Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental diet: how quickly does it start to help?


 
03-07-2012, 03:21 PM   #31
littlemissh
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Sarah C,
Is your dietician aware you go to the gym 4 times a week as she needs to include that in her calculations for your calorie requirements. You may not be taking enough calories.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
03-07-2012, 05:34 PM   #32
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Yeah I told her and she said she included this in her calculations! A week off from college now. Maybe my body needs rest. Can't be easy coming off medication and food and hoping to run in the same way I suppose! Think about the mountain of medications we've already been on!
03-08-2012, 01:15 PM   #33
SarahD
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SarahC, did you completely come off your normal medication when you started the diet? I wasn't quite sure from what you said about the asking the drs to take you off your meds whether you had actually done this or not. If you have, the lack of energy could be to do with that maybe? What meds were you on and did your consultant agree to you stopping them? I've been taking my usual meds (Pentasa, 3g daily) all the way through being on the elemental diet - not sure if that's the same for everyone (Dan? littlemissh?).
03-08-2012, 01:56 PM   #34
littlemissh
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I've continued on Pred and aza and also had humira added the same week as I started. Trying everything so stoping meds was not an option.
I hope to be able to start reducing Pred though in the next month or 2.
03-08-2012, 03:48 PM   #35
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Yes I'm currently off all medication. I was injecting Humira every two weeks and my IBD team are behind this decision. Hopefully it works. Feel like I've turned a corner today. Feeling great. Let's hope it lasts!
03-08-2012, 04:04 PM   #36
Tesscorm
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Hi,

Just thought I'd jump in and offer my experience through my son...

He's 17 and was diagnosed in May. His crohns was in small bowel, TI, a bit of inflammation in his duodenum and his colon. His only treatment has been EN. He started with 6 weeks exclusive - he was allowed broths, clear fluids, jello, etc. Since then, has been on half the dose, 5 nights per week. He ingests the formula overnight through NG tube (he inserts each evening and removes in the morning). After the six weeks, he reintroduced all foods.

His formula is called Tolorex, during his initial six weeks he was taking in 3,000 calories per day. He was always slim (5'10", approx. 147 lbs) and then lost 20 lbs before diagnosis. He gained a bit of weight during the six week period (maybe??? 10-15 pounds) but really started to gain weight once he began to eat again. In total, within three months, he gained 30 lbs and stabilized there.

He's being treated by a large children's IBD clinic in Toronto and they seem to be fairly involved and proactive re EN. Initially, I was in regular contact with the dietitien and this was the reintro schedule of food (this was done while tapering down the dose of EN to his current 1/2 dosage):

3-5 days - reintroduce 'white' foods - white bread (any type), rice, pasta, rice krispies or plain cereal (very low fibre, no milk), plain muffins, broth. He was allowed small amounts of toppings - i.e. a LITTLE bit of butter, nutella, low fat cream cheese, strained tomato sauce.

Next 3-5 days - low fat proteins - any type but I stuck mainly with chicken, fish, eggs.

Next 3-5 days - fruits and veggies - soft fruits/veggies, no skins, no membranes (skin around orange 'segments')

Next 3 - 5 days - low fat dairy - milk, cheese, etc.

And then all else as tolerated.

His only permanent restrictions are no seeds (sesame, sunflower, tomato, etc.), no popcorn, no nuts (nutella or peanut butter okay, just not pieces of nuts).

Where the range of time is 3-5 days, I usually stuck with 4-5 days (I didn't want to rush it...)

Hope some of this info, reintro diet?, is useful.. It's a tough treatment! I admire all who have been able to stick with it!!

Good luck!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-08-2012, 07:34 PM   #37
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Its good to keep these drinks on repeat perscription if you can when back eating normal and feeling well 1-2 drinks a day will keep remision and let the body absorb plenty or nutriants and minrals it otherwise would not get..
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Diagnosed 2002, crohns of the dudoneum, ele--"mental" diet six months of my life
omeprazole predesoline.. resection surgery X1 balloon dilation x2
still keep bouncing back!!
03-08-2012, 10:55 PM   #38
Tesscorm
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Whenever my son does end his current treatment, I'm hoping he will supplement his diet with one or two drinks! Totally agree that it can only help in maintaining remission and ensuring that nutrients are absorbed.
03-09-2012, 08:32 AM   #39
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There really are so many ways of reintroducing foods! So confused as to which way to go, but i like the sound of your son's reintroduction method Tesscorm! Fingers crossed white bread isn't my trigger food! D:
03-09-2012, 10:02 AM   #40
Tesscorm
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You might also want to look up posts by Happy. She has had success with EN and followed a much slower reintro of foods. She has quite a bit of knowledge on EN and has posted quite a bit of info re reintro diets.

