Voices of IBD (9) - Sarah's Story

Welcome to PART 9 of the Inflammatory Bowel Disease series, where we talk to people from all walks of life with this condition; to give everyone a platform to share their story, and help to raise awareness.

This week we talk to Sarah about her battle with Crohn’s Disease

What is your name and age?

Hi, I am Sarah. I’m 45.

What is your occupation?

I haven't been able to work for 10 years due to Crohn's Disease and a few other issues. I used to work in Social Housing and my last role was an Income Manager.

What form of IBD have you got?

Crohn's Disease

How old were you when you were diagnosed?

I was diagnosed with Crohn's when I was 18 after many years of being intermittently ill.

About the disease...
What were your main symptoms that led to your diagnosis?

Severe mouth ulceration in my mouth and in the cheek mucosa. Pain and discomfort in my stomach and weight loss. It took several years for a diagnosis and several doctors I saw thought I was anorexic and did try and get me sectioned to force feed me. The Gastro consultant I finally saw for diagnosis was rude and had the attitude 'I know best'.

What support did you get during and after your diagnosis?

At that time there was no support or specialist nurses like I have now.

Do you take medication, if so, what?

I take Azathioprine with Allopurinol and Stelera

What are your experiences with hospitals? Have you had many stays in hospital or colonoscopies? Do you have an IBD nurse?

I am lucky I have a great team in Birmingham and have always supported me on admission. I have had many stays (can't remember!), yearly scopes and a great team of IBD nurses. I am on a very strict diet as foods can make things worse. But otherwise, I have no real idea. My Crohn's is not well managed.

What seems to affect your IBD the most? What triggers it?

I am on a very strict diet as foods can make things worse. But otherwise, I have no real idea.

Do you currently, or have in the past, struggled with mental health? If so, what?

I have depression and anxiety.

Was this because of your IBD, or influenced by your IBD or vice versa?

My disease is definitely a contributing factor. I have been taking medication for this since 2006.

Do you feel like you get the right support?

I don't really get any support, except family and close friends. My Partner and cats keep me (mostly) sane.

How do you cope?
What is your go-to routine for when you are flaring?

This is a difficult question to answer, I just get on with it. I like to read when I have the attention levels to do that as I have chronic fatigue. Lots of crap American TV shows! I never leave home without a change of clothes and I have to prepare a few days in advance to go out, to try and minimise the possibility of accidents.

What advice would you give to someone who may think they are experiencing early signs?

If someone was worried they may have IBD I would tell them to keep a food and toilet diary and record the colour of blood etc and anything else that may have changed. Take this to your GP and be persistent. Ask questions, do proper research. Be honest with your family and friends about the impact IBD has. It takes a while for people to understand, especially if you look OK on the outside

If there is one thing that keeps you motivated and focused through it all, what would that be?

I hope to at some point be able to return to work and have always worked towards that and my Mum was a great inspiration as she was severely disabled with Multiple Sclerosis and always had a smile on her face.

What is your favourite quote?

'Don't let the bastards grind you down'

'Don't fake with being OK. You only hurt yourself. Be real with what you are going through, just don't let it consume you'

Thank you Sarah for sharing your story here on BecxBlogs. If you are affected by Crohn's or Colitis; please go to the Crohn's & Colitis UK website for further support and information.

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