5 things my Crohn’s diagnosis has taught me
In July last year, I was on a trip to London. I was having a great time. We had been to Windsor Castle, Buckingham Palace and seen a few West End shows. But one morning I woke up and something was not right. I felt horrible! I spent the next 24 hours glued to my toilet seat. From this moment on my health was never the same. I came home, moved into my freshly built home and got engaged to my wonderful fiancé, but I still wasn't feeling great.
My stomach cramps got worse and I was struggling to stay awake. Me being me, I ignored it, until one day I had to go to the doctors to get a signed medical certificate for an upcoming trip to Ecuador. I mentioned how I had been feeling but brushed it off. Well, well, well…. turns out I shouldn’t have brushed it off! I then had to be sent away for lots of testing. Two months later I was the proud owner of an IBD (Inflammatory Bowel Disease) called Crohn’s Disease.
Here are 5 things that my Crohn's diagnosis has taught me. These are things I have learned so far from having Crohn's but can be helpful to anyone looking to make some improvements in their life:
1. Don’t ignore your body when it is trying to tell you it is sick!
Your body is a magnificent thing. It has ways of trying to tell you when it needs more attention or when you are doing something to make it not function at its best. Having Crohn’s has definitely been a journey and it has meant I have had to learn about what my body is telling me.
One thing I have done since my diagnosis is starting keeping a food diary. I write down what I eat for each meal, what symptoms I have been feeling that day and what exercise I have done. (Join my mailing list to receive a downloadable template of my tracking diary. This template is useful to everyone, not just those with Crohn's). After a month of doing this, I was able to look back and see patterns in what I was eating and what I was feeling. One night when I was up late having extremely bad stomach problems, I looked back through my diary and realised that every time I had thrown up I had eaten coconut. I promptly took coconut out of my diet and the results were fantastic. This has been the case with a few other foods that trigger my Crohn's as well. My body was telling me that these foods were making it sick and the diary helped me take notice.
Another thing I have done to help listen to my body's needs is learning to tell when I am dehydrated. Dehydration stops the body from functioning at optimal levels. I now keep a drink bottle with me at all times. I sip away on water all day and I have learnt that if I feel dehydrated, it's already too late. Keeping on top of the liquid has been the best thing for me and keeps me from ending up in hospital on a drip (a common occurrence for Crohn's patients). A variety of liquids have made this easier as well. You can have other liquids to help stop the dehydration. My favourites at the moment are herbal teas, sparkling water or Kombucha. One thing I did which helped a lot, I read Cassy Joy Garcia's Fed & Fit: A 28 Day Food & Fitness Plan to Jump-Start Your Life with Over 175 Squeaky-Clean Paleo Recipes. It was in this book that Cassy has a formula to calculate how much liquid your body needs. I found this very useful and now I use that as my daily aim. If I exercise I add in an extra 500mls for every 30 minutes I work out.
Dehydration slows down your body and you want your body to be functioning at its best to help you be the best you can be.
2. Ask for help when you need it.
Oh boy, am I bad at this one! This is one I am still working on and believe me, I am finding it very difficult. I am a very independent person and I have been my entire life. When I was 3 years old, I got on my plastic tricycle and zoomed myself down to the local hairdressers (I had to cross a road to get there). My parents were beside themselves and, after this, I was monitored a lot more closely. As I got older my stubbornness became stronger and I liked to do everything for myself. I am a workaholic, I am a perfectionist and I like to have control. I am probably not painting a great picture of myself right now, but I think it is important for you to know this in order to understand how hard asking for help is. When I was first diagnosed with Crohn's and in a lot of pain, nothing about these traits changed. I still tried to do everything myself and it landed me in hospital. Ending up in the one place I was working so hard not to be was devastating – and I got myself there pretty quickly (in less than 5 months from my diagnosis).
It hit me like a ton of bricks that I could no longer do this on my own. I had to admit that I needed help and to stop pretending I was ok.
I started by asking for help from my partner. It was just small things, but for me they were huge. Starting with one person close to you can be a useful way to start. Pick someone you feel the most comfortable with and a person you know you can rely on. Then I said yes to having a nurse come and help with my first Humira injections. In the past I would have said ‘surely I am intelligent enough to figure out how to do this myself', and I was, but what I wasn't prepared for was the anxiety I got from having to self-inject. In my head I was saying ‘suck it up, diabetics have to do this every day', and I couldn't bring myself to actually do it. Thankfully my nurse had great advice to calm me down and do it with ease. She is an expert in her field and asking her for help made my life easier.
