Help needed dont know what to try

My dad had his last does of radiotherapy on the 19th October, he has a PEG tube fitted and has been managing thin soups no lumps, he is now very frustrated as nothing savory has any taste at all. He feels like he is not moving forward.
I am looking for suggestions as what to try next, he is at the point he is not wanting to connect his feed up anymore, thank u in advance xx
Original Post
Hi, I haven't got much experience of PEGs but there will be someone here who can help you I would have thought. Obviously the PEG is important and he needs to keep connecting it up.
It's only natural for patients to feel like they aren't making progress now and again, all part of the patient experience so keep encouraging him as much as you can and hopefully he'll pick up in a while.
Hagg.
Hi. I have had a PEG since mid January. I still rely on it for my nutritional needs, but supplement that with real food, with a view to its not being necessary at some point. At the moment, I still have radiotherapy induced swelling of my oesophagus, limiting my ability to swallow. The taste issue is also a problem. Although I can eat soups, I'd be quite happy never to see a mug of soup again (I struggle to open my mouth wide enough for a spoon, unless it's a teaspoon). However, most of the food I can manage is sweet...for some reason, even puréed, savoury foods won't go down, yet I can eat pudding rice and even, once, with lots of cream, a small slice of cheesecake. I have to add a lot of sugar to flavour the sweet foods, but savoury meals tend to have too much flavour, if that makes sense. I can't tolerate spices at all and, though I used to love fresh ground black pepper, even that is too spicy. It really is a case of persevering. Some days some foods taste normal, other days they have no flavour, or taste wrong and others they taste nasty. I seem to have had more success with sweet foods, but maybe because desserts tend to be creamier in texture. I also eat yoghurts and ice cream, creme caramel, crushed over ripe bananas and custard, and baby porridge. Orzo (a form of pasta about the size of rice) sometimes goes down, but sometimes doesn't. I can't tolerate tomatoes cooked as they are too acidic.
Potatoes are a nightmare as they are too sticky, nuts, unless completely ground and used as an ingredient in something should be avoided like the plague. Cakes and bread are a no go....too dry and also bread gets sticky in the mouth if you're lucky enough to have the saliva or the jaws to chew it to a size to swallow.
I was never really a sweet sort of person, but we adapt and to maximise my calorie intake, sugary, creamy foods have been for me, since my mouth recovered from radiotherapy, the easiest to manage and taste.
Hope this helps
hi there
sorry to hear your dad is struggling with very limited taste buds,the peg will help a lot for nutrician but there is nothing better than being able to taste food,i had my peg for 5 years and although my tatebuds are still limited they are 60% better than they were in the early days when everything tasted bland or stung my mouth.i guess it's just trial and error but get him to keep trying different thing even just dunking a biscuit or two.no taste buds has be one of the worse things after treatment which i personally got very upset over.with time some of the taste buds will come back and the more he can manage to eat the less he will need the peg.i was over the moon when my peg was removed and although i still have a couple of freshubin energy drinks a day i am fairly happy with what i can eat these days.wishing all the best to your dad.love shirl xxx
I had radiotherapy which ended in August 2012 and killed my taste buds followed by surgery to remove 2/3 of my tongue. As a result I had a PEG tube and used EnSure 2Cal. However I had to wean myself back onto real food. Forgetting the issues surrounding re-learning how to eat the upside was that my taste started to return. To start with I could only take 'gloppy' stuff like porridge, soup, custard, mousse and pâté.
However we invested in 3 pieces of kitchen equipment. Firstly we bought a slow cooker. The way it cooks makes everything soft so eating was easier. However, before I got to that stage we bought a Vitamix (https://www.vitamix.co.uk/). It makes smoothies, soups, purées but more importantly one can put in slow cooked casseroles and stews (or even curries, grilled steak or whatever takes your fancy) and it will pulp it to a manageable consistency. It's not just a blender because it is so much more powerful. We also bought a hand-held blender called 'Bamix' (http://www.bamix.com/).
These implements, fresh ingredients and a little imagination and inspiration plus a little help from Google really helped my return to a normal diet.
I got quite depressed by the same problem, seas, but as per some of the advice here, was able gradually to move towards foods. Taste (and smell) come back gradually. I do find smell is a big turn off - starting with cold foods is a good idea too.

