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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)
 
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.
 
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.
 

Tesscorm

Moderator
Staff member
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
 

Spooky1

Well-known member
Location
South Northants
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.
 
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
 
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.
 
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...
 
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.
 
I think usually yes. Though i was able to order it online without a prescription from drugsdirect.com, which is a UK based pharmacy.
 
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!
 
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
 
@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.
 

Spooky1

Well-known member
Location
South Northants
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?
 
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.
 
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.
 
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.
 
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 ;)
 
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 I’d been down the route for steroids, immunosuppressives etc - the usual IBD drug treatment path - I just kept ending back up in hospital.

I’ve 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 that’s kinda where I am currently.

Helena101 - a few questions for you as I haven’t 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?
 
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!
 
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
 
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.
 
Hi helena101,

I’d 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 don’t fancy going back to the days of azathioprine. But I’m thinking why – I only want to keep myself well – 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 I’m happy. 1800 seems quite high – is there a difference in levels for Europe?

Technically, I’ve finished testing, and for me wheat and dairy were both ok. I think, as Professor says, it’s 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 weren’t 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 it’s not always obvious at the time. It was only apparent when I was looking over my food diary, talking to mum and going “that was a bit out of sorts...I think that was a reaction!!!”

After all this I don’t think I’ll ever eat out in a restaurant again – it’s just too risky!

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

And I’m going to be frank – 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 it’s worth setting up a new sub-forum under treatments for LOFFLEX and to put all threads there? As I feel there’s so many experiences with immunosuppression but next to none with the LOFFLEX diet.
 
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?
 
It sounds as though you are doing very well! What foods are you avoiding at the moment? Did you retest all the foods that seemed to bother you, to confirm whether you did indeed react to them? Did you test each new food for 4 days, or longer?

1800 is very high for calprotectin! My result was >1800, meaning that the lab is able to read levels up to 1800, and I was above that level. I send my samples to a lab in the UK that the Professor recommended, and normal is less than 50. Something WAS up though with the lab at the time, as I definitely had some symptoms (near-liquid stools) but I wasn't SOOO ill (only one BM per day, and feeling completely healthy in all respects other than the BMs), and subsequently Professor Hunter had his patients send their samples to a second laboratory for a period of time so that the first one could tighten up it's technique of measuring calprotectin. Apparently several other of his patients had strange readings at that time. All of this was unfortunate for me, but still, given my symptoms, I was clearly not doing that well without the asacol, even if there was some inaccuracy in my calprotectin level.
The Greek equivalent of the NHS doesn't pay for any of my treatment, neither elemental nor calprotectin tests, nor of course my trips to see professor Hunter. So, I can do calprotectin tests as often as I like, but I have to pay for it.
That's interesting about your reactions not being only loose stools. I am back on lofflex now since January due to the pregnancy, and if my next results are good I am supposed to restart food testing. I was on 2.4g asacol per day for this entire three year period, I currently am on 4.8 because I had mild symptoms during pregnancy and a raised calprotectin afterwards. So I will pay more attention to things other than just my BMs when I start testing foods again.
I know what you mean about being terrified to eat out. This does make traveling very difficult, and even socializing is tough.

You asked about my BMs: 99% of the time they are perfectly formed. I go like clockwork after breakfast and I almost never go more than that (maybe twice a year I have 2 BMs in the same day). It doesn't really vary very much. Sometimes they are softer, which sets my alarm bells ringing, but in general formed, firm, one per day.
According to Prof Hunter, during pregnancy his patients usually do well, and can eat foods they couldn't tolerate previously. After pregnancy the opposite may be the case. So yes, my current high readings are almost certainly hormonal, but crohns can have a momentum of its own, and there is no telling whether my crohns will settle once my hormones do. So I have to keep things under tight control. I am getting another calprotectin done this week, i expect the results to be in by Friday, crossing my fingers it's better than last time. (I had 302 three weeks ago, when I have been consistently below 50 for AGES now). Well done on the 40, that's terrific! It took me a long time to get down to below 100, the entire first year of treatment I was around 150, and only afterwards settled at lower levels.
I have a local GI in Greece, as I can't exactly get on a plane to see Dr Hunter for every issue that comes up. He is just a regular GI though, who believes in drugs not diet. However he has been happy enough to take a back seat and let me try my dietary strategies, and he is there for checkups and should I decide I need to go the azathioprine route. I may decide to schedule one more visit to see Prof Hunter before he retires.
I agree with your suggestion about starting a lofflex thread. There aren't too many people on the forum who have tried this diet and been successful, maybe about 4-5? Still it would be helpful for those searching for an alternative to immunosuppressants and steroids, or for those who are in the early stages of the diet and need feedback and advice. Take care, and well done, it sounds like you are doing really really well. :)
 
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.
Unfortunately, I have no choice but to either eat cold or reheat my rice as I work full time and only have access to a microwave at lunch. No other way to do things. But I guess I can note in my food diary if the food was fresh or reheated.

I have been checking my dairy-free products. I got Soya Cheese yesterday, but can't have it because it has maize starch in it. :( I guess I will have to wait there.

I am transitioning slowly and will also still be having half my diet with via EN as agreed with my dietician. I know that I am probably not following the LOFFLEX diet religiously, but due to my circumstances I am doing the best that I can.
 
You can actually cook rice from scratch in the microwave. It takes about 9 minutes to cook a portion. This will mean that you will be using the microwave for a long period of time though, which your colleagues may not appreciate. I ended up buying a small rice cooker and bringing it to work, I could quickly throw in rice, water, salt, a carrot or some broccoli and let it cook at work. Just an idea if you suspect the reheated rice causes problems. That's great that you are working with a dietician to help you along, and that you are transitioning slowly to solids.
Good luck!
 