Asking for help is not a sign of weakness, it can actually make your life easier and let you focus your energy into things that are more important to you.
3. It’s ok to be upset or angry, but don’t stay there.
I am a positive person and I always try to find the silver lining in every situation. (I have not always been like this but I have worked hard to live a positive life and I will share how I have done this in a future post.) However, every now and then something happens that rocks my natural state and I let myself get angry. It is often thought, to live a positive life, you need to be happy all the time. No! No! No! No!
Life is about feeling different emotions and letting yourself feel those different emotions.
Anger or sadness is a valid emotion and if you feel that way, don't push it aside. These emotions can actually help you learn lessons in life and teach you things about yourself you didn't know already. The trick is to not stay in that emotion. Acknowledge how you feel and let yourself feel it for a while. Then move on! When I was in the hospital a few months ago, within 1 sentence, I was told that my Crohn's had got a hundred times worse and I would need surgery which would result in me having a stoma (poo bag). I was devastated. Up until this point, I thought my positive outlook on life would protect me from these kinds of things happening. Boy did I cry. I cried for a solid 2 hours and I didn't try to stop myself. I needed to feel that way. I needed to be upset that this was happening to me. I needed to be angry at my intestines for not getting better despite all my best efforts and I needed to feel all of the things. The difference here is that I moved on. I had my cry, I let myself feel the worst and I moved on. Fast forward a few weeks after my surgery and it was my positive attitude that helped me recover so quickly and help me deal with the change of life I now have living with a temporary ileostomy.
When I am having one of my sad/angry moments and people tell me to cheer up, I always say to them
‘I will cheer up and I will be positive but please let me be sad/angry for a moment.’
Try it! I am not saying this is going to instantly change your life but it is something that might start to shift your mindset.
4. Planning meals helps you get through the periods of time when food is not your friend.
Actually, this one should be called 'Meal planning is awesome!'. I used to see lots of posts on all types of social media about meal planning and thought to myself ‘that is just for those hardcore bodybuilders and I don't need to do that.’ Little did I know... I would become a meal planning fanatic (and I am not a bodybuilder)! I am an indecisive person so choosing what to have for dinner each night was something I would dread all day. I would get so stressed about it that often we would just get takeaways. This is not good for the wallet or the body (as it was not always healthy nutritious foods). So, I started meal planning. Every Sunday I sit down with my partner and we plan out our week of food. We include breakfast, lunch, dinner, and snacks. This way we can make sure we are eating a variety of foods, we can ensure we are keeping our nutrition up and it takes away the hours of worrying about what to cook each night.
This became very important when I was really sick. Knowing that I had a plan in place to get nutrition into myself when my body was rejecting most things was priceless. Adapting the plan to only include the foods I could tolerate meant I was always giving my body the things it needed. More often than not I was too sick to cook, so my partner had the plan and I would just eat what I could. When you are unwell it is easy to eat whatever is simplest, but often the easiest foods do not have what your body needs to build up its strength and fight what is trying to take you down.
If you want to start meal planning, you can find some great templates online. Find something that works for you and give it a go.
5. Care about what you put into your body.
I am constantly researching about food and nutrition. This enables me to make informed decisions about what I am putting in my body. I used to never care about what I ate and how it affected my body, but since being diagnosed with Crohn's I care a lot more. Currently, I am trying a Gluten free diet and working towards becoming Dairy Free as well. Don't get me wrong, I still have treats! I allow myself to once a week have something that is outside of my diet. But I will always make sure it is Gluten Free and when I take away dairy my treats will be dairy free as well. I am aiming for a Primal Paleo type diet but am slowly withdrawing foods from my diet and then I will slowly add specific things back in.
It's about knowing your body.
I am not good at going cold turkey. I end up punishing myself and filling my thoughts with lots of guilt when I fail. I have found eliminating foods or food groups one by one, I have been able to stick better to how I want to eat. This might not work for you, so you just need to find out what does work for you.
The hard thing about food is what works for me, might not work for you.
Do your research and also listen to your body. It’s about finding the right combination of foods that get your body working to its optimal potential.
I have always been terrible at listening to my body and I am still learning all the amazing signals it is giving me, but I do know that living in constant pain is not how life is meant to be, so I am trying to tune in more every day. The 5 things I have written about above are all works in progress. I am not an expert, but instead I am a learner who is constantly evolving as I discover new things along my journey.