Nasoduodenal (ND) Tubes
These also go through the nose and down the throat. But they extend past the stomach into the small intestine – the duodenum. They have to be placed in hospital, and generally last for one-six months. People with these tubes tend to be hooked up to their liquid feed for 18-24 hours a day so the feed can be delivered very slowly.
Nasojejunal (NJ) Tubes
The only real difference between the NJ and the ND tubes are that these go in to the small intestine, delivering nutrition to the jejunum. The times are the same and the fluid must be administered very slowly.
Gastric or Gastrostomy (G) Tubes
These go through the skin directly into the stomach and are used for needs lasting longer than three months. Sometimes these also have a long tube (called a PEG) or a ‘button’ that sits flush with the skin. This allows a ‘hole’ through which the feed can be administered.
Gastrojejunal (GJ) or Transjejunal Tubes
This is where things start to get even more complicated. GJ-tubes go directly through the skin into the stomach too, but they have two ports.
One into the stomach and one into the small intestine (for those who cannot have anything in their stomach). Again, feeding times are terribly slow, taking 18-24 hours.
Jejunal (J) Tubes
J-tubes go through the skin straight into the small intestine. Some types can be replaced at home, and again, the feeds are very long and very slow.
You can find out more information about feeding tubes and so much more at feedingtubeawareness.org,
an amazing online resource.
When All Else Fails
Even these feeding tubes are not always enough, and some people with Gastroparesis end up with a complete failure of their digestive system. This leaves them only one option for survival – putting the feed directly into the blood.
Partial Parenteral Nutrition
(PPN) doesn’t cover a person’s required daily nutrition and is given via IV (a needle called a cannula in to a vein) and is generally used in people who can still take thing orally. In GP patients, it’s sometimes used during a flare to get fluids into a struggling body, but is not a common ongoing treatment used in the management of GP patients for various reasons. Some people with
may experience Pain Amplification, and this along with their tendency towards poor wound healing, makes this seemingly simple way of increasing fluid and nutritional intake more unpleasant than usual.
Total Parenteral Nutrition (TPN)
delivers nutrition to heart via the blood stream. People on TPN have permanent ports placed in their chests. A Central Line, they are placed under the skin with one end of the line going into a large blood vessel above the heart, and the other coming to the surface of the skin at the port site where it is capped and the line often clipped closed.
The liquid feed put through these lines is manufactured and produced in a completely sterile environment, with vitamin and mineral levels being closely monitored. patients and their carers have to be specifically trained on how to handle the equipment and administer the liquid feed before the hospital will let them go home. This is high risk, and the possible side effects and dangers are many:
- Around a
staggering 50% of people with TPN will develop Sepsis
(Blood Poisoning/Infection), which kills thousands of people every year. Many will fight
loss of gastrointestinal structure and function
(the digestive system is not used and certain enzymes and
chemicals are no longer produced by the body).
Liver Dysfunction occurs in around 90%
Hyperglycemia (too much blood sugar) and
- Volume overload leading to
fast weight gain.
- Metabolic bone disease, or bone demineralization (Osteoporosis or
Osteomalacia – something that people with EDS/HSD can ill afford, given that these condition are associated with a lower bone density from birth).
As you can see, living with Gastroparesis can lead to some barbaric surgical procedures, with no certain hope of improvement - or even survival.
Melissa Adams Van Houten says it succinctly…
As of now, there is no safe, reliable, and effective treatment for Gastroparesis – and there is no cure.
Available treatment options include often ineffective surgeries such as Gastric Electrical Stimulation (pacemakers) and pyloroplasty; medications which carry the risk of serious side effects such as Reglan
(which comes with a “Black Box” warning from the FDA) and Domperidone (which has not been FDA approved); feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief.
Living with Gastroparesis is challenging, both physically and mentally. It is truly a life-altering diagnosis.
We seek awareness, better treatments and, ultimately, a cure.
You can join the closed Gastroparesis: Fighting For Change group by clicking
here, and the open GPFFC Community by clicking
here. Don't forget to visit their
website too to see the work this fantastic body is doing in the real world.
Written by #ysuWords & Melissa Adams Van Houten
Email firstname.lastname@example.org for syndication permissions.