Saturday, 11 June 2016

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



 DAY 11: Gastro-Intestinal (GI) Involvement 
 
Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease



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  hereto 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’, 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   

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








An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here      

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here



Key Event Dates 2018, Click here     

Importance of an early diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here  

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here        



RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

View video, here

Preamble - here


The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. Thank You. 
#HOPE 


 

Last Update: April 2018





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