IBD festival

So I've arrived in the UK day 4 in country and it has been an amazing past few days, and no its not been because I have been out partying and having a few cocktails; but because of the people I have met with IBD. Total strangers not knowing anything about the other yet knowing each other so intimately as we all suffer with the same shitty illness (pun intended). Not knowing anyone else with IBD has been hard suffering alone, but now that I have met others, it's hard to describe that sensation of mixed emotions of joy, pure excitement with a little bit of emotional break down as I've been alone through it all and now to finally meet persons who finally can relate and understand what I went and still am going through. Just typing it brings tears to my eyes quit literally (yes yes i'm a softy and I had to get away from my IBD friend so she couldn't see the tears run down my eyes)

Don't really know what to say. Its been a really amazing experience thus far and I'm really looking forward to meeting the others. Haven't been sharing much of our stories as planned more just been having fun glad to meet each other...our fellow siblings of this bloody disease that has plagued our lives. I've heard of blood bonds and friendships forged under fire at war, but never did I know there could be poop bonds lol. 

So far I have visited 3 toilets of Great Britain!!! Yes the cold actually makes me go less and when I am out I can control it and don't go at all except topee...the cold makes me pee a lot. But when I get home gosh i explode lmao. Bit of an achievement to have been all the places that I have in the past 3 days and only use 2 toilets. ones at Nandos the other at weatherspoons and obviously the one where i'm staying... That's a mighty fine accomplishment if you ask me really.

For some reason i can't upload the 3rd toilet lol, will simply add to next post

Off to meet fellow smellybums!

Been a rough past few days about someone who has always been there for me from the start of my IBD battle and it really rocked me to the core. Happily she is doing a bit better and things are looking positive so now I can be overly joyed about my trip in the next few hours to meet persons with IBD in the UK!
Spending my last hours here at the beach and enjoying the warmth as I am leaving the heat for the cold. Interestingly the weather affects us all differently, most people I have spoken to have flares in the winter and feel fine in the summer. While others like me flare in the heat but are fine in the winter so I'm looking forward to those cramp free moments.

That being said, one of my main concerns for this 11 hour 5 minute trip is not making it in time to the bathroom. We all have had the luxury of soiling our undies in public, whether its because we are stuck in traffic and can't get to a toilet in time or the urgency is so severe you are only a few paces from the toilet that you simply couldn't make in time. Instant depression sinks in for me every time that I don't make it to the toilet. I hit rock bottom emotionally as there is no worse feeling for me, the shame, embarassment and internal anguish is horrifying. The limited amount of toilets on the plane vs the amount of people who are on the flight and the line can make a massive difference. I once had to be pacing the aisle and have the flight attendant offer me a cup and said to me "don't be shy i won't pry" I smiled and said i'm sorry but and held up two fingers and she said you will need a bigger cup and chuckled. (lovely conversations I have with strangers yeah). I'm also terrified of having someone come in soon after I leave as its a confined space and lets face it, no matter how much air freshner or cologne you spray, you can't shake that guilty feeling u left a stinker in the crapper unless if its someone who has been annoying you then yes by all means come in quickly!

Always being prepared is key. Lets face it... accidents is a part of life with IBD. We always have a go bag for just such occasions usually with toilet paper, baby wipes, change of undies change of shorts or pants.Give or take a few more items depending on your sex and personal preference. I love cargo pants for just such occasions; I don't have to carry about a back pack everywhere that I go. Simply put the essentials in my side pockets and hope it doesn't soil my pants and just my undies (so yes it's wiser to have a bag, I just like moving light) I just hate it when some observant person notices the change of pants...as a result I may have a few duplicate shorts lol.

I'm simply buzzing with excitement to finally meet other persons from the IBD community. It feels like I am being reunited with my lost family! Can't wait to share the 50 toilets of Great Britain pics up and some of their amazing stories!!! Finally people who truly get me and go through the same shit(pun intended) that i go through!!!

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!