Feeding Tube Awareness Week 2017! 

Hello my loves, 

In January of 2014 just after I’d fallen ill, I noticed something wasn’t right when I was eating. Day by day as I’d eat the pain would worsen and I was violently throwing up, this continued throughout the whole of January until eating became impossible. I won’t lie, I’ve always loved food – what person doesn’t? so something like this was unbelievably hard for me. I couldn’t eat without this pain in my stomach crippling my body and being violently sick for hours afterwards. I could drink very thin liquids and some thin liquidity foods but nothing that was enough to keep me nourished. 

For months I went without proper food and the weight was dropping off me day by day – I was in and out of hospital for weeks but the hospital just wasn’t doing enough about it. During one stay they gave me two different medications which treat severe acid reflux as this is what they believed was causing this problem but despite the medication it wasn’t getting better. it wasn’t until I was admitted into hospital in July 2014 that they finally began to do something to find out what the problem was. By this time I’d lost over four stone which caused me to be classed as “underweight” and I was lacking nutrition. The hospital decided it was time for me to be given my first NJ Tube (feeding tube) and started me on a high calorie feed which was given at a “slowish” rate for 24 hours a day. I started having some more invasive tests that came back and left the doctors quite surprised. It wasn’t just my severe acid reflux (GERD) causing this; i was diagnosed with oesophagus dysmotility (paralysis of the oesophagus / feeding tube), the hole which allows food to pass from the oesophagus through to the stomach isn’t opening enough due to paralysis therefore all the soild food I’m eating is hitting the closed muscle which is causing it to bounce back up out my mouth again and I was diagnosed with gastroparesis (paralysis of the stomach / delayed gastric emptying) – three life changing diagnosis! 

Unfortunately to this day all the above is still my reality and will continue to be as I’ve been told by my consultant that I may never be able to eat again as my illnesses are so severe. Yes, it’s unbelievably hard especially because I cannot tolerate my feeds without spending the majority of my time with my head in a bucket and being doubled over in crippling pain which for those who have been wondering why I haven’t got my tube in very often, this is why. I constantly throw my tube back up again which is causing me to constantly have ulcers covering my throat/mouth and a sore throat that feels like I’m swallowing razor blades. I spend everyday in agony with hunger pains but as of right now surgery for a Gj tube isn’t a option for me as it would be incredibly dangerous. So we’re trying to work out a plan with my doctors. 

But this week is Feeding Tube Awareness Week, something so close to my heart.  Can you believe a tiny little Tube that goes into your body can save someone’s life? Well it’s true, it has saved mine and thousands of others children and adults lives worldwide! 

Types Of Tubes: 

• Nasogastric Tubes: A nasogastric tube (NG) is a narrow bore tube passed into the stomach via the nose. Children or adults who need feeding for short period of time, usually between 1-6months often have an NG Tube inserted.
• Nasojejunal Tube: A nasojejunal tube (NJ) is almost identical to a ND Tube expect they extend a little further into the small intestine, feedings end up in the jejunal. Children or adults who need feeding for short period of time, usually between 1-6months often have an NJ Tube inserted if they can’t tolerate feeding into the stomach.
• Nasoduodenal Tube: a nasoduodenal tube (ND) are like NG Tubes expect they extend into the beginning of the small intestine.
• Gastrostomy Tube: a gastrostomy tube (G Tube) are the most common type of feeding tube. They are surgically placed directly through the skin into the stomach. These are placed for long term use. 
• Gastrojejunal Tube: a gastrojejunal tube (GJ Tube) are very similar to G Tubes in that they enter the stomach directly through the skin using the same site or stoma as a G Tube . Most people have two feeding ports, one into the stomach and a second tube which extends into the small intestine. 
• Jejunal Tube: a jejunal Tube are directly placed into the small intestine, these require surgical placement. 
• Picc Line: a picc line is a long, thin flexible tube known as a catether. It is inserted into one of the large veins in the arm near the bend of the elbow. It is then threaded into the vein until the tip sits in the large vein just above the heart which is inserted to pump TPN through. 
• Central Line: a central line is the most common access for TPN administration. Central lines are intravenous lines inserted in the veins and the tip of the intravenous catether ends in the large vein in the chest called the superior venta cava. 

Different tubes are chosen by a doctor for certain cases, wether it’s long term or short term, feeding tubes are continuously nourishing patients and giving them back a life that they may not have lived to see without one. 

Did You Know?

1. Feeding tubes are simply an alternate way of receiving nutrition for children or adults who are unable to eat by mouth, or who are unable to receive enough nutrition from oral eating.
2.  The Feeding Tube Awareness Foundation has identified over 300 conditions that can require children and adults to need nutritional support through tube feeding. 
3. Some people have medical conditions that will require them to have feeding tubes their whole lives. But for many people, tube feeding is temporary.
4. Feeding Tubes come in a variety of lengths, thickness and types.
5. Feeding Tubes are saving around 1.5 million lives per day. 
6. 1 in every 6 person will experience having a feeding tube at least once in their lives.
7. More than 500,000 people in the US alone require a feeding tube.
8. children 18 and under represent approximately 20% of the enterally fed (tube fed) population.
9. Once a tube is placed, a special liquid formula is run through the tube and into the body. The tube-feeding formula contains a complete blend of nutrients. Extra liquid and medications are given through the tube. 
10. Tube feeding is ordered by a doctor and reviewed by a registered dietitian and others to make sure that the correct amount of nutrition (protein, calories, fluid, vitamins, and minerals) is provided.

Feeding Tube Awareness Week 2017 is between 6th-10th, please help me raise awareness by sharing this blogpost around to make others aware. It would mean the universe and be widely appreciated by all us tubies worldwide! If you’d like to know more about Feeding Tube Awareness Week make sure you go visit; 

http://www.feedingtubeawarenessweek.org/#sthash.LswgQZLV.dpbs

if you yourself or someone you love, has or needs a feeding tube and you want some advice etc, please don’t hesitate to message me. Feeding tubes aren’t as scary, I promise! 

At the beginning I shared a tiny part of my journey with my digestive tract paralysis. There’s much more to it then what I’ve written (I’ll share more as time goes on) but if you’d like to know more in detail or ask questions, like I said above – please don’t hesitate to ask me. Raising awareness whilst sharing my story is so important to me! 

Hope your all as well as you can possibly be.

Sending tons of love to you all as always,

Elle xo