Dunking biscuits is a good one - my favourite is nice soggy choccie bics! I still dunk now (3 years on), because my saliva will never return totally: so you learn to adapt as you go. Courgettes are the wonder vegetable to help stuff slip down if consistency is a problem.

But being patient is I'm afraid a necessity, it happens slowly. But it doesn't last forever.
How is your dad doing now? I am in the same position as him. Savoury foods taste horrid and I have a PEG tube. The doc said to me I may have the tube forever as my mouth can not open fully due to the radiotherapy, I find it difficult to swallow, have no saliva and taste buds have changed. I do eat porridge - ready break or the microwave oats. I eat them with honey or this maple syrup with 25% less sugar mixed with carob. I have recently been adding blueberries to challenge my throat - this has been good. Soups - add honey to carrot, sweet potato and lentil soup, miss out pepper, onions, cooked tomato or anything with a kick as it can be nasty on the mouth. I find ice cream hurts me but it may be ok for him. I eat a lot of yogurts and panna cotta is amazing! Multi - grain shapes cereal is lovely. Also Lindt lindor has been a great find because it is melted chocolate on the inside and soooo soft, thorntons do some soft centred chocolates too. They come in boxes of the truffles. Yummy. I also tried a little bit of very soft roast chicken breast with gravy and was amazed to like it!! It was a challenge but go slowly and drink water. Fish in sauce boil in bag with petite pois peas and quinoa (very soft and protein rich) has been a savoury meal I enjoy because of sweetness from peas. If all the dairy is too much then try soya milk, they come in different flavours. Also, the Green and Black's chocolate cookbook has a yummy chocolate pot recipe that is heaven. Smoothies are good. There is one I make with banana, protein shake, spinich, milk, sometimes blueberries, sometimes a healthy oil like Flax or Hemp, blitz upped - tastes very good, honestly. On diagnosis we went a bit mad and bought an extremely expensive juicer so I could be try maintain good nourishment that way bt many of these juices nip my mouth so I am still doing trial and error with it (determined to find some super green juice I can manage). There are some books on the market as well if you search amazon for 'difficulties swallowing' (if you need to know these titles specifically just let me know)http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/coping-physically/diet/managing/soft/soft-diet-meals
is also helpful.
Yes the sugar is not great for us but what are we meant to do! Not eat hardly anything? Not have any pleasure? Also, please I hope he has having his feed now. It is important to get full nourishment after all the treatment.
Good luck. If you have any tips for me that I haven't written here, please share, it is hard work and very isolating, especially as I loved food so much. Remember to drink tonnes of water, herbal teas and my fresh homemade lattes from a machine with frothed milk (using a frother) is another little but treasured pleasure.
hi apricot
sorry to hear you are having trouble swallowing etc has speech therapy been suggested to you?i had speech therapy because i couldn't swallow and it did help as i was given mouth exercises to do.on the lack of taste buds it is over 5 years since i finished treatment and now i do have subtle taste buds and can enjoy most foods although spicy foods can still burn my mouth.i had a peg for 5 years and was determined not to have it for life and thankfully i am managing now without one i do have freshubin energy drinks to help with the calorie intake.i don't have any suggestions for you except to keep trying,i remember the first things i ate was mushrooms yet i can't stand them now lol.due to my lack of teeth due to tooth decay and lack of saliva i seem to eat lots of good quality fish cakes and mashed potato and as i still can't bear the taste of veg i make myself colcannon.it really is trial and error i'm afraid.anyway good luck love shirl xxx

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