Crohn’s Disease: My Journey to a Diagnosis

1st – 7th December is Crohn’s & Colitis Awareness Week! To help raise awareness I want to share with you my Crohn’s Disease diagnosis story.   


In November 2017, I was diagnosed with severe Crohn’s Colitis. After becoming very poorly, and quite a few failed visits to the doctors and hospital, along with being told it’s IBS, and an unsuccessful trip to A&E. I was eventually admitted into hospital. I felt so tired and weak and I was constantly having to rush to the toilet. My mum and I both knew that something was definitely not right. After a colonoscopy which confirmed the diagnosis and how severe my Crohn’s was, I was immediately put onto daily medication, steroid drips as well as drips to help keep me hydrated, calcium tablets, and prescribed drinks and jellies to help me start to gain weight.

For quite a few years, I had been having problems with my stomach, but it was just put down to being IBS after a colonoscopy in my early twenties, and along with hospital advice, I changed my diet thinking it would help. I cut out all dairy, wheat and gluten from my diet for several years. Over the years I still struggled with my stomach, but I just carried on with a dairy, gluten and wheat free diet. In 2017 things really started to get worse. I had finished uni and graduated, and had just started a new job. I was having to rush to the toilet more, and I started getting terrible pain in my stomach. I was starting to struggle at work and I was losing more and more weight. After trips to the doctors and even to the pharmacy to see what advice they could give me, I just wasn’t getting any better. After being referred to a hospital, all I was basically told was that it must be IBS, and to take probiotic capsuled and peppermint capsules.

In October 2017, I was due to go on holiday to Mexico and after talking to the doctor and nurse, I had to carefully think if it was a good idea to go or not. I decided to still go, as I was really looking forward to going, and I just wasn’t getting any answers as to what was wrong with my body. Thankfully the holiday was only a week long and the seat I was in on the plane was right near the toilets. I took packets of Diarrhea tablets and pain relief tablets with me. Also, I only went on a couple of day trips in Mexico (I made sure there would be a toilet on the coach), so most of the holiday was spent relaxing near the pool and I was close enough to the hotel room to pop back and forth for when I needed to rush to the toilet. I was also very careful with what I ate throughout the holiday.

After I got back from Mexico, my symptoms were still getting worse. I also had a gig coming up with the band I was in just after coming back from my holiday. I really didn’t want to let the band down and thankfully we were only playing half a set. At least as I play the drums, I was able to sit down and play! I managed to get through the gig even though I felt absolutely awful inside.

Did you know that I have a monthly newsletter called Little Notes of Light?
Little Notes of Light will bring inspiration, reflection and encouragement straight to your inbox each month. To subscribe, scroll down to the bottom of this page, or you can sign up by clicking here.

During this time, I was getting terrible back pain and acid reflux. On the Sunday at the beginning of November, my mum took me to A&E, but unfortunately, I was sent home. It was the next day on the Monday that after an appointment with my doctor, and after we insisted for something to be done, I was admitted to hospital. I felt so poorly and I just desperately wanted help.

The next day I really knew that something wasn’t right. I am so thankful that they were able to give me a bed in hospital, as it was touch and go to start with as I wasn’t sure if I would get sent home again. As I got up the next morning and had to rush to the toilet, I started to lose quite a lot of blood. I remember looking down and I burst into tears because there was a lot of blood and I just didn’t know what was happening. After losing a lot of blood and mucus each time I was going to the toilet, it was arranged that the following day I would have a colonoscopy to see what was going on in my bowels. At this point I had completely lost my appetite and had very little interest in food.

Crohn's Disease: My Journey to a Diagnosis

The next day, I was given an enema to clear my bowels and was taken down to the theatre room to see what was going on inside of me. As I was lying on the bed having my colonoscopy, I had no idea what they would find. I had a wonderful team of doctors and nurses looking after me. After I had heard those two words Crohn’s Disease, I broke down in tears. It was a huge mix of emotions I was feeling. But I think what I mostly felt was relief. Relief that I finally had answers after being poorly for so long. It wasn’t just all in my head. I also cried because I was scared. Although I knew of Crohn’s Disease, I didn’t really know much about it. As I looked on the screen whilst the camera was inside my bowels I was shocked at what I was seeing. The type of Crohn’s Disease I have is Crohn’s Colitis, and as I looked up at the screen, my bowel was full of big ulcers.

