Ensure 1 cal

Hello, I've been having trouble with ensure since my rig was fitted 3 months ago. It immediately gives me rumbling tum and wind issues that go on and on. I started on 2cal, then was reduced to 1cal, but to no avail. I've tried a little at a time and it's the same. I checked my heart rate after trying some again yesterday and it was up to 95. I take Omeprazole and Peptac most days but they don't help either. Is this unusual?? The rumbling at the moment is happening daily. I've had my rig checked and it's fine.
Another thing worth mentioning is that I haven't seen a dietitian since the rig went in, I think they are too busy at the local hospital although I am supposed to see one this week

[Terry]

Hi Clevblue,

I have not got much experience of Peg feeding but if your stomach is quite empty then it will have air in that might be in the wrong position when liquid is put in through the Peg.

You could try some water first, perhaps as much as 200 ml and move around a bit before the Ensure.

You could try another brand such as Fortisip but I think that might well be similar.

If you need the food and your nutritionist is playing hard to get, speak to your specialist team, GP or Mnda connect,

Love Terry

[Ellie]

Sometimes it can take a while for your digestive system to get used to feeds and that may mean changing feeds a few times within a brand or changing brands or changing how you’re fed.
If you can, see a Dietitian rather than a Nutritionist.

Are you taking 2x the volume of 1cal than you were on the 2cal? Do you still manage to eat a little too? i.e. are you getting enough calories each day? Are you fed on a totally empty tummy which often causes wind?

Ellie.

[Clevblue]

I'm having trouble over the last week as my swallowing is worsening. So not eating enough but can't stand the ensure. Sounds like I'm between the devil and the deep blue I suppose. Thanks for your advice, I will ask a dietician

[Clevblue]

Hi Clevblue,

I have not got much experience of Peg feeding but if your stomach is quite empty then it will have air in that might be in the wrong position when liquid is put in through the Peg.

You could try some water first, perhaps as much as 200 ml and move around a bit before the Ensure.

You could try another brand such as Fortisip but I think that might well be similar.

If you need the food and your nutritionist is playing hard to get, speak to your specialist team, GP or Mnda connect,

Love Terry

Thanks, I'm seeing the speech and language lady tomorrow, so will get her views

[Ellie]

Clev,

I empathise with your tummy troubles. Please get someone to ring your clinic or MND Nurse to get a solution for you.
Losing weight/not eating isn't good for you - sorry, I don't mean to sound harsh! Sorry too for butting in on the MND Connect thread, they aren't online at weekends, so thought I'd reply to you. (Terry, like all cats, has no manners )

Ellie x.

[Terry]

Hi Clevblue;

The chimp is stamping her paws again! so harsh, but I'm with her just this once, you can't afford to lose weight over not having enough food.

Doubt that your speech and language therapist can be of much help so try other avenues first thing tomorrow if you can.

Love Terry

[GrannieAnnie]

Hi Clevblue. Sound advice from Ellie and Terry. I lost two stone and its hard to get back. I was on Fresubin 2kal drinks with a 5kl shot through the day. Eventually I've gone over to full feed and it's no problem. Fingers crossed as I say that. You need a dietitian pronto to sort out a routine that works for you. I think you are trying to take your drink on an empty stomach. Get on the case tomorrow as Terry says xxx

[Clevblue]

Thanks Ellie, Terry and Grannie. I will follow your instructions and let you know what the experts say, cheers all

[Terry]

Hi Clevblue;

I assumed that you were putting it through the feeding tube. If this is not so, you can get fruit based food drinks, they don't feel milky.

Love Terry

[MNDConnect]

Dear Clevblue,

I am sorry to hear you are having problems with your RIG, resulting in you having some very unpleasant symptoms.

We would suggest that you contact your dietician to discuss the problems you are experiencing. In the meantime your GP may consider giving you alternative medication to the Omeprazole and Peptac you are currently taking. The dietician may be able to suggest a different brand of feed that may contain different ingredients to the one that you are currently using, they may also adjust the rate and timings at which your feeds are being given. There are other things they will also look at such as how you are positioned when having your feeds.

If you do have any difficulty getting through to your dietician, then please do let us know and we can try contacting them on your behalf.

I do hope this information is helpful.


Kind regards,
Prachi

[Tim-griffiths]

My wife has ensure and we were informed to flush the peg with 50 of water, then use the ensure, then flush again with 20, and do this everytime you tube feed, hope that helps