This week, Scleroderma News reported on the recent study, “Watermelon stomach and colon in a patient with diffuse cutaneous systemic sclerosis,” published in the journal Modern Rheumatology.
The news article informs us that:
‘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 one-patient study is thought to be the first reported case of “watermelon stomach and colon.” This is encouraging for scleroderma patients and medics alike, as it shows progress in understanding the nature of the disease process, with the colon also found to have a stripy appearance caused by blood vessel damage.
Gastro-intestinal symptoms are common in systemic sclerosis patients, both those with limited as well as 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.
One of my current biggest challenges in managing my diffuse symptoms is my GI tract activity. Such activity starts in my mouth (dry mouth, small mouth, difficulty in swallowing and chewing) and extends to excess acid reflux, intense stomach pain, bloating, and frequent bathroom visits — by way of a few examples of the symptoms to juggle.
In December 2012, 15 years post-initial diagnosis, I had a personal eureka moment in “upping my health game.” I documented my progress at the time:
Well, 43 months later, I am still dedicated to my daily juicing and diet regime. As I’ve already noted, the impetus for sticking to it is that I feel sooooo much better. I still have some (quite a lot) of work to do to return to how I felt pre-diagnosis, but this is the best I have felt since 2012.
The change in my diet has enabled me to see and feel improvements with a range of my symptoms. During the last 3.5 years, I have only needed antibiotics on a few occasions, due to dental extractions as opposed to ulcer infection. Granted, this may also be due to me taking bosentan 125 mg twice a day continuously since October 2012. However, continual antibiotic consumption over the preceding three years played its part in creating havoc with my gut. Acid influx was out of control, along with internal candida in my esophagus. Hardly surprising that I constantly felt so bloated, tired and lethargic, and was unable to eat much, as after a few mouthfuls, I felt full.
Back in December 2012, having spent another week in bed due to a virus, my “eureka” moment arrived and, from my bed, I ordered a juicer and the Jason Vale 7-day juicing program. By Day 2, I felt better and noticed a very welcome difference. By Day 7, I felt so much better that I have continued with daily juices ever since. For the first seven days, I made fresh juices, turning my kitchen into my pharmacy. After the first week, I reintroduced solid food.
My ‘Eureka’ Diet
In essence my diet changes include:
I start my day with the juice of ½ squeezed lemon with warm boiled water and ½ teaspoon of organic honey
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 neutralizes the acidity of the fruits, minimizing acid reflux potential.
Most days, I prepare this at the same time I make 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 teaspoon of Spirulina powder, 1 teaspoon Wheatgrass powder, a probiotic capsule, and ice. The final product may not look very appetizing or appealing, but it actually tastes quite sweet and refreshing!
Reduce pasta and bread, carbohydrates, starch, sugar consumption. Do not drink alcohol or caffeine. Do drink at least 4 pints of filtered water a day.
Believe me, abstention from both alcohol and caffeine was a difficult feat. However, their consumption was not a helpful for my body, even though the alcohol numbed the pain and made the world even more of a beautiful place. The “hangovers” 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 coffee. I feel that I abused my body with coffee during the first seven years of diagnosis to get me through qualifying as a female barrister in a male-dominated profession. During this time, I was eating very little in an attempt to minimize 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 practice.
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, the fewer bathroom trips, increased energy, less lethargy, and less stomach pain is the reward! I find that if I lapse and consume a “trigger food,” my body responds accordingly.
My diet is now a daily habit and norm for me, as I want to feel good.
My lovely American friend and scleroderma patient Kelli Schrag has also improved by 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 and 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 only symptom suppression.
Daily fresh juices provide my body with a hit of nutrients, minerals, and vitamins that do not place too much stress on my fragile digestive system by having to be broken down and processed by my body. All in all, I want to feel good.
I discussed GI symptoms in Day 11, 21, 26 of the June Scleroderma Awareness Month campaign. Here are links to those articles:
Also, here’s a link to recently published UK Scleroderma guidance for GI issues: www.rheumatology.org.uk/includes/documents/cm_docs/2015/s/ssc_full_guideline.pdf
Here’s the UK Scleroderma Study Group’s best practice guidelines for GI management: www.scleroderma-royalfree.org.uk/UKSSG.html
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