Good luck!
03-09-2012, 02:22 PM   #41
littlemissh
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Tesscorms reintroduction diet is pretty much what I was told.
03-10-2012, 03:35 AM   #42
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My reintroduction diet is very different to the one Tesscorms posted. I'm following the LOFFLEX diet which means no diary and no wheat among other restrictions, for about 2 weeks. After that each new food has to be tested for 4 days to see whether you react to it. I guess this approach is more thorough but takes a lot longer and is more restricted. If you want more details on what is/isn't allowed on the LOFFLEX diet then just let me know.
03-11-2012, 10:26 AM   #43
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I've researched the LOFFLEX diet which is what I was initially going to start after my six weeks of the EN. The low residue diet however also seems like a good idea. Will have to discuss them with my dietitian!
03-12-2012, 02:53 PM   #44
Mom2oneboy
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Tess, is Stephen staying in remission without any meds??
06-22-2012, 06:09 AM   #45
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I've been on the elemental diet for four days, and my symptoms, which are mostly diarrhoea, have gotten a lot worse. Diarrhoea doesn't seem like a terribly uncommon side-effect of the elemental diet, so I think I'm going to have to wait for the tests next week to tell me whether it's working or not.

My doctor is basically the only doctor who knows anything about Crohn's in the rural town of Tottori, so I'm hoping he knows what he's doing. He took some persuading to put me on the elemental diet instead of giving me prednizone, and I'm hoping to persuade him (with Dr Hunter's book's help) that lofflex is the next stage (he wants to give me more Humira, even though it's already failed to work once...)

@ SarahD: interesting to hear that you're from Cambridge too. I lived there until I moved out to Japan in August, and will probably return there eventually. Let me know if the dietician you're seeing does a good job! I much prefer the diet treatments to the idea of drugs.
06-22-2012, 06:24 AM   #46
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Hope it works out for you James.
It's tough going but worth it if it means being medication free!
How long do you have to stay on it for?
06-22-2012, 07:15 AM   #47
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Thanks, SarahC! Best of luck with yours, too - I hope it works out for you. I was only diagnosed six months ago, so it sounds like you've had a much longer experience with it all than I have. Would be fantastic to be able to control it all without medication.

I'm on it for a tentative three weeks, although the plan seems to be to play it by ear, and go back onto food once the inflammation has cleared. How much longer have you got left now? Have you had much relief so far?
06-22-2012, 02:28 PM   #48
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Hi James,

Elemental give me D too and it wasn't one of my symptoms before hand. It didn't go away until I started to re-introduce food. Do you have other symptoms usually, and if so do you feel they've improved at all? It's hard but don't give up hope yet. It took me a good 3 weeks to feel any real improvement, and even after 4 weeks I wasn't completely improved. The best advice I can give from my own experience with elemental & LOFFLEX is not to rush things. I was initially on elemental for 4 weeks, and even though I was still regularly getting cramps I then started LOFFLEX on my dietitians advice. I thought it was too soon but I was desparate to eat, but I eneded up having big flare and had to spend another 4 weeks on elemental. So what I'm trying to say is listen to your body and don't rush onto LOFFLEX if you don't feel ready.

Do you have a dietitian to help you through all this? Prof Hunter's book is a great help too. My dietitian in Cambridge is ok, she helped develop the LOFFLEX diet with prof Hunter so she's very knowledegable about the diet. She has promised to call me a few times between appointments to see how I'm doing and then hasn't, but apart from that she's been ok. I think Addenbrookes is one of the best places to be for IBDer's (atleast in the UK).

Just post if you have any questions or just need support etc...elemental is hard work and really tough going mentally as well as physically, just know you're not alone!

Sarah

Last edited by SarahD; 06-22-2012 at 02:31 PM. Reason: typo
06-22-2012, 08:39 PM   #49
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I get pain and fatigue during flare-ups, and those don't seem to be present, but they come and go as a part of how the disease works for me anyway (and haven't been present very much since my inpatient stay ended a few weeks ago). It's encouraging to hear that other people have also experienced D on the elemental diet, though - I guess that isn't a sign that it isn't working after all.

