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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Should I ask for Elemental 028?


 
04-30-2014, 01:19 AM   #1
GreenwichUK
 
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Should I ask for Elemental 028?

I've been on pred for a week now but my weight is still nose-diving and appetite hasn't returned although my CD symptoms have calmed down.

I have to see my GP on Friday to get further pred but a dietitian friend suggested I also ask for supplemental Elemental 028.

Has anyone else asked for or tried elemental while on pred? Am I expecting too much after a week on pred? (which I'm meant to start tapering tomorrow)


05-01-2014, 09:00 PM   #2
SupportiveMom
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We have only done an semi-elemental off prednisone. How long were you on prednisone & what was your dosage?

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05-02-2014, 01:21 AM   #3
GreenwichUK
 
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Week two at 25mg, still no increase in appetite and weight is still falling. Seeing my doctor shortly though so going to ask if I can supplement with Elemental 028 to boost my intake.
05-02-2014, 07:08 AM   #4
GreenwichUK
 
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Advised against it as it's high in sugar and pred increases blood sugar but now seeing a dietitian so good news


05-02-2014, 10:43 AM   #5
SupportiveMom
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Good to know. I haven't ever used Elemental 028. I did learn something though thanks to your post. I thought Peptamen Jr was a semi elemental but I was wrong. It is an elemental. Now what the difference is is my next quest for knowledge.

Glad you are seeing a dietitian. It will help immensely.

05-03-2014, 09:27 PM   #6
Tesscorm
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Hopefully, your dietitien can give you some additional info. There are a number of formulas available - elemental, semi-elemental or polymeric and each type of formula would have a number of brands available.

If sugar is a concern, perhaps one of the formulas designed for those with diabetes would be helpful for you now??

Here's a link to Nestle and some of their formulas.

http://www.nestle.co.za/brands/supplements/nutren
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05-04-2014, 02:14 AM   #7
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Thanks for that, sounds like a good idea. Just don't seem to be able to get enough calories from eating at the moment
05-07-2014, 05:49 AM   #8
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Hi, Greenwich,
Some of us get too stimulated on pred. We lose weight when we take it. I'm one of those, and there are others on here who have the same issues as me and you with pred. It is early days. But if weight doesn't go on over the next few weeks, ask to come off steroids and go on a liquid feed. They might just be better for you than pred.
good luck.
05-07-2014, 12:34 PM   #9
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Thanks Spooky1. Waiting for a call back from my doctor as the side effects seem to be getting worse even though I'm tapering down


08-24-2014, 05:48 AM   #10
LewisS
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Just noticed this thread and was wondering if others have taken elemental 028 with pred, which I'm doing now. I take 40mg daily with 4 of the drinks and my weight is slowly increasing.

If you do, make sure you get the summer fruits. Orange is rank.
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08-24-2014, 10:45 AM   #11
helena101
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I have taken 028 with entocort. And then was able to wean off the entocort soon after. I agree, I liked summer fruits best!
08-24-2014, 11:22 AM   #12
LewisS
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How many did you drink a day? I have to have 4, with food. My GI said complete elemental works best in children, so for adult patients he tends to do low-residue diet with a mixture of both steroids and elemental 028.

He said I'd struggle to drink even 2, but I actually like them...
08-24-2014, 12:15 PM   #13
helena101
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I did exclusive EN, so I had 9 per day, no food, for about a month... I'm not sure how effective it was for me though to be honest... I still had symptoms throughout and for some time after, and my calprotectin test was very high. However, I had a fistula at the time which healed, and I was able to come off the entocort without issue. Since then I have been maintained on asacol plus diet, it's been three years now that I've been in remission. I am a patient of Prof Hunter, who believes that EN can be very effective for adults too, and that diet is often more powerful than drugs.
08-24-2014, 01:33 PM   #14
rollinstone
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Do you guys need a prescription for 028?
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08-24-2014, 01:37 PM   #15
helena101
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I think usually yes. Though i was able to order it online without a prescription from drugsdirect.com, which is a UK based pharmacy.
08-24-2014, 02:40 PM   #16
Spooky1
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Wow, Helena, what prices! did you honestly pay god knows how much each day?
08-24-2014, 03:01 PM   #17
LewisS
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I get mine on prescription. Not sure when I have to stop taking them, I think they were mainly for my weight/nutrition, but he said they do have a 'crohn's fighting mechanism' - not sure that that is!
08-24-2014, 03:49 PM   #18
rollinstone
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Sweet, well we have nutricia in Australia, usually a dietician refers you, well that's how it's worked in the past, iv never really tolerated en too well but iv never tried 028, that doesn't use corn so I think it's probably the best. I'm also just tryna put on some weight and get some nutrition on the days I don't feel like eating
08-24-2014, 07:56 PM   #19
helena101
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@Spooky1, unfortunately yes, it cost a lot of money. If I flare again (which it looks like I might be about to) I will try scd first, before EN, just because it is so expensive for me to do EN. Insurance in Greece (where I live) doesn't cover EN for adults.

