I can't believe it was a year ago that I shared my post on living with a feeding tube for HanWeek2017 and here I am again sharing an update of how my life is on HAN.
When I was told I would be having a feeding tube I wouldn't have thought I would still have it now but it has sort of become a part of me, I hated it at first and it took a while to get used to seeing this tube coming out of a hole under your belly button that shouldn't be there. Over time I have become used to looking at it and accepting it, I don't know if it will be taken out at some stage.
I have had no major problems since having the tube where I have needed to go back to hospital thankfully, the main problems have been overgranulation of the site, which is common as the brain tells the body that the hole shouldn't be there, so tries to close it up by causing thickening of the tissue this is annoying and sore as the area becomes inflamed and can bleed but seems to respond to a course of Hydrocortisone cream applied to the area daily until it clears up.
The other problems that can be encountered are blockages as the tube is so fine. The feed can stick in the tube especially if not flushed straight away when finished and using a 10ml syringe is better for me than using a 50ml at unblocking, if this isn't effective, cooled boiled water usually will do the trick and massaging the tube help break the feed up. I can be given certain liquid medicines through the tube as long as it is flushed thoroughly before and afterwards. Tube maintenance is so important and something that becomes second nature as time goes on, at first can be very daunting. My Dad is my main carer and was given all the training when I left hospital and from the Dietitian, so is really careful at making sure the tube is always clear and the stoma area clean.
I have received excellent care from my Specialist Dietitian who is at the end of the phone if I have any problems and visits me nearly every month to check how things are going, looks at the stoma and checks on my weight as this is very important to make sure I am not losing any and ideally gaining. She is so supportive which is what you need when being on HAN. I also see the Nutritional team at the Royal London Hospital about every 4 months for a check-up and discuss medications and my Colonic Dysmotility, which is part of the reason for having the feeding tube.
Since being tube fed I have gained 1 stone which is amazing as I was losing weight rapidly in a short period before I was taken into hospital, it has been a lifesaver. I have had a complete nutritional blood profile recently which shows everything is ok as I am relying on my feed for my nutrition as my oral intake is minimal. I am able to tolerate small amounts of liquids orally but not enough so I have recently been having bags of water up through the day for hydration which has been working well especially for my #Pots as this has been bad recently. I think the absorption is better as it is bypassing the stomach to the Jejunum as this is where I am fed. I have also increased the rate and volume of feed over time and am now almost at my optimal rate, which I never thought would be possible as my body wasn't tolerating it at a low level but the key is to increase slowly.
Since being on HAN people have commented I look fuller in the face and have more colour, a healthy glow! my clothes fit better rather than just hanging off and my hair is not falling out as much.
Positive benefits of being on HAN
- Weight gain
- Clearer skin/better complexion
- Fuller in face, less gaunt
- Don't get hungry as often
- Not confined to where you feed as you can use a portable pump and rucksack
- People don't know you are feeding as it can be discreet
Negative's of being on HAN
- Setting up of the feed
- Maintenance of the tube
- Having a tube hanging down, you can get pouches but it didn't work for me
- When being fed making sure the long tube doesn't get caught or pulled
- Wearing suitable clothing that will not get in the way
- The bowels can be affected due to being on liquid feed
- When going swimming the area needs a special dressing to prevent water entering
- Making sure you have enough equipment all the time
If there are any questions you would like to ask me please feel free.
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