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


 
01-24-2011, 08:14 AM   #1
supercellbaebe
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Elemental 028... HELP!

I am unable to eat anything because it makes me very ill when I do so I am prescribed Elemental 028 cartons.

I am supposed to be on 8-10 cartons a day but I can't drink them fast enough! I'm on 3 a day at the moment and I MUST increase because I am losing weight fast.

I get terrible bloating, churning stomach, pain and wind when I drink large mouthfuls of these drinks and it takes me 3-4 hours just to have 1 carton!

Can anyone offer me advice on how I might increase my intake without getting even worse side effects?

Is it normal to get side effects like this on these drinks?

Does anyone else get this with these drinks?

What about these drinks causes all this bloating and wind?

Cheers everyone xxx
01-24-2011, 09:28 AM   #2
beth
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Have to be honest... I didn't get on with them at all well. It turned out I dont tolerate maltodextrin which is a key ingredient.

You could try diluting them with water, which reduces the osmotic pressure, I cut the top off and poured them into a screw top bottle so I could shake it up well.

Also try drinking them more quickly, but not so quick that it goes through you.... The point is to absorb the nutrients in the first few inches of your small bowel so giving the rest time to heal.

If all else fails go back to your dietician as there are others available: Modulen and another one the name of which escapes me.
01-24-2011, 09:36 AM   #3
supercellbaebe
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Thanks Beth,

I have tried drinking them faster, although they just cause even worse bloating and wind when I do that.

I have tried diluting them, unfortunately it doesn't seem to make much of a difference. I will have to go back to my consultant I think if things don't improve.

Its very unfortunate as I have tried a lot of other liquid diets like Ensure plus, Fresbins and Fortisip and they make me just as ill as eating food.

Very frustrating.

I've heard of Modulin, I'm not sure I'll be able to switch my drinks though. My situation is complicated, I am basically stuck on Elemental 028 or nothing at all, which just is not an option.

Take care xxx

Last edited by supercellbaebe; 01-24-2011 at 12:01 PM.
01-24-2011, 10:14 AM   #4
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I know it might sound horrible and not what you want to hear but I went through about 2 years of inserting a naso-gastic tube to give me enough Elemental 028. It did do wonders for my intestine but like you I couldn't drink it all.

The dietitian suggesting keeping the tube in all day but I couldn't bring myself to do that. After about a week I got used to "tubing" myself every night. Kept me free during the day and came out the other end a lot healthier.
01-24-2011, 12:03 PM   #5
supercellbaebe
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Thank you mehtadone for your reply.

Tubing does sound pretty unpleasant, but to be honest right now I'd be willing to try it just to see if it actually helps.

I'd be willing to try anything to try and stop myself feeling like this an constantly losing so much weight.

xxx
01-24-2011, 12:12 PM   #6
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Ask your doctor or dietian if you willing to give it a go and post on here. I can probably gives some hints and tips to make it easier but same warning, it is horrible at the start but gets much easier the more you do it.
01-24-2011, 12:23 PM   #7
supercellbaebe
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Thank you! I really appreciate that! I will be seeing my consultant next week so I will bring it up with her then.
01-24-2011, 09:29 PM   #8
happy
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Hi supercellbaebe,
I agree with beth, you could have a sensitivity to something in the oral feed. Ask your consultant to send you to a dietician who is familiar with elemental feeds. I could not tolerate a few of them, so I am on VivonexPlus now. It took several weeks for me to get up to 900 calories because I still got bloated and nauseated if I tried to take in more. I am hoping to increase it to 1200 calories this week. I also dilute the feed and sip it throughout the day rather than drinking it as a 'meal'.

I hope that the consultant can help you and that you find an elemental diet that works for you.
01-25-2011, 06:15 AM   #9
supercellbaebe
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Thank you Happy, yes you could be right about me being sensitive to something in the drinks. Although I've used them many times before when its reached the stage where I can't eat and I was okay previously.

I've not heard of VivonexPlus, what are the flavors like? You've done brilliantly to get up to 900 calories, I really hope you can squeeze in another sachet, good luck!

I've decided until I go to my consultant to stay off herbal teas, because I'm not sure that helping with my bloating. It might even be that causing the bloating and not the Elemental 028, because I've always been okay on these drinks in that past. Its worth a try anyway, until I see my consultant next week .

Thank you for your message though, I really appreciate it!

