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


 
08-05-2012, 02:20 AM   #61
SarahD
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I can completely relate to that Sadie! Try not to give yourself a hard time about it if you have to leave because of food, I had to keep telling myself that other people still had to eat and I couldn't blame them for doing so but its still not nice when it seems everyone around you is eating and you can't join in. Even people who know you can't eat can be a little insensitive at times.

I hope you manage to get the scan soon and can start eating again. Will you be following a special diet as you reintroduce food?

Sarah
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
08-05-2012, 03:19 AM   #62
Sadiesweeet
 
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Yeah I know, I try not to blame them but I admit I do resent them a bit. If eel awful on my boyfriend as he's bending over backwards not to eat in front of me but also trying to treat me like normal. It's hard for us both.

I will be making an appointment with the dietician to discuss food re-introduction soon. Ive read on here there are a series of stage which I think my doctor mentioned. I have no idea which foods in particular are 'bad' for me yet. I'd been only eating whole rain foods before diagnosis as advised by my doctor who thought I had IBS but most people say white grains are better for crohns which I will try.
08-24-2012, 10:35 AM   #63
crunch
 
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@JamesNeve gather incidence of crohns in Japan is rising as omega 3 levels fall as population moves more towards a western diet and away from fish - not sure what that means for us non-fish fans. Was also told that there are some good crohns experts on the north island somewhere beginning with s but I don't remember the place, sorry.

I've just finished elemental and had all your problems with D - my biggest issue was the taste, found all flavours awful, but eventually found a way that works - chill in the fridge, always make the next batch up (if powders), have a special glass you don't use for anything else i.e. not attached to, and I had third of a pint every 45 mins during the day, but never got close to the 5 jugs a day!

just started on LOFFLEX and belly not happy to have food in it again, but we'll see. Biggest problem for me there is blandness and lack of sweet things, but try anything rather than more pills (aza and mercap made me iller than crohns) or prospect of future surgery.
08-24-2012, 10:38 AM   #64
crunch
 
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oh and another way of knowing its working is if the d is rather on the green side!! bacteria dying apparently, if the intention is to reset the bowel flora as in LOFFLEX....
08-24-2012, 03:14 PM   #65
JamesNeve
 
Join Date: Jun 2012
Location: Tottori, Japan
@Crunch - sadly, the prefecture I was in, Tottori, is the lowest populated prefecture in Japan, and the people who live there are mostly old people who cling very rigidly to their traditions. I'm sure you're right in general though - the more progressive areas of Japan do have a much more westernised diet. Because Japan's so long and thin, moving around is pretty difficult, though - would have taken me eleven or twelve hours by train to get to the northern island...

Anyway, the treatments they were trying over there really weren't working (except Pred, but the side-effects were horrid even for the short time I was on it), and my contract ended in August, so I ended up coming back to England rather than recontracting as I'd been planning. Hopefully Addenbrookes will have more success (I imagine I'm being supervised by the same lady you were, SarahD). I've just started a second round of Elemental Diet a few days ago - not particularly looking forward to it, but so far the D is a lot more manageable with the Elemental 028 than it was with the Japanese version. The flavours are worse, though. I miss the coffee flavour...

Best of luck with yours, crunch. Do post if you're successful in finding a diet that'll let you manage Crohn's without pills - sounds almost too good to be true...
08-24-2012, 03:32 PM   #66
crunch
 
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shame your contract ended, but perhaps your health will benefit...

lofflex supposedly has a 95% success rate IF you can get on the diet plan, I suspect the IF is because most people struggle with no caffeine, alcohol, chocolate, takeaway etc... think it will be hard to just test a single food stuff, even spag bol is pasta meat tomatoes and other things we all throw in - all have to be safe before even trying spag bol!

hey ho - give it a try
07-10-2015, 10:02 AM   #67
Diver jude
 
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Hi , I am due to start an elemental diet , after failing with drugs and severe reaction to infliximab. I have cd and a recto vsginal fistula and was diagnosed last December but as yet no relief from my symptoms , so my consultant hopes this may help. Any advice or stories from others would be appreciated as feeling rather lost and overwhelmed . Many thanks
07-10-2015, 01:38 PM   #68
happy
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Hi Diver jude,
Sorry to hear that you are having such a difficult time right now. What is the plan for your EN? Do you know what formula you will be taking and for how long? How will you be monitored to know if it is working? Feel free to ask me any questions about EN.
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07-11-2015, 05:55 AM   #69
Spooky1
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Hi, Jude,
do you know whether you will be fed by tube, or will you start with the sweetened sip feeds? The sip feeds tend to dash straight through me, and because I have had a lot of intestine removed it's a case of liquid in, liquid out, which is a shame. But others have great success on it. It can take a little while to work, but look on the bright side, at least you know your body is receiving all the nutrition it needs from those liquid feeds. That's a good start.