028 does contain maltodextrin though, which many say is a no-no.
08-25-2014, 04:47 AM   #20
Spooky1
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Ah, now I understand, Helena. I had a friend in Greece and her husband was a pharmacist. The government wanted to issue bonds instead of pay the pharmacists for prescriptions. He just couldn't afford it. Salmon and potatoes is bland for me, however, I just saw a documentary by Norwegian environmentalists campaigning to stop all the crap they feed the fish. They recommend no one eats it. Now I've gone off that. Bit of turkey and potatoes?
08-30-2014, 12:50 PM   #21
gemling
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I'm on day 14 of EEN and taking 20mg Pred. But I am drinking Fortisips and Fortijuices. Sometimes I am okay, other days I feel pretty hungry. But all my Crohn's pains are gone, so I think it is working. Counting down the next 14 days, which is when I will run out of Fortisip/juices. But will be seeing my IBD team and Dietican next week and I'm sure we'll assess things then.

I am maintaing my weight on them. If you are loosing, then I think it would be worth seeing if you can get some kind of nutritional drinks prescribed to help suppliment your calorie intake see if you can talk to a dietician and discuss being on both Pred and the drinks. I am getting blood tests pretty regularly right now, so I guess they are probably keeping an eye on my blood sugar levels.
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08-31-2014, 11:45 AM   #22
LewisS
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I've had to order some more. Have to say since running out I haven't felt as great, so they were doing something beneficial. Plus, I actually really liked them. My weight has also dropped again which was steadily going up.
08-31-2014, 03:04 PM   #23
gemling
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Yes, Lewis. My dietician said they see longer remissions from people who carry on supplementing their diet with nutritional drinks for a few weeks after exclusive enteral nutrition then those who don't. So I think I will probably still replace one/one and a half meals a day with them for a little while yet. But at least I will also be able to eat other foods. It's driving me a bit up the wall not being able to eat anything. On Friday at work someone put a plate of sausage rolls and quiches on the desk behind me for someone, so I had to sit there for ages smelling them. Ugh.
08-31-2014, 03:52 PM   #24
LewisS
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D: That's real determination! I'd have probably grabbed one haha.

I think once I get them, I'll probably start replacing lunch with a couple because I feel I've overdone it a little lately. I think oh, ice cream is low residue *eats entire tub*. Not good. I had a huge appetite before pred and now it's through the roof lol. Today I've kept it sensible managed to keep it sensible though
09-08-2014, 05:39 PM   #25
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I did exclusive EN, so I had 9 per day, no food, for about a month... I'm not sure how effective it was for me though to be honest... I still had symptoms throughout and for some time after, and my calprotectin test was very high. However, I had a fistula at the time which healed, and I was able to come off the entocort without issue. Since then I have been maintained on asacol plus diet, it's been three years now that I've been in remission. I am a patient of Prof Hunter, who believes that EN can be very effective for adults too, and that diet is often more powerful than drugs.
Hello all,

This is my first post to the forum, and I thought I would share my experience with the E028.

Like Helena 101, I am also a patient of Professor Hunter, and I have been treated using the LOFFLEX diet.

While Iíd been down the route for steroids, immunosuppressives etc - the usual IBD drug treatment path - I just kept ending back up in hospital.

Iíve been doing the diet for 6-7 months now, having spent if I remember correctly, 17 days on purely the elemental 028 feeds. Then I started the LOFFLEX and then onto the reintroduction of food. And thatís kinda where I am currently.

