Intestinal Failure - Distal Enteral Tube Feeding and Fistuloclysis

What is distal enteral tube feeding or fistuloclysis?

Distal enteral tube feeding (DETF) is the process whereby we can provide you with fluid and/or nutrition via a gastrostomy tube that is placed into your stoma. This tube passes into the lower (distal) part of your bowel that has previously been not functioning.

Fistuloclysis is the same technique, but the tube is placed into an enterocutaneous fistula.

You will have some investigations beforehand to make sure that it is safe for you to start feeding this way.

Why do I need to have distal enteral tube feeding or fistuloclysis?

There are a number of reasons why we use this technique, and your healthcare team will provide you with details on your individual circumstances. However, these could include:

1. Intestinal adaptation prior to reconstructive surgery. We know that using the de-functioned part of the bowel and keeping it working before surgery reduces the risk of complications after surgery. In many cases patients who have had DETF or fistuloclysis prior to surgery are also able to recommence oral diet sooner post-surgery.
2. Weaning from parenteral nutrition (PN). It has been shown that in some patients with a minimum of 75cm of small bowel, and the majority of their large bowel, PN can be reduced or stopped completely if DETF or fistuloclysis is established and tolerated.
3. To improve liver function in patients with abnormal blood results. Patients with intestinal failure are at risk of developing ‘intestinal failure associated liver disease’ (IFALD), and one of the risk factors for this is PN. If we can reduce or stop PN then this can improve liver function.

How do I set-up the DETF or fistuloclysis?

Initially a gastrostomy tube will be inserted into your stoma or fistula by a trained healthcare professional. You will then be shown how to set-up all the necessary equipment and if possible trained to do this yourself. You will be attached to a pump to infuse the saline or enteral feed through a tube and into your stoma. We usually try to ensure that this is done overnight so that you can be free from the pump during the day. You can also disconnect from the pump to have a shower or bath.

Items required to set-up DETF/fistuloclysis:

1. ENFit Gastrostomy tube
2. Syringes and water
3. Hollister Catheter access port
4. Stoma appliance (photo is for demonstration purposes only, other appliances are available)
5. ENFIT to funnel adaptor
6. ENFIT transition adaptor

It is preferable to use a 2-piece stoma appliance system with a clear pouch, as this allows you to see the distal feeding gastrostomy tube. You should also see a member of the stoma care team to ensure that the correct pouch and connectors are selected for you and your stoma type.

Step-by-step setting up equipment for DETF or fistuloclysis:

1. A trained healthcare professional should insert a balloon retention gastrostomy tube in the distal limb of the bowel and inflate the balloon to hold this in place.
2. Gather together the connectors and set them up in the following order:

3.    Cut the cap off the gastrostomy feeding tube to avoid it catching.

4.    Cut the cap off the ENFit adapter but retain the ENFit cap for later use.

5.    Put the blue cone into the stoma bag through the opening and into the desired position, which is usually on the lower end of the bag. Pierce the blue cone through the stoma bag from inside to outside.

6.    On the outside of the stoma bag place the white rubber cone over the top of the blue cone. Press the two points together firmly so they stick, then remove the blue cone.

7.    Cut off the end of the white cone to create a small hole.

8.    Attach the ENFit adapter to the end of the tube in the cone.

9.    Manoeuvre the tube into the bag, through the opening, towards the cone system.

10.    Feed the gastrostomy tube into the white rubber cone so the ends are level.

11.    The system is now set-up and ready to be attached to the giving set or syringe to commence enteral feeding.

12.    Your finished product should look like this:

How will it feel?

As you start to administer saline or feed through the gastrostomy tube and into the defunctioned part of your bowel then you may feel a little bit of discomfort, as this part of your bowel may not have been used for some time. However, this will ease after a short period of time. Your bowels may begin to pass some mucous or fluid stool initially, which is entirely normal. You should then start to open your bowels regularly and this may become more formed over time.

What can I eat when I am using this technique?