Big hugs

xxx
01-25-2011, 11:18 AM   #10
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Has anyone tried Absorb Plus? A mom PM'd me and said her son is having some success with it. We are looking for the right elemental too. This one you can customize because you blend it. It does have Maltodextrin though. Here's the link:
http://www.absorbplus.com/index.php

Here is the ingredients page:
http://www.absorbplus.com/diet/ingre...ngredients.php
and
http://www.imixnaturals.com/absorb/ingredients.asp


If all else fails, what about a gastric tube? It is supposed to be minimal surgery and no one knows it's there. Just an idea we were considering too. I know a lot of people use Peptamen also. If your not consuming enough why wait till next week to see your doc...jump up and down for an appointment now!
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01-25-2011, 04:12 PM   #11
happy
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Supercellbaebe,
I use unflavoured Vivonex, but I know that they have flavouring sachets and flavoured straws. I don't know what kind though.
01-25-2011, 06:55 PM   #12
supercellbaebe
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Stacyface Thank you so much for your message, I have never heard of Absorb Plus but I've lucked it up online, certainly looks like worth considering.

You are right though Stacy, I do need to be seen sooner by my doctor because I feel so ill through lack of nutrition. I just don't think its possible to be seen sooner though, my consultant is so busy! But I might phone tomorrow and see if anything can be done, I felt so dreadfully ill walking to the bank today it was awful .

I've heard of those Gastro-tubes, I have to admit I would opt for an NG tube over one of them. I had a friend with the gastro-tube and she got an infection, it was horrendous. I've just been totally put off them by her experiences.

But thanks ever so much hun, you take care now

xxx
01-25-2011, 06:56 PM   #13
supercellbaebe
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Thank you Happy for your response I may also look into Vivonex I think, especially if I do have to go for the NG tube, because non-flavored things won't matter then anyway because I won't be able to taste them.

Big Hugs chick
xxx
01-25-2011, 08:48 PM   #14
happy
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Supercellbaebe,
If you don't have success getting in with your consultant tomorrow, I think that you need to go to the hospital to get IV fluids. It sounds like in addition to the digestive issues, you are now getting very dehydrated with very low blood sugar. If nothing else serious is going on they can top you up with fluid for a few hours and then send you home. You will feel much better immediately. I suspect that you haven't been urinating very much either; if so, this is a sign that you are dehydrated. Please get some help tomorrow. Some very bad things can happen if it goes on too long- seizures, heart and kidney failure. So go! Then let us know that you went and tell us what help you got.
01-26-2011, 01:42 PM   #15
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Happy is right.... I am confused why your consultant wouldn't say to go to the er is your feeling that badly. Get iv fluids...it will make all the difference. Go...go...go....keep us posted.
01-26-2011, 05:26 PM   #16
NatalieMT
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I didn't have much fun on Elemental either, I was also given Modulen but that was kind of equally unpleasant. I was managing about 2/3 cartons a day too, although given my very non-concerned attitude for my health at that time I wasn't overly bothered. Dietitian basically then said the NG was really the only way to go.

I've never kept one in for an extended period of time though. I never found the insertion of them too bad but for the first day or so they make you gag like crazy, after that I suppose you get used to the sensation of something in the back of your throat. It made my actual nose sore more than anything.

If you are feeling as terrible as it sounds like you are I'd definitely go to A&E and get yourself stabilised. In the short term I'm sure some fluids would make you feel so much better and hopefully the staff in the dept could sort out for your consultant to see you sooner. Take care - sending lots of warm hugs!
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01-26-2011, 07:27 PM   #17
supercellbaebe
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Thank you Stacyface, happy and Natalie for your kind advice. I am very glad that I have managed to get myself an appointment with a nurse at my hospital tomorrow to check everything out.

Natalie I am sorry your experiences on Elemental weren't too good, I really do think some people just don't tolerate them well at all. It odd, I always used to be able to tolerate elemental 028, but not recently.

How are you getting on these days? Are you managing to get more? Are you being looked after instead of just left to starve, like they did in the past to you? I really hope so, its disgusting nobody did anything when you were so poorly.

