Elemental feed / tube helpppppppp ?

[happyrebel]

Last week i went to see my dietition to get me started on ( orally ) taking an elemental diet . I was supposed to drink 1 carton the next day , 2 the day after that and so on so by now i should have built up to the reccommended 8 cartons a day with no food being consumed . However i can still not manage even half a carton !! :frown: It tastes really awful and it just makes me feel sick . I have tried and failed the diet before during my last flare up , i even had a ng tube but i hated that , too and really dont want one again !

I belive an elemental diet is my best shot at remmisson , as high dose and IV steriods , and antibiotics have been unsuccessful this time , and i am unwilling to take Imuran and my doc's aren't really willing to give me infliximab . :yfrown:

Anyways , enough rambling - my question is : would it be possible to have a temperary tube in my stomach ( not sure what these are called ??) to have the feed in , or possibly TPN as a last resort ? anyone had any experiences with either of these ?? :confused2:

Thanks ,

Lucy xxx

:sign0085:

 

[kello82]

hey lucy
ive never been on the elemental diet, ive only had a couple cartons here and there as a supplement, but from reading some other people's experiences with it, do you know to drink the stuff really slow? it seems like its really hard on your tummy if you gulp it down, but much easier if you sip each carton over a half hour or so.
i hope im remembering that correctly....

someone who has been on the diet before will probably come in and be able to answer more questions, but i figured id throw that out there.
good luck!

 

[beth]

I really struggled with the Elemental too. Started on the orange and pinapple flavour and that tasted like puke. Later found the Summer Fruits flavour much better - tasted more like yoghurt. And I discovered that by decanting a carton into a bottle and making it up to 400ml with water, ie just under twice the volume, I could then manage to sip it (one sip at a time) over a couple of hours or so without it making me feeling too unwell, or coming out the other end. Kept it in the fridge at all times - quick sip and back in the fridge. Think I managed about 4 cartons a day like this.

 

[tracyandkevinp]

Hi, I've just started Elemental feed through NG tube with a pump at home, supported by community dietetics team. I've been told I need 10 cartons daily to go through the feed bag which means I have to keep the pump running all night and four+ hours in the daytime at a rate of 150ml per hour. Does anyone know if it is safe to run the feed through faster, and if so, should I increase it gradually or just go for it?

 

[SupportiveMom]

When my daughter was on EEN her speeds were 333 ml per hr (so 250 ml in an hr.). When we went home, the pumps that are given by the community nursing support max out at 250 ml per hour. So yes, you can go faster than the 150. Just increase the speed gradually, like day 1, bring it up to 175, if no issues (like vomiting, nausea) day 2 try 200, etc.

Do you have a nurse that comes in to check you? I would also discuss with her/him & your doctor too in case there are other issues.

 

[Clash]

My son is on EN and he takes 7 cartons a day. He is 17 and inserts the tube every evening and removes it every morning. His GI didn't want him to get it at too high of a speed due to the faster feed inducing nausea. So he stays about 180. He tried 200 but it made him sick. The nutritionist and GI said he could adjust as he saw fit.

 

[Spooky1]

Lucy, the tube is called a PEG tube (percutaneous Endoscopic Gastrostomy) and these can take months to settle down. I would advise that you can make iced lollies with some elementals or you might pop ice cubes in the drinks. They are rather yuk, but ensure, which is dairy based, taste better if you can tolerate dairy.
good luck,
Diane