Tuesday 17 January 2017

What's IBD



Most persons find it a shock to find out that I have been suffering silently for the past 15 years with IBD. I mostly kept quiet about it except for my few close friends and family. I only recently decided to start sharing my embarassing invisible illness to the world. After joining a few support groups via facebook and realised i'm not alone, I no longer felt that sad pathetic existence anymore. I always share IBD related content on my personal facebook page but nobody usually reads it and  those who do ask why do I always share that. I then explain because I also suffer with IBD. "whats that?" I get asked. I tend to make fun of everything as a coping mechanism and usually respond jovially saying 'I Be Drinking' then after getting a few smirks thrown my way I get serious and tell them it's Inflammatory Bowel Disease... then the questions arise and they fit the pieces together..." so that's why you always go to the toilet all the time or always want to know where's the nearest toilet". For IBD awareness week last year I decided to publicly put up a post sharing my story and struggles up for the first time and decided it's time to stop being ashamed of what I go through and time to be honest with myself and finally embrace it.

What exactly is IBD? For starters it's an autoimmune disorder, the cause is still unknown and they are starting to get around to finding out what triggers it and finding more tailored ways to treating it, but sadly there is still no cure for it just medications, steroids, immunosuppressants,biological meds and surgery is needed, in most cases to save our lives. There are two main kinds of IBD, Crohn's disease and Ulcerative colitis. I've been fortunate enough to have Ulcerative colitis when I was 13... Lovely childhood I had eh, but it helped to shape me become the man that I am today(guess something good did come out of it all hehe). Crohn's disease can affect anywhere in the digestive system from the mouth to the rectum where as ulcerative colitis only affects the colon.
It is way more than a poop disease, yet that's the most visible symptom...we go to the toilet ALOT! So people tend to not want to share their experiences, I've had dates never get back to me just because they think it's gross, after all to the rest of the world poo is taboo, but to us its literally a way of life. Other symptoms of IBD include fatigue, fistulas, anemia, arthritis, constipation, decreased appetite, fever, gallstones, joint pains, kidney stones, liver disease, mouth sores, skin disorders,weight loss,diarrhea and abdominal pains and cramps.Think I listed all, lovely list of symptoms yeah?

Most days its a struggle just to get out of bed thanks to fatigue. That's the worst I find and really gets to me. How do I explain to someone what it feels like to be fatigued? To literally just wake up and be so tired all you want to do is stay in bed but no matter how much sleep you get you will still feel just as drained with zero energy. Yet you somehow gotta get dressed for work or go about your daily life. I don't let it get to me though and it hardly ever shows that i'm struggling as people find it a shock to hear that i'm not well. Even my friends and family seem to forget just how sick I am and some think that I actually have been healed and i'm fine (might need to go into acting Ha!) I used to go to the toilet as many as 44 times a day! Bleeding and mucus every single time! I thought i was bad until I started to speak to other persons with IBD to find out that they went as many as 60 times! Lowest my hemoglobin got was 4 then stayed 6 for about a year, then meet a really upbeat girl who has inspired me whose hemoglobin was at 2!!! She spent up to 6 months in hospital! Call me crazy but that's one hell of a woman right there, she's one bloody tough fighter! My kinda girl hehe shhh.

The purpose of creating this blog is to share my experience, help raise awareness about IBD; show the world it's ok to have a chronic disease and have fun with it and my upcoming trip to the UK to meet other persons with IBD. I plan on making little videos sharing our stories as i've met so many amazing fighters the past few months and never have I ever felt like I belong more than with them! I'm from the island of St Lucia by the way, its a tiny island in the Caribbean where IBD is rare,at the time of my diagnosis there were 6 other persons and they kept to themselves, some moved to the states for better treatment as healthcare here is literally a joke and I have no medical insurance thanks to the insurance companies finding a lovely way to get rid of me when i turned 18. I needed to switch to an adults policy then got the shock of my life to be declined due to having a pre-existing condition!!!

So look out for my 50 toilets of Great Britain as I intend to take a photo of every toilet i use and post its location... Everyone takes pictures of street signs and landmarks.... Well I'm not like everyone and I like to have fun with this bloody disease. Lets see if I actually will visit 50 toilets during my stay!



2 comments:

  1. A true warrior nd well written...go on sharing nd helping others.Enjoy your most awaited trip.Much love xxxx

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