Fortisip help! Nobody believes us!

FormerMember
FormerMember
  • 31 replies
  • 88 subscribers
  • 56289 views

Hi,

12 years ago my partner (Male 56) had a successful double kidney transplant and is on a large cocktail or drugs to maintain this, in march this year he was diagnosed with squamous cell carcinoma on the left lateral side of tongue with small progression in to throat, Due to transplant chemo wasn't an option and so he is receiving a 6 week radiotherapy course, we are into week 4 and so far he has managed to maintain a soft oral diet, how ever at each review he was pressurized to start drinking fortisip drinks as he finally lost 2 lbs in weight, 

The problem we have is withing 15 mins of taking first drink he was violently ill throwing up, severe stomach cramps and diarrhea which lasted over an hour, when we went to treatment that day we mentioned it to nurse who spoke to dietitian and was advised that couldn't be fortisip and to carry on taking them, however partner since tried again with drink and had the exact same effect.

This is really starting to worry him as he is now finding it hard to eat orally even really soft foods but cant face trying fortips again to level or pain caused to throat and stomach but has been warned if he looses more weight it will affect is treatment, yesterday he was already told his mask was slightly looser than it should be.

Any advice would be gratefully appreciated 

sara xx

  • Have you tried making a protein yogurt smoothie,I only used vanilla bean yogurt with milk,the fruit yogurt burned to much.I think your partner is doing fine,I lost roughly 20 pounds through the treatment and recovery process.I had know feeding tube

  • Fortisip and Nutricia the company also makes a stir milk shake 40 grams sugar all these and ensure are not fit for a human being they Are Poisonous from the ingredients intoxicating sugars content and others which can cause diabetes and heart attack and extremely ill ,be careful I have been through it still trying to recover,no proper side effects on  box or bottles or proper side effects on internet 

    Hi and welcome to our community. 

    These meal replacements don't suit everybody but most of us do manage with them as we are on them for only a short time. It's perfectly feasible to make up healthier shakes if you can manage liquid orally but if you are tube fed these foods have to be processed with an industrial spec liquidiser. We are generally very unwell in treatment and just about managing to keep it together without having to worry about the food keeping us alive

    I hope your recovery continues and you feel better soon

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • FormerMember
    FormerMember in reply to Sophie66

    Hi Lyn

    I was probably just unlucky...I was informed by one of the oncology team that 50% of those on Chemoradio would end up in in hospital...when I was admitted there was some anecdotal evidence of this....now have a healthy BMI ....eating well...still experimenting with food.

    Peter

  • I have been on Ensures for the last 12 years and have not had any issues, i agree they are not the most delicious drink but they have kept me alive and in good health. 

                                                                       Chris 

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hello Sara

    I can certainly empathise. I was fortunate to have a RIG for feeding during and in the immediate aftermath of radiotherapy and ingested fortisip that way.   I say fortunate because I too do not tolerate the stuff orally.  The Mocha was the best of a bad bunch for me, but still pretty yukky.  I tried after finishing radiotherapy in a bid to come off the feeding tube but they made me violently sick .  My dietitian suggested Nualtra Smoothie powders which I got on well with …even better when I blitzed them up with ginger root and strong tasting fruit juices….which I am using to help put back some of the weight I lost during treatment.

    When it comes to eating , the best thing I did was to buy a smoothie maker which allowed me choose what I liquidised, control the consistency and which enabled me to avoid milk, yoghurt and other things I loathe!  There are loads of recipes online for high calorie smoothies which I didn’t find too difficult to get down.  

    As others have suggested, I would go back to the dietitian and make a nuisance of myself to get this sorted.  

    All the best to both of you.

    Liz

  • Hi Dani

    I totally agree that in the short term when we are on active treatment the last thing we want to worry about is sugar content in our drink supplements, we just want to get as many calories in as possible to get us through. I would only worry about it if you are on long term drink supplements. It's no different to being on a normal diet and making good food and drink choices.

    I did a bit of research into the sugar content of Fortisip and they do not stack up too badly against lots of other drinks. A 200ml bottle of Fortisip has 13.6 grams of sugar. 200ml of Coca Cola has 21.2grams, 200ml of Lipton Iced Tea has 21grams of sugar, an average hot chocolate has 72g. of sugar per 200ml. Energy drinks have huge amounts of sugar.

    WHO guidelines says we should not consume more than 50g. of sugar a day which equates to 12 teaspoons but should aim for less.

    It's all about  food and drink choices. As I am having Fortisip long term I am very careful about my food choices and make sure I eat low sugar foods, mainly veg, fruit and meat that is easily pureed although there is natural sugar in fruit. I only drink water and never add sugar to anything. I don't deprive myself though and have found a recipe using avacado, coconut milk and cocoa that makes a great chocolate mousse. I do add a bit of stevia to sweeten it. Maybe I should try a little honey instead.

    Lyn

    Sophie66

  • Hi Peter

    Glad that you are now healthy that's great. Yes, experimenting with food is the way to go. I now eat things that I did not like before because of taste changes.  I have recently found that beetroot works really well for me and adds something to taste although I was not that keen before.

    I too ended up in hospital for a week half way through my radiotherapy although the dehydration was not due to  not being able to tolerate drink supplements it was because of my very painful mouth making it really hard to drink.

    Best wishes

    Lyn

    Sophie66

  • I did a bit of research into the sugar content of Fortisip and they do not stack up too badly against lots of other drinks. A 200ml bottle of Fortisip has 13.6 grams of sugar. 200ml of Coca Cola has 21.2grams, 200ml of Lipton Iced Tea has 21grams of sugar, an average hot chocolate has 72g. of sugar per 200ml.

    Crikey!

    Maybe I should try a little honey instead.

    Manuka, where you are, might do you bacterial flora some good?

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Thanks Dani, might try the Manuka honey as I am really battling a case of thrush at the moment. Have been for about 3 months and no matter what I try it doesn't seem to work. I have taken on board all the doctor's recommendations, using a salt mouthwash 4 times a day nilstat 4 times a day, putting my toothbrush in boiling water, soaking my dentures in Curasept, taking probiotics. I asked about Fluconazale but the doctor said he needed to get special permission so couldn't prescribe that.

    Do you think the Manuka honey might help? Any other suggestions gratefully received.

    Lyn

    x

    Sophie66

  • Try it. But get the proper stuff. Theres a lot if cheap counterfeit stuff around 

    Do you think the Manuka honey might help? Any other suggestions gratefully received.

    I can’t understand Fluconazole being off licence  The regulations must be different in OZ 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge