Tips From Peers

PHILIPPA’S STORY
Philippa, living with tube feeding

Be sure to set practical targets. You will find ways of doing things - it's small steps. I didn't leave the house for four days when I got home. My first venture out was to walk down the street with my rucksack on (I was on continuous feeding then). I just went to the corner shop to get a pint of milk for a friend coming around for tea. It was totally liberating to go out on my own.
Friends of mine took me on the train one night as they knew I was scared of travelling. I was scared of someone knocking me over. This was three weeks after I'd come out of hospital. We walked to the station, went two stops and came back just to prove I could do it.

MARILYN’S STORY
Marilyn, caring for her son

Before you leave hospital, make sure you know how much stock you'll be getting and how the stock will work. What's the procedure? Try to get those things organised even before you go home. Organise the delivery while your child is still in care and try to figure out the procedure ahead of time. Ask questions and take notes of everything that is being said because you tend to forget so much of it.

JOHN’S STORY
John, caring for son

The best way to learn is slowly. After time, you'll be surprised at how much more you know than in those first few days. It's like riding a bike - someone else can't tell you how, you just need to go and learn it. It's okay if it's not perfect! For example, if you run out of feed, don't have the full dose or have too much.

MICHELLE’S STORY
Michelle, caring for her daughter

I found it easier at home. When in hospital, I felt like everyone was breathing down my neck and like I was being studied. At home, you trust yourself. Also once you're home you realise how much your life changes. I realised only at home that I'd never have a lie in again! In reality, you can change your routine, but it still depends on time and volume. You just have to be really organised. When my older daughter wants to do a club, I now have to shuffle how the feeding will work around her schedule.

PHILIPPA’S STORY
Philippa, living with tube feeding

I have occasionally chewed and spat at social events. I find it easier to go to restaurants with people that I trust. My boyfriend is in the military and he's invited me to a 4-course set meal. I know I'll have to sit down and explain it to everyone, and I don't really want to. But I know he will look after me.

When I'm with family, I have a bowl of soup that is totally liquid. I can make it last as long as their meal does. Sometimes I also put a cup of tea in front of me just to feel a bit more normal! I cook for my other half all the time - I just smell it and get him to taste it.

MARILYN’S STORY
Marilyn, caring for her son

Ask for liquids rather than tablets because tablets take ages to crush up. Not all medications can be crushed. You should be given advice about which medications are suitable to be crushed by your dietitian or pharmacist. You also have to be careful with crushing a tablet so it doesn't block the tube. With liquids, ask for sugar-free (non-syrupy) medications because they can stick to the tube. Have a mortar and pestle at home to crush tablets.

PHILIPPA’S STORY
Philippa, living with tube feeding

Not all your friends will understand, and then some people will surprise you. Take it easy with your family and friends - although it's a massive change for you, you're the one living with it. Personally, I try and make light of it. People think it's a last resort so are scared by it, but they get used to it.
A parent's job is to look after their child, so it can be tough on your parents. My mum just wants to help, help, help. She wanted to put me in a nursing home to have me wrapped up in cotton wool! My mum grieved and then bought me a food processor as she thought I could make soups. It took her a while to accept that I wouldn't be able to eat again.
I was with a friend out shopping and she said she was thirsty. I realised it was mid-afternoon and we hadn't had lunch. She didn't wanted to offend me by stopping to eat. Now I have breakfast, lunch and dinner time flushes to create a normal routine. I'm able to say “it's lunch time!”

LAURA’S STORY
Laura, caring for her son

My family was shocked when they saw the tubes and heard the pump. I think people see the tube and think it’s something terminal. For his Christening invitations, I actually used a photo of my son where you can see his tube. Things like that break down the barrier of awkwardness. Giving your tube fed child’s siblings one to play with helps bring down their fear.

PHILIPPA’S STORY
Philippa, living with tube feeding

I was single when I came out of hospital. I wondered if I was ever going to meet anyone who can understand, but I met my boyfriend since. The first thing he asked was if he could take me out to dinner. I had to reply that I couldn't eat anything but I'd like to go out for a drink. He joked that I was a cheap date, but organised a day motor racing instead.

JAMIE’S STORY
Jamie, living with tube feeding

Know your location, work out your timings and try to know what services are available ahead of time. Allow yourself time. Don't go too far your first time out, or go out somewhere that's a family environment.
When I went to restaurants and didn't order food, the waiters would ask questions. So now use a little card from PINNT that I get out and it explains it to them.
 

PHILIPPA’S STORY
Philippa, living with tube feeding

If you're going out, always give yourself an extra bit of time in case your gastrostomy button pops or you mark your top. I always carry my 'comfort clothes' with me. For bolus feeding in public, I have a scarf/baby muslin that I put on my lap so I can feed under my clothes. I can connect and do it quite discretely. I also always have sterile wipes with me. Personally, I don't like doing it in front of other people, but everyone is different.

LISA’S STORY
Lisa, living with tube feeding

Tube feeding has saved my life. Think of it as allowing you to keep as much of your independence as possible. Accommodating a tube can be daunting and the fact that you can't eat anymore can be tough. But, at the end of the day, I'm grateful for the fact that it keeps me alive. Keeping your humour alive and realising you'll have your good and your bad days is important.
 

