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.

Essay over, next essay begins while I take steroids

Thank goodness for that.  

The meiosis essay has been handed in and lets await the mark.  I can definitely see areas for improvement but it was like pulling teeth writing that essay.  However, I have learnt loads from writing it and I see loads of research needed is to do with genetics so I guess I might have to learn even more.  I'll keep you posted and update the last blog post when the result comes through.  I usually float around 50-60% so hope for another.... I'd love to improve my scientific essay writing.  Poles apart from blog or novel writing and it's been such a massive eye opener for me!  Not my favourite thing.  It's all Facts, Facts, Facts.  No creativity.  Needs evidence base to back it up!  None of this imagination stuff.  

That said, I spent a little time yesterday afternoon doing a bit of research to decide where I may like to take my career in the field of study.  Would I go do a masters in dietetics?  Or another thing to add into the mix is learning that a PGdip (post graduate diploma) is enough to get registered as a health professional (HPC) as a dietitian.  This still takes lots of placement time running around hospital wards and I'm just not sure how much I'm up to that. Been working on my health and fitness but more about this shortly!  Looking at a PhD I could see that some PhD's didn't require either registration with HPC or a masters degree.  A good mark in a BSc honours would do the job. I really want to be one or the other or both.  Realistically I can see it being a PhD.  London met where I studied last year do one that you can do partly distance learning.  That sounds fantastic.

The government are setting up a new system to take on more health professionals.  It will enable a loan rather than a bursary which will free up a little more money to be able to be spent on tuition fees. Great news for the NHS who need good people.  

So I definitely need to knuckle down and get those grades better to enable me to apply to continue my studies.  Research into Crohns disease excites me.  Relating to food perhaps? Maybe more niche as in the effects of sugar on crohns disease...

Talking of which.  It saddens me to say I've had to resort to taking steroids for the first time in my life.  Between events in my personal life and that time of year at uni (perhaps coupled with food I would be better off not eating) my Crohns is heading into a flare up.  This means act fast, get rid of it.  I always have controlled this with diet before but I will accept that little bit of help.  I'll keep you posted. Watch this space.  

Meanwhile, the next essay begins.  The role of fat in the diet.