Many IBD fighters have to have a feeding tube at some point in their lives, often this is because Crohn's is active in the oesophagus, or if you are struggling with keeping down a liquid diet. For me, my doctors were worried about the flavouring in my Modulen (Liquid Feed) so my dietitians wanted to give me a NG feeding tube for 2 months, that went up my nose, down my throat, through my oesophagus and into my stomach. My experience with a feeding tube was not a normal one, most patients are totally fine so please do not be put off just because of my story.
TRIGGER WARNINGS: blood, sickness and choking.
Firstly, when they tried to put the tube in, they really struggled. Apparently, I have absolutely tiny nostrils, especially at the top of my nasal passage, so they couldn't physically get it up my right nostril, which was very painful in itself, it was like having a really long covid test but 10 times as painful and even higher up your nose. Next they attempted to put in my left nostril, but because of my hayfever I was very blocked, after about 5 minutes of pushing they managed to get it up but it burst a blood vessel which meant I had blood going everywhere and I started to cough it all up. I had my eyes closed so I didn't realise that I was actually covered in blood until I opened my eyes and realised that the bowl in front of me had a massive pool of blood in it.
Then as they pushed the guide wire and tube down my throat I started to retch and throw up alot of blood, it was very painful and uncomfortable. I have a very high pain tolerance and I don't even flinch when I get needles stuck in my arm, never do I struggle with procedures in the hospital so I really wasn't expecting to struggle with this one. Hence, I started to panic and get quite upset at how painful it was. The IBD dietitians that were doing the tube fitting were so kind and caring and stopped whenever I asked, one of them even gave me their hand to squeeze. In a total moment of freak out and just gut reaction (no pun intended) I pulled the tube out that was about halfway down my oesophagus. It was just basic human instinct to get it out because it was so painful and I couldn't stop throwing up.
After a few minutes of calming down, they started again and this time managed to get it all the way down in about 10 minutes. I was still coughing up blood, but the pain eased a little when they took the guidewire out just leaving the tube in. The dietitians then explained all of my equipment to me and my feeds, I was going to be on a drip feed, attached to a pole 20 hours a day, and if I was going to need to go anywhere, I would have to wear a rucksack with my feeding drip in that my tube would attach to. They then sent me home.
The whole way home I was still throwing up and crying a lot because of how painful it was.
I tried to calm down and relax in order to get used to the tube but coughing up blood was scaring me so much that I couldn't not panic. By the time I got home my mum was very worried about why it was so painful, so I called my dietitian back up and asked her what to do, she told me to relax and try to get used to it for an hour and if it's not settling of I start to choke to pull it out.
After about 30-40 mins of throwing up, retching and coughing up blood, the tube started to pull out a little, and I started to choke, it felt like I was suffocating, which sparked me to have a panic attack and I couldn’t breathe properly, so I pulled it out. We think what happened was, the tube flipped, the end curled and got caught in my stomach and because I was throwing up so violently, the curled tube came up into my oesophagus and caused me to choke. I felt so much better when it was out, the pain was gone and I stopped throwing up. Eventually after an hour or so the blood stopped. I called my IBD doctor and chatted to them about what we should do next, and they decided that I shouldn't have a feeding tube, and I now have a new timetable plan of how to drink my Modulen.
It was a very traumatic experience for me and was scary for my parents to have to watch at home! But it's out and I am okay so that's all that matters.
Again, like I said, not everyone has bad experiences with NG feeding tubes, they think I just had very small nostrils, and a tight Oesophagus, so it felt really invasive for me.
Luce :) x