The Crohnicals of Amurai

Hey! You must be new here?

Don’t worry, so am I.

I’ve never written a blog before! I mean, I have tried to in the past but I lost the motivation. I kept trying to convince myself that someone else could do a better job than me at encouraging other people to have their voices heard. That was until… a few months ago. I finally realised that I’m the one who needs to have their voice heard.

To be completely honest, another reason I have put off writing a blog might be relatable to you: it’s because I was afraid to come to terms with everything I have endured in my past. One of the things I am still trying to learn is, how to accept things for the way they are. Instead, I dismiss things, telling myself that “I’ll deal with it later.” But when later comes about, I’m never ready to deal with it. I’m also worried about telling the whole world about the things I have been through, I don’t know if I’m ready to make myself vulnerable and open up about all my personal struggles.

Before I go any further, one thing you should all know is that I have Crohn’s disease and Perianal Disease. I was diagnosed when I was 12 years old, I’ve had this condition for the past 6 years. “Amurai the Samurai,” which is the title of this blog, is a nickname gifted to me by one of my aunties and is the name I have chosen to write these posts under. Currently as I write this post, I am 18 years old. I have 3 younger siblings, making me the oldest. I have an 11 year old sister who is a huge Avengers fan, a 7 year old brother that spends his time either building with Lego or playing Minecraft and a 4 year old brother who proudly believes that he is a descendant of Optimus Prime (a transformer.) I live with both my parents, my dad, who is (not so secretly) Batman and my mum who is Wonder Woman. You can imagine what kind of chaos may occur in the life of two very important superheroes! But this story is not theirs, this is mine, about my journey and the challenges I’ve faced and have had to overcome, sometimes alone and sometimes with help.

I will admit, I’m feeling skeptical about this. I know things will be so different when all this is out but my main objective is that this entire blog will touch everyone’s hearts and make them feel as empowered and brave as I do writing this.

You may have heard, the week I’m about to talk about was rough. Not just for me but for my entire family. See, I’ll tell you my story, it’s important to talk about these things. I won’t tell you my origin story, not yet. But I will tell you this story, the one that inspired me to finally start this blog and it all started on Wednesday, 15/7/20.

I was exercising (believe it or not haha) when out of nowhere I felt immense pain in the area where I have had scars and an open wound from previous procedures. Concerned, I made my mum aware and I treated it by taking salt baths, thinking ‘oh it’s probably because my muscles are tense.’ Oh how wrong I was..

I took one of my immune suppressant medications, a weekly injection, on Thursday called Adalimumab. I had been putting it off, the administration of said medication takes a toll on my mental health, I can’t bring myself to take the shot, it takes me days of convincing but that’s a whole different story!

Since I took that shot, on the Friday of that particular week, the pain got worse and developed into a “balloon pressure” feeling. It felt like a balloon was blowing up and was about to explode. Forgive me if I am going into too much detail but this is the best way for me to describe what I felt so you can imagine it with me. My mum called up my IBD nurse (inflammatory bowel disease or rather in my case Crohn’s disease) nurse who advises me when I’m unwell.

He suggested I were to come in the next Wednesday, 5 days time, unaware of the development of my pain. Me trying to be ridiculously brave, stupidly agreed to his plan. I promise you, this is the last time I ever dismiss my pain. I had a mad infection, Friday night was the worst, my pain was so bad I woke up at 4am in agony, I cannot even explain what it feels like but I’ll try:

Imagine, you’re lying down, on your left hand side, lower region, where you sit down, then 10 cm mid thigh, that whole area feels like a balloon is inflating in between your muscles and nerves and twisting everything, pulling everything, electric pain. It’s so scary. All I could feel, taste and see was pain. I took painkillers but that did nothing. Paracetamol can only help so much right? And get this, I’m allergic to other medication such as Codeine which is in almost every other pain relief! *Internally screaming*

As I’m a Muslim, my way of getting through hard times is by turning to God. I read and listened to some Quran, hoping that maybe God would hear me and help me. I was so close to giving up, so close to throwing in the towel and just not trying anymore. I fell asleep crying and listening to a chapter from the Quran called “Surah Rahman,” which is supposed to help with illness. Would you believe what I’m about to tell you next?

I woke up on Saturday, for almost 5 whole minutes, I had forgotten about my pain… until I decided to move and all the pain came flooding back all at once from all directions (definitely don’t recommend.) God heard my cries and my prayers from the night before, the horrible pain I had been in was slightly relieved as the balloon turned into a small lump as it had burst independently. I took a hot bath, as this would help to keep the area clean and also relieve the pain. After rushing out the bathroom, I thanked God for not turning his back on me and for giving me all the hope and strength I needed to get through one more day.

