Frequently Asked Questions About Feeding Tubes & Chronic Illness
What is a tubie?
The name tubie refers to a person with a feeding tube. It doesn't matter what tube a tubie has, all tubies are made equal.
What is a spoonie?
The name spoonie refers to a person with chronic illness. The term spoonie is used a lot online on instagram, facebook groups & in blogs. The term spoonie comes from the spoon theory, This theory is based around spoons which represent energy. Most healthy people will have unlimited spoons for them to use each day, people with chronic illnesses however only get 12. Each daily task costs an x amount of spoons, this leaves the spoonie to decide what needs to be done each day & wether they need to borrow spoons from the next day. The spoon theory is an excellent way of visualising what life is like for someone with chronic illness.
What types of feeding tubes are available?
There are many different types of feeding tube for both short term & long term use. Tubes used for short term feeding are nasogastric & nasojejunal. These are thinner tubes which are fed through the nose & into the stomach or small intestines. These tubes can be easily placed & removed without much issue. For people who need a feeding tube long term there are Gastrostomy & GastroJejunal tubes. These tubes go through the abdominal wall & through the stomach. The GastroJejunal tubes go through the stomach & into the small intestines. Finally there are Jejunal tubes that go directly into the jejunum. These tubes need to be fitted through surgery & are only placed if other tubes have failed.
Can you swim, go in the sea & bath with a feeding tube?
The first 2-3 weeks after the tube is placed you cannot bath or completely submerge the tube. Once this period is over you can do whatever you want! You can start bathing again as normal, it's actually good for cleaning the tube & skin. Do not let your feeding tube stop you going swimming in pools or in the sea, it is completely safe to do so! The only thing you are not allowed to do with a tube is swim in lakes or hot tubs. This is because they are standing water which is full of bacteria which can enter the tube tract causing nasty skin infections!
Can you have children if you are tube fed?
Yes you can! There are many tubie women who have been pregnant & given birth to healthy babies whilst being tube fed. It is always good to speak to your doctor if you want to get pregnant so you can receive the best care. The amount & type of feed may need to change so you & baby get all they need. In some cases you may need to have some more tube changes than normal to accommodate the growing bump.
Can you ask people with tubes or chronic conditions questions?
Mostly yes! Loads of use would love it if you actually asked us about our tubes or conditions. The number of people that stare at us like we are freaks is too high. If you don't understand why or you want to know whats wrong all you have to do is ask. I would rather educate someone so they knew that we are normal people!
What happens when tube feeding stops working?
Like me jejunal feeding has stopped working properly so I am unable to feed via my jejunum anymore. I have now been changed over to Total Parenteral Nutrition which is delivered into the vein via a central line.