Feeding tube fitting - being proactive

Hi

I had a call from the dietician as I’m becoming more limited in the food I can eat. I’ve been maintaining my weight so far so I’m getting enough calories. I’m starting chemoradiation soon and they suggested having a feeding tube fitted now so that when the  inflammation from the radiotherapy starts and if I struggle to eat I can use the tube for feeds. Has anyone else done this? How likely is it that I will need it during radiotherapy?

thanks

Danielle

  • Hi Danielle,

    I was lucky with my start, they did say at the first couple of meetings that a feeding PEG would be fitted, I was getting weight back on from my first cancer approx. 18 months earlier and as I was eating quite well in the end they didn’t fit one, but overall in the 2 years I lost 12kgs so I can’t help with the feeding tube side as I didn’t have one, my weight went down as the appetite is somewhat effected with the treatment. My policy was that everything I eat wasn’t healthy ! you name the fatty rich and I eat it, full fat milk, cream, cheese and chocolate puddings, my diet is otherwise normal now and my weight is coming back on.

    Stay with it and the Food Police will look after you, your tastes and textures will also change for a while. A lot depends where the cancer is located, the Radiotherapy has still effected the back of my throat for swallowing but I’m only 3 months since finishing and they consider it normal and will hopefully get better- the good bit is I am Cancer free in remission, so stay with it Relaxed

    Hopefully someone will also reply regarding the tube feeding

    Take Care

    Tony

    Community Champion Badge

    We will move mountains to help people with cancer live life as fully as they can.
    We'll do whatever it takes. For information, support or just someone to talk to,

    call 0808 808 00 00 or visit www.macmillan.org.uk

    Onwards and UpwardsWink Laryngectomy and OC survivor 

  • Thank you!

    I’ve had a couple of meetings over the telephone with the dieticians and also switched to full fat everything with grated cheese on top and having build up drinks too occasionally as extra. 

    I know it will get harder and I don’t feel like I have any large amounts to lose - 12kg is a scary amount to lose. Wow! I’m 63kg now to start with. I’m thinking I will have one put in so I can always keep my calories up. Mine would be the nasogastric tube with a pump. 

  • Just to update I had the tube fitted and it doesn’t look pretty but it’s not uncomfortable and having it fitted was completely painless and a quick procedure. I’ve decided to embrace it as much as you can I’ve bought patterned Hypafix tape from Amazon and use pretty mini butterfly clips to accessorise it a bit. 

    I’m day ten out of 23 in my treatment and I haven’t had to use the tube for a feed yet. I am finding it useful though. I can take medicines through it especially if they taste horrible or it it’s effervescent cocodamol sometimes sting where I’m having treatment.  I have to flush it with water at least twice a day but what I’m doing is four times a day and putting more water through to keep hydrated in the hot weather. I’m getting quite sore from the treatment and I think I may need to use it for feeds towards the end of treatment  but I’ve had all the training, had the delivery of supplies and have a plan from the dieticians so I will be able to take control if I can’t eat. So I’d say just have one fitted if you are offered. 

  • Hi Orange

    At the moment I can take pureed and sieved food, but I have been told if the chemo does not work  in shrinking the tumour, I may need a feeding tube at some point.  Your  experience and comments have allayed some of my concerns. Did you have the tube fitted just in case?   Good idea using it to keep hydrated. Hope all goes well with you, my treatment should start in another week or so.

    To help my energy levels I am having at least 2 Ensure drinks a day as advised by dietician. And they are available to me on prescription - not sure if that is health or age related.

    Best wishes

    Simon

    1. Hi

    Yes it was just in case but I have had a lot of pain from my radiotherapy this week and I cannot swallow anything now other than water so I am using it for nutrition. It took me 45 minutes to painfully eat a bowl of soup on Tuesday using mucane and highest strength cocodamol so Wednesday i decided I was going to use the tube. I was able to begin a diet plan already discussed with the dietician using the feeds i had already had delivered to my home and slowly increasing the rate and quantity of feed so I haven’t become dehydrated or lost much weight. It’s not good that I have to use it but it’s kept me in control of things and I am at home with my family. I have to be connected to the pump for about 6-7 hours a day but the pump is portable and has a backpack so I can get about. 
    Prior to treatment and until last weekend I could eat a lot of soft foods e.g jacket potatoes, soups, chilli and rice, and I also had fortisip build up drinks prescribed to maintain my weight. The dietician recommended having 1-2 on top of everything else I managed just to help. I think it’s normal to have them prescribed to help keep nourished. 
    Let me know if you have any more questions. Good luck with your treatment 

  • Thanks a lot.  Soups and mashed (even better pureed) potatoes are OK.    Rice is a defo no-no. 

  • Hi Danielle,  My husband was finding it difficult to maintain his weight and had a feeding tube fitted about 6 weeks before the start of his chemo radiation treatment.  I am so glad he did, as 3 weeks Into treatment he was having difficulties even swallowing his medications and was constantly bringing up bile which made it Impossible to eat.  He may get to the stage where he does not  need it, but for now it is very reassuring to know that he can get the calories he needs with the PEG.

    I hope your treatment goes well.

    Regards

    Linda

  • Definitely the right decision for me to have the tube. I’ve also suffered badly with radiation induced oesophagitis and was in hopsital for 6 nights this week. I’ve not been able to eat or drink for more than 2 weeks and the pain is horrible I’ve got a syringe driver with morphine to manage the pain. Luckily I’ve had the tube to help with feeds but I’ve had to be on a drip for hydration. I just finished my treatment on Thursday and the effects could last for another 2-3 weeks. 

  • Hi there, I have not had a feeding tube fitted yet, but think I will have  to have one eventually. In preparation I joined a Facebook page where the members have given me some really good advice on what to expect.