World IBD Day | My Normal Living with IBD
Choo Choo all aboard. Today is World IBD Day. This is something that is close to my heart and a day I have celebrated for nearly 20 years. A little insight into me: I am 34 years old, on the outside with clothes and makeup on. I look like any normal 34-year-old mum of one that seems pretty cheery and happy and doesn’t have anything to complain about. I look like I have my life together and from most outward appearances I look like I function with normal day to day life.
If I was tell you if you took my clothes off and I stood there as nature intended, I have an abdomen covered in scars from under my breasts down to my pubic bone I have a long scar that is pretty wide due to the multiple surgeries I have had along that incision line, I also have a long scar hip to hip, 6 surgical drain removal scars and a cute little rosebud on the left side of my stomach that is usually covered with a stoma bag to catch my faecal matter as I no longer go to the toilet like you.
Outside appearances can be deceiving, From the way I dress to the way I act is all a mask to cover up the fact I have been chronically ill for more than half my life and that if you were to turn me inside out I wouldn’t look like the healthy woman that stands in front of those who have no idea.
This is my normal, this is my life, this is occasionally my burden to bear.
If I squint, squeeze my eyes closed and try to remember myself prior to this illness I honestly can’t remember what life was like. My teenage years all seem pretty much a blur. I was diagnosed with Crohn’s disease in December of 2003, 3 months after my 18th birthday.
I spent that New years eve and 2 weeks following spent on a GI ward thinking my life had ended. Being 18 years old I couldn’t see further than my next payday or night out with friends. I thought, why me? What did I do wrong to catch this? Why did it choose to ruin my then Idyllic little life?
With hindsight, I would have told myself to pull myself together and to stop moaning. I was discharged from hospital, regular hospital appointments, change of medications, biological treatments and invasive tests never got my illness under control and my fistula wouldn’t heal. Due to the severity of my illness surgical intervention was deemed too perilous so I continued with life, work and learning how to be an adult whilst navigating the many hospital admissions due to relapse of flare-ups.
In 2008 after many drug treatment mishaps and failures they started me on Infliximab, at the time this was like a miracle cure, my Crohn’s within 6 months put my illness into remission and my fistula was less active. On New Years Eve 2008 I found out I was pregnant, It was quite an end to that year, an illness under control for the first time in 6 years and a new baby due in September of 2009.
I had a normal pregnancy, I was healthy, My fistula was behaving and then bam, 26 weeks I was again admitted due to a flare, I spent a month in the hospital due to both my weight and the developing babies weight being too low. I was advised I may need induction at 36 weeks due to Crohn’s complications.
I had an emergency C-section with my daughter as she was too cosy and wanted to stay inside.
Unfortunately due to surgical and Crohn’s complications my bowel and fistula perforated and left me at death’s door for 3 weeks and in hospital for 3 months. I was released on Christmas Eve with Maisie back home. My stoma life journey started in 2009 as this was at the time the only way to save my life.
My illness was under control until my reversal in 2012. Another 4 years of trying to get things under control to no avail. I begged to see the surgeon and in 2016 Bertha mark one was formed.
In 2018 Bertha mark 2 came to be and I had my rancid large bowel removed and anus sewn closed. I thought having this surgery would basically cure my ails as that was always the part that never played ball. In March of this year, I have had confirmation my Crohn’s is back to play and in a flare. Due to the UK lockdown and Coronavirus, I am staying home and doing my best to manage with the flare between my GP and consultant.
“Strong is fighting! It’s hard and it’s painful, and it’s every day”
This quote was what kept my going in the darkest times of my illness, this was my life on and off for about 6 years. After everything that happened with my bowel perforation, I realised that yes I would still be fighting an invisible illness but life is for living, not just existing.
“I live, I breathe, I have friends, life is worth living, sometimes you have to open your eyes and leave the room to live a dream”
Having my daughter made me realize that I may have a chronic illness but life is worth so much more than waiting for the next flare-up or bad moment to happen. You can’t let illness define you, you need to define it. For the best part, I have had some lovely moments and more moments where I am making memories that aren’t tinged with Crohn’s but lit up by adventure, love and a dire sense of humour.
There are times in your life where IBD will occasionally get in the way. It’s more so about adapting your life to cope with the bad circumstances when they arise and navigating through the good with an open mind.
Back in my early days of diagnosis, there wasn’t the awareness or the social media presence that is available today. You can gain advice and friendship within these groups but please be careful and make sure you are living a life that’s based on what’s around you and not living on a computer. I made the mistake when I first set up my accounts that life was based on media presence and slightly forgot to live a normal life. I now have the balance down, as well as making several friendships from my online life, I have maintained my friendships from real life as well.
Life is livable after IBD diagnosis, it may have to be adjusted and tinkered with until you find the right balance for you.
Many thanks for reading
Louise, Crohnie established in 2003 Xx ibd