|Discussion in 'All Categories' started by Michael Farera - Aug 29th, 2022 2:40 pm.|
|Short History of Disease: 15 years of predominant upper GI disorders (gastroenteritis & oesophagitis) esophageal dysmotility and GORD.
Early interventions include botulinum injection to LOS and balloon dilatation procedures. Neither was effective in alleviating postprandial fullness and being able to have an adequate calorie and nutrition intake. Oesophageal manometry study showed “frequently failed peristalsis” although barium swallow for gastric emptying was unremarkable.
Referred to Professor Aziz at Wingate Institute of Neurogastroenterology. Ordered a gastric hydrogen breath test study (2010) and the result was “severely delayed” gastric emptying. Subsequent diagnosis with Mast Cell Activation Disorder with also Ehlers Danlos Syndrome. Due to connective tissue disease (EDS) a gastric pacemaker is ineffective for Gastroparesis and therefore not an option.
Hospitalized for enteral and parenteral feeding. Failed to gain weight with PEG (RIG) tube. Later tried nasojejunal feeding and concluded an N-J tube would not be effective. Subsequently, a period of six months of Home Parenteral Nutrition but concluding the episode with a sepsis infection and Hickman line removed. I have decided to not continue with enteral and parenteral feeding and subsist on a self-styled predominately “smoothie” based diet which avoids fiber, saturated fat, and grains. I am no longer tolerating my primary source of protein of fermented milk (kefir, lassi, yogurt, etc.).
Prokinetic medications are ineffective (domperidone, preculparide etc). PH study 2017 showed “reflux sensitivity” and most recent in 2022 “true reflux disease”. H2 blockers and PPI medications are ineffective. The combination of severe gastroparesis, reflux sensitivity, and GORD has most recently severely impacted diet and caused additional weight loss. I am currently 61 kilos at a height is 1.84m (BMI 18).
The consensus from my consultant is that LINX would be effective, however, this surgery is not in their expertise. Due to huge backlogs on the British NHS (caused by the pandemic), it seems unlikely that the timing of my referral for this procedure will be done with the urgency that I require. I would also be open to other advice and insight from you and your team with a view to LINX (my earliest travel date is mid-October) and possible follow-up with a laparoscopic pyloroplasty next year.
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