How My Crohn’s Diagnosis Became the Wake Up Call I Needed to Slow Down
If you’ve caught some of my previous blog posts, you may know that I have Crohn’s Disease. But just in case you didn’t know, I was diagnosed back in November 2017. I actually shared a blog post all about what I’ve learned as a small business owner with a chronic illness, which you can read here.
Today, I wanted to share a little more about my journey and how I came to be diagnosed. It can feel really overwhelming and isolating at times, but I hope this reminds you that you’re not alone in what you’re going through.
Just a little word of warning, I do give quite a detailed description about my diagnosis journey.
My Crohn’s & Colitis UK ‘My Walk It’ medal.
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. But I still struggled a lot.
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 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 and tried to carry on as normal. 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 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. 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 a band I was in just after coming back from my holiday (I was their drummer!). I really didn’t want to let the band down and thankfully we were only playing half a set. At least I was able to sit down and play! I managed to get through the gig even though I felt absolutely awful inside.
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’m so thankful that they were able to give me a bed in hospital, as it was touch and go to start with as there was the possibility of being 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 I just didn’t know what was happening. It was arranged that the following day I would have a colonoscopy to see what was going on inside my bowels. At this point I had completely lost my appetite and had very little interest in food.
The next day, I was given an enema and was taken down to the theatre room. As I was lying on the bed having my colonoscopy, I had no idea what they would find. I had a great 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 as there are few people in my family with it, I didn’t really know much about it. As I looked on the screen I was so shocked at what I was seeing. The type of Crohn’s Disease I have is Crohn’s Colitis and my bowel was filled 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. I saw a dietician while 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.
…This was actually the beginning of my slow living journey, something I’ve talked about here.
Just in case you’re curious to learn more about Crohn’s Disease, it’s a type of Inflammatory Bowel Disease (IBD). 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. It’s 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.
Have you experienced a chronic illness that changed the way you approach life and work?