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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Questions about a liquid diet.


 
09-26-2010, 08:48 AM   #1
marcus
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Questions about a liquid diet.

When my brother was diagnosed recently they mentioned something about a liquid diet and how it can really help achieve remission, but they didn't go in to any detail really and we were given prednisolone to take home, since that time i have been researching things online and from what i have read the liquid diet can be just as effective as the prednisolone, but without all the potential side effects.

If this is the case then why would they not try this first, i would be interested to know what the liquid diet involved, and if any of you have done it how did you find it, did it work and so on, as my brother is only fourteen nearly fifteen do you think he could stomach the liquid diet, i mean with the taste and stuff, is it like a drink like Ensure clinical strength or is it more specialized.

Thanks for the help with my questions.
09-26-2010, 08:57 AM   #2
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You can use the Ensure, but hear it is hard to get it in the UK? There is also modulen but I have no experience in that stuff. If you have Ensure, or Boost, it would really help your brother to have bowel rest.
09-26-2010, 09:26 AM   #3
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For a liquid only diet I think you would need to get something on prescription, things like ensure aren't nutritionally complete and contain lots of sugar. Modulen IBD is specially designed for this situation. Unfortunately, modulen is way, way more expensive than Prednisone, and I am sure UK doctors are told to give the cheapest option first!
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09-26-2010, 11:34 AM   #4
marcus
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For a liquid only diet I think you would need to get something on prescription, things like ensure aren't nutritionally complete and contain lots of sugar. Modulen IBD is specially designed for this situation. Unfortunately, modulen is way, way more expensive than Prednisone, and I am sure UK doctors are told to give the cheapest option first!
I don't think that price was an issue as i'm sure she said we can try it if we wanted to, but we had alot to take in in terms of advice that day so i think it was left as an option.
09-26-2010, 11:49 AM   #5
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I think the main problem with liquid diets is sticking to them. Firstly the specialist liquids are supposedly not that great tasting (though you can get flavours for the modulen) and secondly people can be really really hungry. For a 15? year old it might be hard to resist temptation if all his friends are eating, and I don't think it works if you don't stick to it 100%. So it would have to be your brothers decision. Long term the liquid diet does seem better than steroids, but it's a darn sight easier to pop a few pills! I wasn't given the option at first diagnosis, and once the Pred kicked in and I was no longer in constant pain there was no motivation, however I would definately ask about a liquid diet if I have another flare like that.
09-26-2010, 11:57 AM   #6
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Peptamen is available on prescription and is a pre-digested elemental diet so it helps achieve bowel rest where Ensure, Boost, and others like that would not. Plus the others are all packed with sugar too.
09-26-2010, 12:00 PM   #7
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And like Rebecca said.. well, first of all the taste is not great but if you really need it, you get used to it, believe me. Second it is hard not to eat real food. I am on 6-7 Peptamen 1.5/day and am still hungry. I eat less than 10 ounces of food a day I would say but I'm all screwed up. Losing weight again and need surgery but they won't operate on me underweight or on high steroids but it's the steroids that are holding weight on me (water retention). Catch 22.
09-26-2010, 12:02 PM   #8
marcus
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I think the main problem with liquid diets is sticking to them. Firstly the specialist liquids are supposedly not that great tasting (though you can get flavours for the modulen) and secondly people can be really really hungry. For a 15? year old it might be hard to resist temptation if all his friends are eating, and I don't think it works if you don't stick to it 100%. So it would have to be your brothers decision. Long term the liquid diet does seem better than steroids, but it's a darn sight easier to pop a few pills! I wasn't given the option at first diagnosis, and once the Pred kicked in and I was no longer in constant pain there was no motivation, however I would definately ask about a liquid diet if I have another flare like that.
Thats the thing he says he doesn't have any bad pain and the only reason he can't go back to school yet is the frequency of him needing the loo, this was one of my main concerns when they gave him the prednisolone i thought that this was for people who were in really bad pain not just having the runs a bit there is no blood or anything any more, so to me other options would have been better, although i'm new to learning about crohn's that is just my way of thinking.

