This week I supported Crohn’s & Colitis Awareness Week (Dec 1-7) by joining in the #7DaysofIBD campaign. I posted a photo a day on Facebook showing the daily realities of life with IBD & an Ostomy.
The campaign slogan “EVERY DAY IS DIFFERENT” could not be any more apt. Whether you’re newly diagnosed, in the middle of a flare, in remission, or post ostomy surgery, IBD is such an individual and unpredictable disease. It truly is different every day.
It’s also different for different people when it comes to symptoms, treatments, diet, medications, disease progression, side effects … and the list goes on.
My #7daysofIBD this week were quite different to how my #7daysofIBD would have looked the same time a year ago (when I was on a 10-month world trip)! And they were almost polar opposites to how my IBD looked the years before that, which would have been a month post-surgery 2 years ago, and very sick with active disease the year before that. From year to year, month to month, week to week and even day to day, we have our ups and downs. Our good days, horror days and everything in-between.
Since my ileostomy surgery, I am grateful that I am now in remission and have almost exclusively good days. That’s not to say some days aren’t still better than others, and living with an ostomy can have its challenges from time to time too!
So here is the compilation of my last #7DaysofIBD …
I’ve also included a “FLASHBACK 3 YEARS” comparison moment to show how different IBD can be from year to year (and how far I have come :)).
DAY ONE – 1st of the month means it’s time to put in my order for ostomy supplies. It’s so easy! I just email my order form through, and for a small fee they post it out to me (usually within the week). Thank you Ostomy NSW!
FLASHBACK: I was more likely filling in hospital admission forms for surgery, being admitted for a flare, or day surgery for a colonoscopy. One bonus in having a pan proctocolectomy is I never have to have one of those again!
DAY TWO – Another hot Summers day in Sydney. I love working across the road from the Botanical gardens, and spend most work days walking here during my lunch break. It’s important for everyone, especially ostomates to remember to stay hydrated in this heat.
FLASHBACK: I hardly did any exercise. During a flare I would only go out for walks if I knew the route and exactly where all the toilets were along the way.
DAY THREE – It’s been a few days since I last changed my bag. Time for a nice refreshing shower and fresh ostomy bag.
FLASHBACK: No bag changes 3 years ago, but give me a bag any day over rushing for the bathroom 20+ times a day, sitting in pain on the toilet, or having an accident in public.
DAY FOUR – TGIF! It’s been a long week at work, and I’m pooped! I still find the fatigue gets to me. Can’t wait to hit the hay and have a nice long sleep in tomorrow. Goodnight x
FLASHBACK: I still get tired but it’s not the same kind of exhaustion or to the same extent to what I used to feel. I’ve always loved a good sleep in, even before IBD!
DAY FIVE – time to brave the crowds for some Christmas shopping! And spend some quality time with Mikey!
FLASHBACK: Some days I couldn’t even face going to the supermarket.
DAY SIX – the festive celebrations have begun! Today was our annual Xmas feast get together. Good friends, good food, good wine. We always overindulge and eat way too much! My poor little guy (aka my stoma) must be working overtime.
FLASHBACK: Many days I would be too scared to eat anything, as I knew it would go straight through me. I also spent weeks on a purely liquid diet, and diligently kept a poo and food diary.
DAY SEVEN – I don’t normally work Mondays, so this is going to be a long day! The train commute into the city is much easier and less stressful for me since having an Ostomy though.
FLASHBACK: Forget about using public transport during a flare. Even a 5-minute car trip made me anxious. I went from commuting 5 days a week, working full time, to being hospitalised and not working at all for several months. Since about a year after being diagnosed I have been working part-time. I’ve gone from 3 days / 24 hours a week back to 4 days / 36 hours a week now – but it’s still nice to have Mondays off!
So that’s been my week. How was yours? I hope it was filled with more good days than bad. Whatever the case, it’s important we share the daily realities of life with IBD to raise awareness and strengthen the IBD community. And remember, every day is different. Just because today might have been a challenge doesn’t mean that tomorrow won’t be a wonderful day 🙂
stomalicious 
That’s so nice to see the difference between previous years. You’ve made a scary change seem so much more positive than all the medical books.
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Hi Laura,
What a great post, I love seeing you enjoying the Festive Season, and all that it brings!
When I had my surgery (4 years ago, on November 30) I was so hopeful that I would be well enough to enjoy Christmas, less than a month later, but sadly I was back in hospital with a huge infection – the most trivial and annoying thing (at the time) was that I missed out on eating some of the fresh prawns I bought to enjoy :), so it’s great to see you tucking into some of the amazing food prepared in the lead up to the silly season. It gives hope to some of us Crohnies, who might be going through flares right now, who could be missing out on enjoying some gorgeous food, which is hard to grapple with – it’s the small things!
The stubborn side in me (which is bigger than I care to admit) sometimes wishes I had the ‘old me’ back, flares and all – because there are days where living with a stoma and body that’s different (inside and out) is hard…but then I read your post and was reminded just how horrible it used to be for me. So I took heart in what my new life and new body is now, and I was reminded of the things I have now, that I would have given anything to, at the time of a flare, have back again.
I love to walk. I just love throwing on my runners, dogs with me or sometimes alone, and just walk. I’ll walk in the rain, on the beach, or just around the block. Sometimes I take my music. Sometimes I go it alone with my own thoughts. When my Crohn’s was at its worst, as you talked about too, I could not even go to the letterbox.
You name it I have been there – one example was at the supermarket on my own, having to abandon a whole trolley of food to run to the loo. Or having to embarrassingly ask to use a toilet at a place that usually doesn’t offer them, like a small clothing store. I have been walking on a clifftop track near Bells Beach (VIC) and because it’s remote there was no toilet. I had no other option but to just get in the car, drive home and simply throw away the clothing I was wearing – hoping to dispose of that memory too, I’m sure.
I love that my surgery has given me back the ability to walk freely. Something so small but I relish the fact that I get to enjoy it again! Before and after my surgery I would be lucky to be able to walk to the nurses station on the ward, the bathroom to have a shower, or on more adventurous days I might have ventured to the cafeteria in the hospital.
I am thankful to have the ability and the strength to be able to walk! #thosesimplethings
Bec x
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It’s definitely the small or simple things Bec! Things most of us (me included prior to Crohn’s) often take for granted. Walking is one of the big things I used to really miss too. I love to walk out in the fresh air, but for years I wasn’t well enough or was too anxious. There was a gym at the physio where I used to work and I would occasionally use the treadmill there after hours just to get a bit of exercise, but it’s just not the same as walking out in nature. Now that I can again, I walk whenever I get the chance! I’ve done the abandoned supermarket trolley and squatting on the side of the road too, and it’s so liberating and wonderful to have the freedom back to be able to walk and do the grocery shopping without having to worry any more – thanks to our ostomies! I’m so glad you are enjoying the freedom of being able to walk freely again too x P.S. I hope you get to enjoy some prawns this Xmas! Garlic prawns are a Christmas tradition in my family 🙂
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[…] I participated in #7DaysofIBD for Crohn’s and Colitis Awareness week (https://stomalicious.wordpress.com/2015/12/07/7daysofibd/) and had a second article published in the Ostomy Australia […]
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