Since relaunching my blog people have seen my post about something called a gastrostomy button and have messaged me being super intrigued and wanting to know more about what it is, what I’d does and why I had it removed. So for those reasons I am reliving my experience and aim to talk about it all as I remember. Please bear with me as this is a long one but it’s really worth the read as it is super educational for those who don’t understand these types of intense treatments x
I was four years old when my button was put it, my mum told me everything about the moment the decision was made to have me have a button out in. And then 2003 I woke up from the operation crying because I couldn’t understand what was in my tummy and why. This was my button, which I’ll show a picture below of what one is.
Why did I need a “button?”
I had a button because I struggled putting weight on due to my cystic fibrosis, it was either this option or possible death. So my mum and my dad chose the best option obviously. I had this for about 12 years to help gain weight. That’s right all through primary school, all through secondary and partway through college. To be honest it’s the only reason I maintained and half decent weight and it has helped me on the long run.
What does a button do?
So I used this to have overnight feeds of milkshakes that had a super dose of calories and nutrients all of which my body could not absorb properly from food. This was ran through a pump overnight for 12 hours. As I got older making up my overnight milkshakes got super tedious, I felt sick in the mornings, (as anyone would when you have a constant flow of milkshake going into your stomach for 12 hours!).
Did people know you had a button?
Short answer is yes. But only those I was close too. I vividly remember in high school in the changing rooms of PE I would get changed facing the wall or even find an excuse to not do PE just so people didn’t see my tube when I was getting changed. I felt embarrassed even though I shouldn’t have.
What was dating like when you had a tube in your tummy?
It was hard. It was hard to find someone I trusted or felt comfortable enough to tell about my button let alone see my button. I found someone who didn’t judge me for it and then realised along the relationship at the time that actually it’s not that big of a deal, it is something I needed to keep me alive, why should I ever be ashamed of it?
Why did you have it taken out?
As I got older as I said I started not wanting to have my feeds as much, so eventually when I was at a stable weight and my doctors were happy I stopped my overnight milkshakes and proved I could keep the weight on without the need for my button. I made sure I went Six months Without using it before making my finally decision to remove it. This is because it is very hard to re-access the site to have another button out in. I also wanted to make sure that by not using my button and if I had it removed that I wouldn’t fall back to being underweight and unwell again. It was like the extra safety net I needed At the time so I could make sure I didn’t get poorly in 6 months.
A lot of nurses and doctors recommend I kept it anyway as a just incase but after 12 years I decided no. I wanted to be able to keep healthy on my own and I could which was proven after the six months, something I’m very proud of. Unfortunately over time I have not many photos of my button because I was so upset over it a lot.
Mentally what was it like?
Wow, now that was a rollercoaster of emotions. It really hit hard in highschool in my last years, I had people bully me for all sorts of reasons. Now imagine if they found out I had a weird ass tube in my tummy? Scary right. I would get upset over it at least once a week, i would worry what people would think of me and I would feel really fu^king upset over it to be honest. Over th years I learnt to not give a flying fudge and I bossed it. Whilst I didn’t tell people I also just didn’t care too much about it and often it didn’t cross my mind the cons of it and the physical look of it.
Now that all changed when I had it removed it was me going from tears of upset and sadness to tears of joy. Not because it was removed but because I had done it. I had gotten to the point in my life where I felt healthy without it.
Do you remember a time where something went wrong? Or what was your biggest memory of your button?
I was very young when I woke up to my bed soaking in milkshake I thought maybe my connector had disconnected but my button had burts and came out in my sleep! I remember vividly and even remember the pain it caused me when I got take to a&e where they had to put a tube into my stomach to stretch my skin open again to keep the hole open because it had started to close up. The pain was nothing like I can describe.
Speaking of pain did it ever cause you pain?
Every 6 months it had to be changed. This hurt a lot, it was like my insides were being scratched and pulled. So my muscles had closed around the tube obviously to keep it in my tummy and then I had to relax those muscles for the tube to be taken out and pulled out. Putting it in was easy tho! A whole load of “Goo” jelly type stuff and it slipped right in. But out? Ouch that was a pain.
I also suffered from infections around the site a lot such as thrush and heat rash as it’s always an acidi site, it’s a rubber thing against my skin 24/7 and this could sometimes really flare up and be unbearable and sore. Like a burning sensation sometimes.
Has there been any Implications since it was removed?
Yes - a big fat yes.Your stomach muscles are supposed to fight back and your body should heal after an object it’s removed from a hole that’s been created in your body. It was like a constant open wound. They told me give it a month and it should have healed over. A month of dressings and cleaning it still didn’t heal.
4 years later it still isn’t healed. Over these four years imagine this. Every time you eat or drink acid would leak out of the wound because it is an open hole straight to your stomach. You’ve eaten or drank something so acidic that it’s leaked a orange liquid onto your white top while in public. It’s embarrassing, upsetting and expensive to keep buying white tops! After a while I avoided white all together, I hated eating because it meant it would leak, if I was in a restaurant and felt it start to leak I would quickly grab a napkin and hold it on the site to prevent the leak. I couldn’t dress it with pads because this would cause infections such as thrush or just heat rash. It was painful, smelly and upsetting. Only in the last year this has stopped I’d say but I still have a hole!!
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What have the doctors done to help?
Forst they upped my dosage of omeprazole which is an anti-reflux tablet I take and they thought the level of acidity was causing the hole to not close so by lowering the acidity it would however this didn’t work so next came the endoscopy to clip the “wound” from inside in an attempt to heal it but that hasn’t worked either. Unfortunately the hospital have not been helpful as these are the only two options they have tried and it’s been 4 years and I still have a hole so...
I hope you found this blog post informative and also interesting, apologies as it is so long, however; I really felt I didn’t hold back on information and I fully explained all my feelings which is something I was very hesitant to do. If you made it all the way here and read it all I just want to say thank you. This was a massive part of my life and still is so it means the world you’ve taken the time to learn about it.
Alison x
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