As I had a fever on Saturday night, I had no choice but to go to A&E (accident and emergency department) the next day immediately to be examined in case I had an infection. What was happening at the time is more commonly known as a relapse of a perianal abscess. The risk of this condition is the possibility of sepsis, this is when any infection or toxins stored in the pus build up could enter your bloodstream and since your body is out of balance, it can’t fight back. This leads to organ failure, tissue damage and worst case scenario: death.

Sunday morning, bags packed, family in the car, we set off to the hospital. My mother was anxious that they wouldn’t be able to help me, I was anxious that they would help me but kick her out. Whenever I have had to come into hospital for an admission or any sort of treatment, I’ve always had my mum with me but that day, I had to stay by myself. You see, now that I’m 18 years old, in the eyes of the world, I’m an adult even though I don’t feel the same way. According to the British hospital laws, once a patient has turned 18, they are to act as if they have never had parents. Absolute rubbish! Again, another story I am yet to tell another day.

We arrived, the two of us, went together to the emergency centre, to get seen by an on call doctor. Due to Covid, I was not allowed to have my mum with me when I was being examined. It’s not pleasant for a stranger to be prodding around in a very sensitive area especially if you are shy like me. So since I couldn’t have my mum with me, I asked if I could at least have another nurse in the room with me for support. Whatever. I brushed my feelings of insecurity and embarrassment so I could get rid of my pain.

The doctor’s verdict was that all I needed was a week’s worth of antibiotics and over the counter painkillers. Bam! Job done. But I knew differently. You see, I’ve gone through this whole ordeal, more times than you can count on your fingers, funny thing is I can actually say that now since this was the 15th or so time! I spoke up and said

“I’m sorry but I’m not happy with this plan.”

I told her how I usually have surgeries (drainages) to resolve this issue.

That of course got the ball rolling, she contacted the surgeons who saw me promptly and immediately decided “yup, this girl needs surgery.”

While I waited for a bed to be given to me, I sat in a room with my mum, not knowing that this moment would be my last with her for a couple days. Had I know beforehand that I would have to endure the next 3 days alone, I assure you, I would not have so easily accepted the plan.

We were literally ripped from each other’s arms and watching her walk away shattered my heart, I wanted her to come running back to me and hold me and promise me she won’t let me go through this alone. But she had to go.

I was in a terrible mood for the rest of the evening. I refused to talk to anyone. I was too scared to have been left by myself, I have trouble often remembering the right answers to all the big questions as well as remembering important information given to me. I knew that the next few days would be challenging but nonetheless I settled in, don’t worry. But the night was rough.

It was so dark.. so desolate and quiet, the silence itself, echoed as it bounced off of the 4 bleak walls that boxed me in that room, alone and cut off from civilisation. I was on different medications, given by IV drips (intravenous not the number 4), these messed with my head and made me sick. I couldn’t eat and if I did, it would only reappear 30 seconds later in a variety of forms. It was a magic trick I somehow learnt without meaning to, one I called “vomiting.” I don’t recommend you learn it, it’s not pleasant at all.

My friends and family called me when they were able to, talking to them and seeing my family on video call helped keep my mind off my isolation but what waited for me the next day, no amount of reassurance was enough to prepare me for that trauma.

The day of my surgery: I went to the bathroom to braid my hair, I came out and there were two men. One nurse, one anaesthesiologist, who funnily enough has been part of a previous procedure that I have undergone 2 years ago. Before I had time to grab my hijaab, I had to be taken down in the bed to theatre. I had to resort to using a blanket instead as I felt super unsafe and vulnerable without my hijaab.

Even though I have done this part 11 times, it does not get any less nerve wracking.

I arrived early, the theatre room was not yet ready, I was left alone, in a holding bay, for 20 minutes. In those 20 minutes, loneliness hit me hard like an avalanche and I began to cry. I felt stupid, lying there and crying. I kept telling myself to be brave, to be strong but at the same time. All I wanted was my mum. I lay there and imagined she was there, stroking my hair, telling me it’s okay and how ugly I look when I cry which would have of course made me laugh and stop.

Putting me to sleep was a challenge. My body rejected the drugs and went into panic, my heart rate spiked and I thought I was going to die because I literally could not breathe. They let me rest for a few minutes, eventually I calmed down and knocked out.

I don’t remember any dreams. When I woke up, I woke up broken hearted. I asked the nurse “is my mum here” she said “no honey.. she’s at home.. what do you need?”

I asked for a hug from my mum and she replied “Oh honey, your mum is not here…. Do you want me to hug you?”

