Fluids and RIG

Hi Maggiedel

My husband had a PEG feeding tube fitted before his treatment and had what appeared endless problems with it.  He too was hospitalised due to dehydration.  He also could not take the recommended amount of the fortisips and water.  The dieticians tried to resolve matters but in the end it was left to him taking what he could through the tube and orally.  We found that three fortisips diluted with water from the 2 litre allowance was the best he could manage daily.  They also admitted that a lot of people do not take the full 6 bottles.  It is all to do with the minerals in the formulation.  It can cause quite bad constipation and that makes anyone feel full.

My husband was lucky in that he managed to maintain his swallowing - albeit compromised the whole time.  Talk to the dietician and insist that they may need to look at him again.  We found that there are a number of different options in the fortisip range beside the 'standard' initial 6 per day.

Good Luck in the rest of journey

Dear  Brandygirl,,

Thank you so much for your swift reply.  It is so helpful to hear from someone who has had the same experiences.  I was beginning to think my husband had a psychological problem as I just couldn't understand how he was feeling full after a small amount of fluid.  When he was well he was able to drink pints of larger without any problem!  I will speak to the dietician.  He is just trying to start swallowing again but this I feel this will be a long process and I am so worried about his kidneys because of the dehydration.

Again, many thanks for your reply and also wishing you well.

Good evening Maggiedel, i rely on being PEG/RIG red and it's surprising how much these food supplements fill us up, I'm supposed to have 8 Ensure Compact but find it hard to manage so I just take 7 and flush with a syringe full of water afterwards. Two litres of water is a lot to manage through the tube as it is not used to so much liquid going straight into the stomach. I pace myself through the day and only syringe one bottle of supplement at each session followed by a syringe full of cold boiled water. As Brandy Girl said there different variants of these food supplements and yes the can cause constipation so i have a laxative on prescription. There are shots of superduper food supplements that you can take 3 times a day (3 x 30ml ) i take a product called Calogen its just a booster to help get the nutrients etc into the body. So my diet is 7 x125 ml of Ensure Compact and 3x30 ml of Calogen a day spaced evenly then a syringe full of water after each feed. Fortunately for me, i can drink thin liquids like water, tea, coffee etc so i top my liquid levels up this way. I know we are all different and are dietary needs are different so mine is just an example of my routine. 

    It still baffles me to this day that you can drink a few pints of lager or beer yet not a few pints of water, i hope they can sort out a diet plan for your husband that agrees with his stomach. Best wishes .

                                                                                                          Chris x

Hi Chris,

thank you so much for taking the time to reply.  It is really helpful to hear from people who have been through this.  I didn't know about the other supplement foods so that is useful to know and I will now speak to the dietician knowing that there are other options out there.

Wishing you all the best Chris and again many thanks, Margaret 

Hi Maggiedel,

I am four years down the line and am still PEG feeding. It’s not so much as I feel full but I never feel hungry. I have a 1 litre feed of a product called Osmolite which I take over 3 hours in the evening via pump, it is quite a fast flow. I follow this up in the morning with a Fresubin energy drink via my PEG followed mid morning by a cup of coffee which I manage orally. In the afternoon I have another cup of coffee or if I cannot manage that 300 mil of water, again via my PEG. There is no way I could manage 2 litres of water. My dietician is happy with this and says it is enough to keep me going. I haven’t lost weight and apart from fatigue, feel OK. For me it is down to what I have been able to settle with and I think this is the same for many of us. Hope this helps a little.

clive

Dear Clive,

thank you very much for sharing your experience.  It really does help to hear about other people who have had to deal with this and how they have managed it.  Its also helped me realise that we need to speak to the dietician to look at what options there are.

Many thanks,  Margaret

Hi I a must 16 month post radiotherapy for tonsil cancer I didn’t have a peg but from week 4 in treatment to week 3 recovery I had a nasal feeding tube .I too found my tummy had shrunk on feeding tube i struggled to take feed in for longer than 90 mins and I was stood up . Best advise I can give his try to start drinking orally if only small sips of water to try Andy maintain swallow as soon as he feels comfortable , the try to ensure or fortisip drinks dilute them 50/50 with water to get extra calories eventually atbyiur hubbys stage I still has contact with my dietician via Macmillan so maybe ask for a meeting .

Hazel,x