My sister’s Crohn’s Disease story

Life can hit you when you least expect it, and at the age of 19, my sister, Rosemarie found this out for herself.

Diagnosed at the age 19, after a year of testing, Rosemarie found out she had Crohn’s Disease. After being referred to a consultant/specialist, she was explained to what Crohn’s Disease was and the treatment she needed.

None of my family have experience of Crohn’s Disease and have never heard of it, so this was a real learning curve for my family, and as I would have been either 6 or 7, I was unaware of what was happening.

Going through a trial and error, finding the best treatment and medication to battle the invisible disease, questions were asked about her severe weight loss, and how this all occurred. Medical professionals thought she was anaoerxic and starving herself.

She was told surgery would be needed, but nothing was scheduled, until she was rushed in for an emergency operation. This was July 2000.

After being in hospital for 2 weeks, she told doctors her stomach felt swollen and hard and ‘not normal’, and despite this, she was still discharged back to the family home. It was a Friday she was discharged and by Sunday, she was back in hospital after complications. All Rosemarie can remember was being in pain, rushing back in forth to the toilet and couldn’t relieve herself, felt hot, and next, whilst sitting on the sofa, she was sick and then, remembers being in and out of consciousness in the ambulance, before waking up in hospital.

Doctors mentioned she needed an injection and a further operation saw Rosemarie fitted with a Ileostomy bag. She also realised the complications caused a Stroke, paralysing her down on both sides, but mainly on her left side.

Staying in hospital for about 3 months, and then for the next 3 months, she was a resident in Victoria House, a rehabilitation centre, formerly based near the local hospital.

Wanting to come home for Christmas, a Occupational Therapist assessed the family home to ensure Rosemarie would be in a safe environment, as she started to adjust to life as a wheelchair user.

I remember our dining room being converted into Rosemarie’s bedroom, whilst she was learning to walk again and a rail was fitted so Rosemarie could go up and down our stairs. Our bathroom was also adapted.

She was only meant to have her Ileostomy bag for 3 months, but as precaution, she had it for a year, whilst she was recovering from her Stroke.

A scheduled appointment was made, and surgery saw the Ileostomy bag removed.

There’s a lot more to this story, but Rosemarie and I wanted to keep this short and sweet, and to give you the basic understanding of how her Crohn’s Disease journey started, and how a stroke added to the sudden life change.

This was the first time Rosemarie and I have properly spoken to one another about this, and with my 21 marathons in 21 days in a wheelchair fundraiser only 11 days away, I’ll be sharing a few more stories about how my sister’s story has impacted my life.

As I am fundraising in aid of Crohn’s and Colitis UK, if you’d like to donate, you can do so by clicking below…

DONATE HERE

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