I said sorry, but you’re not my mum, it’s not the same.. so it’s okay..

I kept waking up and falling asleep, disorientated. I kept crying and freaking out, asking where I am, asking where my mum is, begging for her to just be there to hold me and tell me she’s proud of me for getting through it.

Since mum was not with me, I asked the nurses to call her for me, to tell her that her baby did it and that I want her to be proud of me. They needed her number and despite my high, disorientated state, I was still able to give them her number as well as various other numbers as a precaution. I asked talk to her too but they said the line was too short but I misunderstood, I thought they said I was too short and that made me laugh.

I fell asleep and woke up, again, crying but this time a bit more alert and apologising for the scene I was causing. I was told by one nurse that I wasn’t crying, I was singing. Now if you’re close to me or know me, you’ll know that I can for a fact sing! I said “huh, I can sing better than that!”

And I did! They urged me to sing “Let it go” from Frozen. I smashed the song, they clapped and cheered, asked me to sing more! So I sang: “Reflection” from Mulan and “I want it that way” by The Backstreet Boys. I would never ever have even considered doing this had I been sober. I blame the anaesthetic and morphine!

I hate this part. You thought the surgery was hard? No. The recovery is worse. I woke up 5:30am Tuesday, prayed the morning prayer, cleaned the room, packed my bag, made a cute little thank you card for the nurses and prepared to go home. I was still slightly confused and mildly out of my mind. But despite my state, I still remembered to ask all the important questions. I asked one question “did you leave any sort of bandage inside the wound?” Which I was assured there was not, just a plaster on top. Yet when I got home, this was not the case, no one knew that the surgeon left a small piece of gauze inside the wound but luckily I was able to have it removed before it could have caused another infection.

Anyway, back in the hospital, the nurse in charge saw my manner of communication as a sign that I was fine but little did she know that I was struggling to understand and make sense of things still. I had to force myself to be alert and awake despite my yearning desire to pass out. Due to her misunderstanding and arrogance, she wanted me to arrange my own discharge which was absolutely unreasonable. She also refused to give information to my mother about where I was or how I was doing. I could not contact my mother due to poor network. It was unfair to have expected a little, newly 18 year old child to have taken on so much burden alone so suddenly especially after having gone through an intense procedure.

Anyway, I got discharged after 7 hours of being constantly told one more hour. The doctors were meant to give me medicine but they never did. Oh and they also forgot to give me a discharge note. My mum came to get me, broke me out prison break style. We just rolled out without a care (since I had to be in a wheelchair.)

My family was so happy to see me in the car and I was so happy to be with them again. It was overwhelming to be home again too. From being isolated to being surrounded by people. When I got home, I was blown away with the gifts I was given, many balloons and a cake which said “welcome home,” my little brothers even teamed up to make me a cute “comfy corner” on the sofa out of soft cushions, so that I could sit comfortably with them. All the sweet gestures made me feel so thankful for having my family around me, the next few days were bound to be tough but I kept telling myself that “I’m home and that’s all that matters.” I have a lot of people to thank but most of all, I have myself to thank, for not giving up or giving in to the darkness which yearned to pull me under. I carried on fighting because that’s who I am! I’m a warrior and you can be too, if you trust yourself enough.

The final verdict:

The recovery will not be easy and I know that. For a few mornings after coming out of theatre, I would wake up panicking and crying. I felt like I could not breathe, like someone was pinning me to my bed by my throat. This whole experience was me reliving the time I was being put under anaesthetic. But I knew I could get through it.

I have a lot of people to thank for getting me through this. God, my family, my siblings, my friends and most importantly, myself. Thank you everyone for constantly reminding me that it’s okay to not be okay and that eventually with time, I will be okay. I just need to be strong until I’m ready to take that first step towards healing myself.

No matter how many times you may hit your big toe on the side of a table, the pain will always be the same, it will always hurt you and make you regret not wearing shoes. But what does change over time is the confidence within yourself that “Yes! I’ve hit my big toe and it feels like death but in a few seconds I know I’ll be okay because I’ve done it before and I have survived.” That is what is the key to recovery, remembering that you’ve done it before and that you can do it again.

The picture at the very top is of a poster my sister worked very hard upon for me, as a warm welcome home gift. It’s Captain America’s shield with one of my favourite lines from the movie “Captain America: The First Avenger” which is: “I can do this all day.”

When she showed me the poster, I burst into tears and cried so much, I was so touched by her sweetness and thoughtfulness she put into it. To me this meant: I can fight Crohn’s disease all day and still come out on top because I’m a superhero, I’m brave and I’m strong. I’m Amurai the Samurai, the girl who never stops smiling even when face to face with adversity.