I will post on here tomorrow and let you know how my appointment with the nurse goes

Big Hugs to you all

xxx

Last edited by supercellbaebe; 01-27-2011 at 06:14 AM.
01-27-2011, 01:13 AM   #18
happy
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Supercellbaebe,
Thanks so much for letting us know. I hope all goes well tomorrow.
01-27-2011, 04:11 PM   #19
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Supercellbaebe,
Hope you get some much needed answers. We will await your reply.
01-27-2011, 05:30 PM   #20
supercellbaebe
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Thank you Stacyface and Happy.
Today with the nurse was not particularly good because my weight has gone down rather dramatically .

But today was also a good day because I have found out why I am having so much trouble with the 028 Elemental cartons when I haven't previously had problems. I don't know why I'm doing it but I keep swallowing loads of air with the drinks whenever I take a sip! Its a condition called Aerophagia.

I've got to learn how to swallow properly. Unbelievable that something as simple as that can cause such devastating effects.

If I can't learn how to swallow properly I will have to go for the NG tube because I CAN'T lose anymore weight. That is for sure.

So an eventful day all in all, but not all bad

Big Hugs

xxx

Last edited by supercellbaebe; 01-27-2011 at 05:47 PM.
01-27-2011, 06:43 PM   #21
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Gosh...this disease is just so difficult. I vote for the NG tube. You can start with a pediatric size...go really small..like a 6 or 8 French. I wish I could get my son to try this. It is difficult but I hear you grow used to it. You can even sleep with it overnight and take it out in the morning. A huge adjustment I am sure but the benefits are big as well. I am not totally surprised air is the culprit. Sip slow! Good Luck!
01-27-2011, 06:49 PM   #22
supercellbaebe
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Thank you so much for such a lovely supportive message Stacy, that is really sweet.

Yes I am going to opt for the NG tube. Its so horrible being in such discomfort and if ike you said you can learn to ignore the tube almost then I can't see what I would have lose from having it. It definitely sounds like the right option for me.

Its annoying I have to wait until Tuesday to talk to my consultant about it, but I guess its Friday tomorrow, so almost there!

Good luck with your son though, I really hope he's okay.

Big Hugs chick
xxx
01-27-2011, 07:32 PM   #23
happy
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Glad to hear that you are closer to getting some solutions. I hope things go better for you over the weekend.
01-28-2011, 06:12 AM   #24
supercellbaebe
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Thank you Happy, I really appreciate that

xxx
02-02-2011, 02:00 AM   #25
happy
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How did your appointment go? Did you get some help answers and some help? I sure hope that it went well for you. When you get a chance, let us know.
02-04-2011, 08:29 AM   #26
supercellbaebe
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Hello everyone! Just an update.

I had my appointment with my GI yesterday. I must admit, it was more than a little disappointing. In short "They Can't Help Me."

It was a total farce of an appointment. I was prescribed a loads of laxatives and chemicals which I have previously tried and which previously had no effect of my digestive problems. Then I was sent away.

I then saw my GP yesterday afternoon and relayed to events to him. He promptly decided to say something, which frankly scares me to death:

"Heidi, this is you causing all your problems, this is all in your head. You must get over it. Eat, or you will die."

What good is that? If it is me causing this, I haven't a clue in hell how I'm doing it to myself!

Now, more waiting. I have to wait till 10th March to see my useless psychiatrist (who cannot help me, because I am not mentally ill) in order to get a referral to a psychologist, who maybe can help me.

Could a chronic anxiety and an Eating phobia, really cause someone to physically make themselves so ill, they cannot eat food without excruciating pain and horrific IBS?

My biggest fear is that my GP will stop prescribing me the Elemental Drinks. I will starve to death if he does. He wants me to be working towards getting off them, how long will he give me? Panic!!!

Could I really be doing this to myself?
02-07-2011, 04:56 PM   #27
happy
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Hi super,
Boy, what a downer. You are not getting much help, are you? I have had a hard time getting the help I need too, and several of the health professionals who were supposed to be helping me were being very passive. For example- my doctor wanted me to take meds only even though we are not sure which IBD I have. I have very good reasons for not wanting to start with meds- including a history of cancer and previous drug reactions. No other options were given and a referral to a GI was going to be at least 6 months down the road. I was getting sicker and sicker and unable to eat, despite trying a low fat, low fiber, partial elimination diet (LOFFLEX). I did lots of research and decided to go the elemental route. No support for that where I live. I finally found a pharmacist who would order the elemental diet for me and I asked the outpatient dietician very specific questions about it so I could make sure that I wouldn't be malnourished etc. It didn't go so well at the beginning because I was so ill and dehydrated when I started. My usual doctor was not interested in helping me- I was just expected to wait the six months for the referral. I stuck with it and recently I decided that I needed to get some bloodwork as I have been on the elemental diet longer than expected and I was concerned about my electrolytes and nutritional status. I was lucky to find a new doctor who was taking new patients for a month- I told her exactly what I was doing and exactly what I felt I needed. She was terrific and even said that she admired my tenacity for sticking with the liquid diet to induce remission. She was very supportive. I now feel that I have someone helping me who is overseeing things.

