DAY 21 Scleroderma Awareness Month: UPPER Gastro-Intestinal Tract

DAY 21 Scleroderma Awareness Month: UPPER Gastro-Intestinal Tract

Day 21 Scleroderma Awareness month

DAY 21  Scleroderma Awareness Month: UPPER Gastro-Intestinal Tract

Scleroderma can affect the entire gastro-intestinal system starting from the mouth all the way down to the anus. Please see Day 11 SclerodermaAwareness Month for a general discussion of these symptoms — click here.

Dry mouth, along with difficulty in swallowing and mouth opening, can be a challenge. I focused on the mouth and dental issues in Day 18 Scleroderma Awareness Month, highlighting the difficulty with chewing and gum recession and all that this entails.

Heartburn and acid at the back of the throat is a frequent, most unpleasant symptom, with no adequate treatment or cure available. The proton pump inhibitor (PPI) class of drugs provide some relief, however, more recent studies have shown that long term use brings along further problems.

Scleroderma can affect the gut lining and gut muscle, compromising food absorption and digestion. This is often accompanied by a bloating, “full” feeling after a couple of mouthfuls of food. This can eventually lead to malnutrition due to the body not having access to the relevant nutrition.

A watermelon stomach can be seen in some patients due to a change in the blood vessels, as can be seen in the image above.

In the most severe of cases, a feeding tube is necessary.

Medications can also exacerbate GI symptoms.

Over the years, I have learnt to identify my trigger acid-inducing foods, and make sure that I avoid them in the hope to prevent any acid excess. I have daily fruit and vegetable juices, which have most definitely improved my symptoms and improved my energy. To read more about this, click here.

My fellow scleroderma patient and American friend Kelli started the Facebook page ‘Healing Loving Scleroderma with Real Food,’ which I also contribute to.

Since changing her diet and including daily fresh juices, Kelli has experienced similar results to me, improving her symptoms and their management, which she shares on the Facebook page.

Slow mobility of food and digestion can lead the micro flora of bacteria in the gut to become overgrown, adding to the GI symptom list. Excessive antibiotic use can lead to internal candida and the complications that this then brings.

As I explained in the blog post for Day 11 Scleroderma Awareness Month, I have learnt that prevention is better than cure when it comes to GI symptoms. I avoid my trigger foods, ensure daily juices for optimum nutrition, and hope for the best!

To see the UK Scleroderma Study Group guidelines for best practice in GI management, click here.

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

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