Good morning and welcome to #tubieweek here on The Spoonie Mummy! This week I will be posting blogs and videos (check out the YouTube channel for The Spoonie Mummy) all about tube feeding and TPN.
Crohns disease has wide ranging effects on the body – it is not just a ‘pooing’ disease. One of these can be malnutrition due to a severer flare, leading to severe weight loss and the body lacking vital nutrients it needs. If the flare cannot be brought under control by medication, and treatments such as liquid diets and supplement shakes are not helping, a patient may need to be fed through other means.
Enteral feeding refers to the delivery of a nutritionally complete feed, directly into the stomach, duodenum or jejunum via a tube. This can include:
Total Parenteral Nutrition (TPN) may also be considered. This bypasses the digestive system completely and a solution containing nutrients is fed directly into the blood through a tube in a vein. This will be delivered through a PICC line, a Hickman line or a port-a-cath.
Not at all. Although these kinds of treatments are set up in hospital, patients can be taught how to do their feeds at home when they are well enough.
I have been suffering from bowel problems for over twenty years but Crohns Disease wan’t officially diagnosed till I was 26 and I have never had to be tube or TPN fed. It was considered before I had my surgery, but they soon realised surgery and a stoma was needed urgently! Ste has had to be both fed enterally and with TPN due to his Crohns Disease and his Gastroparesis.
I carried out some polls on my Instagram stories last week to find out about other people’s experiences of tube feeding.
Twelve percent of those who responded were also currently being fed via a tube or TPN. I also posted a question for everyone to answer to find out who had heard of tube and TPN feeding before and 88% of respondents had.
Tube and TPN feeding can be short or long term. Sometimes patients need a boost while a flare is gotten under control. Sometimes, it needs to be a long term option.
Conditions including (but not limited to) cancer, premature birth, metabolic disease, malnutrition, gastrointestinal problems, genetic syndromes and renal problems may result in patients requiring feeding tubes or TPN.
Emma has Ehlers Danlos Syndrome and shares her journey on her blog. She recently wrote a post about life, one year into tube feeding which you can read here.
I hope you have enjoyed reading this brief introduction to the world of #tubies! Please feel free to ask any questions in the comments below and me (or Ste) will endeavour to answer them as best we can. Obviously this post does not contain all the information as there is so, so much but I hope it gives every one a little idea and sets us up ready for #tubieweek nicely.
Disclaimer – I am not a medical professional – my blog posts are based on my own experiences of my chronic illnesses, things I have learnt being with Ste and my own research. Any major issues should be discussed with your own doctor and specialists
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Excellent post. It really helped me understand the different types of Tube feeding, the risks and benefits. I don’t have crohn’s, but I have gastroparesis, which has a relatively high percentage of tubies and people on TPN, so I’ve been wanting to read about it, just in case, especially since I usually come across posts about problems that can be a bit scary. Thanks so much for putting this together!
You are so welcome, I’m glad it helped! Ste has Crohn’s and Gastroparesis and is currently on TPN. It’s a horrible disease! Xx
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