Share Facebook
Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental 028... HELP!


 
02-10-2011, 06:08 PM   #31
supercellbaebe
Senior Member
 
supercellbaebe's Avatar
 
Join Date: Jan 2011
Location: London, United Kingdom

My Support Groups:
Oh Jan, it makes me so sad to read your message, I really feel for you. Elemental has saved your life, but I know how awful it is when eating seems a million miles away and its all you want to be able to do.
Sweety, you've done so well to get as far as you have in spite of it all, you should be so proud of yourself.

One thing I will say though chick, I know you Doctor said you will never eat again. But I've heard doctors say things like that before, you can't always take what they say seriously. Never give up hope that things will get better, things can ALWAYS get better no matter how bad they seem.

I'm on the elemental 028 at the moment, I'm suffering from a lot of bloating and great discomfort on them. I don't understand why they do this to me! I've managed to get it up to 5 a day but I feel so uncomfortable ALL the time. Does it do that to you ever?
Also I am so badly constipated it is unbelievable! I haven't been in weeks! This is worrying for me, are you supposed to have poos on the Elemental 028 diet? Do you get constipated?

Another thing I wanted to ask you, what do you make of the flavors of 028 elemental? I have only the cartons, I can't use the sachets. But the cartons taste foul!

Summer Fruits - rancid, metallic, chemistry experiment gone wrong
Pineapple and orange - sickly, sweet, syrupy, puke
Grapefruit - sour, bitter, medicinal, monstrosity

Any tips on how to make these things any more palatable? I just don't get why SHS makes them taste so utterly foul, surely they can do something to improve the range of flavors and taste? lol! I'm just ranting now!

You take care lovely and be strong.

Big Hugs



xxx
__________________
Heidi xxx

http://www.facebook.com/album.php?ai...heidi.whurrzal

Lived on and of Elemental 028 Extra Cartons for 3 years

eating again, but getting vile symptoms

Last edited by supercellbaebe; 02-10-2011 at 08:42 PM.
02-11-2011, 09:00 AM   #32
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
I have been back to "normal" food since my fun in 06 with the elemental but as I said do use it intermittently. My asthma and allergy consultant is the one that wants me on it for life not gastro ironically. I told him to take it and set the example and I would follow suit, he came back with "I'm not the one that needs it!". Grrrr.

I will get there in the end like you say and just like everything it takes time and patience.

On the drinks front I have had it suggested to freeze the cartons so they are more like a sorbet which I havent tried yet. I tend to stick to the orange and pineapple only and then use citrus powder and orange powder sachets. To me the orange sachets are a bit like drinking orange juice in the morning. It is very much an aquired taste but I actually find I crave the 028 when I am unwell and find it quite funny at times.

It may be there is something in the 028 that doesnt agree with you or you could be gulping alot of air when drinking them so watch that one. Regarding constipation.... elemental is designed to be absorbed in the first metre of the small bowel so there is no "poo" and the remainder of the gut gets a rest and a chance to heal and repair along with you getting the full absorption of the nutrients you need. Some folk however like me dont fully absorb the drinks and I always had a very very small amount of green poo each day which I was also told was ok. So in relation to being constipated you may not actually be. The other thing I would say is how much water are you drinking? Keep in mind we get approx 70% of our fluids daily from the solid food we consume. Work out how much you are drinking with the number of cartons you are having and any other drinks on top. My dietitian told me I needed to have the equivilent of 10-12 cartons a day - could only every manage 8 and then had to drink another 2lits on top of water. I also discovered whilst in hospital and they ran tests that whilst on elemental they couldnt keep my potassium levels up and once sorted out I felt better. So blood tests every so often are important too. Thats where a good gastro team is very important and a good dietitian as I mentioned previously.

Was thinking about your GP's comments regarding getting off the elemental. Some GP's are against the drinks as they are expensive for their practice. When I lived in Cambridgeshire until 18mths ago I had no probs at all. Now I live in Leicestershire its a different matter and my GP said he wouldnt want me on them more than 2mths at a time or he would have to investigate the cost with the PCT. However, I am unsure now that the PCT's are being done away with how that will affect the above once the GP's hold the purse strings completely! Me thinks not good for me in relation to elemental! Time will tell. Am just going to get on with it and keep my head below the parapit for as long as possible.

