Next week, 10-14th February, is feeding tube awareness week.
As most of you already know, I have an NJ feeding tube. This is a tube that goes up my nose, down my throat, through my stomach and into my jejunum which is a part of the small intestine. The tube bypasses my stomach as, due to my Gastroparesis., my stomach doesn’t function.
I think that having a feeding tube, and understanding the implications and complications that come alongside it, is one of those things that you aren’t aware of until it affects you or someone close to you. At least I know that was the case for us.
There are many different types of feeding tubes including those inserted surgically, and nasal tubes. They can go into the stomach or the bowel depending on the reason why a tube is needed and where the problem area is.
One huge difficulty of having a tube is the fact that, as you need one, it normally means you’re unable to eat, or not eat enough to obtain the required nutrients/ calories etc. In my case I’m unable to eat without vomiting and severe stomach pain. I can inject anti-emetics which aren’t very effective anymore, are impacting my kidneys and I usually still end up throwing up even if it’s hours later and being in excruciating pain. I don’t think it’s realised just what a huge part of life in general and a social life eating is until you’re unable to do it. Just meeting a friend for a cuppa and a cake, going out for dinner for a date night or going out for a family meal are all things that can no longer be done as they should be. I find it upsetting sitting at a table whilst everyone else eats and I’m unable to, and if I do inject and try to eat, I’m up most of the night in pain and vomiting, risking throwing up my tube as I’ve done in the past.
I try not to miss out on things even more than I have to due to my other health issues, so I will go along to a meal even if I’m unable to eat; it’s one of the most difficult situations sitting at a table watching everyone enjoy their meals when you’re desperate to be able to eat too without the consequences! However, if I do eat I’m always wiped out due to the side effects of the anti-sickness injections, and constantly on edge incase I’m sick before we get home and can’t get to the loo etc.
Having a tube/ tube feeding couldn’t be further from being the ‘easy option’ and for me it became a necessity that I honestly wish I didn’t have to deal with.
Having feed can be a messy business. The bottle can leak, there can be a fault in the giving set, or you may just connect it slightly wonkily and it’ll leak, leaving sticky feed everywhere. As well as this, as feeding overnight didn’t work for me, and I can only tolerate a very slow rate of feed due to the dysmotility of my GI tract, I’m connected to the feed for a long while throughout the day. This means that I feel like a dog on a lead, lugging around the drip stand or backpack with me as I’m constantly attached.
In addition to the feed, my medications also go down my tube. This means that all of my tablets have to be crushed, the capsules opened and emptied and liquids measured out. The water the meds are dissolved in has to be sterile, and as I’m unable to get this on prescription it means it has to be cool boiled water. The fragments of the tablets, even though they’re as small as possible, often cause blockages in my tube, but it’s a fight to get the meds that come in liquid form as a liquid due to them costing the NHS more. After a fight I have those which do come in a liquid form, but the others we just have to crush.
This is all obviously a time consuming process and has to be considered if we are going out for the day as they have to be prepared in advance and taken with us. This can also be messy as the syringes are often leaky and the fluid can leak out the end of the tube inbetween medications and flushes being administered. Having my medications down my tube also means I have a lot more to carry with me if we go out and even more if we go away. Too much fluid down my tube at once makes me sick, and so we have to get my medications and flushes down to the smallest volume possible.
Furthermore, having a tube stuck to my face is quite difficult to deal with, for more than one reason. Firstly, just the fact that I have a tube hanging out of my nose which is visible to everyone is difficult. Some people stare at it but don’t mention it like it’s the ‘elephant in the room’, and others make comments such as stating the fact that it’s there (as if I could forget!). I’m fortunate that those close to me who understand what it’s for just make me feel better and treat me as though it’s normal, but most trips out are full of stares and people making comments. I’m so not used to this as all of my scars and my stoma bag etc are hidden under my clothes and so are not visible to others. In addition to this, whilst I know my skin is particularly sensitive and the face is a generally sensitive area, I’ve found it a nightmare finding dressings/ tapes to secure the tube that my skin doesn’t react to. Everything we have tried has left my face red, almost ‘burnt’ and really sore, or I just haven’t been able to tolerate them for very long. However, now we are trying different samples although if we find a suitable one they have to be purchased as they aren’t available on prescription.
Having a nasal tube also makes everyday things such as washing my face, applying make up, washing my hair and brushing/ straightening and tying my hair up so much more difficult. The heat from a bath or shower and the moisture from washing my face or hair often makes the dressing holding my tube in place peel off or loosen, and when my mum or carers help wash my hair, we are constantly trying to hold my tube out of the way so it doesn’t get bundled up and shampoo’ed and conditioned! When I do my make up I usually change my dressing then as it’s easier than trying to put make up on around it, so then I have to try to apply foundation etc whilst holding my tube in place but in various positions to get it out of the way.
As I’m sure you’ve understood from this post, living with a feeding tube, coping with not being able to eat and dealing with feeds, flushes, medications etc is far from easy. However, although I’m going through a difficult patch with feeding at the moment and losing weight, a feeding tube has allowed me to absorb my medications much more effectively than I was able to before, it enables me to run feed which gives me much needed nutrients, has helped to stabilise my electrolytes and ultimately reduced (although not eliminated) my vomiting and risk of dehydration etc. I’d much rather be without my tube, but at the moment, despite the many struggles that come alongside him, Norman the nose hose enables me to stay out of hospital more than I’d be able to otherwise and for that I’m very grateful.