Friday, 14 April 2017

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

Diet and Nutrition: Nicola Whitehill 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  



 


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.’


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

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: 
 
2013  

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 Schrag, 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



  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

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

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', Click here 

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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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. Read more, here     

  

World Scleroderma Day 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click here   

World Scleroderma Day 2015, 29th June.  


James Carver, myself, Prof Chris Denton
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here    
To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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. 

   


  
Last Update: Feb 2020.       


Diet and Nutrition: Nicola Whitehill 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  










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