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NEW SECTION OF BLOG

World IBD Day 2019

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IBD Patient Involvement in Research Day

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London: for Business not Pleasure

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World IBD Day

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Happy first gotcha birthday 🎂 Ava, 365 days of

Happy first gotcha birthday 🎂 Ava, 365 days of madness, head rubs, the most unlady like sleeping positions and perpetual zoomies.

Forever a cutie who can get away with almost anything! 🫣🥰

#adoptdontshop #gotchaday

Just some mid week feelings. Sometimes it blows

Just some mid week feelings.

Sometimes it blows my mind 🤯 that I live like this and then at other times it makes me really sad that I live like this. It’s heavy and not easy. But it’s all keeping me alive. That’s the reality. And it’s not always a happy reality 💔

#adventureswithachronicillness #thoughtfulthursday #thursdaythoughts #wordstoponder #chronicillness #ibdawareness #crohnsproblems

Feeling all of this after some annual leave and a

Feeling all of this after some annual leave and a long bank holiday weekend.

Breaks / long rest periods always tend to bring out / on little flare ups so remembering that it’s not 𝑚𝑒 but 𝑚𝑦 𝘩𝑒𝑎𝑙𝑡𝘩 that is unreliable really helps at moments like this 💜

#ibdawareness #crohnsdisease #ibdvisible #invisibleillness

Still here, still fighting, still thriving 💜 #

Still here, still fighting, still thriving 💜

#worldibdday2023 #ibdlookslikeme #ibdvisible #crohnsdisease #ibdawareness

Ignoring the cystic acne but accessing my port the

Ignoring the cystic acne but accessing my port the morning of my #vedolizumab infusions is the bees 🐝 knees. Honestly, it’s been a game changer.

Wandering about with a device in your chest that’s invisible apart from a scarred bump on my chest is rather cool. Weird at times - it doesn’t really hurt but it’s uncomfortable at times still - but super cool. And really necessary.

Infusions take a good 30-40 mins less now, plus pre infusion bloods only take one attempt as my veins are not over used and have recovered a lot.
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#adventureswithachronicillness #ibdawareness #crohndisease #invisibleillnessawareness #inflammatoryboweldisease #guthealth #letstalkibd #medication #medicationfree #ibdmeds #vedolizumab #port #portacath

Yesterday I successfully completed ☑️ port tra

Yesterday I successfully completed ☑️ port training! 🎉

I’ve spoken about having a port and the training I’ve been having to access my port at home, prior to my hospital based IBD infusions before but a quick summary:

⚪️ Returned to infusions after SubQ gave me strong site reaction
⚪️ Began using a PICC line as my veins are terribly overused!
⚪️ Reaction to the PICC dressings
⚪️ Day surgery for my port, March ‘22
⚪️ First infusion using the port - April ‘22
⚪️ Port training began - September ‘22

Looks so simple written down but it’s not been without it’s twists and turns. I believe I am one of only a couple patients who have been trained to do this access, so it feels quite unreal / surreal.

I like the independence I have in knowing how my port works and behaves. It allows me to I feel confident and in control of, what can be quite an unpredictable and relentless disease. And that is powerful.

I’ve had awful veins since my IBD diagnosis almost twelve years ago now, but never did I think I would have this. I am still so grateful and humbled by the access I have to enable me to be a continuous self sufficient patient ♥️
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#adventureswithachronicillness #ibdawareness #crohndisease #invisibleillnessawareness #inflammatoryboweldisease #guthealth #letstalkibd #medication #medicationfree #ibdmeds #vedolizumab #port #portacath

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