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Welcome to Young Crohns

I’m Louise and I write about my ‘Adventures with a Chronic Illness’.
I have Crohns Disease, a form of Inflammatory Bowel Disease and live with a permanent ileostomy.

Latest Posts

Building Good Relationships with your Medical & Surgical Teams

06/07/2022
How to Make the Most of your F2F, Telephone & Virtual Appointments

15/06/2022
Let's Talk About: Infusions in IBD

08/06/2022

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

It’s been a WHOLE YEAR to the day since I had my

It’s been a WHOLE YEAR to the day since I had my #portacath surgery, to give me better access to my terrible veins! 🥳

Having a port has completely - 𝑐𝑜𝑚𝑝𝑙𝑒𝑡𝑒𝑙𝑦 - changed my mindset and experiences of #IBD care these last twelve months. I have more resilience, advocacy and respect for my body; as while having a implanted access device helps me a great deal, it comes with risk and 𝑟𝑒𝑠𝑝𝑜𝑛𝑠𝑖𝑏𝑖𝑙𝑖𝑡𝑦.

In two weeks I have my final training session and then I’ll be able to come to my monthly infusions already accessed. It’s been a long road but damn, I’m super grateful 🙏

If you have any questions, I’m always happy to answer, drop me a reply or a DM
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#adventureswithachronicillness #ibdawareness #crohndisease #invisibleillnessawareness #inflammatoryboweldisease #guthealth #letstalkibd #medication #medicationfree #ibdmeds #vedolizumab #port #portacath

Lately I’ve been thinking more and more about th

Lately I’ve been thinking more and more about this quote:

ᴛʜᴇ ᴡᴏᴜɴᴅ ɪꜱ ᴘʀᴏʙᴀʙʟʏ ɴᴏᴛ ʏᴏᴜʀ ꜰᴀᴜʟᴛ ʙᴜᴛ ᴛʜᴇ ʜᴇᴀʟɪɴɢ ɪꜱ ʏᴏᴜʀ ʀᴇꜱᴘᴏɴꜱɪʙɪʟɪᴛʏ

And wondering how much I agree or disagree with it.
My feelings on it change, to be honest.

Healing is 𝑚𝑦 responsibility.
Mentally, emotionally, physically.
The scars on my abdomen are healed and secure but I wonder more about the emotional part of having surgery more and more these days. It’s not down to an significant date rolling around but more the every day feeling I have around my body.

Every so often I am hit - 𝑎 𝑓𝑢𝑙𝑙 𝑤𝘩𝑎𝑐𝑘𝑎𝑏𝑙𝑒 𝑏𝑙𝑜𝑤 - by the reminder that how my body looks and acts is forever changed and it won’t be any other way.
But how I 𝑓𝑒𝑒𝑙 about my body; that’s more and more down to me these days. As soon as I remember my stoma is there, my butt is gone and this is my life until I die, I then think about all I know and appreciate about this new body of mine.

So yeah the healing ❤️‍🩹 feeling part of my life is an ongoing process. Sometimes it easy, some times it’s really hard. And it’s not just one answer, one feeling, that’s it. It’s 𝑒𝑣𝑜𝑙𝑣𝑖𝑛𝑔.

That’s how I see my chronic illness.
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#adventureswithachronicillness
#invisibleillnessawareness #chronicillness
#noteverydisablityisvisible
#butyoudontlooksick
#disabilityawareness
#itsokaytonotbeokay

A full year recap of my 2022 Goodreads challenge 📚

Set a target of 26 books
32 books read
10,569 pages read

Ready to do it all again this year 🥂🤓

#bookstagram #readingchallenge #goodreadschallenge #goodreads #2022readingchallenge #2022reads

Follow on Instagram

Louise Hunt Follow

She/her✨• #IBD #ostomy blogger & advocate • #boweldisease awareness & education • @crohnscolitisuk Research Champion • AAT student

Louise Hunt @louisehelenhunt ·

28 Dec 2023

Inserted my own port for the final time of 2023 this afternoon.

Humbled and grateful for medical devices which help ease my journey with a chronic illness. One of many, my port has allowed me so much peace at infusions; before, during and after.

💜💜💜

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Louise Hunt @louisehelenhunt ·

20 Sep 2023

Next week marks six months since I started doing my own port access at home! 🏠 Super big milestone but time, WHY MUST YOU SNEAK UP ON ME? 🫣

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Louise Hunt @louisehelenhunt ·

20 Sep 2023

Crochet snacking at this finest this evening 😅

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Louise Hunt @louisehelenhunt ·

16 Sep 2023

Finishing up the @knitcrafthq Miami Memphis blanket and decided on a 🌈 border; question is, does it need more colours? Or is this enough?

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Louise Hunt @louisehelenhunt ·

14 Sep 2023

Started a oversized granny square jumper today! 🌥️
This yarn is a little fluffy and it’s giving me joys on joy 🥰

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Search for:

I talk about

2021 answer 2021 question adventures with a chronic illness anxiety assumptions awareness awareness week biologics blog series CBT chronic illness cognitive behaviour therapy crohns colitis awareness week crohns disease December depression diagnosis diagnosis 2011 health IBD ibd awareness week life lately series Liver living with a stoma mental health methotrexate milestones ostomy ostomy education ostomy supporting products ostomy uncovered proctectomy 2019 stoma stoma awareness stoma bag stoma life stomaversary surgery surgery 2016 surgical journey therapy the what and why the what and why series Vedolizumab what is a stoma

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.
-
-
-
#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 ♥️
-
-
-
#adventureswithachronicillness #ibdawareness #crohndisease #invisibleillnessawareness #inflammatoryboweldisease #guthealth #letstalkibd #medication #medicationfree #ibdmeds #vedolizumab #port #portacath

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