Roux-en-Y jejunostomy in gastroparesis: Insight into patient perspectives and outcomes

Table 1 Prior feeding tube experience and motivations for Roux-en-Y jejunostomy

Case	Age/sex	Previous feeding tubes	Reason (s) for procedure
1	72 males	NJT	Recurrent NJT blockage and persistent nasal/throat irritation
		Nasal/throat irritation, recurrent blockage, kinking
		PEG
		Recurrent infections
2	22 females	NJT	Less social stigma as is more discrete; long term solution to maintaining weight
		Recurrent sinus infection, nasal bleeding
		Social stigma - people constantly staring
3	27 females	NJT	Optimise nutrition; medication administration; persistent throat/nasal irritation from NJT
		Nasal ulceration/wounds
		Throat irritation
		Recurrent blockage
		Social stigma
		PEG
		Hypergranulation tissue
4	18 females	NJT	Persistent nausea/vomiting; less social stigma; optimise nutrition
		Nasal/throat irritation
		Social stigma
5	28 females	NJT	Optimise nutrition; improve symptoms
		Recurrent “flipping”
		Nasal/throat irritation
		PEG
		Dislodgement causing gastric perforation and multiple operations
6	28 females	NJT	Persistent nausea/vomiting; optimise nutrition
		Nasal/throat irritation
		Blockage
		PEG
		Leakage
		Feeding jejunostomy
		Leakage
7	31 females	NJT	Optimise nutrition; less leakage and dislodgement
		Recurrent blockage
		Dislodgement
		PEG-J
		Feed reflux
		Leakage
		Jejunal extension dislodgement
8	26 males	NJT	Optimise nutrition; reduce leakage and pain
		Recurrent sinus infection
		Dislodgement
		Social stigma
		PEG-J
		Balloon displacement
		Pain
		Leakage

PEG: Percutaneous endoscopic gastrostomy; NJT: Nasojejunal tube; PEG-J: Percutaneous endoscopic transgastric jejunostomy.

Table 2 Post Roux-en-Y jejunostomy symptoms, nutrition and satisfaction

Case	Symptoms	Complications	Nutrition	Life impact	Venting gastrostomy	Jejunostomy in situ or removed?	Procedure again?	Follow up duration
1	Minimal nausea/vomiting	Persistent abdominal pain	Reduced EN frequency due to pain	Less social stigma - “it’s great not to be stared at by strangers all the time”	No	Jejunostomy eventually removed due to persistent abdominal pain - has returned to NJT	No	2 years
	Worsening abdominal pain		Minimal oral intake - could tolerate sips of clear fluids	Mindful of heavy lifting due to strain on abdomen
2	Improved nausea and abdominal pain	Nil	Continuous EN feeds	Less social stigma	No	In situ	Yes	1 year
			Weight stable	Currently studying at university
3	Improved nausea and abdominal pain	Leakage	Able to maintain weight	“Life changing”	Yes	In situ	Yes	3 years
				Has been able to travel overseas
		Hypergranulation tissue requiring multiple debridements	Overnight EN	Working full time
			Improved oral intake	Maintaining social life
				Difficult to exercise due to pain
4	Improved nausea and abdominal pain	Leakage	Cyclical EN feeds initially	Energy levels much improved	Yes	Removed - able to maintain adequate oral nutrition	Yes	3 years
				Less social stigma
			Now able to maintain weight with oral intake	Currently studying at university
				Avoids tight fitting clothing due to leakage
5	Improved nausea and abdominal pain	Cuff burst requiring jejunostomy exchange	Difficulty tolerating EN via jejunostomy due to abdominal pain - required a period of TPN whilst analgesia regimen optimised	Less social stigma	Yes	In situ	Yes	3 years
		Hospital admission due to poorly controlled pain		Improved energy levels
6	Nausea improved, occasional vomiting	Initially had issues with leakage however resolved with jejunostomy exchange	Cyclical EN feeds	Great quality of life	No	In situ	Yes	2 years
				Currently working
	Mild abdominal pain		Approximately 20% oral intake	High energy levels
			Weight stable	Improved social life
7	Improved nausea and abdominal pain	Hypergranulation tissue	Continuous EN feeds initially however now able to maintain nutrition via oral intake	Maintain oral nutrition	Yes	Removed - able to maintain adequate oral nutrition	Yes	1.5 years
				Social and work life much improved
				Less leakage compared to previous feeding tubes
8	Improved nausea and abdominal pain	Nil	Cyclical EN initially however symptoms improved to the point where could tolerate oral intake	Regained independence	No	Removed - able to maintain adequate oral nutrition	Yes	2 years
				Socially discrete
				Improved function at work
				Able to maintain nutrition orally

EN: Enteral nutrition; TPN: Total parenteral nutrition; NJT: Nasojejunal tube.

Table 3 Quality of life domains - improvements and ongoing challenges

Specific domains
Improvements
Social functioning	Reduce visibility of the feeding tube
	Increased confidence in public settings
	Better ability to participate in social activities
Work/study	Improved attendance
	Better concentration
	Reduced interruptions for tube management
Physical wellbeing	Better symptom control
	Improved energy levels
	Weight stabilization
Independence	Easier self-care
	Greater mobility
	Reduced hospital visits
Ongoing challenges
Physical activity	Exercise limitations due to tube position concerns about tube displacement during activity
	Travel considerations
Social life	Concerns about body image
	Managing feeding schedule around social activities
Work/study	Managing feeding schedules at work/class
	Finding private spaces for tube care
	Explaining medical needs to employers/educational institution
Sleep	Finding comfortable sleeping positions
	Managing overnight feeds
	Concern about tube displacement during sleep