Voices of IBD (7) - Lauren's Story.

Welcome to PART 7 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 Lauren about her battle with Ulcerative Colitis, Type 1 Diabetes, Psoriasis and Psoriatic Arthritis. 

What is your name and age?

Hi there, my name is Lauren Cutler and I'm 36 years old. I live in Cheshire with my husband Steven, son Josh aged 12, my beautiful cat Willow, and gorgeous daft puppy Clara! 

What is your occupation?

I have been a primary school teacher for 13 years, which I sadly had to give up (I'll come to that later!) I am now an artist in residence, my dream job! I also create bespoke art pieces.

What form of IBD have you got?

I have 4 chronic conditions; Ulcerative Colitis, Type 1 Diabetes, Severe Psoriasis and Psoriatic Arthritis.

How old were you when you were diagnosed?

I was 11 when I was diagnosed with UC. My dad had it, so luckily my parents recognised the signs and I was diagnosed quickly. Psoriasis and diabetes were within 6 months of each other, aged 19, and arthritis in the last few year, around 34!

About the disease...

I feel like it's been part of my life for as long as I can remember. I was constantly in and out of hospital from ages 12-15. It completely changed and moulded my teenage years and I felt like I missed out on a lot. Friends got bored of coming around, and I was very isolated. It's not the easiest disease to discuss, is it? I didn't have any flare ups from 16-24 but then had a very toxic and abusive relationship which resulted in a bad flare for a few years. In that time, I also had my beloved son, who is the best thing that's ever happened. On my darkest days, he makes me feel like the best mum in the world! I'm very lucky to have him! 

I had another flare around 28, again last year at 34, and now, what I deem my worst one aged 36. I'm on the loo 25+ times a day, bleeding, constant fatigue and pain. My other diseases are all active too, maybe that's why I feel so rotten! I do try and stay positive, but also feel very guilty that I don't have the energy to do much with my son and husband. It's been stressful on our relationship too. He hates seeing me ill, and it gets him down that he can't physically help, although emotionally he can. Friends have stopped trying to meet up to, not all of them, but so called best friends, get annoyed when I have to cancel because I'm curled up in pain on the bathroom floor!

What were your main symptoms that led to your diagnosis?

As an 11 year old, I was bleeding when I went for a poo. My mum noticed it and took me to the GP. As I said, my symptoms were diagnosed quickly due to my dad having previously had it. 

How did you feel when you got diagnosed?

I don't really remember. I was relieved that I wasn't dying!! I think being so young, I didn't have the same fears and anxieties about diagnoses and treatment as an adult. Having a colonoscopy under a general anaesthetic became normal.

What support did you get during and after your diagnosis?

My paediatric consultant was fabulous, and really up to date with treatments. The whole team were! I now look back and wish my parents had more support, as they didn't have any!

Do you take medication , if so, what?

I was pumped full of steroids and steroid enemas. At one point, aged 14, I was on 60mg! It was a last resort before surgery, which luckily worked!! I remember my mum having to warm up the enemas before putting a big tube up my bum each night! I then had to have my bed tilted to ensure it got to the right place on my colon! 

I take Octasa too, as well as Insulin, and a treatment called Sekulimibad for my Psoriasis!

What are your experiences with hospitals?

I had a long stay in hospital, from aged 12-15. They struggled to control my UC, so pumped me full of steroids. The steroids then affected my bones and my knee started to disintegrate! I ended up having a long and painful operation, and I was unable to put my leg down at all for 6 months!

Have you had many stays in hospital, or colonoscopies? Do you have an IBD nurse?

I've had around 10 colonoscopies, and despite being referred to an IBD nurse 8 months ago, I've still not heard anything! As I had no flares for such a long time, and I moved to a different area, I had to be re-referred by my GP. However, they forgot, so a consultant at my hospital for Psoriasis did me a referral. Again, the wait was 6 months, so my parents paid to see him privately. He was great, and my flare calmed down. His secretary then left, and lost loads of notes; so again, I had to wait ages to see him. This was despite almost daily calls to his new secretary! We know the system and sadly, phoning to see doctors becomes part of your daily life!! I will keep pushing for an IBD nurse, as on days like today where I am lay in bed in agony, bleeding and pooing constantly, I would love to call for advice, rather than the jackpot of GP!