Helena101 - a few questions for you as I havenít really met anyone else who has tried the diet pathway:

Have you ever needed other meds during your three years of remission?
How often do you test your calprotectin?
09-08-2014, 07:06 PM   #26
helena101
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Hi mcman,
I hope you are doing well with your current treatment, it sounds as though you are?
I have been testing my calprotectin levels once a month for the better part of these three years. Once every three months is what the Professor recommends once stable, I am usually too nervous to leave it that long...
I have had really good results from this treatment BUT not perfect. I never managed to stop taking asacol. I tried twice and my calprotectin went up to >1800. I also didn't really have any obvious food reactions, even though I tested each food for a week. I do avoid certain foods, some of which seem to cause mild symptoms (milk, coffee, too much fat or fiber), others I keep to low quantities (nuts, onions), and some I avoid just to be on the safe side (gluten grains, corn) even though I didn't really seem to have any negative effects from them. I can't say I'm 100% sure this treatment has worked for me, or if perhaps I am just a mild case and the asacol is keeping me in remission. I don't dare change anything though...
I just had a baby 3 months ago, and my calprotectin was a little higher last month. I am hoping it resolves itself, but if it doesn't I am considering starting EN and food testing all over again. I am crossing my fingers it doesn't come to that.
What phase of food testing are you up to? What are your calprotectin levels like? Are you feeling well? What meds are you currently on, and have you discussed a plan of when to start reducing them? I too am starving for feedback from successful patients of Prof Hunter, this will give me courage should I need to start back at square 1!
09-09-2014, 04:30 AM   #27
gemling
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I've just been given the green light to eat food again, but my dietician has suggested trying the LOFFLEX diet. So I am giving it a go. I've got soya milk, yogurt, cheese and dairy free margarine/spread along with lots of rice, rice noodles and potatoes ordered to be delivered tonight. :-p
09-09-2014, 04:44 AM   #28
helena101
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Great! Best of luck and keep us posted on how you do! Just some things that spring to mind to help you along the way:
Make sure that all the dairy-free products (the yoghurt/cheese/spread) don't have any other non-lofflex ingredients.
Rice Krispies are an easy breakfast food or snack that doesn't require any cooking.
It is important to have your rice and potatoes freshly cooked (not cold, not reheated) as the cooling process changes the nature of the starch and the way it is processed.
And finally, take care to transition gradually from EN to solids, I tried to just switch over from one day to the next, and it set me back, so I had to go back on EN.
09-09-2014, 03:45 PM   #29
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Hi helena101,

Iíd love to test my calprotectin that frequently, but unfortunately as current NHS guidelines state that calprotectin is used in the diagnostic process and not for monitoring, my GP practice is being a bit funny. Blood tests are used for monitoring, and I donít fancy going back to the days of azathioprine. But Iím thinking why Ė I only want to keep myself well Ė the small cost of a calprotectin test is much cheaper than an A&E admission if things get out of control.

I did one through the nurse through and it came back as 40. So Iím happy. 1800 seems quite high Ė is there a difference in levels for Europe?

Technically, Iíve finished testing, and for me wheat and dairy were both ok. I think, as Professor says, itís important to note that ANY reaction can take place to problem foods. So for me, as well as loose stools, I had an urticaria-type reaction, painful joints (knees, lower back), and just a slow bowel (i.e. I became bloated and things just werenít moving...took a couple of days to settle) as alternate symptoms suggesting a reaction. I think I remember Professor saying that mouth ulcers are another common symptom.

So I was really quite careful over what caused a reaction, and itís not always obvious at the time. It was only apparent when I was looking over my food diary, talking to mum and going ďthat was a bit out of sorts...I think that was a reaction!!!Ē

After all this I donít think Iíll ever eat out in a restaurant again Ė itís just too risky!

How much Asacol are you taking? 2g? I was on 4g/day of Pentasa, and Iíve cut that down to 3g/day for 1 month, and now 2g/day morn and eve. And Iíll stick on this a while until my next appt.

And Iím going to be frank Ė what are your bowel motions like? How many times do you go? Are they formed now following this treatment? Or does it vary still?

Congrats on your new addition. Would the change in hormones cause the calprotectin to rise?

And do you think itís worth setting up a new sub-forum under treatments for LOFFLEX and to put all threads there? As I feel thereís so many experiences with immunosuppression but next to none with the LOFFLEX diet.
09-09-2014, 03:54 PM   #30
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May I also ask - Professor is retiring - and as much as I don't want him to, do you know who, if anyone, is going to take over your care?
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