In the first our new Blog features, Catherine McEwan Foundation Founder, Derek McEwan shares his experience growing up with his Mum battling severe Crohn’s.
IBD is a battle. It is a battle for the person who suffers every day. It is a battle for the family. It is a battle for the friends. It is a battle for the doctors. It is a battle for the nurses. IBD is a battle.
When I thought about it, my story and many others who have a family member who suffers from IBD is very relevant to the battle. IBD affects every single family member not just the patient. Often the parents, the brothers, the sisters, the friends; their stories are forgotten by everyone except for themselves.
I lived with IBD as a loving son for 16 years. I suppose in many ways I still live with IBD now.
My mum, Catherine was diagnosed at the age of 16 with Crohn’s Disease. I’m told it took some time to actually diagnose her condition, a fact which unfortunately is still common today as patients suffer for years in some cases before a diagnoses. This is often due to poor IBD standards at certain hospitals.
When pregnant with me she was told that it would be a serious health risk to her and should consider not going through with the pregnancy as her ever more severe Crohn’s was likely to cause complications. This was never an option and Catherine went ahead thankfully!
My early memories of my Mum were of her constantly being at the Doctors and being in and out of hospital. That was normal life. I was an expert in waiting rooms and knew staff by first name. I could tell you what health message posters were on the walls of Gartnavel and the Western as well as our local Doctors. How was a 5 year old to know there was nothing normal about this? I’d known it from the day I was born.
Catherine’s Crohns was severe. She had multiple major operations to remove parts of her intestine. Nothing seemed to work and regular flare ups meant more trips to hospital where stays could be for a few days or a couple of weeks.
Very often my mum’s hospital stays were not for surgery but to build her up. Her Crohns had caused her to fall to 6 stone so she required to be fed from a tube to build her up. She ate very, very little and what she did eat she passed very quickly and let’s just say, it wasn’t pretty going to the toilet after her!
I once thought I was to have a new baby brother or sister. Why? I found nappies in the cupboard! It was the only conclusion. I remember how difficult it was for my mum to explain that they were hers and she explained her illness and how these were for adults. The pain, the hospital visits, the constant toilet visits. I can’t imagine how she felt that day but felt proud that I understood more of what was normal in her life, really wasn’t.
As the years went on nothing improved, and the pattern continued. The doctors told her she would require a colostomy bag. My mum refused point blank. What dignity & pride she had would not be taken by this. These days the inspirational Get Your Belly Out Campaign has had IBD sufferers wear their bags as a mark of pride and it is not so much of a taboo subject. Truly incredible!
In an effort to build Catherine up at home she was prescribed drinks called Complan. She hated them and we had a huge stock at home as she just couldn’t take the taste. I tried to sell our surplus Complan to the kids in the street as a “cool” new drink. Needless to say I never sold many and had the odd parent at the door!
Through all these health trials I can honestly say I never heard my mum complain once. She was positive, funny and lived for my brother, Gary and I. All she wanted was the best for her boys.
A real down turn in her on going health occurred when she was diagnosed epileptic. She would have extremely violent fits on a regular basis for the rest of her life. There is no link between Crohns and Epilepsy however the vitamin and nutrition deficiencies due to ill health could be related.
Epileptic fits took a lot out of Catherine as well as her ever increasing arthritis, which is an effect of Crohns Disease. Flare ups of her Crohns resulted in more fits as she felt under greater pressure.
So the pattern continued…
I was now 16 and came home one night to find my mum bent over in mortal agony, standing on a kitchen worktop, hanging a washing. I begged her to let me call a doctor but in true Catherine style she said it was nothing and to go to bed, she had work to do. I woke up at 2am with her heading to the hospital in an ambulance.
She had a serious infection due to her bowel bursting. It was serious but she had been in hospital so many times it was natural to everyone. She goes in, she comes out. This however was different. Air got under the skin and inflated her tiny body and the infection was out of control.
Catherine’s body simply could not cope and at 38 years of age she passed away leaving a loving husband and 2 adoring sons.
Crohns and Colitis is serious. IBD is serious. Together we can make a difference to those who suffer, together we can find a cure.
Together we can make Catherine McEwan and many like her proud……….
Thanks for reading
One Love
Dx