It’s been just over 4 years since I was diagnosed with Crohn’s Disease which is a form of IBD (Inflammatory Bowel Disease). I was diagnosed in November 2017. You can read about my diagnosis here. Being honest, it has come with its ups and downs, challenges and definitely some tough times. But during these past 4 years I have found what works for me and what doesn’t, things such as diet, medication and lifestyle changes. It’s opened up my eyes to IBD, a chronic illness I never really knew anything about. In these past few years, I’ve also reached remission and unfortunately come out of it again at different times. But at the same time, it’s taught me a lot about myself, it’s helped me to make lifestyle changes that have been so beneficial, to create good habits and to listen to my body more, to be more aware of how my body feels and to get to know it better.
In those few months after I was diagnosed, I still struggled a lot with my symptoms. I was becoming very poorly again and the severity of my Crohn’s was still there and slowly getting worse. During the course of this time I had also been prescribed drinks that contained so many calories along with jellies, as I had been struggling to consume food. This meant I was booked in again for another colonoscopy. After having the colonoscopy, it was confirmed that I still had severe Crohn’s Disease and my bowel was still very ulcerated. During this time I was also put on another course of steroids and after the colonoscopy, I was put on my first biological medicine, Humira, also known as Adalimumab. You can find out more about this medicine here. Although I did start to notice a difference after taking this medicine, (I took it by injections that got regularly delivered to my home, which I then self-injected fortnightly) after 6 months, it had started to stop working and I went into a flare-up again. After another course of steroids, which thankfully got my stomach into a good place again, I started on my next biological medicine called Infliximab, which is also known as Remicade. I’m still on this biological medicine now; I’ve been on it for over 3 years.
“Infliximab is a man-made antibody. The antibody is made from living cells, so it’s known as a biological medicine.
Infliximab targets a protein in the body called tumour necrosis factor-alpha (TNF-alpha). TNF-alpha is naturally produced by your body. It plays an important role in helping your immune system fight infections. But too much TNF-alpha can damage the cells lining the gut. This is thought to partly cause the gut inflammation of people with Crohn’s or Colitis. Infliximab binds to TNF-alpha, blocking its harmful effects and reducing inflammation. This helps to relieve symptoms.” Crohn’s & Colitis UK.
After finishing the course of steroids and then being put on to Infliximab infusions (I have the infusion every 8 weeks at hospital), thankfully, I got into what I would call remission and my stomach felt brand new. I had even been able to start introducing more of the foods which I had cut out for a few years such as dairy, wheat and gluten. I’ve obviously experienced quite a few ‘not-so-good’ days which is often expected, but it was nothing compared to how I had felt originally.
At the beginning of 2021, my Crohn’s began to flare again, and I could start to feel myself slipping back into old symptoms. A calprotectin was taken and then one a couple of months later and my inflammation markers had shot right up very quickly in a short amount of time. I’m very thankful that the hospital I go to has a great IBD team, who are quick to get back in touch and to get you sorted. Unfortunately, because of the medication I was already on for my Crohn’s, it meant that a further medication was to be added for me to take. So, last year I started on Azathioprine tablets, which I am still taking now.
Thankfully, with this combination, I have seen an improvement in my Crohn’s. This brings me on to a few points below that I thought I would cover, to share in more detail what’s been happening over the last 4 years. I hope that this post is in some way helpful, whether you have Crohn’s or if you would just like to learn more about it. I’ve also added links into this post so you can find out more. This post is all about my own personal experience with Crohn’s so far. Everybody’s different, so what one person may experience, another person may not. It’s been a lot of trial and error over the last few years, but I know for me personally, I’m always really interested in reading posts like this, as I like to learn more and to also read about other peoples experiences.
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How is my Crohn’s Disease 4 years on?
I always think that this can be a tricky question. To someone else, it may look as though there could still be a lot of room for improvement, but for me personally, although I’ve had a few setbacks with my Crohn’s, I feel that I am in a position where although it’s still being looked at how it can be controlled better and brought in to remission, I feel so much better in myself than I have done for a long time. Not only have I still been able to keep reintroducing different foods, but compared to how I was with my Crohn’s 4 years ago, there is a huge difference.