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

Stress is definitely a factor for me! I HATED high school, and 4 months after starting, my symptoms of UC started. Again, my toxic relationship was a trigger, losing my job etc. It seems to be fine at the time of the stress, then 3/4 months after, the flares begin!

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

This has been a massive part of my life, and yet one I've never had the courage to discuss, so bear with me! As a teenager, the steroids affected my appearance, weight gain, hair loss etc. It massively changed my confidence level. When I got better, I lost weight and got lots of compliments. It became something I could control, so I did. I would eat, then split my food out into a napkin. I lost a lot of weight and was around 5 stone. I got no support, my parents knew what was happening, but didn't know what to do, so did nothing. This has played a huge part of my life and still does. 

On a daily basis, I evaluate what I've eaten, and constantly beat myself up if I eat something I shouldn't! I've got better over the years, but I feel like counselling would help. I'm not underweight now, so I don't think I'd get the support. I was also hospitalised as due to medication, I couldn't walk properly. I don't really remember much about that time. I saw a psychologist who asked me if I was jealous of my sister! That's about it! I think now, I would have had more support mentally, but 25 years ago it was even more of a taboo subject! I've recently turned a corner with my psoriasis and now don't cover up when I go out. This was a massive step, and one I'm glad I took. I thought people saw psoriasis when they looked at me, turns out, most were shocked as they had no idea! I find being open and honest with friends and strangers helps a lot. 

I'd rather people asked about my conditions, rather than whispered! After feeling so positive, this recent flare had really affected my mental health. I have no energy at all and feel like I'm "wasting my life". I am scared to leave the house as I often poo myself. I don't sleep, then I'm even more exhausted. I don't know if the lack of sleep is related to depression too? I've decided to speak to my GP tomorrow, so watch this space! 

Do you get support and medication for your mental health?

I'm hoping my GP will give me some much needed support tomorrow!

Do you feel like you get the right support?

My husband, son, parents and a few friends are very supportive. My sister never asks how I am and implied the other day that I was making up my toilet trips!!!

How do you cope?

I have good and bad days, coping is definitely dependent on how I'm feeling physically and mentally. After losing my job due to severe psoriasis, I became very down. My nurse suggested I get a hobby. I loved art, and started painting again. This turned a corner and I started selling my work! I am now an Artist in Residence, which I love. Art has definitely been a form of therapy 

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

Rest, hot water bottle, pain relief, bland diet.

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

My favourite thing to do is coffee dates with my son! I love to cook, bake and paint! (Not all at once!) 

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

I have been a vegetarian since I was 7, and I try to avoid processed foods. It's difficult when I'm feeling so poorly, to cook. If I get a take away due to it being an easy option, I know I'll suffer the next day!

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

You know your body! Keep going back to your GP, take someone with you who can support you when asking for referrals. Also, ask that person to take notes of what they say, as it's easy to forget! Take a list of questions that you want to ask, again, as there's always something you remember you've forgotten to ask on the way home! 

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

Please remember, we are not cancelling plans because we want to, it's because we feel too ill! Little things go a long way, washing up, tidying etc, help massively. It's one less thing to think about. We also empathise how hard it is for you to see us like this. I think it's important for family to talk to someone, either a friend or professional who can support YOU with how to cope. It's taken a lot of persuasion, but my husband is finally getting support from his GP. 

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

That I won't always be like this. I've got through it before, and I will again! I find motivational quotes help a lot too! 

What is your favourite quote?

I have three! One is from my beloved Doctor Who 

"We are all stories in the end, so let's make it a good one!" 

I've definitely lived a good story!! The second one is linked to my condition;

"I smile and act like nothing is wrong sometimes, it's called dealing with shit and staying strong!" 

Lastly from a song from Matilda the Musical; 

"Sometimes you have to be a little bit naughty!"

Thank you Lauren 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 Lauren over on her Facebook Page for her brilliant art work!

Or contact her directly on her email

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