Crohn’s & Colitis Week 1-7 December 2019
Crohn’s and Colitis are invisible illnesses that mainly affects the digestive system but can also cause fatigue and painful joints. They are forms of inflammatory bowel disease, that currently don’t have a cure.
Around 300,000 in the UK are thought to be living with these conditions but because of the stigma of it being a bowel disease, it is thought that the real number could be nearly double and that many suffer in silence.
This is why, every year, during the first week of December Crohn’s and Colitis UK work to raise awareness and funds towards these conditions to achieve a better quality of life for those affected, improve services or aid research into treatments.
This Friday you can also ‘Go Purple’ to help raise awareness of Crohn’s Disease and Ulcerative Colitis and help start the conversation about these conditions.
My Ulcerative Colitis Story – Kevin Baker
Kevin Baker, from Rugeley, Staffordshire shares his story about his diagnosis of Ulcerative Colitis to raise awareness for Crohn’s and Colitis Week.
“I was diagnosed with Ulcerative Colitis in the late ’90s, which was initially controlled by medication. A major flare up in the summer of 2000 led to a two week stay in hospital; a flare up in 2003 had a similar outcome. Following on from this, I had a ten year period where I was in remission with the exception of the occasional minor flare up.
From mid 2013, my health began to deteriorate; a dose of shingles adding to the problems and again I found myself in hospital for a week in December – doing Christmas shopping via the internet from my hospital bed was an experience!
The following year I had another couple of days in hospital in August, then a further week in September before being discharged ahead of starting a course of Infliximab infusions in the December, which initially proved a success.
Unfortunately, funding issues led to a delay in my infusions becoming a permanent fixture, which seemed to cause issues and my health was again poor. Eventually, after an emergency appointment with my consultant due to some raised markers in my bloods, I was admitted to hospital on 9 July for a total colectomy.
The next six to seven weeks are a bit of a blur – my colon burst during the operation, leading to two further emergency operations to “wash me out”, a six week stay in ITU, contracting Sepsis due to the bursting of the colon, and a week in a coma. At this point I had three very close calls as I battled the Sepsis, a temperature of 41 degrees, dangerously low blood pressure and a heart rate fluctuating between around 30 beats per minute and 200 beats per minute.
Not sure how, but I eventually pulled through and got back onto a normal ward. After seven more weeks, learning to walk, feed and wash myself again, I finally made it home in late September. Tragically, during this period I lost my Father who passed away after developing complications (including Sepsis) after a bout of pneumonia.
I returned to work in February 2016, firstly on a phased return and then back to full time hours. Since then, I’ve had a minimal number of days off work sick (having spent most of the previous two years off ill!). In fact, work has gone from strength to strength and earlier this year I began an exciting job at a new company in the same trade, which is both challenging and rewarding.”
“Nowadays, I’ve returned to a pretty much “normal“ life. I’m able to go out socially, be it for a day out, a meal or a few drinks and not have to worry, where the nearest toilet is. I’ve always enjoyed playing and watching sports; since my surgery I’ve got back to playing cricket to the same level as before (having just completed a third full season), I’ve been lucky enough to play football twice on the pitch at Molineux, home of my lifelong team Wolverhampton Wanderers – and have travelled to many away games as well as watching just about every home game in this period. I’ve been to many other major sporting events, including NFL, England games and a world championship boxing fight at Wembley; various concerts including the Foo Fighters at the Olympic Stadium, and I’m able to go for walks in the country, away on holiday, work in the garden and play golf – all things that had been at best very difficult to do before.
There are still bad days, and there probably always will be – fatigue, the battle to stay properly hydrated, doubts about “body image” and the anxiety that I’ve suffered very badly with at times to mention but a few things all create their own difficulties. But, one of the coping mechanisms I use is to think of the opportunities that I have now that I wouldn’t have had without my stoma.
Firstly, and obviously most importantly I’m still alive…. I’ve played county disability cricket for Shropshire, losing narrowly in the national final in 2018. I’m lucky enough to be an ambassador for Coloplast and have made a video for them about how their products have benefitted me, which was a fantastic experience. Plus, there are many family moments, places visited and memories made, none of which would’ve been possible to experience without my health and recovery.
Family, friends, team mates and colleagues have all been so important to my recovery. Their help, advice and support has been incredible. My partner Abby, son Josh, brother Rob, my Mum and Abby’s son Joe have all been and continue to be incredibly supportive, as have our extended families.
Hopes for the future….to continue to develop, live a healthy life, travel and have lots of different experiences. I fully intend to make the most of my second chance. My advice to anyone going through a similar experience would be to keep fighting, try to stay positive, and to never, ever give up.”
We’d like to thank Kevin for sharing his story. If you’d like to know more about Crohn’s & Colitis Week 2019, visit the website.