Friday, 14 April 2017

Diet and Nutrition, Raynaud’s Scleroderma, Autoimmune, Rare Disease Patient – Nicola Whitehill

 Diet and Nutrition: Nicola Whitehill 

Raynaud’s Scleroderma, 
Autoimmune, Rare Disease 

 



Gastro-Intestinal symptoms are common in the scleroderma (systemic sclerosis) patient, for both the limited as well as, the diffuse subsets. ‘Watermelon stomach’ can occur in the most serious of cases where damage to the stomach lining takes on the appearance of the stripes of a watermelon. Malnutrition can be a contributing factor to death.

GI complications, such as hemorrhages, low esophageal motility, and bacterial overgrowth, are common in systemic sclerosis patients. 

At times, patients can have watermelon stomach, which is characterized by vascular lesions coming from the pylorus, the valve that connects the stomach to the duodenum. 

These lesions are formed by dilated capillaries with chronic inflammation, and have been long recognized as one of the causes of GI tract bleeding.’

To read more, Click here

This study, ‘Watermelon stomach and colon in a patient with diffuse cutaneous systemic sclerosis’ was published in the Journal ‘Modern Rheumatology’. 

It consisted of one patient, and is the first reported case of ‘watermelon stomach and colon’. 

This is encouraging for scleroderma patients and medics alike as it shows progress in the understanding of the nature of the disease process, with colon involvement being seen for the first time, showing a stripey appearance caused by blood vessel damage.

I discussed GI symptoms in  Day 11, Day 21, and Day 26 of my June, Scleroderma Awareness Month Campaign 2016.  



 

One of my current biggest challenges in managing my diffuse symptoms, is my GI tract activity. 

Starting from my mouth, (dry mouth, small mouth, difficulty in swallowing / chewing), to excess acid reflux, intense stomach pain, bloating, frequent bathroom visits- by way of a few examples of the symptoms to be juggled.




In December 2012, 15 years post initial diagnosis, I had a personal eureka moment in ‘upping my game’ to feel better. 

I documented my progress at the time: 
 


July 2014 

June 2015 

Well, 4 years and 4 months later, I am still dedicated to my daily juicing and diet regime. 

As I noted in the previous articles, the drive and impetus for me to keep doing this, is due to the fact that I feel sooooo much better. I still have some, (quite a lot), of work to do to return to feeling how I did pre-diagnosis, but this is the best I have felt since diagnosis. 
 

The change in my diet has enabled me to see and feel improvements with a range of my symptoms. During the last 4 and a half years, I have only needed antibiotics on a few occasions, due to dental extractions as opposed to ulcer infection. 

Granted, that this may also be due to me taking bosentan 125mg twice a day continuous since October 2012.

However, the continual antibiotic consumption of the preceding 3 years played its part in creating havoc with my gut. Acid influx was out of control, along with internal candida in my oesophagus. 

Hardly surprising that I constantly felt so bloated, tired and lethargic, and I was unable to eat much, as after a few mouthfuls, I felt full.

Back in December 2012, having spent another week in my bed due to a virus, my ‘last chance saloon’ moment arrived, and from my bed, I ordered a juicer and the Jason Vale 7 days juicing program. 

By Day 2, I felt better and noticed a very welcome difference and improvement. 

By Day 7, I felt so much better that I have continued with daily juices ever since. 

For the first 7 days, I drank freshly made juices by me, turning my kitchen into my pharmacy. 

After the first week, I reintroduced solid food.

In essence my diet changes include:  

I start my day with the juice of ½ squeezed lemon with warm boiled water and ½ tspoon organic honey 


Daily Vitamin C smoothie



I juice: 1 peeled orange, strawberries, blueberries, ½ pineapple, and then blend this juice with ½ banana and the same amount of natural yogurt. I add the yogurt as it neutralises the acidity of the fruits, thereby minimising acid reflux potential for me.

Green Juice – most days. I prepare this at the same time of making my smoothie, and then store the juice in the fridge until ready to consume.


I juice 2 golden and delicious apples, ½ peeled lime, cucumber, ½ pineapple. To this juice, I add 1 tspoon Spirulina powder, 1 tspoon Wheatgrass powder, and a probiotic capsule, and ice. The final product may not look very appetising or appealing, but it actually tastes quite sweet and refreshing!

Reduce pasta / bread, carbohydrate, starch, sugar consumption.

No alcohol or caffeine. Drink at least 4 pints of filtered water a day.

Believe me, abstention from both of these substances was a feat which I would never have believed was possible for me. 

However, their consumption was not a helpful choice for my body, even though the alcohol numbed the pain and made the world even more of a beautiful place. 

The ‘hang-overs’ were too intense and went on for too long. Again, not surprising, since alcohol is a natural depressant.

As for caffeine- I now, occasionally have a cup of tea, but very rarely any coffee, as I feel that I abused my body with coffee overload to keep going, during the first 7 years of diagnosis to get me through qualifying as a barrister. 

During this time, I was eating very little, in an attempt to minimise my GI symptoms. 

Frequent toilet trips whilst being an officer of the court do not work well together. Eventually, my body responded by collapsing and I had to cease my court room practice.

No meat.

Again, I would never have believed that I would become a ‘vegetarian’, but the desire to feel good keeps me away from bacon sandwiches and roast chicken dinners. Eating meat proved to be quite a challenge for my digestive system to process.

Although, this may look as though it requires huge discipline on my part to stick to, the fewer bathroom trips, increased energy, less lethargy, and less stomach pain is the reward! If it is that I lapse and consume a ‘trigger food’ my body will respond accordingly.

This way of being, in relation to my diet is now a daily habit and the norm for me, as I want to feel good.

Click here, to see these recipes on their own, without the content of this article.


My lovely American friend and scleroderma patient Kelli Schragg, has also experienced positive improvements with her limited scleroderma symptoms further to changing her diet and incorporating daily juices. 

I help Kelli with the ‘Healing Loving Scleroderma with Real Food’ Facebook Page, where we post regular updates, tips and recipe ideas.

Over the years, time combined with experience, have taught me that ‘prevention is better than cure’ when trying to control my diffuse scleroderma symptoms. 

As we know, there is currently no cure, with treatments targeting symptom suppression as opposed to direct disease progression and reduction. 

By having daily fresh juices, I am providing my body with a hit of nutrients, minerals and vitamins which do not place too much stress on my fragile digestive system, by having to be broken down and be processed by my body. 

All in all, I want to feel good.

The UK Scleroderma management guidelines include the guidance for GI issues.

The UK Scleroderma Study Group best practice guidelines for GI management




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, online 10th April 2017. 

The conclusions of which, suggested that gastro-intestinal bacteria flora 
may be a pathological feature of the SSc disease state.’





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

Becoming a Patient Research Ambassador for the NIHR, 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    


Diet and nutrition, Click here     


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, 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  
  




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

Links

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. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018




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