Hang in there and keep asking and poking them for support and answers! Dont let them beat you into the ground. It may be you need a different type of elemental or something like modulen prescribed. Keep exploring things as we are all very individual. You know what my asthma and allergy consultant thinks. My Dermatology cons wants me off all food additives like E numbers and dyes etc. At one point I was down to 6 veggies and 1 fruit! My decision now is which path to take and it will take time for me to work through it but I will manage fine.

Thinking of you. ((hugs))
__________________
Jan

IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
02-11-2011, 12:22 PM   #33
supercellbaebe
Senior Member
 
supercellbaebe's Avatar
 
Join Date: Jan 2011
Location: London, United Kingdom

My Support Groups:
Gosh that is odd that you GI isn't the one pushing you to stay on Elemental 028, you know your body better than anyone so I think going with your instincts as far as food is the best thing to do, and by the sounds of it that's what you've been doing.

Thank you so much for putting my mind at rest as far as the pooing side of things go. Nobody has ever explained to me about how these drinks actually work, I must confess I now don't feel so panicky about not going!

It seems your new GP is similar to mine, these drinks are very expensive and tight fisted doctors surgeries are probably not a fan of folks with IBD and IBS who have to have these drinks. The thing is though, what choice do we have? We HAVE to be fed, otherwise we will starve. Stopping the drinks for someone who needs them, just because of money is nothing short of evil, I'm sure you could complain if your GP ever refused to give them to you. I know if my GP stops my drinks I'm going to contact my local MP and write to the health secretary, its just not on.

I do try very hard to drink enough, its hard to know if you are or not and I always feel so bloated I often don't want to drink, but it is important, you're right about that.

I've read somewhere that you shouldn't freeze elemental Formula though, I'm not sure why? Maybe it ruins the nutritional content? I did start freezing them but reading that has concerned me so I'm not going to do it anymore.

Thanks so much for such an in depth response chick! I really hope things go okay for you. You take care xxx
02-11-2011, 12:40 PM   #34
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
It was actually the gastro ward staff and dietitian that suggested freezing them believe it or not lol. The other thought I would have on the bloating is you will always feel bloated the less you eat or drink and then try to increase it. You need to work out a plan where you increase very slowly over a period of time and allow your body to adjust. I know going from elemental to trying to eat again for instance was a huge step and I had to persevere with the rumblings and bloating initially as my body got used to solid food once again. Its working out what your body can manage and what it cant. Thats where my dietitian came in, she was fantastic. As mentioned in the thread earlier by one of the girls the LOFFLEX is an option and it was designed by the Addenbrookes teams I am under as a stepping stone to eating again but going for the foods that are least likely to impact or upset. Its all about listening to your body and striking a balance overall and it can drive you crackers at times as you end up over thinking things too instead of giving them a chance.

Anyway, do what you feel is best for you. Thinking of you.

Last edited by soupdragon69; 02-11-2011 at 12:44 PM.
02-11-2011, 02:40 PM   #35
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
Well, I see that I am way behind on this thread. Really good discussion super and soup.
Stacyface: Well, I hope that I helped. Thanks for the thanks.

super: Mindfulness is something that I just re-discovered myself! I got some really good advice about trying a practice that an exiled Vietnamese monk, Thich Nhat Hanh, teaches. It is called "Meditation on What is Not Wrong". If you google his name and the name of the practice you'll find it. Two weeks ago I had a setback with some symptoms that returned, so I tried this practice and it really helped me turn my thinking around. Let me know what you think about it. Also, I and some of my family members have had some difficulties with anxiety in the past. A really good book that all of us have used (different sections of the book have applied to each of us) is The Anxiety and Phobia Workbook by Edmund J. Bourne. It has lots of info and many exercises that a person can do on his/her own. It really helped me and I was able to convince my husband to work on his issues by reading sections of the book to him!

I also have fewer BM's on the elemental diet - every 7-10 days.

Thank you for your kind remarks to me.

soup: It is great to read your story of past success on the elemental diet, but I am sorry to hear that you are needing to make a big decision with regards to eating right now. I had not expected to be on the elemental diet for as long as I have (9 weeks) and expected to start eating twice during this time. After my recent setback, because of my disappointment in not being able to resume eating, I just had to take it drink by drink to continue on it. Then because I started feeling better again on the elemental diet, I was reminded why I was doing it in the first place, and it became easier to just make it part of my routine again. If you do decide to start on an elemental diet again, perhaps you can just think about the next serving instead of looking at months at a time?

