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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Starting elemental diet


01-11-2016, 12:39 PM   #1
Kat123
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Starting elemental diet

Hi all,

I'm just starting an elemental diet (E028) and I'm struggling a bit. I'm looking for words of advice and encouragement.

My dietitian said phase it in over three days, reducing down one main meal each day, which I have done, so today is my first day of being on it totally. I've got the ready-to-drink cartons, and I'm to take 8-10 per day so I had 1 on Friday, 3 Sat, 5 Sun, aiming for 8 today (so far I'm on 6).

My problem is I'm not feeling great on it - really weak and light-headed, (and super-grumpy!) even though I'm having the right amount. I'm also having to mix it with a lot of water so that I don't get loose BMs. I tried drinking it less dilute but still sipping water inbetween, but I didn't like the effect of that(!) so I've gone back to tons of water again. I'm peeing for England and I'm having to drink it constantly. To get those 6 in me, I've literally been sipping at it continually since 7am this morning.

Will it get easier than this? Will my gut adapt to be able to cope with the solute load so I can take less water? Will I get to have gaps where I'm not drinking it and not feel rubbish?

I've committed to 6 weeks and not sure I can do that if I feel this rubbish. Any advices welcome
01-11-2016, 01:09 PM   #2
my little penguin
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Ds drinks 8 a day for Gastroparesis when it's flaring
His is premixed ( peptamen jr )
He drinks two at a time
One set for breakfast lunch and dinner and then two for snacks a day (2000 calories )
He uses a straw due to bad taste
He does drink quickly thiugh finishing two in 5-10 minutes
So it can be done
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01-11-2016, 01:34 PM   #3
Kat123
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Thanks My litte penguin,

That's pretty much what my dietitian told me - take 2 each for b/f, lunch and dinner, and the others for 'snacks'. It's great he can drink them so quickly and contain them in mealtimes. I guess he feels ok between mealtimes too? Currently I start to feel lightheaded if I stop drinking them.

Peptamen jr is peptide based, right? Not elemental. The solute load is 255 mOsm/L vs. 678-725 (the flavours differ) for E028.

Can people manage to drink the elemental ones quickly, or will it always cause diarrhoea?
01-11-2016, 01:35 PM   #4
Kat123
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Taste is not the problem for me. Yeah, they don't taste great, but they don't make me gag and it's not too bad. I'd rather not have them in my mouth constantly though!
01-12-2016, 04:26 PM   #5
Kat123
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Been feeling rubbish again today, and thinking of giving up on it, though I feel like a failure. Have got liquid stool now too. I'm just not seeing how that's going to help my fistula.

Did anyone else feel bad on them at the beginning and then persist through and it was ok? I'm hoping to speak to the dietitian tomorrow and really I'm just wishing she'd say, no, it's not going to help you, you can stop.

Feeling very sorry for myself
01-12-2016, 04:29 PM   #6
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Thinking of you kat xx
01-12-2016, 08:38 PM   #7
Optimistic
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Kat - I'm so glad I read this.

Hats off to you for doing this. Please celebrate each day you move ahead. My son started EEN reluctantly and my husband decided to try it with him in the beginning to encourage him. I will be completely honest. Both of them look back on that first week as pure hell. My husband said he never felt so bad. Ever. My teenaged son, the patient, saw the nausea and fatigue, along with the emotional drain of feeling like a failure, lessen within a week and eventually he was better than ever. Now, a year and a half later, he actually drinks a minimum of 4 per day, voluntarily. He rarely thinks about why he is doing it bc he feels so much better than he has in years. He just told me if you lived within driving distance he would come over and drink with you!

I look forward to hearing your own success story. You can do it. Focus on one canister at a time.
01-13-2016, 04:12 AM   #8
Kat123
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Thanks Optimistic,
I read your message at 4:30am when I woke up, and they motivated me to go down to the kitchen to get another carton of drink to sip on. I went back to sleep after!

Still not feeling great this morning, but a bit brighter being a new day. I do think I should give the treatment a bit longer, but I'm concerned I'm currently not able to function adequately on it. I'm a mature university student and I ought to be working on assignments, but I'm just sitting around feeling miserable and drinking these drinks seems like a full-time job.

I'm also concerned I'm never going to be able to meet my nutritional requirements on it. I'm normally a very active person, doing bike rides of 3 hours+, which burns a lot of energy. Yesterday a short walk nearly killed me. I had a small operation in December on my fistula and I want to be recuperating and building up strength again. Instead I feel like I'm getting weaker through these drinks.

I'm not in flare. I have quiescient colitis, and no small bowel involvement. I'm doing this to try to help the perianal fistula along with my other meds (Azathioprine, Humira, Pentasa, and Metronidozole currently). The evidence that it could help is scant, and I'm just wondering if it's worth it to make me feel so rubbish.

It's reassuring to know that others have been through the same thing and come out stronger the other side though, so thank you. Please thank your son for his kind thoughts too.

xx
01-17-2016, 12:22 PM   #9
Spooky1
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I used to put the carton of 028Extra in a pint glass and fill it up with water. It still gushed straight through. It can be a pain, but I think those that have not had any surgery tend to cope with it better.

Can't believe MLP's DS swigs them back just like that. I too would be on the loo in no times whatsoever. I have a Tube through my abdomen and a pump system that puts it in at a slow rate. Any change in diet, no matter what diet, can make you feel very different until you adjust to it.

Hard to envisage the 3hour cycle ride with fistula! Like, OW! I haven't had a fistula for a while myself so we kind of forget. For some people the bowel motion is very much liquid in, liquid out. But I would imagine you should start to tolerate it if it's the last part of your bowel.

Try and keep at it for 3 weeks and very good luck.
01-17-2016, 07:59 PM   #10
Kat123
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Thanks Spooky for your advice and encouragement. It's actually a little late now as I gave up the same day after posting the last message, so I was only on it for 2.5 days total. I didn't feel like it was worth making myself feel worse for, especially given that there's little evidence it can help in perianal disease.

I do feel bad for giving up on it so soon, but the thought of going back on it again makes me feel very bleak. I expect I would have adjusted to it, but I think I'd need to completely clear my diary for 2 weeks to try it, and I'm not able to do that right now. I need to feel well to be able to study. The dietitian I spoke to wasn't able to tell me if I would get used to it and feel more energy, or whether the liquid stool was likely to persist.

I feel much better now I've been eating again for a few days. I think for now, I'm just going to focus on trying to get stronger again, and try not to feel guilty about stopping the drinks. I'll know in March/April when I get another MRI whether the Humira is having an effect. Maybe I can re-think the diet after that if I need to.

Riding a bike with the fistula for me is not that bad. I put an adhesive dressing over it and take a couple of paracetamol if it's a longer ride. I'm hoping to get back to it in a couple of weeks but am doing indoor cycling for now.

Do you mind me asking how you got rid of your fistula? I wish I could reach the point where I could say I haven't had one for a while!

Thanks again for your support.
01-18-2016, 07:16 AM   #11
Spooky1
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I'd agree you need the right time and place to start this elemental stuff. Don't harangue yourself over not doing it. I can remember putting fabric plaster over mine to pull it together but the steroids at the time seemed to help as did changing my diet. Basically I only get fissures these days. They still come and go as they wish. You have my sympathy as I know the issues.
01-18-2016, 04:01 PM   #12
Kat123
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Thanks Spooky
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