donations – on the 30th June I’m doing the Crohn’s and Colitis UK WALK IT event for the 2nd year running. Last year I could only manage the 5k, but this year I’m pushing myself to do the 10k. I have a just giving page, where the money goes directly to the charity, and I would appreciate every single donation given! 

JustGiving - Sponsor me now!

No comments:

Post a Comment