Crohn’s & Colitis Awareness Week
This week is Crohn’s and Ulcerative colitis awareness week. This is something that is close to my heart and a time I have celebrated for nearly 20 years. A little insight to me: I am 35 years old, on the outside with clothes and makeup on, I look like any normal 35-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 fecal 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.
Symptoms of Crohn’s disease
Not everyone will have the same set of symptoms, but a cumulative collection can aid in a prompt diagnosis and a treatment plan to help get your illness into remission.
The main symptoms are:
- – Diarrhoea
- – Stomach aches and cramps
- – Blood in your poo
- – Tiredness (fatigue)
- – Weight loss
Additional symptoms may include:
- – Cellulitis
- – Skin rashes
- – Mouth ulcers
- – Sores on the body
- – Fistula formation
- – Recurrent eye infections (Uveitis or Iritis)
Why I work at raising awareness
I work hard at raising awareness as, based on my research, roughly 33,000 people per year are diagnosed with Crohn’s disease. As an illness, it is currently incurable and maintained with medications. There is a fair amount of research in trying to find a cure or create medications specifically to treat the illness.
It is also an invisible illness which can lead to ignorance and people not understanding as they can’t see what is going on inside. For those that are feeling alone and newly diagnosed, a well established social media account or Facebook groups can help that person in learning and understanding how to navigate their new normal.
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 Year’s 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 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 flare. Due to the UK lockdown and corona 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.
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
This blog post is intended to give advice to ostomates. The information given is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine or if you are experiencing any health issues.