As soon as I got back to my room with my mum waiting there for me, I was put straight on to medication. I was given a steroid drip that I had 4 times a day, a drip to help me keep hydrated and tablets, along with pain relief tablets. The lovely nurses who looked after me during my stay in hospital, I am so grateful for. I am also very grateful to my mum for looking after me and coming to the hospital every day. As I had hardly any energy, my mum helped me to shower, helped me with my food and to eat and helped me to get dressed.

Due to the weight I had lost and also the little interest I had in food, I was given juice drinks to have each day along with some jellies. They have a certain amount of calories in each one and helped me while I wasn’t eating very much. Believe it or not, I actually really liked taste of them! Especially the fruit punch flavour jellies and the strawberry juice drinks. I saw a dietician whilst I was in hospital so I could get some advice on what to eat and what food to try and avoid. I also went on the low fibre diet.

As it was the beginning of November while I was In hospital, I had a lovely view outside my room window of the fireworks at night. I also had a TV at the side of me and I had some books with me to read too, so I was able to keep myself entertained during the day and night. I spent some time looking at the Crohn’s & Colitis UK website. After a visit from an IBD nurse, she recommended that I take a look at the website to find out more about Crohn’s Disease. I found that they had an online forum on Facebook to join. Finding out more about Crohn’s Disease really helped me a lot after my diagnosis.  

After spending 9 days in hospital I was able to go home. The results from the biopsies they took during my colonoscopy confirmed that it was Crohn’s Disease. I was given instructions for the medication I needed to take and given my discharge letter. I took the next few weeks off work, so I was able to take it easy and rest. I’m thankful that my work were very understanding and great through it all.

If you’re interested in finding out more about my Crohn’s Disease journey, you can find more Crohn’s related posts on my blog.

Crohn’s Disease is a type of Inflammatory Bowel Disease. The digestive system becomes inflamed, swollen and ulcerated. Crohn’s Disease can affect any part of the digestive system, from the mouth to the anus. The main symptoms can include pain in the abdomen, diarrhea which can sometimes include blood and mucus, tiredness and weight loss. Crohn’s Disease is a life-long condition, as there is currently no cure.

Inflammatory Bowel Disease is an invisible illness and although someone may look well on the outside, it doesn’t mean that they are on the inside


If you have enjoyed this post and any of my other content, you can support my work and future content by buying me a virtual coffee. For as little as £2, this helps to support all that I do, and so I can keep creating content on my website, social media channels, newsletter and more. Your support means so much to me.


Pin this post

Crohn's Disease: My Journey to a Diagnosis

3 thoughts on “Crohn’s Disease: My Journey to a Diagnosis”

  1. My friend is currently going through this. He can’t even leave the house without taking an Immodium. They have clocked it down to IBS but he’s going through tests to find out what exactly the problem is. He’s lost so much weight but yet his stomach is bloated and distended.

    Of course, he’s been on waiting list after waiting list for ages now and his job is getting nasty. It’s such a horrible thing!

Leave a Comment

Your email address will not be published. Required fields are marked *

Related

posts

4 Ways Spring Can Inspire Your Digital Marketing

25th April, 2024

Did you know that the natural world offers us endless wisdom for our digital marketing? Yep, you heard me right! It might...

Slow Organic Marketing Without Social Media

16th April, 2024

I’m here to show you how you can create a simpler, more down-to-earth approach through slow organic marketing. In this blog post,...

4 Ways Spring Can Inspire Your Digital Marketing

25th April, 2024

Did you know that the natural world offers us endless wisdom for our digital marketing? Yep, you heard me right! It might...

Slow Organic Marketing Without Social Media

16th April, 2024

I’m here to show you how you can create a simpler, more down-to-earth approach through slow organic marketing. In this blog post,...

Welcome to Clementine Rose

17th March, 2024

I’m so excited to share with you, and for you to discover, a down-to-earth approach to digital marketing which will help you...

Let's chat!

Ready to find out more about how we can work together?

Scroll to Top