From a (hyper) active woman, mother, wife, keen chef, music lover, reader… to a housebound human, barely making it through the day, miserable and dejected. Never before has the importance of mental health been so apparent to me than over the past two months. It all started just under 11 years ago, two weeks into a new job.
[Fair warning – this is a long post which goes into specifics related to a health condition.]
That’s when what seemed like a regular gastric flu just wouldn’t go away for weeks and turned into something more insidious – a chronic condition called Ulcerative Colitis. (You can read all about those days here.)
The implications of this condition are serious – it wears you down, leaves you in pain, changes your lifestyle, physical appearance and character. Basically, whether you want to or not, your life does begin to revolve around the disease. How can it not when you’re battling demons everyday?
Back in 2016 I faced having my colon removed and a stoma put in – something which is very traumatic for most people. In the field, the operation is jokingly referred to as front butt surgery, because you’re now pooping out of a sort of tube (made out of your small intestine) protruding from your stomach (and enclosed in a bag). Many people find this very hard to deal with, and several in fact seek reversal surgery when possible.
Not me – I got my life back! I was thrilled and over the moon – I was finally truly living again. I could travel freely, go to the playground with my son, partake in all his school activities, enjoy date night with my husband. I was born again – funnily enough, it’s actually quite a privilege to experience that.
Cut to 2019 – specifically April 1 when I was scheduled to have my second major surgery in three years because of UC. Reversal was not an option for me because, despite the majority of my colon having been removed, disease was still very present in the few centimetres left together with my rectum. I was still losing blood and experiencing slight pain. More importantly, survivors of UC are more prone to bowel cancer after having had the condition for 10 years, and here I was, 11 years on.
And so, a second surgery was on the horizon – that of removing this last small part of colon together with my rectum and sewing up my bum. Again, colloquially referred to by patients as a barbie butt! (Humour is so important I’ve discovered.)
This time around, however, things went very differently from the get-go. It all started with the fact that I was only scheduled for surgery a couple of weeks prior to the date, which left me, a planner and someone who likes having as much information as possible, with very little time to get up to speed. And things progressed steadily downhill from there:
- I was offered an epidural just half an hour before the operation – stunned and with very little to go on, I refused it. I don’t have the best odds when it comes to my health (little did I know!) and I didn’t want to risk the very serious potential outcome of paralysis. Having a 6 year old heavily weighted this decision.
- My veins were unusable, literally, After having tried about 6 sites, even using the one ultrasound machine that is available at the state hospital which is used only in the worst of cases (hello, have you met me?), they eventually settled on a central line. Post operation, my amazing anesthetist joked that I should come with a ‘rare’ warning label. And, this time seriously, he actually put a note in my file for future reference.
- This, however, also meant that I didn’t have usable veins for an IV cannula, crucial in the administering of medication post operation. Sure enough, the one in my foot – yes, in my foot – failed after less than 12 hours and I had to have the last dosage of antibiotics administered via injection in my bum. When I asked the nurse who was about to shoot me up if this would hurt (I like being mentally prepared), she sheepishly looked at me and told me that in all her career she had never seen this antibiotic administered this way. Yay, another first for me… There and then the pain (of two injections, coz it was a big amount of liquid) was unpleasant but sufferable – the real pain kicked in three days later and lasted for over a week.
- On top of this, it turns out I was born with an unusually (yay, again!) long and narrow pelvis. This meant that the area where the operation was carried out was further compromised, with the surgeon having very little room to maneuver. As a result, I lost a lot of blood, requiring a blood transfusion after the operation – BIG SHOUT OUT to those who donate blood, where would we be without you?
- Furthermore, one of the two drains I had sticking out of me wouldn’t stop outputting blood (given the pelvis situation, not surprising). It stayed inside me for 10 days – which meant I was also at hospital for 10 days (instead of the three days that had been suggested during my pre-op consultation). Removing it was one of the most painful experiences I have ever endured. It seems that having been there for so long, my body had started to weave fibres around it; so, as the nurse tugged it out, she was effectively tearing at my body from the inside. I consider myself to have a high pain threshold, but I had to ask her to stop half way through, chomping down on my pillow to stop the murderous screams I was emitting. She was A-M-A-Z-I-N-G.
- And the final, serious complication, again probably due to my pelvis being as it is, is that the catheter removal failed. Something I had not been warned about. (“It’s so rare, and it happens in men not women.” Hello, have you met me?) This was a massive blow for me. I was actually discharged with it after two failed attempts and a third attempt a few days after failed again.
And this last point (together with the buildup of all the above, clearly) is what made this experience so different this time around. The failed catheter removal destroyed my spirit. I couldn’t sit because my bum was in agony after the operation, and I couldn’t lean forward as that would have meant pressing on the catheter pipe. I now had two bags to deal with, one of which is uncomfortable, a foreign body inserted inside you, which tugs and makes its presence felt.
