Being Reliant On The Unreliable

A sentence I’ve repeated many times to various people that sums up my thoughts on tube feeding: how terrifying it is to be totally reliant on something so unreliable. 

Due to gastroparesis, I am completely dependent on a naso-jejunal feeding tube. This has been the case since August last year. All of my nutrition medication and hydration go through this flimsy little tube that likes to kink what feels like every five minutes. The longest a tube lasted for me was a month and a half, the shortest was when it flushed in endoscopy but by the time I got wheeled back to the gastro ward nothing could flush through it. 7 tubes in under 6 months And most of those tubes were in short succession. There was a further 2 occasions where It kinked but the tube was saved at the hospital by repositioning it. 

Through all my health issues this has been the hardest thing mentally of all. The tube can absolutely control my life, being on constant alert for any signs it might be about to stop working due to a kink or block, jumping at the sound of the pump alarm for an occlusion because of all the times that sound is the start of a trip to hospital and it terrifies me. As minor as it may sound it’s the self-confidence issues and missing seeing my whole face. Feed leaks and exhausting medication rounds. Endoscopy after endoscopy when sedation doesn’t even work for you is awful. The uncertainty of making plans but unsure of if you’ll end up in hospital instead because most of the time it really happens with no advance warning. 

These pictures are some tube feeding moments from the last six months. From day one having the pumps on my pole to med rounds and throwing up tubes, PH strips showing it’s flipped into my stomach and hospital trips for replacements. Pretty tape and the giving sets entertaining my cat. And the days where thanks to my tube keeping me alive, and helping my health thanks to properly absorbed nutrition, I can do makeup and have a nice day. 

Being tube-fed is so challenging, it’s scary, it’s unstable and like living on a knife edge in terms of if it will cooperate. But tube feeding is also keeping me alive and that’s something I’m so grateful for this tube for.

Gastroparesis and a new addition

 August was quite the month. It was gastroparesis awareness month and boy was I aware. 

I got admitted to hospital once again unable to keep any food or drink down. Only this time I was already on all the different treatment options and they said there was nothing more they could do. 

Eventually they put in a NJ feeding tube which bypasses the stomach. There was many issues with the first tube so I had to go back to endoscopy another two times but eventually I had a working feeding tube. After being told by every single doctor I saw I wouldn’t be allowed home with a feeding tube the nutrition team consultant came and said that as long as I was tolerating it they would get me set up at home. 

So after three and a half weeks in hospital I am home with a new attachment. I am so relieved to be home but also so overwhelmed. When my GP got me admitted I hoped for a short admission with a solution. I have no clue how long I am going to need a feeding tube for. The discharge plan is to wean me of the tube in the community. I hope its possible. But as the nutrition consultant said, there is no cure for Gastroparesis. Im already feeling very burnt out from dealing with tube things, this is a really rough journey. 

My mental health is a mess, it usually is in September anyway with it being the anniversary of becoming bedbound. The 9th of September will be four years. It is also my birthday on the 23rd of September and that may look very different this year. i’ll be turning 20 and my teenage years will be over, having been ill for all but a month of them. 

Life has thrown so much at me this year and it’s hard to cope with. I really hope things look up from here.