Because I am in Canada, I am only familiar with the Addenbrooke's regime through books and studies. You have experience with it; perhaps you could answer a couple of questions for me? When you resume eating on the LOFFLEX or full elimination diet do you prepare the food any special way initially. For instance do you blend it. It just seems weird to me to go from an elemental diet one day and then a serving of chicken or rice the next. Also are garlic and sweet peppers allowed on the LOFFLEX diet? Thanks.
02-11-2011, 02:55 PM   #36
supercellbaebe
Senior Member
 
supercellbaebe's Avatar
 
Join Date: Jan 2011
Location: London, United Kingdom

My Support Groups:
Soup Dragon, I totally get what you mean about just switching from say Elemental 028s to food, its a massive step and I dare not imagine the reactions of the gut to such a step...
I was actually wondering where to start with the introduction of food. I thought maybe a bit of chocolate here and there, or even try a few of those other Ensure Plus drinks. But what you're suggesting sounds good, I've never really looking into the LOFFLEX diet, but I've heard it mentioned a great deal. It sounds good because its kind of a one step along from elemental, only solid food isn't it? But as Happy mentions, it does seem like a bit of a big step to go from Elemental drinks to chicken and rice. I think juicing and soups sounds pretty good as well, on the other thread I posted someone mentioned juicing as a good idea. I might try it out. But One step at a time I think, slowly but surely does it xxx Just gotta see how the gut responds through trial and error I guess.

Wow Happy thank you! I am absolutely going to look up the book you mention and Thich Nhat Hanh, it really is incredible how powerful Mindfulness is when you are able to do it. I've been toying with it for years, but never actually learned how to do it properly, it really is only over the past few days I'm beginning to understand the idea of just "being" without judging. Its very very hard isn't it? Just something I'm not at all used to. I'm so used to looking for things to worry about in and around my body and trying to change them, that just sitting back and letting be is the hardest thing to do. But practice make perfect!

Again, thanks a million for those recommendations!

There is a book I have read which I found incredible, it is called

"Wherever You Go, There You Are" by Jon Kabat Zinn. I recommend it highly!

xxx

Last edited by supercellbaebe; 02-11-2011 at 02:58 PM.
02-11-2011, 04:18 PM   #37
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
Happy, I did try restarting to eat again twice several weeks apart and was in terrible pain. When I did start the LOFFLEX the very first meal I had was a plain grilled chicken breast and some steamed potato. Not appetising to most but boy did I drool! At the same time I was scared of eating it and what it would do to me and also it felt foreign in my mouth after so many months on elemental.

The aim was continue my level of drinks AND eat very small amounts, the dietitian told me they prefer it if you continue the drinks for up to a year after recommencing eating to ensure you keep getting the nutrients you need even though you reduce the drinks gradually. I found I couldnt tolerate salt, pepper or sugar at all initially and even now dont add salt to my food. You can add any natural flavourings as you go along but you must introduce them as you do any other food one at a time for the specific number of days.

They recommend you stick to the basics of the diet for at least 2wks before any changes of ANY kind.

I will hunt out my LOFFLEX book if I can and recheck it all ok?
02-11-2011, 06:09 PM   #38
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
super: I will check out that book. Thanks
soup: Thanks for the tips. It is very helpful to 'speak' to someone who's done this before.
02-14-2011, 01:19 PM   #39
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
Super: I hope that you don't mind if I ask Soup another question on your thread.

Soup: This is a delicate question regarding how a person knows when he/she is in remission on the elemental diet. The only symptom I still have is mucus in my stool. It is certainly less than I was having, but it is still there. It has also changed in colour from red-orange to orange-yellow to light yellow. Should I continue on the elemental diet for another couple of weeks in the hope that it will stop, or is this the best that I can hope for? What is your experience?
02-14-2011, 01:49 PM   #40
supercellbaebe
Senior Member
 
supercellbaebe's Avatar
 
Join Date: Jan 2011
Location: London, United Kingdom

My Support Groups:
Hello Happy! Don't mind at all! In fact just a few weeks ago I was experiencing exactly the same symptoms you are talking of. The Orange/yellow/red stools.

I found out what this actually is. It is malabsorption of nutrients, fat in particular. For some reason you aren't absorbing properly. Its common with IBD.

