I’ve already had five and a half years with my chronic illness. I’ve gotten used to it disturbing my life and disrupting my plans. It seems to have a knack for doing this, a lot.
What I am not used to is being without medication.
It feels foreign, almost like we are testing the IBD gods, tricking them into thinking I am well.
For all intents and purposes, I am well. Latest multiple test results came back clear; things are looking up for me since surgery last summer.
But that doesn’t mean I feel content with being in remission.
If anything, I feel more scared. I feel fearful.
I could take the medications and I got comfortable with knowing I needed to take them. My life was a schedule of medication, appointments and managing my IBD issues.
So much has changed, its overwhelming.
Despite going through hell before surgery, knowing that that wasn’t normal but I needed to go through it to come out the other end, fit and well. I also needed to get my ostomy to have the life I am currently living, and it is the only reason why I am doing so well. That, and my surgeon’s faith in physically removing my colon to improve my Quality of Life. And it sure has! And managing a stoma isn’t as bad as I have conceived it to be in my head. I have had nothing to be scared or worried about, the support and care I receive for my stoma is beyond anything else.
To go from that hellish Summer of 2016 to this remission of January 2017 – a mere five short months – is beyond comprehension.
Remission is one of those words that medical professional within IBD care throw around cautiously because it’s not exactly an easy road and doesn’t always happen, let alone being quite a complex goal to achieve. I have more important goals when it comes to my medical care; so, remission wasn’t high on the list. I had expected to need my mediation for a little while longer, be on the radar for a lot longer, just so they were watching me. I take comfort it that.
What do I have to take comfort in now?
I am more fearful being without my medication than I was taking it; and I was taking things which were potentially very harmful, but it was all outweighed by how absolutely rubbish my disease was making me feel, how much of my life it was taking away, how utterly miserable I was. And ultimately, those medications led me to surgery and this life I now lead. So, I appreciate all the shit I’ve been through, but I am still scared. Apprehensive and nervous, to boot.
I hope my remission lasts but I know it probably won’t. My ostomy has been life changing, almost saving my life – I can’t disregard my care nor my TPN days for also doing that – but how will it react to my body being unwell? So far, I’ve only had a stomach bug. I dread to contemplate how I’ll feel in a full-blown Crohn’s flare. But considering that that might not happen, I am here enjoying my good days, appreciating the NHS and loving my life, being proud of being an ostomate.
NB: Orginially posted on Safe Space here