Practical Approach: Intestinal Failure Innovations
Educational content from recorded physician discussions — not medical advice. Talk to your (or your child's) care team about your situation.
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What the experts said
Distal feeding can be provided through 3-4 French feeding tube placed in distal bowel and brought out as stent rather than matured mucous fistula, allowing easy refeeding without catheter access issues
Refeeding distal bowel provides significant benefit for fluid/electrolyte absorption and allows bowel to dilate and mature, potentially decreasing technical problems at takedown
Jejunostomy chimney technique involves dividing bowel 2-3 cm distal to ligament of Treitz, bringing distal limb up as chimney over splenic flexure with side-to-end anastomosis, allowing Mickey button placement without luminal obstruction
Placing balloon catheter directly in jejunal lumen creates obstruction; chimney technique avoids this by creating separate access limb
When proximal and distal stomas are placed close together, takedown is less stressful on patient and surgeon than complete laparotomy to find and reconnect distant bowel segments
Gastrostomy tubes in very small premature infants (700 grams) can be deferred by placing 3 French feeding tube coiled in stomach, then later dilating tract with wire and interventional radiology to place primary tube without second surgery
Gastrostomy tube placement has costs including leakage issues if placed against costal margin in small infants; timing and location require careful consideration
Prolapsed gastrostomy tubes can cause significant formula loss during feeds; removing dysfunctional gastrostomy allows some children to thrive better
In 2-month-old with jejunal atresia unable to advance feeds beyond 20 mL/kg, if anastomosis appears patent at reoperation, would still revise it rather than leave it alone
At end of intestinal failure operation, must ensure no kinking, restriction, or potential problems remain - cannot tolerate leaving anything that 'could be a problem but is probably all right'
In patient with 50% estimated bowel length, expectation is they will come off parenteral nutrition; should not overtry to salvage bad bowel when good bowel exists
STEP procedure in first year of life, especially in infant who has not progressed with enteral feeds, is not beneficial unless specifically avoiding line infections and bacterial overgrowth
Dysmotile bowel does not become motile because you did a STEP procedure on it; if bowel hasn't been fed and isn't functioning, STEP won't make it work
The one thing that makes bowel adapt is feeding the bowel; procedures causing problems reinitiating feeds cause damage to patient
STEP registry paper showing procedures can be done safely in early neonatal period found only 3 patients came off parenteral nutrition, whereas natural data shows 80-90% of such patients off TPN at 12 months just by being fed
Kids who had early STEP procedures have often redilated, undergone second STEPs, and had mechanical obstructions very detrimental to feeding ability
Indication for lengthening procedure is complications from bacterial overgrowth (d-lactic acidosis) or ultra-short bowel with very dilated segment where tapering doesn't make sense - generally not decisions made at 2-3 months old but after first birthday
Expectation of going from 10 mL/kg enteral feeds to off TPN in 3 months after STEP is a fairy tale that doesn't exist
Surgical techniques for intestinal failure are not out of realm of any pediatric surgeon, but outcomes differ when done in isolation without multidisciplinary team consideration
Since maturing multidisciplinary program, transplant candidates declined by 75% and internal transplants almost non-existent
Patients should be referred to intestinal rehabilitation programs as soon as identified as needing comprehensive approach, not when complications exhausted local knowledge
Programs do far better with children who do not already have complications of their disease than patients who come already suffering from current management
In gastroschisis and surgical necrotizing enterocolitis, significant benefit to time to wean off parenteral nutrition based solely on breast milk (fortified or not) versus formula only
Breast milk is not just formula but really a therapy with components that are anti-inflammatory and promotile
Benefit to kids with spontaneous intestinal perforation is not seen with breast milk, suggesting specific anti-inflammatory and promotile components important for other conditions
Donor breast milk is less advantageous than maternal breast milk; usually taken from mothers 10-14 months postpartum before weaning, has lower caloric density and protein, and freezing may inactivate trophic factors
Express maternal breast milk is favorite approach; when patient predicted to do badly, go to elemental formulas as second line
Free amino acid formulas are relatively hyperosmolar at 20 kcal/oz (osmolarity around 350-360); going higher increases osmolarity, so tend to avoid high caloric density formulas in very young infants
Prefer isotonic formulas (15-17 cal/oz) because digestion changes osmolarity in jejunum, and most bad kids don't have ileum so jejunum has no ability to absorb against concentration gradient