Super, I am telling you this detailed info because I sense that you don't want to rock the boat and are sitting back waiting for the health professionals to help you. That is usually the way I operate as well. But this time I could not be passive and continue to feel like a victim. I had to find a pharmacist, a dietician and a doctor who would help me. I second-guessed myself every step of the way- but I continued to seek people to help me with my needs- not theirs. It has been a long few months and taken a lot of energy, but I am so glad that I did the work. I have something that I can 'eat', I feel better and I am slowly improving. I don't know what the future holds, but I no longer feel panicky about it.

Some of the resources that have helped me that discuss elemental diets in detail are: the book, Beat Chrohn's by Margaret Oppenheimer, the book, Inflammatory Bowel Disease by John Hunter, and John Hunter's website: http://www.crohns.org.uk/
Addenbrooke's hospital in the U.K. has a dietary department that deals with elemental diets for IBD. Perhaps they could help you. Here's the website: http://www.cuh.org.uk/addenbrookes/s...ietitians.html. You could give them a call and see if they have any suggestions.
Good luck super. I hope that you find the right people to help you soon.
02-07-2011, 05:39 PM   #28
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Thanks for helping her Happy. Keep with it Super....and keep us posted.
02-07-2011, 07:10 PM   #29
supercellbaebe
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Wow Happy! Thank you so much! You've been in a situation not dissimilar to me then! I am considering getting a new GP, the only I have at present is nothing but a bully and frankly, its stress that actually makes IBS and IBD much worse so we could all do with reducing stress and to be rid of him would be a load off!

I've also decided to take more action, I am going to start learning how to manage my anxiety and what have now become food phobias. I think Mindfulness is a very powerful technique, I forgot about it for a while but I'm going to start doing it again because it does help. I think these little things may get me through the periods when I am "waiting" for the health system to do its work, slowly as it does.



I'm so sad to read that your GP sounds like an uncaring git, I cn't believe these people get jobs in a "caring" profession, if it wasn't so devastating to people's lives, it would be almost funny, in an ironic way.

You've been very strong, very pro active and you should be very proud of yourself Well done you! I'm going to take inspiration from you and do what I can to sort this mess out.

Big hugs to you all! And thank you so much



xxx
02-10-2011, 05:47 PM   #30
soupdragon69
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Hey folks,

I have been catching up this past few days with this thread and totally empathise with you all.

When initially diagnosed xmas 06 I was given the choice of steroids, antibiotics or elemental 028 extra. I opted for the last one because I had and still do end up on alot of the other two for asthma and chest infections.

I did a total of 6.5mths on elemental and my asthma and allergy consultant is adamant it is the best health he has ever seen me in and that I should just be on it for life and never eat again.

It was the best health I ever had but found towards the end of that time I was really struggling mentally with maintaining it.

Now I am at a cross roads as it were and have had the feeling of "needing" to go back to the elemental again to the point where I have it at home and keep trying to work out when to start it. Have come to the conclusion I just need to get on with it and do a long spell again. I do use it intermittently on my not so good days but know I need a longer stint again.

I am a patient at Addenbrookes that Happy mentioned and the team there are fantastic. My consultant is great and I can stay in touch with the gastro nurses either by phone or email. I talked to one of them on tuesday this week as have had an ongoing chest infection and was exhausted so needed to cancel my infliximab infusion and my outpatients appointment which she did to save me the energy and she is keeping track of me to re organise things. The dietitians there are fantastic and help you step by step. Mine organises my appointments with her for when I am seeing my consultant to save me extra trips etc. I also keep in touch with her via email when I need to.

If I can help in any way just shout ok? I havent been about much these last months due to much going on including 2 episodes in hospital and trying to beat this darn infection!

Thinking of you all. Hang in there! ((hugs))
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