Life with a feeding tube

A hopefully helpful blog to inform those faced with a feeding tube what the process is like!

[lifewithafeedingtube]

Self doubt

Once again, I apologise for the long gap in posts! I have recently taken up a full time job - in a hospital would you believe! All of us know how draining this life is, let alone having a job; fitting in a post isn't the easiest right now.

I want to dedicate this post towards a really bizarre phenomenon. A lot of the time, we fight to explain our medical issues to medical professionals, either through trying to convince them you are as ill as you KNOW you are, or that symptom you've been getting isn't just a blip on the radar, or that this "isn't just a figment of your imagination" (genuinely a question asked of me a few years ago in accident and emergency). However, there is the other side of life, where when you attempt to explain your condition to those around you in your daily life, it becomes overwhelmingly complicated to explain one small fraction of your big picture without painting them the whole thing; one minute you're trying to explain why your wrist is in a brace and the next minute you're giving them an in depth medical history and life story. It's an unusual balance, and it leads to this unusual phenomenon that I was alluding to.

Does anyone else have moments where they doubt their own illness? It's easy to do; with doubt from medical professionals (fleeting or not, it exists), or even just the idea that someone can be this sick and still exist being difficult to settle with, sometimes I find myself wondering if this is all just a really long crazy spell and that one day I'll snap out of it. I know I'm deluding myself - I am very sick and I will be for the rest of my shortened life - but it's very easy to let yourself almost accept an easier condition of temporary insanity.

I do wonder if others feel that way too sometimes. On my worse days, I know that in the truest sense noone in the world would wish this on themselves or another, and as conditions and test results pile up, my doubt is even more difficult to form in my low moments. But, whilst I am clear in thought and writing this post, I can confirm that this is the right thing for me - acceptance for our conditions and the effects they have on our lives is the best possible way we will get through this.

[lifewithafeedingtube]

Graduating

I realise I haven't posted on here in a long time. I imagine that a lot of people reading this will understand me when I say this, but when you have a lot of chronic illnesses, life can very much get in the way. Trying to hold down what others perceive as a "normal life" isn't really possible - I like to explain it with the pie analogy: people who don't have chronic illnesses or things similar to that split their 'life pie' the way they see fit - into a work/study slice, social slice, and the remaining pie is spent on personal time to look after themselves and keep time to just be alone.

However, having a chronic illness means that splitting the pie is a very tough experience. Your first priority when cutting the pie is factoring the slice that denotes how much of your time and effort is taken up by your health. Now this is not negotiable - the social/work/personal time slices may have wiggle room, but the health slice can't be changed. Factoring in the medical appointments, physio time, medication measuring and set up, rest time, emergency hospital visits etc, takes up a fairly large slice of your pie. This means that splitting the rest of the pie can be very challenging - you have a lot less pie left over than most other people you know before you've really even begun.

Now this is where my title comes in. I am in the process of graduating (Yay! 🎉) but this process has been nothing like I ever thought it would be. I dreamed of going to university and being the best possible student that I could be, dedicating my life to my studies and going as far as I could. However, in reality, that wasn't the case. I came to university with my chronic illnesses, and found that splitting my pie became more and more difficult as the years went by. As stress made me more sick, my health took more of the pie, and I found myself choosing between any social life at all, seeing my family at all, or doing some amount of university work. I had to pick one - not a combination - because I couldn't spread myself any thinner than I already was doing. Life became almost unbearable, and I wasn't sure that I would ever finish my degree.

There are however, a few positives to take from this experience. University has been one of the toughest periods of my life, not only for the stress but the fact that my life has been so inconsistent during my time here. But during this time, I have reached out to the people around me for support and only ever received love and help in abundance. My friends and family have always believed in me, and the university have been there to support me in what ever ways they could. I guess what I would like anyone reading this, who may find themselves at the start of the same journey, to take away from this is - you can do it. It may take longer, it may be harder, but take the support of those around you and do what you want to do (and if you ever need support I'm always here). One thing I have heard a lot over the least few years has been "anyone in your situation would have dropped out years ago" - but remember, you aren't just anyone.

