Voices of IBD (17) - Erica's Story

Welcome to PART 17 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 Erica about her battle with Crohn's Disease. 

What is your name and age? 

Erica Knight, aged 40

What is your occupation? 

Stay at home mum, apprentice blogger

What form of IBD have you got?

Crohn’s Disease

How old were you when you were diagnosed? 

35

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

I’d suffered from misdiagnosed IBS since my teens. Stomach pain, loose stools, passing blood etc for years. Immediately prior to diagnosis, I had flu-like symptoms, high temperature and awful abdominal pain which the GP was convinced was appendicitis. I was sent to A&E where they carried out a CT scan prior to taking me to have it removed – which was a bit of luck!

How did you feel when you got diagnosed?

I was given the diagnosis by a junior doctor at about 2am in the surgical assessment unit. “Good news it’s not your appendix. It does look like Crohn’s though. I don’t know much about it so you’ll have to wait until the morning for the consultant”.
The only person I knew with Crohn’s was bald and skinny. I was neither. I Googled it and scared myself stupid

What support did you get during and after your diagnosis?

At the time, not a great deal. I had t wait weeks for an appointment. They didn’t have IBD nurses at my hospital at that time. Now they do and they are fab

Do you take medication, if so, what?

Yes, I tried Pentasa but it was too late and I had to have a bowel resection. My most recent flare has presented with active Crohn’s in my colon and a fistula. I am on Infliximab infusions every 8 weeks and Mercaptopurine daily. Vitamin B12 injections every 3 months

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

Following my initial colonoscopy to confirm Crohn’s I have had 8 operations. The first being the bowel resection, unfortunately, that went wrong and I had an anastomotic leak which nearly killed me. I had an emergency laparoscopy and ended up with a stoma, mucous fistula and a stint in intensive care. That stay was 4 weeks in total. I had the stoma reversed 7 months later, I was in for 4 to 5 days. I developed an incisional hernia so that was operated on, it was a bit of a mess of adhesions and I was in 4 to 5 days again. Unfortunately, the mesh used to repair my hernia became infected so I had to have another emergency operation to remove it. That was fun.
I then fell pregnant and had a period of being well before having another flare after my baby was born. I had a fistula and had to have 3 operations on that before I could go on the current medication.

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

Both big flares were following pregnancies but that may have been a coincidence. I would say being run down or stressed makes it worse. I don’t have trigger foods, unlike some people.

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

I’ve struggled with depression since my teens. I try to remain positive but obviously having this amount of ill health affects me. Especially the side effects, needing the loo, bowel incontinence etc.

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

I think they go hand in hand. It causes depression and in turn, the depression can make the IBD worse.

Do you get support for your mental health?

I have had counselling but not specifically Crohn’s related. I’ve been on anti-depressants in the past but not at the moment.

Do you feel like you get the right support?


Probably not, I need to come to terms with it properly at some point. Right now I feel like I am winging it.

How do you cope?

Having two young sons I try to just “get on with it”. I can’t stop or spend too long worrying about it, I don’t have the time or energy.

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

I now call my IBD nurse. I am in a constant flare at the moment, it’s just being managed.

What do you do to give yourself a break or relax?

Sleep!

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

I’ve been a vegetarian since I was a teenager. I haven’t really changed my lifestyle much. I am not as active as I’d like due to the fistula

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

Go to your GP and demand to be tested. I wish I had made more of a fuss rather than accepting that it was “stress-related IBS”. It might have prevented me from needing the operations, at least at that time

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

Be supportive, understand “bad days”, be there for them. There are times we’d love to go out but we just can’t – we don’t want to let people down. Turn up with some chocolate and put the kettle on and have a good giggle instead. Visit us in hospital – we appreciate it

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

My family, my friends. I write about Crohn’s on my own blog and Facebook page. I get some lovely comments from people. I am open about it and have a laugh about it. It’s what keeps me going

What is your favourite quote?

"It is what it is"


Not because I’ve given up, but because life is what you make of it. You can’t change what is thrown at you but you can change how it affects your future.

Thank you 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.

You can find Erica on her blog at:

and her social media:
Facebook
Instagram
Twitter

No comments:

Post a Comment