Saturday, 11 June 2016

DAY 11: Gastro-Intestinal, Raynaud's Scleroderma, Rare Disease, Scleroderma Awareness Month 2016

DAY 11  Scleroderma Awareness Month: Gastro-Intestinal (GI) Involvement 

Many patients diagnosed with scleroderma have gastro-intestinal problems with a multitude of symptoms, as can be seen in the image. 

The entire GI system can be affected, starting at the mouth (dry mouth, difficulty swallowing, gum recession etc) all the way to the anus, by way of faecal incontinence. 

Side effects of medications can also add to the GI symptom list, making control and optimum management of the symptoms, very challenging. In 2003, when I was a practising barrister working a 60 hour week, I avoided eating too much of an evening, in an attempt to control and prevent the three hour stomach cramps, regular bathroom trips, bloating and lethargy of the following morning. 

Clearly this was not an optimum solution, and so, it was hardly surprising that my body collapsed after 9 months of this regime, forcing me to make lifestyle changes, and make symptom management, my top priority. 

Over time, via trial and error, I had identified my ‘trigger foods’ which would induce my acid influx and heartburn, and so I now, just avoid them. 

Since there is no cure, only treatments which target symptom suppression, for me, the avoidance of the triggers in the first instance, was my preferred way of control, and remains so. I use a PPI in an emergency situation only. 

I have difficulty with swallowing and chewing (I have had 3 tooth extractions so far, due to scleroderma), as well as, I feel full within a few mouthfuls of food and then feel very bloated, so it was easier to just not eat. 

In December 2012 I had been wiped out with the flu, and after spending another week of my life in my bed, I decided I had to ‘up my game’ with my nutrition and diet. Obviously, the body needs nutrition for its fuel, so trying juicing seemed an optimal solution for me. 

My GI symptoms improved remarkably when I changed my diet and included daily fresh juices made by me, from fresh ingredients in my kitchen / pharmacy. For the first seven days I followed Jason Vale’s juicing programme, and I felt so much better by the second day, that I continue even now, every day, with my juicing regime and diet changes. 

At the time I blogged about my progress, and although now nearly a year old, the contents of this post are still relevant today:
Click  here  to read my 2017 nutrition and diet update. 

My fellow scleroderma patient friend, Kelli Schrag, started a Facebook Page called ‘Healing Loving Scleroderma with Real Food’, click here, to share her amazing results and experience, and which, I help with. 

Kelli has eliminated certain foods from her diet, makes daily juiced fruit and vegetable combinations, and she also, has seen a marked improvement with her scleroderma symptoms. 

For me, yes, juicing is time consuming by way of being organised with ingredient supplies and washing up etc, but I feel so much better since having regular, daily nutritious juices, that now, juicing is just a regular habit to me, such as, brushing my teeth is. For, ultimately, I want to feel good. 

I will be covering the GI symptoms best practice of care and management, in more detail throughout Scleroderma Awareness Month. To learn more click here   

This article was originally published here  in my Column with Scleroderma News.
Interestingly, a recent paper ‘Systemic sclerosis is associated with specific alterations in gastrointestinal microbiota in two independent cohorts’ has been published in the BMJ Open Gastroenterology Journal. The conclusions of which suggested that gastro-intestinal bacteria flora ‘may be a pathological feature of the SSc disease state.’
To read the full article click here
To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 

BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.

Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld 

29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here  
Scleroderma Awareness 2016 Campaign Index Click here  
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 

To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here

To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here    
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