[lifewithafeedingtube]

When you are in a period of stress and all your health issues pop up at once

[lenialenient]

[ephemeraldesiderata]

WOW THIS ONE IS TOO CLOSE

[crazymangogirl-inactive]

Damn okay

[lifewithafeedingtube]

Too real

[lifewithafeedingtube]

Yeah makes sense

[lifewithafeedingtube]

Depression

It’s probably about time I wrote about one of the biggest battles I have faced over the last year. As some of you may be aware, I also suffer from Idiopathic Intracranial Hypertension, a condition defined by increased intracranial pressure. This has had its own challenges for sure, but one of the most significant being that the main medication that I take for this condition causes me to suffer from horrific depression. Now, I hadn’t realised this immediately - I had assumed that the management of several chronic conditions had been taking its toll and I was just tired and worn out. But as time went on, I realised I was becoming further and further away from the person I was; a shell of the person I used to be. It was only when the neurologist told me that on the next increase of this medication that I should watch out for suicidal thoughts that I knew I wasn’t wrong for questioning this - there was definitely something going on. 

The thing is, mental health is still very much a poorly fought battle. Medical professionals are still largely unhelpful when facing these issues and the wait lists for any form of counselling that I see here in the UK at least are shocking. There is also an issue with how the public perceives mental health issues. When I started to explain to people that I had depression and anxiety, it was the first time this had happened in the 4 years since I had gotten sick. The response has generally been the same: “That’s understandable - you’ve been through so much.” But why would that validate my depression? So if I hadn’t, would it mean nothing? Regardless of someones lifestyle or circumstances, depression can affect anyone at anytime, without reservation or judgement. 

This year has been a long battle with a demon that is honestly one of the most difficult out of the lot. But if it has taught me anything, it taught me lessons about depression and anxiety that should be openly shared. Don’t judge others - you have no idea what they are dealing with. 

[livingbeyondwithguts]

After I tell my doctor my latest complaints

[lifewithafeedingtube]

Me: finally my severe flare up of this condition is over

One of my other conditions: hi :)

[lifewithafeedingtube]

Is it possible to kind of use your feeding tube by yourself? I'm getting one soon and I'm afraid I won't be receiving help at home with it so I'm incredibly nervous! I guess basically I was wondering if I 'need' help with it or I can manage on my own?

Hi, thank you so much for messaging me and asking for advice! Firstly, I understand that you are nervous. It is daunting facing the prospect of your first time having a tube placement, but let me tell you there is nothing for you to worry about - if you follow the instructions you are given when it is placed you will be totally fine 😊 also, so many of us with feeding tubes self manage - I self manage mine, and once you get into the routine it becomes a second nature. If you have difficulty, you can speak to your health specialists around you to see if there is any way they can make things easier for you, but the tube is definitely manageable by yourself and you can totally handle anything that comes your way. If you ever need any help with anything don't hesitate to message me and I can give any advice that I have on the subject! Best of luck! Xx

[lifewithafeedingtube]

Flipping tube!

No I am not trying to hide my swearing - this post is about having a flipped tube! A flipped GJ/NJ tube is where the J portion of the tube comes out of your jejunum and enters your stomach or sometimes your esophagus, making the tube essentially useless and unusable. To use it can also be super dangerous, as not only will you get the symptoms of the gastroparesis that are the reason you use the tube, but you don’t actually know where the end of that J portion sits. If you have vomited for example and it has moved up into your esophagus, the results can be incredibly damaging if you then feed through it. 

So how do you know if your tube has flipped? For me, the first tell tale sign was pain. I started to get intense pain on the side of my body where I never used to experience pain before, and when I moved the adjuster on my tube and pulled my tube in and out I was getting very localised pain on my left. I also began to get increased bleeding; it seemed that there was increased granulation forming on the very inner part of the stoma due to the constant friction. This pain and bleeding went on for a while before I spoke to my nurse, who suggested that maybe the tube had looped on the inside rather than left the jejunum as I could still tolerate feeds without vomiting. I was however incredibly bloated. 

About a week later however, my pre-tube symptoms returned. The sickness came back with a vengeance, as did the pain. At this point, I KNEW the tube was out. I called everyone I could think of in the medical clinics I had dealt with, and even some I hadn’t, to find someone who would help me. Luckily, I found an amazing nurse who got me on an endoscopy list for 2 days time, and I have it fixed today - and the end now can be attached to the syringe without an adaptor! 

Basically, if you think at all that there are any issues with your tube, get it looked at. I pushed and pushed and was right to do so. You know your body better than anyone!