Unfortunately I'm not sure whether staying on Elemental will help or not, its odd because my stools are now coming out normal color, the orange/red/yellow just miraculously disappeared one day and hasn't returned. I really hope the same happens for you, but I was on the elemental diet with the red/yellow/orange stools and with now normal stools. So I don't think it has anything to do with the elemental diet, but I'm sorry I can't advise you any further.

I really hope all is well your end and you can soon go to the toilet without this issue, because I know how worrying it is when you see it and don't know what is causing it.

Big Hugs



xxx
02-15-2011, 03:38 AM   #41
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
Hiya Happy,

Good question to be honest. I never had the varying degrees of "colour". I only ever had small amounts green poo. On the mucous aspect if things are lessening then logic could suggest that the elemental is making a difference to you. What other symptoms did you have before the elemental that have resolved? Where abouts is your crohns? (If you dont mind me asking both of those - you can alway PM me if its easier).

To be honest happy it depends on how YOU feel in yourself. An extra couple of weeks if you can manage it mentally and physically would not harm you in any way and may give you the extra nutrient boost before attempting to eat again.

Am still hunting for my LOFFLEX book as I moved house since I last used it but I will find it that you can be sure of!!

Stay in touch. Thinking of you. ((hugs))
02-23-2011, 06:07 PM   #42
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
Hello super and soup.
It has taken me awhile to respond as I have had a respiratory virus that caused my asthma to flare, so I've been down with that. Aargh!

Thank you both for your help. I have had no change in my symptoms for the past three weeks, but my jaw has started partially subluxing which I believe is from the muscles not being used to chew. I also became quite dehydrated from the cold virus (runny nose, mucus in the lungs etc.), so my stools became difficult to pass and now I have hemorrhoids. And, lots of mucus at that end still.

So... I started eating again yesterday. I managed plain overcooked rice ~ 1/4 cup spread throughout the day. Today is plain rice cakes. It has not been the joyous celebration that I was hoping as, because I am still having the mucus, I am concerned that the other symptoms will return too. I have really not missed the pain, nausea, bloating, diarrhea, night sweats, occasional fever or rapid weight loss.

My disease is in the terminal ileum, soup. I was told that it was 'indeterminate' because I have signs and symptoms of both UC and Crohn's. This doesn't make much sense to me as my colon is clear.

How's it going, super? How are your asthma and your allergies, soup?
02-27-2011, 11:55 AM   #43
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
Hiya Happy,

I FOUND the book YAY!

I reread your post with the questions you asked me so here are the answers finally!

Below is what is printed in the front of my book:

This diet excludes all those foods which are most likely to cause food intolerance.
The diet must be followed until further notice (approximately 2-4 weeks).
Do not rush your meals, take time to chew food well and eat regularly - 3 or 4 meals per day. Ensure you drink plenty of fluid (8-10 cups daily).
If you need to take medication for headache or other pain use SOLUBLE paracetamol.
Keep a diary during this period recording food eaten and symptoms suffered. Enteral feeds such as 028 remain useful supplements if weight gain is desired or if the full range of recommended foods is not being eaten.

Will give you a summary of the foods etc: All meat, poultry, game, beef and lamb can be eaten. Avoid Pork and pork products and anything processed.

Fish - can have white fish, tuna, in water or brine, oily, smoked and other tinned fish in water or brine. Prawns. Avoid anything tinned in oil or tomato, pastes, taramasalata, scampi or battered or breaded.

Veg - small portions of the following WITHOUT skins, seeds or stalks (maximum of 2 portions a day): courgette, marrow, lettuce, cucumber, celeriac, potato (not cold), carrot, swede, parsnip, cauliflower, broccoli, mushrooms, peppers, asparagus, beetroot, runner beans. Avoid pulses - peas, beans, lentils. Avoid onions, sweetcorn, tomatoes, anything tinned in sauce, tomato ketchup and puree.

Fruit - small portions of the following WITHOUT skins or seeds (maximum 2 pieces of fruit per day). Apricot (canned or stewed), grapes, melon, peach (fresh or canned), nectarine, pear (fresh or canned), plums (stewed), mango (fresh or canned) lychees (canned). Avoid citrus fruit e.g. oranges, satsuma, grapefruit, lemons. Avoid apples, banana, dried fruit, mincemeat.

