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The never ending Crohn’s Disease symptoms

This post is for anyone who has an auto immune disease…. it’s forever there. You know what it’s like! You look good on the outside and you’re pretty capable of most day-to-day activities but every few weeks something kicks you up the bum and reminds you you still have a disease bubbling away under the surface.

I’ve come a long way in the last 18 months. I look back and can hardly recognise myself, or believe how much I’ve changed for the better. Colostomy surgery was life changing for me. But not a cure.

I still get smacked in the face with issues I hate and can’t control. Just when you think you’re on top of things, something else comes along…

There’s always that invisible thing called fatigue. You don’t look sick, but you know you have limits. I am working full time (and I love it) but that’s about all I can manage. That’s my limit. I can’t manage many more activities. I can’t use my weekends to see other people and go out. I need weekends to re-group so that I can work. And I want to work because that’s good for my mind.

You learn to choose what you can and can’t do.

[Here’s a photo of me feeding a goat, just because! ;)]

I hurt my back a few weeks ago and that pain in itself definitely put a strain on my immune system. It threw me. If I took voltaren it caused diarrhoea (and with my bag, that’s NOT fun!). As a result of that stress, I have swollen joints and arthritis that is really kicking my arse right now. My right wrist, my right ankle… that’s painful and hard to handle!

I also have about 6 Erythema Nodosum (leg lumps) which are not pretty. So, Summer for me this year will be spent entirely in long skirts or 3/4 pants. Not what I was hoping for! Have you ever had these?? They are JUST ANOTHER THING!!

With all these things going on under the surface I am reminded that an autoimmune disease always there.

It always needs my attention.

I am good at not dwelling on it too much. I do have a whinge to my husband now and then hahaha… But he’s pretty used to me by now. I also blurt everything out here on my blog and then I usually feel better. 😉

The key is to stay positive and not sweat it too much isn’t it?? I’ve been doing this for 24 years now, so I’m getting good at riding the waves. And I really like life. I really like where I’m at!

When the body won’t do as it’s told, then the focus needs to be on the mind. You can’t control the symptoms, but you can control the thoughts. I wrote about thriving with a chronic illness here.

Anyway, just an update here today! If you’re struggling at the moment I hope you find some light soon. You’re not alone. I’m over here too just trying to keep my head above water.

Lots of love today xx

4 comments

  • Joanne C

    Thank you for sharing your story and I’m so sorry to read you have had an increase in symptoms lately. You are truly amazing and inspirational Katrina. Keep on being you xx

  • Kim Jenkins

    I have had Erythema Nodosum twice – both times after a serious bout of tonsillitis- it is not fun & I am sorry you now have it! Of course it is an affliction diagnosed mainly in women!! I hope it doesn’t hang around all summer ?? Take care. Kim

  • Julie

    My commiserations! I’ve been so well for so long and this week a combination of sinus issues from pollen allergies and the smoke in the air from bushfires has shattered me – I know you totally understand how frustrating it is to have something so “minor” for everyone else blow up your whole immune system, lol. BUT! As you say, a positive mindset is half the battle! Thank you for sharing your story, you’re inspiring 🙂

  • Meredith Tuilakeba

    Hey Katrina! Just wondering how you manage your fatigue and joint pain! Do you take any supplements that have worked for you! I am so fatigued all the time and my shoulder and back hurt often. It’s not fun at times having Crohn’s! It would be nice to have some energy! Glad that after your surgery things have improved for you. x

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