My name is Aisha, AKA The Gutless Ninja, and I was diagnosed with Ulcerative Colitis in 2010.
Such a small sentence, right? Yet it’s a huge marker in my life. I now find myself referring to life ‘pre-diagnosis’ and ‘post-diagnosis’ and boy, do I wish I could knock some sense into the pre-diagnosis me and tell her to get a grip, enjoy every single day and NOT take the luxury of pooping for granted!
That’s right, the luxury of pooping. Although UC is not just a pooping disease, it was one of the major symptoms. I was rushing to the bathroom up to twenty times a day, passing painful, bloody diarrhoea. Add the awful, cramping stomach pains (Carrie Grant has described them as being WORSE than childbirth) which felt as though my insides were being twisted then poked with hot knives, the constant fatigue, skin issues such as rashes, aching joints, rushing to the loo following every mouthful.. you get the average day in the life of a person diagnosed with Ulcerative Colitis, a form of Inflammatory Bowel Disease. IBD is an autoimmune disease in which the immune system attacks healthy cells and causes inflammation. There is currently no known cause or cure. I feel like yelling this at those who claimed I was faking my illness or that it’s caused by junk food or that ‘loads of people have it and they’ve been cured!’ But I try to be a nice human being so I’ll keep quiet. 🙂
And the absolute worst thing was that I hid my symptoms. I was too embarrassed to tell anyone that I was bleeding loads whenever I went to the toilet. We just don’t talk about poo, it’s a taboo. Especially in our south Asian culture. This is wrong on so many levels. My silence made things so much worse. If I had been diagnosed sooner, maybe my body would have accepted certain medications and the disease wouldn’t have been so severe.
So I kept quiet and hoped that by ignoring my symptoms, they’d go away. In case you’re wondering, here’s a short list of some of the symptoms experienced by IBD patients:
Surprise surprise, my symptoms didn’t go away. They didn’t particularly like being ignored either, so things became a lot worse. I was still too ashamed to speak about it or see a doctor.
Now, 6 years (yikes! Where has the time gone?!), countless weird and wonderful medicines (mouse juice, anyone?), numerous blood tests, X-rays, colonoscopies and two major surgeries later.. here I am. I’m missing a few bits but I don’t actually miss them. If you’re new to the blog, I’ll tell you: I no longer have my large intestine, appendix, rectum, anus or sphincter muscles. Fun, right? It’s one of the best decisions I EVER made!
I have an ostomy. The end of my small intestine is sticking out and I attach a bag over it to collect my poop. This has presented its own challenges but right now we’re happy with each other.
The purpose of this post is to get people talking. Don’t ignore any problems. Nothing is more important than your health. There’s NOTHING to be ashamed about if you notice any problems with your poo! And if you have friends, family or colleagues with IBD, please take a few minutes to tell them you’re there for them when they cancel plans at the last minute, or when they can’t go somewhere simply because they don’t know where the toilets are, or when they’re exhausted after taking a shower and have to rest for three hours. One of the best things any of my friends ever said to me was: ‘I’ve been reading about IBD and how it affects you. Please feel free to talk to me anytime. I may not understand what you’re going through but I’m here for you.’ I was in tears because it’s such a beautiful gesture.
For those who’ve been following the blog.. I owe it to you to explain my absence. WordPress tells me it’s been around 6 months since I last posted.. gulp.
I’ve had a lot of struggle with in terms of my mental health and I went into hibernation so to speak. I’ve teetered on the brink of another breakdown. Alhamdulillah, things are a LOT better now. I’ve made some major changes in my life and I’m learning to be happy again. Last month was full of smiles and for the first time in ages, I laughed until I was gasping for breath! It’s the simple things. ❤ my heart is at peace.
I still struggle with anxiety but this time, I’m learning how to cope. I try to listen to my body when it needs to rest.. most of the time!
I removed a major cause of stress and anxiety from my life and I request your prayers/Duas with this as it’s the hardest thing I’ve ever done. I realised I needed to do something when I felt suffocated, drowning in darkness and on the verge of another breakdown. I didn’t think I’d survive this one. I couldn’t go back to the darkness I was in last year. The very thought was terrifying. That’s when self-preservation kicked in and I decided to do what was needed.
Rosie is also doing well. She’s farting, whistling, gurgling and popping her way through life.
And the most exciting bit.. I’m a Patient Advocate for Convatec! This involves speaking at patient events, giving my views on ostomy products, raising awareness and above all, working with the most fantastic team of superheroes! Take a look here and view their inspiring stories.. I’ll post more about that soon.
Oh, I’m still reading and trying to get everyone else to read! What have you all been up to? What are you reading at the moment? Please leave a comment below and let me know! I feel I’ve been hiding from the world and it’s time to come back. If you sent any messages and emails, I’m sorry I didn’t reply. My head has been a mess and I’m just starting to tentatively engage with the world.
Be nice, spread peace and eat cake,
The Gutless Ninja
P.S. if you could please raise awareness of IBD this week, that’d be fab. Please like my Facebook page (I’m not really active on other platforms at the moment) where I’ve shared lots of information. If it helps even ONE person then it’s worth it. ❤️