What’s nice about being an adult and living with IBD is making all your own medical decisions.
I remember sitting in my hospital bed and being given my morning medication and being told to take it right then and there.
I was 23 years old.
I wasn’t a child but I was a newly diagnosed patient with Crohn’s Disease and never taken tablets before in my life. This was all new to me and I was like a baby bird – scared AF to look around in case I fell out the cocoon and comfort of my nest.
In those early days my medical decisions were already sort of decided for me. I was weak and unwell, I didn’t really understand all of what was going on around me; I just kept hoping on for the hope that something would eventually work – I was so tired from being sick.
It wasn’t until I got my strength back did I start to really take notice of what was going on; of what was involved in taking care of myself and learning more about my disease. I began to use my experiences to influence my decisions as a patient. I began tracking things and ensuring I stuck to medical regiments. I’d seen medication failure with my previous partner – who had IBD and wasn’t great at adherence – I was not going to be like that. I was going to beat my Crohn’s Disease, I was going to boss the heck out of being a patient.
Sadly, it doesn’t work like that
Positive mindset and affirmations can do the world of good for your mental health and state of being but, unfortunately you can’t wish your disease into remission or medication to start working.
We are given the drugs that have the best intentions to do us good after years of research. We couple this with monitoring and repeat testing to ensure we are maximising the effectiveness over any nasty side effects. Sometimes its about rolling the dice and that is okay. That is the part of progress that is necessary in treating autoimmune diseases.
What’s not nice about being an adult and living with IBD is making your own medical decisions.
But being an adult and having to make the tough choices – more potent medications or surgery, more surgery or clinical trial, side effects or increase in symptoms – its all about where you feel comfortable. And getting comfortable with your illness is not easy, it is tough AF. It is a process only you – the patient – can go through and it is never the same for two people.
Feeling that control and decisiveness when you choose your path forward is power.
Although, it can be the most anxious and stressful time, on top of knowing you are already unwell.
Let me take you back to the Spring / Summer of 2015.
I was beginning to loose weight. I’d had a long string of success with Inflximab but almost over the course of two infusions, I wasn’t responding as well. We tested my antibody levels – they were through the roof. Already in discuss with my consultant, we added in Methotrexate as a secondary line of treatment. It is chemotherapy; it has effects on liver, kidneys and needs to be taken with folic acid to protect my organs. We hoped it worked, but knew it was likely just a stop gap. We were waiting for Vedolizumab to come to the NHS market in the September; we just needed to get there.
We did get there. I did go on to receive Vedolizumab for the 14 weeks it was allowed, but then I came off it and got a surgical consult instead. I did not respond to Vedolizumab as we had hoped. I did have surgery and had a hellish next summer trying to recover, but ultimately needing my colon removing and my stoma forming.
Wrong turns do happen. But so do right turns.
Regretting your decisions or even doubting how you got there, is a waste of time. Part of accepting your illness is knowing that you did not cause this and you did nothing wrong.
This can be a very hard and painful lesson to learn, and it can take years and many different approaches for you; for your body and mind to finally be on the same path. There are times you sit and wonder what you did wrong to cause a flare up, for a medication to stop working, for you to get X or Y side effect, or even wondering why on earth this whole battle is picking on you. It is a waste of time. Completely and utterly.
We grow through what we go through – it’s old adage, wise beyond it’s words and so damn applicable in chronic illness life! We do indeed grow through what we go through. That newly diagnosed part of chronic life; we’ve all been there! Choosing between medication and surgery, we’ve been there! Choosing between X or Y medication, been there! Deciding on what food to eat and if it’ll cause more problems, been there too! All the battles we share give us a common and collective experience. Yes, it won’t always be 100% the same between us, but we get it. And only those with chronic illness, will get it.
But growing and learning is part of life and is an important part of chronic illness life too.
Do you have any questions or queries? Or just want to share your own experiences?
If you enjoyed this post check out Coming Off The Radar , Pause and It’s the Small Things that Have the Biggest Impact