As I mentioned above, I had to go on a new medication for my Crohn’s last year after a flare-up, and even now, my results have come back saying there is active Crohn’s in my bowel. But as I put in the title of this post, it’s a journey, and it’s still one I’m on now. These past 4 years have really taught me a lot about myself, my body and so much more (you can read all about it in this blog post). But I’ve also learned how to manage my symptoms, what works and what doesn’t work, and really just when to rest.
I haven’t let Crohn’s stop me from doing the things that I love, but I’ve had to adapt to how I do certain things. Knowing when to rest, when to take breaks, when to say no, and knowing what I am able to do, and when I may need to ask for help.
How are the ups and downs?
There have been days over the past 4 years where I have had to contact my IBD team at the hospital because of symptoms and how my Crohn’s was. During these times, it can feel like being defeated, but I’m very thankful for a great IBD team who are quick to get back to me and are quick to get the ball rolling so to speak. Thankfully, I’m able to then get those symptoms back under control again. There have also been days where there have been many tears, difficulties (especially when it comes to the colonoscopy prep – if you know, you know) and just rubbish days generally with my Crohn’s. There have been days when the bathroom has been the most-visited place and I’ve spent most of the day in bed.
But there have also been many good days: many, many good days. For example, having my stomach feel the best it has done in years, being able to reintroduce dairy, wheat and gluten and other foods that I used to love, not being in pain with my stomach, and having a normal functioning bowel, which is always a bonus! But, I wouldn’t be telling the truth if I didn’t mention the ‘not-so-good’ days.
How is my diet now?
I feel like I’ve gained a lot of experience and knowledge when it comes to diet! After spending a few years cutting out all dairy, wheat and gluten, along with some other foods, it felt so good to be able to reintroduce those foods again into my diet! After years of being told I had IBS, and being told to cut out certain foods because of intolerances, it wasn’t that at all, it was Crohn’s. Unfortunately, it just didn’t get picked up back then.
After being diagnosed with Crohn’s, starting on medication, and talking to a dietician, I started to reintroduce those foods that I had previously cut out of my diet, as that’s what I thought and was told was causing all my stomach problems. Obviously, I’m still quite careful with what I eat, and on those ‘not-so-good’ days, I’m usually extra careful, but it’s meant that I can have an almost-normal diet again. I think my body has definitely thanked me for it. What I thought was food causing the problem, it was in fact Crohn’s.
But over the years, I’ve also learned that sometimes altering my diet may be required. After coming out of hospital, I went on a low residue diet/low fibre diet. On the days where I experience symptoms, this is sometimes my go to diet for the day or for a couple of days. When my Crohn’s is misbehaving, I find that eating the foods on the low fibre diet can do wonders for the symptoms I’m experiencing. I definitely recommend researching this if you’re currently experiencing a flare-up. For example, for breakfast I may have some toast or scrambled egg on toast; for lunch it may just be a sandwich or some soup; and then for tea, I always find mashed veg (potato, carrot and parsnip) with mackerel, or any oily fish to be good.
I also avoid alcohol and most fizzy drinks. The one food that I haven’t introduced properly back into my diet yet is onions! This one is next on the list, but I’ll be slowly introducing them back into my diet. When it comes to diet I’ve found that it’s definitely been trial and error.
How am I finding my medications and treatments?
There’s actually quite a lot of different medication out there for Corhn’s/IBD. Thankfully, I’ve got on well with the medication that I am currently on. As I mentioned above, I was on the Humira injections for about 6 months, but unfortunately they stopped working and I started to go into a flare again. I did however have to start a new medication called Azathioprine last year, due to the infliximab wearing off towards the end of the 8 weeks. Thankfully, that seems to have helped a lot.
I’ve been on Mesalazine since I was diagnosed with Crohn’s. For quite some time, I was taking 8 tablets a day and then eventually it was reduced down to 4 tablets a day. Top tip: these tablets are huge! But you’re able to break them in half, and I always find it best to have them with either water or squash. I did try to dissolve them once, which you are able to do, but unfortunately, they don’t really dissolve and It’s something I wouldn’t want to do again!