Cereals - White rice, rice pasta (not cold), rice cakes, ground rice, rice flour, rice krispies, puffed rice cereal, arrowroot, tapioca, sago. Avoid Wheat e.g. bread, cakes, biscuits, pasta, noodles, semolina. Avoid breakfast cereals e.g. weetabix, shredded wheat. Avoid Rye e.g. ryvita. Avoid Oats, Barley, Corn e.g. cornflakes, cornflour, custard powder.

Cooking oils - Sunflower, soya, olive, rapeseed (1/2 teasp per person in cooking). Avoid Corn and vegetable oil.

Dairy products - Soya milk (calcium enriched), Soya yoghurt, Tofu, Milk free margarine 1oz per day. Avoid Cows milk all types, dried milk, tinned milk, sheep and goat milk, butter, cream, margarine, yoghurt, cheese and eggs.

Beverages - Herbal teas e.g. rooibosh, rosehip, camomile or fruit teas. Ribena, fresh fruit juices e.g pineapple, grape juice. Tap or mineral water. Avoid Tea, coffee, decaf of both, fruit squashes, orange, grapefruit, lemon, apple or tomato juice. Alcohol. Coca cola, lemonade.

Miscellaneous - Jams (no seeds), sugar, honey, syrup, salt, herbs, black pepper, spices in moderation, vinegar, tamari, brown rice miso, gravy browning with caramel and salt only, sorbet (not citrus). Avoid Chocolate, nuts, seeds, gravy mixes, yeast and extract, soy sauce, salad cream and dressings, mustard, marmalade.

REINTRODUCTION OF FOODS

If you have no symptoms from your Crohn's after following the exlusion diet for AT LEAST 2 weeks you may start to re-introduce foods slowly back into the diet.

Each food should be TESTED FOR 4 DAYS UNLESS OTHERWISE STATED. Foods should be taken in a large quantity twice a day. If your symptoms do not return you can assume that the food you ate was safe and go on to add another food. If they did return, the new food was probably responsible and should be left out of the diet from now on.

If a reaction occurs it will usually last for 2-3 days, but may go on longer. During this time it is impossible to assess other foods accurately, therefore stick to foods already known to be safe. If the symptoms are very severe, 2-3 days on 028 or similar that you have been having will usually settle them. DO NOT INTRODUCE NEW FOODS UNTIL YOU ARE WELL AGAIN.

Once you have finished reintroducing foods into your diet and identified the foods causing symptoms, it is essential that you have your diet checked for its nutritional adequacy.

PHEW! Didnt think I was going to type that lot LOL ;-)

Happy if you need me to post the re-intro foods just shout ok? The above is word for word from my LOFFLEX book. As you will see peppers are ok. The only thing they say to do is chew food really well, take your time and in places have it stewed or not cold etc. Logic would say that to encourage "solid stools" we need the solid food rather than soft. It did take my tum time to readjust to normal foods again and it did feel a bit alien initially but I would take half an hour to eat a chicken breast and some mashed potato at the start. I still take up to an hour to eat a full meal and hubby has to sit and wait for me when we are out ;-)

Anything else I can help with just ask - wont always have the answers but will try to find them if I dont know!

Asthma is improving but now am reducing pred again (down to 30mg today) am itching like mad and guts are complaining so am going to start into my elemental drinks big time this coming week as its the only thing I have left to fall back on now my remi has been stopped.

Stay in touch. Thinking of you ((hugs))

Last edited by soupdragon69; 02-28-2011 at 01:32 AM.
02-27-2011, 12:17 PM   #44
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
soupdragon69: Wow! What helpful info. Thanks. I hope that you are feeling better really soon and that if you do decide to go back on the elemental diet that it goes smoothly for you and that you have great success with it again.
02-27-2011, 01:23 PM   #45
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
Cheers happy.

Am planning on starting my drinkies tomorrow in earnest! If there is anything else you think of let me know.

Hope you get on ok and that the info does help. Takes a while to get your head round it, but I just kept re reading it at the time. Reading it again to post brought things back to me so it was useful to me too!
02-27-2011, 08:20 PM   #46
supercellbaebe
Senior Member
 
supercellbaebe's Avatar
 
Join Date: Jan 2011
Location: London, United Kingdom

My Support Groups:
Wow! This is amazing Soup! Thank you so much for taking the time to type all this. I'm going to print this off!

