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. 


Since it’s sinking in that I’ve been diagnosed with #ankylosingspondylitis (another autoimmune disease) and researching diet. 
Apparently a low starch diet is heavily evidenced to help against the progression of AS. I clearly remember going keto to help with crohns. My back had never been so good. 
Then I felt better. 
Things slipped. 
🍫🍰🍦🍭🍬🎂🍩🍷
No option but to put the body first now. 
Stress be gone. 
Exercise and stretching each day. 
Low starch diet here we come. 
🌰🍤🍗🍖🍆🍅🍒🍑🍍🧀. 
Aiming to prevent spinal fusion. 

The next day diary entry:

Today sees my doctors visit from my painful knuckles. They sent me to hospital for an x-ray and blood to check for rheumatoid arthritis which is an autoimmune, inflammatory condition – sounds like all the other issues I have.
Still feeling pretty devastated but determined to get a grip of this through low starch diet and daily exercise.


I’m giving up the struggle of life now and I’ll make it let me know what it wants. 

Almost like using it as an excuse but rather it feels like living the life I'm meant to be living – putting health and happiness first – which is incredible. Let’s see what happens now moving forward. Have a big long list of things that I would really really like to do such as update my pod casts. I also quite keen to get things moving on you tube .
I’m going to have to call in the troops and get some people to help with my sales online. Really and truly I want to do some travelling and documenting all as I go. Hoping to show others that through the power of research and positivity you can live a good life despite all of the things that life throws at you. Having an ankylosing spondylitis is a big blow to me and I feel quite devastated. I feel like I need the energy to start to sort my house out and my life out. But I think I can do it. I do feel quite positive.

I’m not quite sure yet how I might make my routine work. But I will need to get to the gym today. And also do some work on my computer. How and why I’m not sure which way round it might work. Unless I combine the gym with going afterwards I’m working on my computer. Could be a possibility.

I'm aiming to keep calm and just go with the flow of life. But this one is tricky.