Friday, 14 April 2017

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

 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. 

Day 11 June Scleorderma Awareness Month 2016 - GastroIntestinal Tract

Day 21 June Scleroderma Awareness Month 2016 - Upper GastroIntestinal Tract

Day 26 June Scleroderma Awareness Month 2016 - Lower GastroIntestinal Tract

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. 

Day 18 June Scleroderma Awareness Month 2016 - skin/hands/mouth
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:

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
‘HealingLovingSclerodermawithRealFood’ facebook page where we post regular updates, tips and recipe ideas. Click here

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  

To view the The UK Scleroderma Study Group best practice guidelines for GI management click here

This article is an update to that published in August 2016 for my Column

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.’
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 
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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