As though this wasn’t enough, two weeks ago I was rushed back to emergency because my catheter blocked – oh the agony! I was readmitted to hospital having contracted a UTI.
One week ago my catheter was finally removed and so far so-sort-of good. I’m managing to void, though it’s nothing like before. I have to exert myself, I’m visiting the loo up to eight times a day, and I’m also experiencing discomfort and throbbing.
Seven weeks post operation, I’m still not sitting comfortably – when I had been told that within a week I’d be fine. I spend most of my day lying in bed, and this is the first time I’ve felt able to put words to paper (so to speak). I haven’t even been able to read much, mostly relying on Netflix and Amazon Prime to numb myself.
Why this lengthy post?
Well, because as I finally start to see some glimmer of light at the end (for me) of a very dark tunnel, some things begin to form clearly in my mind.
Most importantly – how much we undervalue mental health.
I’ve always considered myself a strong woman, someone who can fight against the odds (of which I’ve faced quite a few) and rise up, stronger, more confident, someone who always sees the silver lining, who actually looks for it.
And at times, through this horrid experience, I did. I blessed the caring patients and their families with whom I got to share my ward and was so grateful for their use of headphones! I was lucky to share my walks around the ward with Edmond, a wonderful gentleman (one of seven brothers!) who made me smile and lifted me up, even though he was going through a far worse experience than mine. I had a remarkable, incredible team of nurses around me who looked after me physically and emotionally, whenever possible. I had an excellent surgeon who managed to, against the odds, operate laproscopically once again and, so far, it seems my wound has healed well. My GP calmly and kindly answered all sorts of questions and doubts that I had on multiple occasions, despite my not being able to visit him. And when I was most upset and confused about the catheter, I met Kevin, a urology nurse who took the time to listen to my fears, to understand me as a person, and to give me courage.
I had friends who checked in with me on a daily basis and family who visited every day, giving me a lifeline to the person I was before. And there were those who stepped in practically too, even if this meant going out of their way, whether to cook meals for my family, or to give me important medical advice, or to pick my son up from school or stay with him till my husband returned from work. They will never truly understand what this meant for me. (As I’ve said before, experiences like these show you in no uncertain way who you should treasure most and who isn’t worthy of your consideration.)
And of course, within my own four walls, I have truly understood how lucky I am to have such a supportive partner, loving son and two furry bundles who allowed me to stroke them to oblivion, thus comforting me in the process.
Despite all this, I still cried every day for the past seven weeks, I still couldn’t bring myself to read any of the books or magazines I had, I could hardly listen to my iPod. The pain simply wore me down. It frightened me – would I ever recover; would I ever get my life back; did I make a terrible mistake going in for this; should I have waited till I got bowel cancer and only acted then, enjoying my life up to that point; will I ever get to go out again with my 6 year old; how many more school events am I going to have to miss; when can I begin to chip in again at home and lift some of the weight off my husband’s shoulders; will I regain my mojo; when will I sit normally again; how, how is this going to get better?
I’m still not there, far from it, even because the pain, though lessened, is still present and constant. But yesterday, for the first time in 8 weeks, I baked a cake. And today, I listened to one of my son’s favourite songs and sung along with him. I’ve learnt to take the small victories where I can get them.
One of the most important tools, through all this, has been something quite unbelievable, at least for me. A couple of years ago, The Duke and Duchess of Cambridge and The Duke of Sussex set up Heads Together and they launched it with two videos which I had found quite inspiring at the time (here’s the other featuring Lady Gaga). As a result, I began to follow Heads Together on social media and keep abreast with the conversation in the mental health field. Without realising it, through the past 24 months, messages I was hearing or reading began to sink in and become a part of my understanding of reality. And so, as I recently posted on an IG post on the Heads Together channel, this time around while it has been very hard for me to find my strength because I wasn’t mentally prepared for the challenges I’ve had to face, I didn’t feel alone through it all. I had learnt that is was ok to not be strong all the time, to acknowledge and embrace how I’m feeling and that, while still not there, I’ve held on knowing also that this is another part of being human and that we are all in it together.
Today is World IBD Day (IBD = inflamed bowel disorder of which UC is one type). And so on this day, I salute all of us fighting invisible disabilities and somehow, finding the strength to get up, day after day. I hope that more and more will be said on the crucial importance of mental health and how intricately woven to physical health it is. I also long for a time that this symbiotic relationship will be given its due within the health services and structures of our country and I dream of the day I will be able to contribute towards that in a practical way.
And to all those fighting an impossible battle – I hear you, I see you, I feel you.