Its amazing you mention that skins and seeds of fruit and veges are to be avoided. Just before I stopped eating, the last bits of food I was on was just veges and I couldn't work out why them on their own would make me so ill, obviously it was because they always had skins on them. Well at least I know next time!

Good luck with your elemental diet! I hope it serves you well

Thank you so much
xxx
02-28-2011, 01:34 AM   #47
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
Not a problem Heidi - glad its of some help to you!

Keep us up to date with how you are getting on honey. Thinking of you ((hugs))
02-08-2012, 08:37 AM   #48
NayNay3000
New Member
 
Join Date: Feb 2012
Location: Birminham, United Kingdom
Hi i have been taking absorb on and off for a couple months now and i have never felt better. ive tried ensure and the rest of them and they were horrible gave me a horrible taste in my mouth, and a horrible sick feeling in my stomach.

Does any one no if they sell absorb plus in the uk anywhere.
11-10-2012, 07:03 AM   #49
sheasmum
 
Join Date: Nov 2012
Location: Kent, United Kingdom
See next post

Last edited by sheasmum; 11-10-2012 at 07:07 AM. Reason: Errors
11-10-2012, 07:06 AM   #50
sheasmum
 
Join Date: Nov 2012
Location: Kent, United Kingdom
Hi all,
I am the mother of a son who has severe undiagnosed gastroentological problems (under Kings) including lactose intolerant, frequent enteritis and darroeah/ constipation and pain.
Unfortunately, my son can't speak and has ASD. He is only 5 years old. He also has severe feeding problems (mainly liquid diet with refined carbohydrates, periods of not eating).
He was put on elemental 028 cartons by GOSH and KINGS as manufactorer stopped making providextra (his last oral supplement) in JULY. We have been mixing the cartons with innocent apple juice (50/50) to get him to drink it. At first, he seemed fine and was consuming 3 cartons a day (prescribed 4) with apple juice. Now struggling to get him to consume 1-2. Also in last six weeks we have noticed following symptoms: severe bloating, constipation, crying/distress/pain and reduced appetite. He has been straining to pass a motion and bled on two occasions. Us and school are really worried, but his dietician said it is not linked to supplement. Your posts seem to suggest otherwise. Please tell me what you think and your experiences (my son can't do this).
Thanks for reading this.
Our son is due to see his gastroentologist on Dec 15th and we would like to share our concerns then.
Shea's mum.
PS: my mother in law (Shea's grandmother) has Crohns disease. Think she is on this site too!
11-10-2012, 05:49 PM   #51
emmaaaargh
Forum Monitor
 
emmaaaargh's Avatar
 
Join Date: Apr 2012
Location: Brighton, United Kingdom

My Support Groups:
Sheasmum, it definitely doesn't sound normal! I've been on elemental 028 before and those symptoms definitely don't sound right. I'd say that perhaps the reduction in appetite *could* be passed off - I think I hit a wall in the middle of my treatment and had to really fight through the rest of it - but not in conjunction with his other symptoms. I also never had any problem passing a BM whilst on the elemental - I would definitely get that seen to, sooner if symptoms persist (especially with that bleeding).

Also, if you don't mind me asking - I'm being seen at King's as well and I hope you wouldn't mind me asking who you're seeing there? I'm not comfortable with who I AM seeing and have been considering changing, that's all.

Hope I helped even a little! Hoping things get better soon.
__________________
Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Humira 40mg fortnightly
11-11-2012, 09:30 AM   #52
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hugs ..
I know a lot of formula only kids on amino acid based formula such as E028 have constipation issues since there is so little waste with them.
Movicol ( miralax) is usually needed.
The taste tends to get to much for older kids to drink orally and an ng tube is needed .
Also apple juice is not recommend for mixing the formula unless you are only using it as a supplement . I would call neocate on this on.
The other formula you are using I am not familiar with but are you measuring it out with a gram scale versus the scoop it comes with. The gram scale can make a big difference in constipation issues. Neocate also makes other powdered version of neocate junior ( tropical , chocolate , vanilla)
https://www.neocate.com/shop/c-6-nutricia-category.aspx
Hope that helps
__________________
DS - -Crohn's -Stelara -mtx
11-11-2012, 10:41 AM   #53
sheasmum
 
Join Date: Nov 2012
Location: Kent, United Kingdom
Hi,
Thanks for both replies.
My son gets prescribed the elemental in liquid carton form> we have to mix it with apple juice_ otherwise he won't drink it.
He also currently has a very limited diet of refined carbohydrates (crisps, biscuits, cereal, pretzels, poppadums).
He is on a feeding programme to broaden his diet, but supplement provides majority of his vitamins and protein.

