So it’s been nearly a year of adapting to the new world in which we live, with everyday throwing up new challenges and obstacles. Very much like living with a chronic illness, the world is learning to adapt and adjust their lives due to restrictions. Our hope for this year is to include more of your stories of living with IBD, and allow you to share your personal stories in a candid way. We kick off 2021 with a chat with Sarah Donnelly, Crohn’s disease battler and author of Crohn-ly Get Better.
Hi Sarah, thanks for allowing us to get in touch. We feel it is important to be an all inclusive platform, to allow our loyal followers to share their stories. So welcome and thanks again…
Where are you located?
Belfast, Northern Ireland
What can you see from the window?
A view of my street, with some more houses/flats. Not the prettiest! Ha-ha.
Life growing up/Education?
I grew up in Belfast with my parents, sister and pet dog. I went to Lagan College for secondary school, which is Northern Ireland's first planned integrated school and still one of the few integrated schools. I then went to Queen's university to study Law.
How would you describe your day daily routine? Are you working/studying from home?
I'm currently working from home and can go into the office some days if really needed. I am a paralegal, so some tasks I need to go into the office for. I much prefer working from home as it has meant I have more time for exercise and feel I can get more done.
IBD Life -
How old were you when were you diagnosed with IBD?
I was 24, but had symptoms from about 19/20.
What were your first thoughts when the diagnosis was given?
I was initially delighted! The nurses in the recovery ward after the colonoscopy thought there was something wrong with me ha-ha, but I had been suffering for a long time and had become very sick to the point where I could barely walk by the time I was diagnosed, so was just so glad to finally have an answer after years of wrong tests or being panned off based on looking "young and healthy".
What medication have you been taking since diagnosis?
I've tried steroids, Infliximab, Vedolizumab and Cholestagel. Vedolizumab is what thankfully got me into remission though.
Have you had to undergo any surgeries for your condition?
Yes I've had 3, all for abscess/fistula. First it was drained but then it came back, so had a seton stitch put in for the second op. But it was inserted too tightly and had to have the third surgery a few days later as I had nerve damage, hadn’t been able to sleep since the previous op with the pain and had went infected unfortunately.
Do you have a good designated IBD team at your hospital?
Yes thankfully have a really good team but they are super busy and very underfunded. Would be great if all hospitals had the funds necessary one day!
What type of adjustments have you had to make to your diet since being diagnosed?
I find diet quite trial and error as some days I could eat something with no effect then another day it could really annoy me. During the first lockdown I reintegrated fibre back into my diet after having a low residue one for a few years and has mostly been fine. Honestly though I'm terrible for actually staying away from foods if I love them even if suffer afterwards! The only exception is caffeine; I love coffee but have to be very careful with it so drink a coffee alternative now.
Is there anything you have adapted to you routine to cope with your condition?
I find even with being in remission, mornings are still the most difficult part of the day and still need the toilet a good few times in the morning, so if I have to go somewhere, I always make sure I'm up a few hours earlier to prepare myself.
Health and fitness - is there any physical activities you take part in that you feel help your symptoms?
I really enjoy Yoga and Pilates but I find exercise makes me need the toilet more with all the movement. But it's not something that would stop me from doing what I love; the physical and mental benefits from doing exercise you enjoy outweigh the negatives. I definitely have more energy and much physically fitter which is all round great.
How does it affect your family and friends? Are you well supported?
My mum and dad are super supportive and always there if I need anything or need taken to hospital appointment, but now I'm a lot better I tend not to annoy them and just deal with it all myself. My friends are great too, they'll ask any questions they have and know they'll get a brutally honest answer to the point they might regret asking ha-ha. But I'm trying to be as honest as possible about what it's like living with IBD as those I'm not as close to, I definitely play down how it affects me and the standard, "I'm fine" response comes out.
Has social media been a good thing or bad thing for you dealing with your condition?
I've found social media really great for raising awareness and seeing other accounts doing the same and getting to learn about how other people are affected but with the same condition. I would like to see more on fistulas/abscesses though as I don’t think there's as much online about them and I was really struggling for answers or people who had the same when diagnosed with these.
Do you have any advice for someone who has recently been diagnosed with IBD?
It will get better. It's such a horrible thing to hear especially when you don’t believe it yourself and remission is nowhere in sight, but one day you will start getting better and you'll be a stronger person for it.
How have you dealt with the Covid19 situation? Has it impacted on your IBD?
I keep joking and saying because I was sick and inside most of 2018 that it was my practice run for 2020 ha-ha. But at the start of the pandemic, the stress and fear of COVID sent me into a mini flare, but thankfully calmed down again after my next infusion. I've tried to stay as active as possible and fill my days out to prevent boredom as much as possible. I haven't seen my consultant or surgeon in well over a year now due to COVID but I'm very lucky I have not really needed to or any issues have subsided.
Being an author -
Thanks to Instagram we found your account, and see you've published a book called “Crohn-ly Get Better". Can you tell us more about it?
“Crohn-ly Get Better” is an extremely candid, humorous account of what living with IBD is like. From describing the medical tests and surgeries, to the impact on our mental/physical health, talking about taboos and hospital stays, and the impact of a chronic illness on relationships with others. As I go through my journey, many other areas for change are highlighted, especially surrounding the mental health effects of chronic illness on young people and how we are left with no support when being diagnosed with a life-long incurable condition. Also the effect that medications and surgeries can have on your body image and the impact a chronic illness can have on relationships with others, and the regular feelings of alienation. The inadequate support of the government for chronic illness suffers is also commented on, as most struggle to get any form of financial support when unwell and things are out of their control.
25% of all sales are being donated to Crohn’s and Colitis UK in a bid to raise awareness and money for charity in the hope there is one day a cure for IBD.
Is the passion for writing a hobby, or career path?
I would absolutely love it to be a career path one day, I work as a paralegal at the moment and my heart’s never been in it. I really enjoyed the whole process of writing and never once felt like "work".
Was the process therapeutic? Or did writing you story affect your Crohn’s?
I found it really therapeutic; when I got to some stages that I knew would be hard to relive I put it off for ages. But whenever I got to actually writing it, it wasn't as bad as I thought it would be as I found it just came out. I would really recommend it to anyone who is struggling. I found something about writing your problems down makes them seem smaller.
Do you have any assignments or projects coming up in the future?
I am currently toying with the idea of writing a new book, but it would be fiction this time and very different! I refer to the idea of it in my book "Crohn-ly Get Better" as a joke but thinking of acting on it now.
Where can our followers find your book?
You can find the book here...
Thanks so much Sarah, all the best for 2021!!
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Words: Sarah Donnelly, Matt Strutt
Images: Sarah Donnelly
Contributors: André Leitão
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