Monday, 10 April 2017

The Pressure Of Deciding To Undertake The Right Treatment (Colonic Inertia Diagnosis Story)

Receiving a firm diagnosis of a chronic illness does not instantaneously mean you will then be fighting fit. Trying to treat and manage your chronic illness sucks.  In my experience, with the first chronic illness I was diagnosed with, "Colonic Inertia" in October 2016. I had no idea where the diagnosis would take me. I remember feeling such an array of emotions on the day of my diagnosis.

I was sat in Hammersmith hospital with my surgeon when he told me that my colonic inertia was definitive from the results of the various tests that it was on the severe end of the spectrum, in fact he showed me that it was off the spectrum.

I broke down, I'm not sure I have ever felt such an influx of emotions in my life. I had the biggest smile on my face when he began talking, I had to cut in to make sure, "wait a minute, does this mean I have a diagnosis?" it had been months of agony with uncontrollable symptoms that had stopped me living my life. I had been called crazy on countless occasions, I was so happy to finally have a diagnosis and someone that both understood and could confirm what I was going through.

A card I saw on the weekend which I thought was very fitting to my experience with chronic illness

He explained to me at the time that medication may not work, and even if it did it may not be long term, he had to do more testing but he could already confirm my colonic inertia was so severe that the only option he felt viable was a ileorectal anastomsis (colectomy) leaving about one foot of my colon and to attach it to my small intestine.

That was the moment that the emotions changed, while he was advising the surgery he would have to carry out, and my future life with a bag, I was in awe I felt a wave of emotions wash over me once more. I realised how serious and more importantly, life changing my condition will be.  How had I gone to having doctors telling me it was all in my head to the following day drastic conversations about having my colon removed remaining with a bag for the rest of my life?

I was in the consultants office for over an hour, with the majority of time being comforted by my surgeon. It was a rare occasion that I hadn't asked my partner/family/friend along with me to an appointment. I had become ashamed and embarrassed of dragging loved ones along with me, to inevitably be told they hadn't found anything, discussing my mental health, or just being told there was simply nothing they could do to help.

Many people diagnosed with colonic inertia do not know why this condition sprung into their lives. Imagine waking up one day and feeling like you have a stomach virus...  and then imagine that feeling never going away! The symptoms of colonic inertia include severe constipation, persistent nausea, vomiting, bloating, overflow diarrhoea, bloody discharge, amongst others...

It's incredibly daunting being diagnosed with any chronic illness. Personally for me, I felt (and still feel) like I struggle to have anyone that quite understands what I am going through. Although, I do understand I can't be making it easy for others as I am always putting on a brave face and avoid talking about my chronic illness socially as these moments are rare and the last thing I want to think about is my illness. Then again, this becomes a catch-22 as on the face of it people find it difficult to see or understand how much it affects your day-to-day life.  There are so many questions that go through your mind, "why has this happened to my body?" "what medications should I take?" "what if these medications don't work?" "will the meal I eat leave me sick for days to come?" "how long will this last?" "when will I ever regain control from my symptoms/life?"

There is no known cure for colonic inertia, and like most chronic illness, there is no "one size fits all" treatment. It is a complex journey of multiple medications, doctors and procedures. You become desperate for anything that will improve your quality of life. Each time something doesn't work, you loose a little faith that you will ever not need to let your world revolve around this again. The helplessness feeling is the one of the worst feelings I have ever experienced, it has been something that I have personally struggled with throughout my chronic illness. You are unable to mend  yourself, it becomes a constant race for recovery though the finish line is always being extended.

Many people who have chronic illnesses face the same dilemma, there is no "right" choice to make for your treatment. Do you proceed to have your colon removed and a bag, for it not to relieve your symptoms after all? Do you continue with medicinal treatment for it no longer work in a few years?

Something my GP warned me of, that it was likely they may not find my chronic illness straight away, it may take years for everything to click in to place, or alternatively, I may be diagnosed incorrectly. While this is a scary thought that constantly plays on my mind, I am glad she has been honest to me, as it's not always the case.

The pressure to do the "right" treatment can be overwhelming, not just from the motivation from yourself for your life back, but from your various doctors all disagreeing with each other, loved ones not agreeing with various treatment methods, friends questioning why you're not better yet...

Ultimately, it is the patient who must make the choice for what they feel is right for them, not what their partner/family/friend thinks, not what someone online has done, it is a discussion between the doctor and patient. Everyone else cannot judge you for undergoing an operation/surgery, medicinal treatment, alternative therapy, lifestyle changes at the end of the day this is something that affects you, and only you know what you will be willing to do to your body for recovery or realistically, something that could also not work either!

What I have learnt is to allow my faith to be stronger than my fear. It can be incredibly difficult at times, but as I have explained to everyone in my life, if I ever get to the point that any one of my illness requires life changing surgery, no one will influence my decision. It's important to remember that they don't know what it's like to live day-in-day-out with your symptoms, and if they truly care for you your perseverance for recovery is the strongest thing.

Therefore, whatever decision you decide to make for your illness, make sure it's not the decision of everyone but rather the right decision for YOU. The most important lesson I have learned over the past ten months is that "no one knows your body better than yourself".

"The Hopeful Chronic"

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