Tried again to contact Kings. He is under Dr Babu Vadamalayan. Also trying to get appointment with his peadetrician. If not will make one with GP. But GPS often not that helpful as lack specialist knowledge and we are reluctant to make him worse.
12-03-2012, 07:41 AM   #54
kiny
Senior Member
 
kiny's Avatar
 
Join Date: Apr 2011
028 has never caused constipation for me, the opposite actually. I don't know how 028 would ever be the cause of constipation, it has no fiber, fiber doesn't prevent constipation if there's stricturing, fiber can cause constipation, especially in people with crohn's disease, because of the bulk fiber adds to stool, people with stricturing are always told to limit fiber intake, not to increase it. 028 is very low residue. I think what's more likely is that he or she has stricturing.

"A low fiber diet has been proven not to be the cause of constipation and the success of fiber intake as treatment is modest. The study reviewed conducted by Voderholzer et al showed that only 20% of slow transit patients benefited from fiber. Further data suggests that while many patients may be helped by a fiber-rich diet, some actually suffer from worse symptoms when increasing their fiber intake."

http://www.sciencedaily.com/releases...0111122655.htm
01-02-2013, 02:09 AM   #55
kiny
Senior Member
 
kiny's Avatar
 
Join Date: Apr 2011
I talked to Nutricia about the maltodextrin (I kind of feel I have to because the place is close by and I speak their language so it's easy to ask them questions), since some people have an issue with it, and it shows it promotes growth of pathogenic E coli.

Anyway.

028 extra neutral powder does not contain maltodextrin. It does contain dried glucose syrup to provide the carbohydrates.

I can not speak for any other types, I believe there are other types of 028 like the boxes drinks and they do have maltodextrin.

If you want to avoid maltodextrin, get the 028 neutral extra.

I have also sent Nutricia the study about the maltodextrin, and they have read it and realise the issue, hopefully they will act on it.

In the meantime, if you do not want maltodextrin, use the type with dried glucose syrup.
01-02-2013, 03:40 AM   #56
helena101
Senior Member
 
Join Date: Sep 2011
Location: athens, Greece

My Support Groups:
That's wonderful Kiny,
Thank you!
I had a hard time with 028, stools became completely liquid, and frequency increased while I was on the drinks. As D is my only symptom, this made it hard to tell if EN was succeeding in keeping me in remission. It was only about a month after stopping the elemental that things started normalizing. I felt certain at the time that something in the formula was bothering me, although perhaps if it was the maltodextrin it wouldn't show quite so quickly.
If I were to try an elemental-type diet again, my doctor recommended pepdite 1+ (also by nutricia). Apparently this has a slightly lower osmotic rate, which means its less likely to cause D. Also no maltodextrin.
Thanks for all the articles you post. I read a lot of them, and I aspire to be able to understand them fully some day!
01-03-2014, 07:52 AM   #57
Emmy
 
Emmy's Avatar
 
Join Date: Dec 2013
Location: Birmingham, United Kingdom

My Support Groups:
Just been put on Elemental 028, as Modulen wasn't agreeing with me, and neither did Fresubin very much, both made me bloated, gurgly, painful. Felt pretty much as bad as eating a normal low red diet. I've had one carton so far and noticed stomach gurgles and a bit of pain, but I drank it over nearly 2 hours. Still sounds like drains though. And I don't know of the drugs I had this morning are still in effect, pain relief and gut spasm-y stopping ones. I just know that yesterday my stomach had been the least bloated it had been in ages, and that's probably only because I hadn't eaten anything til I had the Modulen, which then caused mass amounts of pain and bubbling...
10-14-2015, 05:35 PM   #58
steffers27
 
Join Date: Oct 2015
I vote NG tube to but i don't understand why you wouldn't just LEAVE IT IN...honestly...don't make life so hard for yourselves xo
Reply

Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental 028... HELP!
Thread Tools


All times are GMT -5. The time now is 02:45 AM.
Copyright 2006-2017 Crohnsforum.com