Sadly, I'm not sure if there are any English-speaking dieticians employed in Tottori, and I'm pretty sure there are none who know about Crohn's. The incidence rate in Japan is, I think, 2 in 100,000, which makes it hard to get help here. But I'm hoping a combination of my doctor and Prof Hunter's book will get me through the food re-introduction. How has the re-introduction process been for you? Has it gone fairly smoothly?

Addenbrookes does seem like a very good place for Crohn's. I had my colonoscopy done there at Christmas, and everyone seemed very knowledgable. The sensible thing would probably be to go back there to be treated, but I'm rather attached to my job in Japan, and I wouldn't be able to get it back if I left, so I'll be sticking it out a bit longer.

Thanks for your help!
06-23-2012, 07:21 AM   #50
Tesscorm
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Hi James,

Re the D, my son did six weeks of exclusive EN. D has been one of his symptoms at diagnosis and the D continued (5-6 times per day) throughout the exclusive (formula only) period. His dietitian had warned that this is common, as she explained 'what's going in is liquid, so...'. However, all of my son's other symptoms disappeared fairly quickly and, there wasn't a problem with 'urgency'.

As soon as he reintroduced food, the D went away.

And, just FYI, you said you would be on it for 3 weeks - my understanding is that the EN must be exclusive for a longer time period approx. 6 weeks (sorry ...). Three weeks may not be enough time to bring the inflammation under control???

Good luck!!!
06-23-2012, 08:03 AM   #51
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Hi James,

It does sound like you'll need to wait for the tests then to see if you're responding. I think D is one of the more common side effects. For me I went from 1-2 BM's a day to 5-10 a day once I'd started elemental.

When I asked about you seeing a dietitian I was thinking that CD is quite rare in Asia - it must be really tough finding a doctor with the knowledge to treat you. Any chance you could travel back to the UK just to see a consultant & dietitian (combined with a holiday to sunny Cambridge? lol) or would it be too expensive? I guess the flight would be quite long too?

I wouldn't say my reintroduction has been smooth at all. The first time I was on LOFFLEX I was struggling quite a bit with symptoms the whole time (4 weeks) and ended up in a massive flare which came on very quickly. After another 4 weeks on elemental I started LOFFLEX again and have still had a lot of ups and downs. I've been on LOFFLEX for about 6 weeks this time, though was told it would only be two weeks initially. I did react to a few of the LOFFLEX 'safe' foods, but then everyone is different. I'm just about to start testing non-LOFFLEX foods next week which is a big milestone for me Compared to how I was just before I started down the dietary route I'd say I'm 95% better and can function normally again, but I do still get some pain on a daily basis. It has been hard work, but I feel it's been worth it so far. I think Hunters book does make this all sound a lot easier than it is and he doesn't really discuss what happens if things don't quite go to plan....I guess that's one of the reasons it's useful to have a good dietitian. They will also check that your diet is adequate in terms of nutrients so that you can eat more of a particular food type or introduce supplements to fill any gaps. All that being said, I don't think you should be discouraged that you don't have a dietitian, I guess it's not impossible to do this on your own but it is really important for your doctor to ensure your diet is nutritionally adequate. Best of luck!
06-23-2012, 09:10 AM   #52
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@ Tesscorm: Thanks for your post. It does sound like the D is just something I'll have to put up with, although I'm glad to hear that other people have had the same issue, and it doesn't mean that I'm intolerant of the elemental feed or anything.

About the time, the dietician in England who I was in e-mail contact with for a little while (before she realised that her insurance didn't actually allow her to treat me in Japan...) said that for my level of Crohn's (which was described as 'mild' by the consultant) 3 weeks would be enough. So I'm hoping that's right? Although judging by SarahD's account, perhaps the NHS is always stingy with its elemental feed.

@ SarahD: Yeah, the doctor I'm seeing now in Japan is the fourth doctor I've tried this year. It doesn't help that the system in Japan is that they get paid based on the number of patients they see, so doctors here will often tell you they can treat you even when they have no idea just to get more patient visits. Flying back to England is sadly too expensive to see someone just once or twice (I've already done it once this year for the colonoscopy). 1000 return and about twenty four hours of travelling each way Tottori to Cambridge.

