Day 2 - The Lucas family HAN journey
"I am a strong person"
Our journey with home artificial nutrition (HAN) started back in 2005, when our middle child Callum was failing to thrive due to having Eosinophilic Enterocolitis. He started off with a naso-gastric (NG) tube which he frequently vomited up. We felt like we were on our own as we did not know anybody who had been on home nutrition. That same year we went to America and I got chatting to a lady from the Oley Foundation; who gave me support when we came back to the UK. She then gave me the details of Carolyn and PINNT who have been in our lives for many years now.
After two years of NG feeding Callum finally had a gastrostomy tube which made life easier. He was on twenty-hour elemental feeds for many years then he once again showed signs of failing to thrive. So in 2016 after a two month stay in hospital our journey with parenteral nutrition (PN) started; the peripherally inserted central catheter (PICC) and then the Hickman® line, the training and a new way of life. I will come back to more about Callum further on.
In 2008 our eldest son was admitted to hospital for biopsies and scopes but when he came out of theatre we were told he had to go on a full elemental diet for six months. At the age of eleven Joshua found this difficult; he tried so hard to drink the required number of calories per day but could not maintain his weight, so he like Callum started off with a NG tube then a percutaneous endoscopic gastrostomy (PEG) followed by a MIC-KEY Button. This caused him a great deal of anxiety as he missed the whole first year of secondary school. We now had two children on home artificial nutrition. Thankfully, when Joshua turned sixteen after five years on elemental feeds, he had enough safe foods in his diet to be able to have his Button removed. Thanks to the tube and the elemental feed he is a healthy twenty-year old at university studying multimedia and journalism.
Personally, I have always had gut problems from a very young age and have seen many gastroenterology teams in that time. In 2015 I started having problems swallowing food so I was seen by the team at Queen Alexandra (QA) hospital. I had upper and lower scopes with biopsies. These showed, like my children, that I had an Eosinophilic disorder; I was started on medication. By the end of 2015 I was admitted to the QA because I could not tolerate any food. After many tests and investigations, it was decided that I would need to go on to an elemental only diet so I had a NG tube fitted. I was lucky in a way as I knew what to expect, having watched my children go through this time and time again and now it was my turn. What I did not expect were the comments and assumptions people made once I had left the hospital. I am a strong person but on a night out I was greeted by somebody who we know rather well with “What is that stuck to your face?”! Another person assumed I had a terminal illness. It was then I realised how little people really understand about home artificial nutrition and the reasons why it is needed. Over the months of having the NG tube I was told I was brave for going out; I ended up in a heated debate not once did I ever think I should hide in doors.
Eventually the time came for me to have a PEG put in as elemental feed is now my rescue plan when I become ill. Again, once the NG tube was removed, I still had comments made which if I had been a child would have been very hurtful. I don’t hide my PEG, people know it’s there. I am happy to answer questions and I have found that they do ask if they notice it.
We have now had the experience of dealing with PEGs, Buttons, PICC lines and Hickman® lines, elemental feed and PN which is ongoing. Through our journey we know there is a place we can go to and that place is PINNT - the support they offer is invaluable.
Michelle