I’ve personally found that starting a new medication can sometimes be a little scary, as I know everyone’s experiences can be different. If you aren’t a member already, Crohn’s & Colitis UK have a Facebook group with thousands of members who have IBD. I’ve definitely found it to be a big help, especially if you’re looking for advice or have any questions. There are definitely lots of posts on medication on there, and it’s very plain to see that people’s bodies may react differently to certain medications, but I have also found a lot of positivity on there. It’s especially helpful to connect with people who may be taking that medication.
Also a top tip: if you are going to start Azathioprine tablets for IBD, or have just started taking them, I’ve found it to be very good to take them at night just before I go to bed. Unfortunately, they can make you feel quite nauseous, and I personally found that out when I was taking them in the morning after first starting them. After going on the Facebook IBD group, I found that a lot of people also experienced this, and that they are better off taking them at night. Thankfully this worked for me and I’ve not had any problems with that since. (Also, they can make your wee bright yellow! Just throwing that in there!)
How do I manage my Crohn’s Disease now?
Although there are ‘not-so-good’ days with my Crohn’s, I’ve learned what works and what doesn’t work. I recently wrote a blog post about a few of the things that help me personally during a flare-up. Usually on those days, I do find it easier to just rest. But I’ve not let it stop me from doing the things I want to do, it’s really just been about adapting a bit with certain things. For example, if I’m having to lie down or sit down comfortably, I like to try and work on my computer, read a book, to just catch up on the things that either need doing or I want to get done, but doing them slightly differently. Even doing different household jobs for example, sometimes it may be that I just need to take frequent breaks and to take my time.
It’s also looking at what I can do to help those not so good days. One of those things may be with my diet, as I mentioned above, eating foods that aren’t going to cause any discomfort. I love going for walks, but on those days, it may just be a shorter walk, or to just rest instead. I’ve learned to listen to my body over the years, and this definitely helps with knowing how my body is feeling and what to eat or not to eat, how much exercise I’m able to do that day, and so on.
I’ve also definitely become much more aware of how my stomach is feeling, especially if I’m experiencing symptoms. For example, if the symptoms are lasting longer or I’m experiencing new or old symptoms, then I usually know it’s probably time to get in contact with the IBD team. Sometimes, the symptoms do go after a day or two, but especially last year when I knew that I was starting to go into a flare again, I got in touch with the team, who thankfully were quick to respond and help.
A big trigger for me with my Crohn’s is stress! So I try to look at ways in which I can reduce any stress that I may be feeling. For me, as a Christian, praying always helps me so much, for it’s God who gives me strength during those difficult times. Reading scripture, doing daily plans, reading my Bible and even Bible Journaling helps me so much.
I also love to spend time outside, especially during the warmer weather, it’s always a good mood-booster to spend some time outdoors amongst nature, in the sun and to just put all of my focus on the beauty around me. I know for me personally, if I’m in a lot of discomfort, doing different things that can help to take my mind off it.
What’s next on my Crohn’s Disease journey?
I’ve actually been looking at using natural remedies for my IBD. As I mentioned above, I was told that my Crohn’s is still active with inflammation despite being on medication and new medication, so I think looking at what I’m already taking is also being looked at. I had to have a blood test with my infusion again this last time, to see if the Infliximab is still working properly. Obviously I’m not a doctor or an IBD specialist, but it’s something that I would like to look into, adding different herbs to my diet, looking specifically at the ones which reduce inflammation. I’ve also read quite a bit about using essential oils, and even introducing different foods to my diet. There are so many natural things around us that have lots of healing properties.
A couple of books that I’ve been reading that my husband and I got are the Neal’s Yard Remedies Complete Wellness book and the Neal’s Yard Remedies Healing Herbs book. They are literally jam-packed with different herbs, information, tips for natural healing and all different types of things for lots of different health problems. They’re definitely worth a read and having on your bookshelf. I know that this may not be for everyone, but I just love the thought of looking at what our ancestors would have used and all of the natural things around us that God has given us that help with healing and helping with our health. I’ve also seen people who manage their IBD with diet, so it’s something I’m currently looking at. All suggestions and recommendations are welcome!
I hope you have enjoyed reading this post and have found it to be helpful in some way. If you have any questions about IBD, feel free to send them to me, or if you just want to chat about it.
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