Good luck, and as Happy says, ask any questions. We're here to help each other when no one we know can.
07-13-2015, 10:49 AM   #70
Diver jude
 
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Thanks spooky and happy, been in hosp last few days , but home now , nurse is dropping of my feed to start tomorrow , modulen I think , been on sip drinks last few days . Going to try to manage drinking it ,rather than NG tube , the dietician said for 6 weeks . Wish me luck x
07-13-2015, 11:03 AM   #71
happy
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Diver jude,
The people in the parents' thread have lots of tips about EN--many children are on Modulen--so they may have some advice for you. http://www.crohnsforum.com/showthrea...576#post694576

I haven't tried Modulen. With my formula--VivonexPlus--mixing it up in advance and chilling it, then drinking through a straw or through a covered cup (sippy cup) worked the best for me. I also had to dilute it by half, but still drink enough of it to get my caloric and nutritional needs. I also started gradually rather than all at once. I am not sure if you can chill or dilute Modulen.

This is another thread that discusses Modulen: http://www.crohnsforum.com/showthread.php?t=32162

07-15-2015, 02:01 PM   #72
Diver jude
 
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So day five with no solid food and day 2 of the modulen, have had moments of hunger but coped , my husband is diabetic so still cooking for him is important, however I've had no bowel movements since starting , just bleeding which I think is the fistula, very bloated , tired ,and bit dizzy, is this normal ?
07-16-2015, 06:26 AM   #73
Spooky1
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I find liquid causes a bloated tum. the tiredness and dizziness is also very common with Crohns. I also bleed from a fissure. Keep at it and please keep us informed.
07-27-2015, 11:48 AM   #74
happy
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Diver jude- I hope that things are going better for you now. Sometimes you need to try different formulas because you may have a sensitivity to some of the ingredients--a milk protein or sugar is often a problem. Diluting the drinks can help and drinking lots of water throughout the day. If you are still having trouble with constipation, a small dose of Miralax won't interfere with the EEN. Some people have loose stools on the formula and others get constipated. Keep in contact with your health professionals so they can help you if things aren't improving.
07-27-2015, 12:34 PM   #75
Diver jude
 
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Hi happy, a lot can happen in a week so thankyou so much for checking in on me. A week ago I was admitted to the hospital , with severe pr bleed and pain ,overnight I haemmoraged and had 3 unit blood transfusion. Taken to theatre next day , were they had a good view of my recto vaginal fistula which they think had caused the big bleed. I was told an ileostomy was a real likelihood before I went to sleep and on waking found that is what I'd ended up with. They have put a seton stitch in place, and hope the ileostomy may give the fistula a chance to heal, as this is the 2nd haemoorrage, first was back in February, and I've been advised it would be life threatening and unsafe to have left me. I'm now home and the elemental feed has been stopped and I now have to slowly build up a normal diet. I still can't quite believe what has happened and to say I'm scared and struggling with the changes is an understatement, but I'm just glad to be alive and won't let this beat me. Xxx
07-27-2015, 12:44 PM   #76
happy
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Oh goodness--what a scare that must have been for you! Thank you for letting us know that you are out of danger now. You sure have been through a lot.

Take your time getting back to your usual activities--go at the pace of your healing.

I was just watching a very interesting presentation about partial EN--perhaps that would be a good approach for you: https://www.youtube.com/embed/6EbHUYy5ePg

May you soon be feeling well.
07-28-2015, 05:18 AM   #77
Spooky1
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thanks for the you tube link, Happy.
Diver, what a surprise for you. Hope all goes well.
07-28-2015, 10:32 AM   #78
happy
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No problem Spooky1--Lady Organic posted it in the the parent's section in this thread: http://www.crohnsforum.com/showthrea...365#post879365
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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental diet: how quickly does it start to help?
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