JOHN’S STORY
John, caring for his son

Nobody can tell you 'this is what you do to cope well'. It might not be an amazing time, and things are going to be frustrating on an almost daily basis. But don't let it consume you, and always remind yourself that there's another world out there. You just need to make this the new norm. You'll have less time to play squash or football. You might not sleep normally, but you do get used to it. The trick is to not let it take over your life.
Having a child who is tube feeding can mean lots of good things too. It's like having a plane being diverted from Rome to Holland. There are still a lot of nice things in Holland, it's just not what you were expecting. Milestones that your child reaches are much more personal. You meet people you'd never have met or you'll go places you'd not have visited.

MARILYN’S STORY
Marilyn, caring for her son

I bought a caravan and converted it for my son, and we take it to the seaside. I could see his friends shying away from him. I started to take him to places in the caravan where nobody knew who he used to be. Instead, they just know him for who he is now. It's a happier situation being around people who only know the 'now' rather than the 'before'.
 

CATH'S STORY
Cath, caring for her son

We just try to treat him like every other child, jump run play. We don't let things stop him, you have got to let your kids be kids.
 

JULIE'S STORY
Julie, caring for her son

The fact it's energy dense means the stress is less on the child and they can just get on with their life.

MARILYN’S STORY
Marilyn, caring for her son

I usually feed my son overnight, with a litre of water during the day. This is much easier for both of us. That way, we don't have to keep stopping to feed during the day. I'll bring my son into meal time for holidays. My other children will take meals into his room to eat with him. Sometimes I tell him, “Oh, it's fish and chips tonight!”.

JOHN’S STORY
John, caring for his son

I am jealous of parents who have it easier and sometimes feel resentful. You do lose an element of 'normalcy'. I don't always enjoy things as much as you would if you didn't have to provide such intensive care. But life has to go on. It's the 'new norm' for us, so we just get out there and don't worry about anyone else. I feel proud for staying positive.

We find it healthy to go out as often as possible with our son. And the more you do, the easier it becomes. It just takes more planning. With a bit of organisation anything is possible. Have a checklist of things you need before going out with your child. This should include a spare of everything. Be regimental about that stuff so you don't end up in situations where it becomes a panic.

LISA’S STORY
Lisa, living with tube feeding

It's all about striking a healthy balance between doing things you want to and what your feeding tube allows. When you're ready, make sure you still go to social events even if they're based around food. It's important to remember not to be embarrassed about not eating.

JULIE'S STORY
Julie, caring for her son

When I need to do my feed I just do it wherever he is, if I can. Same with school, so he doesn't think he is different to the other children in his class. His friends are used to him - he is just Dom to them.

JOHN’S STORY
John, caring for son

You'll be surprised how helpful people are, no matter where you are. We've travelled with our son all around the U.S., St. Vincent, Turkey, France, Ascot, Germany, and Mauritius. When we've lost or broken something, it wasn't that hard to get it switched no matter where we were. It's amazing how many people have been willing to help us out because we're with someone who needs it.

There's always a hospital, and even hotels can offer help. We do plan well before though, to make sure our son's feed is with the airline and things like that. But the rest of the holiday is like any other. We feel like we can do most things, as long as there's electricity!

ABI’S STORY
Abi, caring for her son

I find we get a lot of help at every airport. You can get someone to help you at the airport; you can have wheelchair help and priority boarding. You can get a letter from your doctor explaining that you have prescription milk and syringes. This gives you an extra allowance for your luggage and what you can take through security.

Leave early! Always leave more time than you think you'll need. And bring extras of everything. Find out where the nearest hospital is when you get to your destination.

MICHAELLE'S STORY
Michelle, caring for her daughter

There's a lot of support out there, depending on what you're looking for. Talk to community nurses. Ask if there's a patients' advice centre in your area. Charities, such as PINNT, Half PINNT and Carers UK can be helpful. Talking to other parents with tube fed children is very helpful. I have now met other people going through the same thing, which has brought me inner peace. I even created a meet-up group by advertising on PINNT's forum, the local paper and on social media.

ASHLING’S STORY
Ashling, caring for her daughter

Although it's hard to find the energy at the beginning, you need to have some fight in you. For knowledge of your local legislation and guidance, for answers to your questions, for referrals. No one else will support your child if you don't. Ask about social workers, forums and psychologists. Blogs of other parents can be helpful to see where they are on their journeys. Your community nurse is really important for referring and putting you in touch with different people and the right therapists.

JABI’S STORY
Abi, caring for her son

With time, I've learned some practical tips that might help other parents with their tube-fed child:

1. Charge the pump! The battery should last for a full day.
2. Make sure you always have a spare set of everything. I even keep some lubrication in the car - always think “what if?”
3. Allow yourself to be creative about how you hang the feed. Improvise! Rucksacks work on the back of wheelchairs or I've used hangers in hotel rooms.
4. Make sure the tube is always secure on your child so they or their friends and siblings don't pull them out by accident. Always securely tie them.
5. Create a communication passport for your child that describes who he is, what he likes, his journey, his condition or illness, how he feeds and what to do if there's a problem. This is particularly helpful if you're not a very vocal person.

KATIE’S STORY
Katie, caring for her daughter

This depends on the age of your child. If your child is fed from an early age, you don't have to explain anything. If they are older, or if you're explaining to siblings, you can explain like this: “You need to be fed through this tube as your tummy isn't working the way ours does. Apart from that you are exactly the same as the rest of your family.”

Explain what feels natural to you and your family. The worse thing to do is not tell them anything and have your child or other children left wondering. Straight talking, honesty, and using simple language that the children will understand will make it easier.