Well, I think this is the end of my LOFFLEX journey, sadly. I ended up with a blockage yesterday after eating some tuna and a baked potato. So painful. Didn't go into hospital in the end, managed to see it through at home as it wasn't as painful as my previous blockage.

Unfortunately I think it's time to move onto something stronger. My fecal calprotectin came back as 600 before I started food (so whilst I was on the EEN), so it's just not going to work out for me.
 
So sorry to hear this... :(
I am not sure how well EEN worked for me either, my faecal calprotectin came back at 995 whilst on EN. Luckily I didn't find out till much later, by which time I was feeling much better. It took me another 6 weeks of the full elimination diet (adding foods in one at a time, as the full lofflex diet didn't agree with me) for my calprotectin to go down to 150. I am not suggesting that you do this, of course, and with the horrible pain you must have experienced it probably is time to move up the drug ladder. There is no harm in continuing with the lofflex diet as well though. It certainly can't harm things, and maybe it can help.
 
It sounds as though you are doing very well! What foods are you avoiding at the moment? Did you retest all the foods that seemed to bother you, to confirm whether you did indeed react to them? Did you test each new food for 4 days, or longer?
Hi Helena,

Well I haven’t retested any foods yet. I’ve been well on what I’m avoiding so hoping can stay that way. Yep, 4 days apiece, twice each day.

I’m hoping the calprotectin was normal?

At the moment, I’m avoiding: yeast, wine ( as the manufacturing process includes some yeast fermentation), nuts, apples, oats, citrus and eggs, banana, tea.

What portion sizes did you use to test foods? As I was never really told, I estimated at trying roughly 100g per serving.

Yes, ok thank you, I go between 1-3 BMs/day, occasionally 4, but all formed.

Have you ever been told to take vitamin supplements over your three years?

But it’s strange, there has been one occasion that I had a looser motion, and couldn’t attribute it to the food, so unsure of it’s cause - possibly stress? But 99.99% of the time for me it’s all good.

May I ask, why are you considering Azathioprine? Professor is adamant that diet is the best form of treatment, and it’s been shown that Crohn’s is a food-related illness. Only the other day I came across a review of the book ‘The Complete Guide to Food Allergy and Intolerance’ by Professor Jonathan Brostoff where it stated:

“responses to food in Crohn's disease where an inflammatory reaction to food has now been directly observed with endoscopy (see p157).”

Which is something I don’t find many doctors openly admit.

Gemling - do you think it was a reaction to something in the LOFFLEX diet or maybe it’s been too early for you to get off the elemental diet? As for me, and as Helena mentioned above, it took a long while for the inflammation to properly settle and get under some sort of control.
 
I think 100g per serving is ok, but too much for oats and nuts. I take it you didn't also see a dietician that works with Hunter? With oats she had recommended 2 50gram servings, which was just about ok for me - but once I finished testing them I found I was best off with just a single 50g serving per day. I think with nuts she had recommended 2 x 30g servings, which again was double what I could eventually tolerate. For the fruit 100g portions are fine, for eggs just 2 eggs etc. But maybe the fact that I was having smallish servings of these foods sabotaged my attempt to stop the asacol. Maybe I couldn't tolerate them at all in fact, but with the help of a little asacol I could. Once the asacol was out of the equation I flared up. It's possible anyway.
I haven't been told to take vitamin supplements, but I do take vitamin D. Since I have been on lofflex throughout my pregnancy I have also taken supplemental calcium, as I am not having any dairy products.
I have had a few random issues along the way these three years, where 1-2 days, or even a full week, I suddenly have the odd symptom, and most often I can't really explain it through food.
Ideally I would like to manage my crohns with little to no meds. Wouldn't we all? But of course I am aware that this may not be possible.
I hope you have continued success on your diet!
 
Still no results on the calpro test by the way, I will post again tomorrow. Fingers crossed it's ok and I don't have to do EN again.
 
My results just came in at 227. So, an improvement from 3 weeks ago (302), which is the important thing. At least i seem to be getting better, not worse. Of course I would have prefered a lower number, but as it is things are too worrying.
 
I saw the dietitian during the E028 period, and then right after I'd finished testing most things. It's good to get a second opinion about the portion sizes, I think for oats I did 50-75g. The 100g is a rough rule I used, flexing it down where appropriate; for example, alcohol for me is 25mls x2/day. I just wanted to make sure I was getting enough of the food in question!

Maybe when you test again following the LOFFLEX, 'go to town' a little more so it's more definitive which foods you can cross off the list!

Well, on the positive side, at least the calprotectin is moving in the right direction. But, even though it is raised, are you still well? And is frequency still only once a day?

Professor did mention that he had a handful of patients who could not come off the mesalamine. But still, I'd rather stick with the Pentasa rather than some of the other options in the drug cabinet.
 
Absolutely. If I manage to stay well on mesalazine plus diet I will be very very happy.
And yes, I feel very well, fit, strong, healthy, and only one formed BM per day. It's looking like this was just a blip while my hormones readjust.
 

Spooky1

Well-known member
Location
South Northants
Wow, Helena, what good news. One BM per day, calpro test looking better and you're feeling fit and well. That's great news. I'm wondering though, I always had 6 - 10 days of nightmare BM's each month. No change in diet but just the change in hormones really changed things for the worst. Hope you don't suffer like that, and good luck with mesalazine and diet.
 
Thanks spooky1! I think it's pretty common for symptoms to worsen for women around the time of their period... Those hormones certainly can have an impact.
Take care,
:)
 

Spooky1

Well-known member
Location
South Northants
I swear it must be better to be a bloke if you have to suffer Crohns, lol. if I remember rightly I found the pill or the contraceptive jab even out my hormones and didn't suffer quite so much.
 
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