Saturday, 18 August 2018

I’ve been diagnosed with Ankylosing Spondylitis

This blog post is disguised as a positive one I promise. It might not seem it initially. 

This week I was shocked to receive a letter from the hospital following an MRI I had a few weeks ago. 
Reluctant to lay in the machine, I felt so nervous. I’m not sure what I thought might happen but the heart was pounding anyway. 
Thankfully the amazing hospital workers had no hesitation in letting me use a machine which they told me was a bigger one. Still looked small to me. Yet I appreciated how sweet they were considering it was the end of the day. Without their kindness I expect they could have left earlier for home. 

Previously, an MRI (they were looking for spina bifida occulta) showed 3 degenerative discs. One facet joint had some osteoarthritis but let’s face it, I’m not 21 anymore. So part of me almost didn’t go for the test. 

The results informed me I have Ankylosing Spondylitis

There are square vertebral bodies with lesions, sacroilitis on both hips both sides of the joint and it generally sounds like a lot of inflammation is going on. 

Stunned. 

I’d read around AS before but was thankful I didn’t have it. Now I do. 
This is life changing. 

A chance of spinal fusion is frightening. This means the spine ends up one big long bone rather than lots of little bones. 
The treatment is naproxen which will flare up the crohns so we can’t go down that route. There is biological treatment available but I know nothing about that yet. 

Already, I’ve made positive steps in my research and hope things can continue to give me hope. 

I’m feeling like I really want to crack on with living life just now. Travel. See the world. 
Sort my house out. 
Get some building work done. 



Apparently, daily exercise is a must. Eating a low starch diet is also proven to help. If you want to read around the science bit, I’ll link it here. I am excited to read that one of the bacteria in the gut (which loves to feed on starch) is linked to CD and AS. So, this makes total sense as when I followed the specific carbohydrate diet my gut flora changed, as did the back pain. 

At the age of 13 the back pain started. No one seemed to think this was unusual and I’ve lived with a bad back ever since. Around the same time (tmi warning) I began I lose blood from my intestines and the GP decided this was likely heamorriods without an examination and for years I lived on medication for that until my crohns diagnosis 25 years later!

It’s bad. 
But. 
I can’t turn back time. 
So what can I do?  I can exercise daily and eat right. 

I can live life. 


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Let's keep things positive as I totally step into leading my very best life.

Love, as always

Louise xoxox


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