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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
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 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
#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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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: 
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
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:
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
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.
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
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.
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
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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
No comments:
Post a Comment