Reflux

[Hayley1418]

My poor Dad is 7 years into MSA-C he’s fighting so hard to maintain a quality of life but it’s getting harder & harder. Dad has been in hospital 4 x this year chest & urine infections & as I have read on here each time he goes in he comes back home worse than before. A real problem we are having currently is with reflux - almost every time Dad eats he coughs chokes & is sick. It’s such a shame as Dad loves his food & it was one of his last pleasures to enjoy. Has anyone else experienced this - any suggestions on coping with this - we are trying softer foods ! Last week they wanted to do a endoscopy on Dad he’s had 4 & barium meals & we have been told nothing they can do - so we didn’t go to this appointment we cancelled it - getting to the point where enough is enough - we are not alone here are we ? Xx

[binnyrox]

I’m so sorry to hear the news.

My husband is in his fifth year since diagnosis. Yes - he went through what you’ve described. This is despite the swallowing tests that confirmed he was fine to eat - albeit soft foods or liquids with thickeners. He was constantly admitted for lung infections (food went down the wrong way)

Finally - he had a PEG inserted and now has his nutrition via that way and is nil by mouth. The PEG procedure was simple and safe. Maintenance is easy

Obviously there were pros and cons. He used to enjoy his food immensely.

Hope this information helps in some small way

Take care

[Hayley1418 in reply to binnyrox]

Thank you it really does help to hear from people on this forum. Dad was offered a peg about 18 months ago but refused it - they said at the time if he didn’t decide within a few months it would be too late to go back & have Peg fitted later. Dad’s last hospital stay in Sept was due to lung infection with good going down wrong way. He’s on antibiotics again now as another chest infection started - I said to him no hospital this time Dad we will get the antibiotics at home it’s where he is more comfortable & happy. ❤️

[Whitefeather1]

Morning Hayley,

You're not alone, I know it feels like it because I was in your position. My friend stopped going into hospital too, one because most medical staff didn't understand her condition and two, because she was worse when she came out. Maggie refused a PEG and a tracheotomy. She was diagnosed with MSA in August 2022 and passed January 24, so deteriorated rapidly. Mag ate what she wanted, albeit smaller amounts and lost a lot of weight. Maggie was also diabetic, and when we had hospice care in place they said if she wanted to eat chocolate, eat it, so she did, and so much of it ! It's such a hard journey to be on, watching someone you love and care for suffering. Mag passed with aspiration pneumonia. She did it her way. I'm sorry I don't have any answers for you, but please know you're not alone x

[Hayley1418 in reply to Whitefeather1]

Thank you so much I’m so glad your friend found her own way - that’s the way we are thinking now - just let Dad be. He’s happiest at home & we can see him whenever we want ❤️ xx

[Whitefeather1 in reply to Hayley1418]

Also Hayley, if you haven't already I had an emergency supply of antibiotics at home for Maggie for when she had a chest or water infection x

[calebsmum]

Has he not had a feeding tube fitted? My husband’s swallow has gone completely and he is tube fed. He still gets reflux unfortunately, we get through a lot of lanzoprazole and gaviscon

[Hayley1418 in reply to calebsmum]

Hi xx Thank you for your reply - no Dad refused the feeding tube & we were told it would be too late to go back afterwards & change our mind - one of the few pleasures he has left is his food but even that is being taken away from him now - I really do wonder how he manages to cope with it all on a daily basis - but he does - he’s always been so strong but I see him getting weaker & struggling even more - it’s heartbreaking xx

[Giovi1960]

Hello Hayley1418. I get heartburn and reflux with almost everything I eat, sometimes just after having a drink of water. I take Tums. And try to eat in smaller quantities and more frequently. Avoid foods and drinks that are bound to exacerbate the reflux, like coffee and spicy foods. Hope this helps.

[TK-67]

I'm so sorry to read this. My mum made the decision to not have a peg fitted, with all the other symptoms it wasn't right for her and would prolong the situation. She just had smaller amounts of food. We had great support from the local hospice team and the nursing home in supporting this, do you have support from your local hospice? Mum was also very clear about when she would go to hospital. It gives me some comfort that we respected her wishes and that we put the support in place to manage them.

[Giovi1960]

Google "foods that help with acid reflux", some very useful information.

[Lassie1331]

Hi Hayley, you are certain not alone. The gradual deterioration is difficult to deal with. My husband is 5 yrs in from Diagnosis of MSA-C and early on he had reflux so was given omeprozole. He often coughs (choking) when eating. He’s been given anti sickness medication which he only takes occasionally. He also has had urinary and chest infections but fortunately never had to be hospitalised. He has stated that if it turns into serious infections, ie pneumonia or sepsis he does not want to go into hospital. That’s his choice. As you say enough is enough.