If your healthcare team have advised that you can still eat and drink, then you should be following a diet that is low in fibre and sugar. Your dietitian will also give you advice that is individual to your circumstances. The table below provides more detail on which foods to choose and those to avoid.

You can still drink fluids such as water, tea, coffee and no-added sugar cordial, though you may be asked to limit the amount of these you have to help to limit the output from your stoma. We advise you to avoid sugary and fizzy drinks as these will cause your stoma output to increase.

Cereals

Foods you may include:

• Low fibre breakfast cereals e.g., Cornflakes, Rice Krispies®

Foods high in fibre and sugar, and should be avoided

• Wholemeal, high fibre breakfast cereals or those with nuts added e.g. muesli, bran flakes, Weetabix®, puffed wheat, shredded wheat, Crunchy Nut Cornflakes®, Fruit and Fibre®, porridge, granola

Bread and Flour

Foods you may include:

• Bread made with white flour including pitta, naan bread, tortilla wraps, bagels, chapatti
• Cream crackers, rice cakes, crumpets, pikelets, potato cakes

Foods high in fibre and sugar, and should be avoided:

• Wholemeal, multigrain or granary bread. Seeded loaves, breads with fruit, fibre or nuts added e.g., teacakes, fruit scones, fruit loaf
• Whole wheat, cracked wheat or brown crackers

Potatoes

Foods you may include:

• Peeled and cooked potatoes, mashed, chipped or roasted (remove all skins)

Foods high in fibre and sugar, and should be avoided:

• Potato skins, potato wedges

Rice, Pasta and other foods you may include:

• White rice, white and tricolour pasta and spaghetti
• White noodles, couscous, rice noodles

Foods high in fibre and sugar, and should be avoided:

• Whole wheat or brown pasta or noodles, brown rice or wild rice
• Bulgar wheat, Quinoa

Cake and Biscuits

Foods you may include:

• Cakes made with white flour and no nuts, seeds or dried fruit added
• Plain or cheese scones
• Biscuits made with white flour e.g., rich tea, custard creams, shortbread
• Crumpets, white muffins, croissants, pancakes, brioche, rice cakes

Foods high in fibre and sugar, and should be avoided:

• Cakes made with wholemeal flour or with added nuts, seeds or dried fruit
• Fruit scones, Christmas cake, mince pies
• Whole wheat biscuits e.g., digestives, hob nobs, cereal bars, fig roll, flapjack

Fruit

Foods you may include:

• Fruit with all pips, pith and skin removed, e.g., banana, apple, pear, peach, mango, melon, lychees, tinned fruit
• Smooth fruit juice (no more than 150ml twice a day)

Foods high in fibre and sugar, and should be avoided:

• Fruit with skin, pips or seeds that remain attached e.g., raspberries, strawberries, blueberries, blackberries, blackcurrants, passion fruit, kiwi fruit, pomegranate
• Coconut, all dried fruit, figs, prunes
• Pineapple, oranges, tangerines, satsumas

Vegetables

Foods you may include:

• Root vegetables that are peeled and well-cooked, with stringy or tough bits removed: turnip, carrot, butternut squash, sweet potato, parsnip, swede, pumpkin, beetroot*
• Skinned and deseeded: tomatoes, courgette, marrow, cucumber, aubergine, roasted pepper. Soft avocado
• Tomato puree or passata
• Well-cooked florets of cauliflower and broccoli (stalks removed)
• Garlic puree, onion salt, finely chopped herbs

*remember that this will turn your stoma output red

Foods high in fibre and sugar, and should be avoided:

• Vegetable skins
• Cabbage, curly kale, celery, fennel, leeks, okra, peppers, spinach, sprouts, sweetcorn, yam, cassava, onions, garlic, artichokes, olives, asparagus, mushrooms, rhubarb, pak choi, bean sprouts, brussel sprouts
• Peas, mange tout, sugar snap peas, sweetcorn, baked beans, broad beans, string or french beans
• Salad vegetables e.g., lettuce, olives

Meat, Fish and Protein alternatives

Foods you may include:

• Meat, poultry, ham, bacon, sausages, fish, eggs, tofu
• Sausage rolls, meat pies
• Smooth paté. Houmous

Foods high in fibre and sugar, and should be avoided:

• Muesli or nut yogurts, yogurts with whole fruit

Milk and Dairy products

Foods you may include:

• Milk (fresh, evaporated or condensed). Cream, crème fraiche
• Cheese, cottage cheese, cream cheese, cheese spreads
• Smooth, low sugar yoghurt (no bits), plain yoghurt, fromage frais
• Ice cream (small portion)

Foods high in fibre and sugar, and should be avoided:

• Muesli or nut yogurts, yogurts with whole fruit

Miscellaneous

Foods you may include:

• Plain or milk chocolate (50g bar)
• Crisps
• Very thin spread of shredless marmalade or seedless jam
• Very thin spread of lemon curd or honey
• Marmite, smooth nut butter
• Condiments e.g. Tomato sauce, brown sauce, soy sauce, mayonnaise, stock cubes

Foods high in fibre and sugar, and should be avoided:

• Any chocolate containing fruit, nuts or seeds added
• Popcorn
• Marmalade with shreds, or jam with seeds. Crunchy nut butter
• Treacle, syrup
• Boiled or gum sweets, jelly babies, toffee, fudge, wine gums, mints, marshmallows
• Fizzy and sugary drinks

My Feeding Regimen

Name of feed:

Volume of feed:

Rate of infusion:

Flushes:

Other:

Who should I contact for any problems?

For problems related to the feed regime: Intestinal Failure (IF) dietitian
Name:
Telephone number:

For problems related to enteral feeding tube: Intestinal Failure (IF) dietitian.
Name:
Telephone number:

For problems related to the deliveries of feed and related equipment: Community dietitian
Name:
Telephone number:

Nutrition Company:
Name:
Telephone number:

Intestinal Failure Unit, Ward H8
0161 206 4521 or 0161 206 5364

Intestinal Failure Outreach Nurses
Tel: 0161 206 8801 or 0161 206 4521

Troubleshooting

Gastrointestinal issues

Nausea, distention, stomach cramps - Reduce rate of infusion or increase time administering bolus. If no improvement, then stop the feed infusion. Contact your dietitian.

Diarrhoea - Reduce rate of infusion or increase time administering bolus. If no improvement, then stop the feed infusion. Contact your dietitian.

Reflux of enteral feed back into stoma bag - Contact the Intestinal failure outreach nurse or dietitian.

Constipation and /or abdominal distention - Contact the Intestinal failure outreach nurse or dietitian. Do not increase the feed rate further.

Mechanical problems

Tube fallen out - Contact the Intestinal Failure outreach nurse or your stoma nurse.

Tube occlusion - Contact the Intestinal Failure outreach nurse or your stoma nurse.

Pump problems

If you are unsure, then please contact your local community dietitian or the Intestinal Failure outreach nurse.  Otherwise, you could try some of the solutions below.

Is the feed container empty?
To continue feeding: flush the tube, change the feed, and make sure the giving set is primed and installed correctly.
To discontinue feeding: Turn off the pump using the “off” key.

IF STILL ALARMING - Is the giving set tube blocked or kinked?
Check that the roller clamp is open.
Straighten the giving set line. If blocked, flush the tube with sterile water. If the giving set will not unblock then use a new giving set.

IF STILL ALARMING - Is the pump standing on a level surface?
The pump must stand on a level surface otherwise the alarm may sound.

IF STILL ALARMING - Is the pump insert empty of feed?
Make sure the giving set is primed and installed correctly.

IF STILL ALARMING - Is the feeding tube blocked?
Use a 60ml enteral syringe to flush the feeding tube with 30-50mls of warm sterile water. DO NOT FORCE THE WATER.

IF STILL ALARMING
Refer to pump operator/training manual. If unable to resolve, contact the feed company.