Voices of IBD (15) - Rachael's Story

Welcome to PART 15 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 Rachael about her battle with Crohn’s Colitis.

What is your name and age?

Rachael, 28 years old.

What is your occupation?

Teaching Assistant.

What form of IBD have you got?

I have Crohn’s Colitis, Peri-Anal Crohn’s.

How old were you when you were diagnosed?

I was diagnosed when I was 13.

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

It’s hard to think back to then, but I had lost a lot of weight and slept pretty much all the time.

How did you feel when you got diagnosed?

I was confused when I was first diagnosed. No one had heard of the disease, so it was all new.

What support did you get during and after your diagnosis?

The support I received was fantastic. The Paediatric team were amazing, and there all the time. So are the team I have now, going above and beyond in helping me.

Do you take medication , if so, what?

I take two lots of medication – Humira and Azathioprine.

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

My hospital has always been fantastic, I couldn’t fault them. I’ve been quite lucky. I’ve not had many stays in hospital – once a year maybe. Which I think is quite lucky compared to most people! So far, I’ve had a Sigmoidoscopy each year due to my Crohn’s and before that I had a Colonoscopy. I hate the prep, so I bargain with my surgeon to not have them. I have an IBD nurse, who is amazing. In fact, all three, with Jo being the main one, are great, knowledgeable and caring people. They speed things up, and see me in clinic.

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

I would have to say that stress can aggravate the symptoms, which can cause me more problems.

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

I can’t say that I’ve been diagnosed with any mental health issues, but I can say that emotionally – it’s hard to get around. Especially for me as I’ve been told in the past and even now that I need a stoma bag. I’ve had days off because I cant cope very well with it. I think you go through all the emotions with it, especially if your medications don’t work either.

Do you get support for your mental health?

My IBD nurse and GP were there for me when I was having a tough time. My friends where there and we would more cry than talk about it.

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

I cope with it by keeping busy, colouring all things calming, and even just lying in my room. Sometimes I go to bed early, just to catch up on sleep.

What lifestyle/diet/changes have you made to cope with your IBD?

I think I was lucky as I didn’t have to make many changes to my lifestyle or diet. I think it’s because I’ve always been a fussy eater too. I’ve had to cope with a stoma, which changed a few things - like not being able to lift things.

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

I would definitely say go get checked out if you have symptoms. I was quite young when I was diagnosed. It was my aunt and mum that noticed I’d lost weight when I got poorly. I know they were quite persistent too.

What advice would you give to the friends and family of those with IBD?

Take it easy on them and let them rest. Don’t go on at them. I know that’s the hardest bit!

If there is one thing that keeps you motivated and focused through it all, what would that be?
The thing that keeps me motivated is my job. I studied to be in the job I do and I love it. I work with children and watching them grow takes the pain of the Crohn’s away. Because I’m so busy I’m like a flamingo really. Burying my head in the sand and getting on with it. I like to be busy so it helps.

What is your favourite quote?

I have loads!

“What goes around comes around”

“Ironing boards are like surf boards that give up on their dreams. Don’t be an ironing board!”

“If you get tired, learn to rest not quit”.

Thank you Rachael 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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