Hi everyone,
I'm busy cycling across the channel and today I hit over half way across! So, whilst all I can see is the sea, I thought I'd take a chance to increase awareness and tell you all a little bit about Crohn's & Colitis and my (not very exciting) story.
So, Crohn's Disease and Ulcerative Colitis are both inflammatory bowel diseases (IBD). They can cause sores and inflammation in your gut. Crohn's Disease can affect your whole digestive tract - from your mouth to your anus! Ulcerative Colitis affects the large intestine. Your immune system starts attacking your body, and no one knows exactly why. Common symptoms include stomach aches, blood and mucus in your stools, urgency, diarrhoea, fatigue... It goes on and is different for everyone! They're both lifelong conditions, which means there isn't a cure and it'll always be part of your life - but there are lots of treatments that help ease it. Sometimes diet can sort it, sometimes medication and sometimes you need surgery. About 75% of people will have surgery to help with Crohn's Disease at some point in their life. Crohn's & Colitis UK have a wonderfully informative
website if you want to know more!
I thought I'd also talk you through a little bit through my own experiences of the disease. I always find it strange talking about it because I don't feel like I've got it that bad. My symptoms have never been awful. I feel lucky so far!
Diagnosis
I've had bad stomach aches for years.. I'm really not sure how long it had all been brewing since before I went to my GP! In April 2016, Dan & I were on a camping holiday and had started to walk up Ingleborough! It soon became clear we weren't going any further than the cave because we were having to stop every 5 minutes for me to sit down as my stomach hurt so badly. This was the moment it dawned on me that I really needed to do something about it..
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| It's often called an 'invisible illness' because you can't see the impact it has. |
These diseases are typically hard to diagnose. It was April when I first went to my GP and December when I was finally diagnosed. We went through lots of tests to get here and I was very grateful to my GP who listened each time I went back with no change in symptoms. I gave up dairy for two weeks and when that had no effect, my GP asked for a stool sample test. This was looking at my faecal calprotectin levels. <100 is considered a normal result, and mine was 600+! They asked for another sample to double check that...
Shoot forward to October and it was time for a colonoscopy so the consultant could have a look up there. The worst part by FAR was drinking the solution beforehand - the actual procedure was fascinating because I could see the screens and inside my own bowels! They took biopsies and the results came back negative. I was told it was probably a case of severe gastroenteritis... But they followed that up by an MRI scan, which indeed showed I had small bowel Crohn's! Waheey, diagnosis!!
Treatments
It feels weird to say they diagnosed it as severe because it doesn't feel severe to me when I read through some of the stories of other people with these diseases. They wanted to set me up on a biologic drug - which meant choosing between regular injections (Adalimumab) and regular infusions (Infliximab). Both these drugs work by reducing your immune system, which stops it from attacking your body. I opted for the first one as it didn't mean regular hospital visits. I learnt how to inject myself and it was all fine and dandy for a while. My symptoms eased and I felt normal again!
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| Humira injections! |
Roll on August 2017... I injected my adalimumab (Humira) and my stomach blew up. Not literally, but it massively swelled. The nurses wanted to double check I was injecting correctly, so we gave it another 2 weeks and it did exactly the same. I sent my IBD nurses a photo this time and they immediately told me to stop taking it.
So, October 2017... I started on Infliximab instead. This is given by infusions at the hospital - and the first few took forever. It was a two hour infusion with a two hour wait so I was at the hospital for a good 5 hours each time. This slowly decreased and I managed to get down to 30 minute infusions without a wait - September 2018!
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| My first Infliximab infusion! |
Early 2019, one of my blood tests came back showing I'd developed antibodies to the drug, meaning it wasn't working anymore. But, I didn't have any symptoms - so yay, I was officially in remission! They took me off all the drugs and I went about normal life again.
May 2019 and the stomach aches were back. This has always been my number one symptom. I get super tired too - but that just feels normal with my usual busy life, so it's hard to attribute it to the Crohn's... I went on steroids for a while until September 2019 when I started my next drug - Vedolizumab. This works in a similar way - by reducing my immune system. It worked for a while, but by December the stomach aches were back in full force... January, I got back in touch with the nurses and it was back on steroids for a while.
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| Vedolizumab infusion! I have to say, I quite enjoyed the infusions. Very relaxing and time to just stop. |
It took months to get sorted this time as they wanted to send me for another MRI scan to check what was happening with my Crohn's. That was in March - just before COVID was quite in full swing.
A conversation with my consultant freaked me out, so I got in touch with one of my nurses and she calmed me down and explained everything to me. Apparently, my Crohn's is still nearly as bad as when I was first diagnosed, despite all of the treatments I've been on. She explained how with Crohn's disease, there are 4 things they worry about... 1) If it's in your small bowel (tick), 2) If you've got it in more than one area (tick), 3) If you haven't responded to treatments (tick) and 4) If you're young (tick). So, that's why we're going full pelt ahead with the immunosuppressant drugs and why I've had to isolate. Luckily, it only puts me in the highest risk category for the first six weeks whilst my body adjusts. After the 6 weeks are up, I fall down into the category below.
What happens now?
Ustekinumab is my latest drug, alongside another called Azathioprine. This is a combination therapy, and they're meant to help each other to work. The Azathioprine are tablets that I have to take every day. The ustekinumab started with an infusion and I'll have a nurse pop round every 8 weeks for an injection.
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| Ustekinumab, get in my system! |
Fingers crossed they do work because who knows what will be around the corner otherwise!
If you've read to the end of this, I applaud you! It turned out a bit longer that I first thought... So thank you for taking the time to listen. I hope you found it interesting and I hope it helps to share awareness of these invisible illnesses.
Stay safe & stay home,
Katherine
xxx