[lifewithafeedingtube]

Saw this and loved it! Hope everyone is keeping strong, and remember that you are your own pace - no one else’s.

[lifewithafeedingtube]

Social norms

I know I haven’t posted in a while - been busy organising my life, getting a job and getting things in order! However, there was something today that resonated with me and I really wanted to share.

This morning, on the way to work, I was having a conversation with a colleague. In the conversation, something about sickness came up, and I casually used the word ‘vomiting’. My colleague looked genuinely shocked - he said something along the lines of “you are the first person I’ve ever heard use the word vomit so casually”.

I spent a lot of the day thinking about this conversation. I’ve used this word hundreds, probably thousands of times over the last few years - more than any person should use in their lifetime. I guess that has changed my vocabulary in a way that has transpired into my normal conversation. It’s difficult to differentiate my now very medical way of viewing these things from the conversational way I used to, as the vast majority of the talks I have about these topics occur in a clinic rather than amongst peers.

I don’t have any issues with that identification either - I know that my experiences over the past few years of my life have drastically shaped the person that I am. I guess that even now though that sometimes I am surprised by even the little ways that it can change who you are.

[lifewithafeedingtube]

One year

On this day one year ago, I first had my feeding tube inserted. I remember the apprehension I felt before going in for surgery - all those feelings of how I would look after it, what it would look like, what would people think, what would my life be like now that I had something that would become a part of me for the rest of my life. For me, the surgery was painful - they couldn’t perform the endoscopic route and I had to have it inserted radiologically, and even that had difficulties - so a procedure that was supposed to take half an hour took 2 and half hours. 

It has been a tough year; learning to accept my own body image, learning a brand new routine, adapting to a very high level of tube hygiene to prevent infection. Looking back though, the important thing is that I would do it all again in a heartbeat. This tube has saved my life. The constant vomiting was ruining my life, there was no way I could continue like that, and with severe gastroparesis like mine there really was no other choice. So happy anniversary tube, it’s been a long year, but thanks for making me healthier. 

[lifewithafeedingtube]

Hey i met you at the hospital tonight and you really impressed me of how well you are coping! I think you are an amazing young woman & good luck with everything in life! Keelie xx

Aww thank you! I see you found my blog 😊 I appreciate your kind words, I hope everything works out well for you and your partner! Best of luck with everything :) xx

[lifewithafeedingtube]

We made a thing!

So a big issue that I have found during the feeding process is the issue of feed timing - what rate do I have to run my feeds at with the amount of time I have to sleep? This had resulted in a nightly calculation based on my available sleep and the amount of feed I had to take, and I was so sick of doing this all the time. So we made a calculator that does it for you, over on feedratecalc.tumblr.com, where you can add your bedtime and wake up time, your volume of feed, and it will tell you the feed rate - if it is a decimal it will give you the rounded up and down values and what time that will wake you up! This works on desktop and mobile browser, but NOT ON APP! Feel free to leave any suggestions :D Hope this helps make life a little easier :)

[kerascuringcomics]

Here is the latest addition to my sketching spoonie project. The model offered this description:

“When I was diagnosed with gastroparesis, at the same time I was told I would need a feeding tube. Unfortunately, my stomach doesn’t work at all – if I eat food it just sits there for days on end. I welcome the addition of the feeding tube, as it gives me some control back, but the tube isn’t the easiest thing to adjust to. Granulation tissue occurs because the body tries to constantly heal the tube site, and the site leaks making it worse. It gets so sore and it bleeds, and the pain is awful. The only treatment available to me is to cauterize it, which can sometimes make it worse, and having an open wound is always putting you at risk of infection. It is a terrible part of the tubie lifestyle, but it is a sacrifice that I have to make.”

Thank you again to everyone who has modelled and generally supported this project! If you are interested or have questions or comments, you can message me here or at my [email protected] address!

[lifewithafeedingtube]

This is a sketch of my tube, and I am so grateful to kerascuringcomics for this picture - it really highlights the lifestyle of a tubie and the hardships we can face but in a beautiful way. Thank you so much for this drawing, and I hope this image shows people what life is like for people in this situation - it is not just the tube feeding, it is all the stuff that comes with it.

[lifewithafeedingtube]

To all of you out there suffering with some form of disability, keep on keeping on :) credit - The Latest Kate