Kids without upper GI dysmotility handle volume much better than concentration, so keep concentration low and advance volume
Introduction of baby foods, meats, and vegetables remarkably helpful in adaptation process once kids get older
TPN panel includes renal panel, liver panel, calcium/phosphorus/magnesium; no longer follow prealbumin or RBP as money-saving strategy, follow albumin instead for chronic changes
Follow essential fatty acids monthly or every other month if on low lipid TPN; iron, ferritin, TIBC every 2-3 months; zinc, copper, ceruloplasmin every 3-6 months; selenium every 6 months
About 60% of patients weaned off TPN have deficiencies in one micronutrient or another
Follow B12 annually plus methylmalonic acid and homocysteine as more sensitive surrogate markers, since B12 can be synthesized by bacteria or falsely elevated with liver disease
Older patient recommends prebiotics more and antibiotics less; almost all patients with substantial resection and lost ileocecal valve have element of small bowel contamination with colonic flora
Want to encourage right flora (anaerobes) and discourage wrong flora (putrefactive bacteria like E. coli, Klebsiella); too many antibiotics kill bacteria you want present to break down starches into butyric acid
Use antibiotics selectively: for d-lactic acidosis, hyperammonemia, or older child no longer thriving on previously adequate caloric intake; if used, finite period 2-3 weeks, and abandon if no improved growth velocity
Breast milk has non-nutrient oligosaccharides (2FL, 3FL) that are not nutrient source to humans but affect microflora and dysbiosis; 80% of secretor mothers make 2FL which is immunomodulatory
Dysbiosis in intestinal failure patients is profound and furthered by H2 blockers and antibiotics; how this affects adaptive process not well understood
In recent data, probably 2/3 of bloodstream infections seen in patients on prophylactic Flagyl, because knocking out anaerobes facilitates aerobic overgrowth and presumably translocation
Metronidazole has limited spectrum, knocks off anaerobes, facilitates growth of aerobes - absolutely the wrong choice for bacterial overgrowth
If desperate for antibiotics, might use selective decontamination with non-absorbable aminoglycoside (Tobramycin) and Colistin
Rifaximin may have role but not well studied in bacterial overgrowth, appropriate dose unknown, and no stable suspension available
Use metronidazole to promote motility by decreasing overgrowth, improving mucosal quality, decreasing inflammation, and increasing tolerance and absorption - not to prevent bacterial infection
When culture most bacteria causing overgrowth, get anaerobes qualitatively, which is reason for metronidazole use
Lack of knowledge about microbiome in children with intestinal failure; tend to use antibiotics based on clinical findings - gram negatives or cholestasis suggests non-absorbable aminoglycoside; sudden distension with frothy diarrhea or lactic acidosis suggests Flagyl
Patients seem to advance well once on solid food, likely due to more physiological exposure to complex proteins and oligosaccharides, but can't identify single causative factor yet
Use antibiotics and not probiotics, only when forced to (d-lactic acidosis, stalling feeds with distension); metronidazole used because anaerobes are gas producers and cause lactic acidosis
Metronidazole doesn't work for everyone; with lactic acidosis, very specific antibiotics seem to work and must find best one; try not to cycle, use once and see how long before recurrence
Worry about probiotics getting in central lines through external contamination more than translocation; lactobacillus species extremely hard to clear, may require line removal
One case established blood infection with same genotype as lactobacillus given as probiotic, which turned program away from probiotics in all kids with central lines
First consideration with increased output is whether overfeeding and overtaxing gut, providing elements for osmotic diarrhea
Reanastomosing colon helps with output; when colon involved, anti-motility drugs like loperamide become helpful
Use soluble fibers to decrease high output; have tried octreotide but not found very useful and worry about chronic use with growth hormone suppression
For patients with lot of gastric output, might use proton pump inhibitor to decrease gastric secretions, but must balance with potential medication risks
Documented inflammation found on endoscopy in some kids; using anti-inflammatory agents (5-ASA products) seems to have impact, sometimes steroid-based enemas helpful depending on location
Anti-inflammatories really helpful in challenging Hirschsprung's patients with dysbiosis and high stool frequency not well managed with other interventions
Successfully managed some Hirschsprung's patients (8-9 years old, stooling 12 times daily, not responding to antibiotic cycling or prebiotics/formulas) with long-term anti-inflammatories and 5-ASA with remarkable success
Avoid cholestyramine as much as possible; doses effective in firming stool usually bind nutrients, fat-soluble vitamins, and fats; slight risk for hyperchloremic acidosis and cholestyramine bezos