It sounds like you've had a tough time with it, although I'm glad to hear that it sounds like you're seeing some success at last. As you say, it'll probably be pretty difficult to know what to do if things don't all go by the book without a dietician. I'm really hoping that I don't react to any of the LOFFLEX foods. I'd like to say, "This is the last plan. If it's too difficult to getthe elemental->LOFFLEX diet to work with the doctor I'm seeing now, I'm coming home again". But since late March when I flared, I've had nine or ten 'last plan before I come back to England', involving six doctors and a dietician across two countries... so I'll see!
06-23-2012, 09:33 AM   #53
Tesscorm
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There is another member who has quite a bit of experience with EN and reintroducing food, and I believe she did it without much assistance from a dietitian. If you search for posts by happy I'm sure you'll find lots of info.
08-04-2012, 03:50 AM   #54
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hi, i've been recently diagnosed and put on the elemental diet as my doctor doesn't want to use steroids on me as i'm only young. I'm quite enjoying the juice drinks and i have no pain or bloating what so ever but my diarrhoea is continuing! It seems i don'e need to do to the toilet as often but when i do it is small amounts of watery diarrhoea. Anyone have any ideas if the drinks are still working?
08-04-2012, 06:33 AM   #55
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Hi Sadiesweeet, I had terrible D whilst I was just on elemental, it wasn't a symptom of my Crohns before hand so it was all caused by the elemental. I got given an information sheet before I started the diet and it said to expect diarrhoea. It doesn't automatically mean that the diet isn't working, particularly if other symptoms have improved. It may be worth mentioning to your dietitian, if only to put your mind at ease.

Sarah
08-04-2012, 01:34 PM   #56
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Thanks for the re-assurance Sarah! When you think that only liquid is going in, you would assume that would come out, but yeah i will tell my doctor to see what he says. Any tips on cravings on the diet? Because i am in no pain and feel relatively normal food is driving me mad. And i still have 3-4 weeks left!

Sadie
08-04-2012, 03:07 PM   #57
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Hi Sadie,

How long are you on elemental for in total? If you're feeling well would they let you reintroduce food earlier than planned?

The cravings are horrible, I found it pretty difficult in the first couple of weeks. It does get much easier as time goes on though...I found it helpful to give myself little non-food treats - I know it doesn't really stop the cravings - but I found it helpful to replace the pleasure I'd get from food with something else. I really like baths so I treated myself to a few things from Lush, treated myself to some new nail varnish etc. They were just small things but I was saving money on food so figured I could afford to spend it on something else I could enjoy

I also tried to stay away from strong smelling foods, I didn't mind being around other people eating but if the food had a strong odour it made it really hard. I guess it's a case of finding something that works for you really. Eating is such an ingrained and natural behaviour that it's incredibly difficult not to have food.

Good luck,

Sarah
08-04-2012, 05:01 PM   #58
rob101
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Hi Sadie, When I was on the elemental diet I would drink more water when I was hungry and try to avoid being with other people when they were eating which was easy at the time as i had just had a resection and was in bed a lot.I also had a lot of diarrhea while on the diet which only stopped when I was put on Colestid sachets twice a day and stopped immediately.
Hope the diet goes well for you . Its really seemed to help me and if i have any signs of a flare I go back on it for a week and touch wood seems to do the trick.
08-05-2012, 01:33 AM   #59
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Hi Sarah- thanks for the great advice again. I'm hoping the doctor is going to say that when I see him in a weeks time. He wants me to get another CT scan before he introduces me to new foods and if that is okay then he'll go ahead. It's very hard getting a scan where I live though as its so busy and priority goes to accident and emergency patients.

As for the treating yourself thing that's a really good idea, I find relaxing and taking my mind off things in a bath therapeutic so I might invest in some bath salts too.

I'm okay being around others eating as I do have quite strong will power but the problem came when I was able to go out again and see my friends. It was a friends birthday and everything was fine until someone ordered pizza and I just had to leave. Then I went to see my boyfriends band play and the street was full of burger vans and things. I honestly felt like I was going to crack so had to leave early. I think that's the worst thing, social interaction and feeling left out!
08-05-2012, 01:35 AM   #60
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Thanks for the advice Rob. I really need to just stick it out as I know people on here have had it a lot worse and I might if I don't try this treatment. Advice like that really helps thanks :-)
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