Last edited by marcus; 09-26-2010 at 12:06 PM.
09-26-2010, 12:16 PM   #9
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Hiya, Meg was given Ensure Plus, they said they wanted to go down this route to avoid steroids, she really enjoyed the chocolate and banana flavours. She ended up having a liquid diet for 12 weeks, as she couldn't eat any solid food as it made her vomit due to the stricture. She regained her weight, and had all the vitamins and calories she needed and was painfree until her surgery resection date. She said it tasted fine and she lived on 6 or 7 a day. I tried it and it tasted nice!! (She has never had any diarrhea ever.)
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09-26-2010, 12:33 PM   #10
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But isn't a stricture scar tissue? In which case Pred wouldn't help?

Prednisolone treats active inflammation. Depending on the type of inflammation and where it is, you can have different symptoms. The thing is, you have to treat the inflammation as quickly as possible to prevent scarring. There are milder drugs out there, but they won't reduce inflammation as effectively. And other drugs that work to reduce inflammation can take a long time to kick in, and come with their own side effects.
09-26-2010, 12:40 PM   #11
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At the time they didn't know what what going on before the colonoscopy, endoscopy and barium meals. The doc just said to try the liquid diet before considering steroids as this can calm the gut very effectively as it happened it was just a stricture in the small bowel and so she stayed on liquids, (she never ever felt hungry on it) and yes the stricture was due to scar tissue.

A little info about Ensure Plus:

Ensure Plus®

Complete, Balanced Nutrition®


Each bottle of Ensure Plus has the right balance of 350 nutrient rich calories, 13 grams of protein and 24 essential vitamins and minerals to help you take charge of your health.
For oral use
For interim sole-source feeding
For those who have fluid restrictions or require volume-limited feedings

Ensure Plus is ready made and comes in 220ml bottles, very convenient if you have days out or sleepovers as our 16 year old does. LOL

Last edited by Dallies; 09-26-2010 at 02:23 PM.
09-26-2010, 01:00 PM   #12
Rebecca85
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I guess it depends on your doctor, whether you get offered the liquids or not. My appetite was undiminished, and I wasn't having any problems keeping food down, that probably influenced the decision. Like I said, I would have liked the chance to try the liquids, especially as I was prescribed the pred even before I was diagnosed, but as I was in hospital at the time I didn't do any research till I got out.
09-26-2010, 01:41 PM   #13
marcus
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I guess it depends on your doctor, whether you get offered the liquids or not. My appetite was undiminished, and I wasn't having any problems keeping food down, that probably influenced the decision. Like I said, I would have liked the chance to try the liquids, especially as I was prescribed the pred even before I was diagnosed, but as I was in hospital at the time I didn't do any research till I got out.
I have just looked at the cost of Modulen if i am right it's around 20 pounds a day that seems really expensive, but i'm not sure how much it costs the NHS for the prednisolone, but this must be a better option maybe even using it as an addition with food to help people stay in remission, we certainly don't want my brother to be on prednisolone long term, so our next visit to the doctor we will definitely be discussing the liquid diet.
09-26-2010, 01:48 PM   #14
Rebecca85
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Pred costs a few pence per day, depending on the dosage. And no, your brother shouldn't be on pred long term. Usually they will reduce the dose every week, and before he finishes the course they will start something like mesalazine. The exact drug depends on where is inflammation is. Mesalazine is a very mild, safe drug that will help stop inflammation from recurring. Why don't you have a look at our wiki to find out more about the different drugs and treatment options? Www.crohnsforum.com/wiki/crohns-disease
09-26-2010, 03:13 PM   #15
marcus
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Pred costs a few pence per day, depending on the dosage. And no, your brother shouldn't be on pred long term. Usually they will reduce the dose every week, and before he finishes the course they will start something like mesalazine. The exact drug depends on where is inflammation is. Mesalazine is a very mild, safe drug that will help stop inflammation from recurring. Why don't you have a look at our wiki to find out more about the different drugs and treatment options?
They gave us 60mg first week, then 40mg second, after that roughly down 5mg each week so about three months course of prednisolone, but after reading a few posts on here i see some people find it hard to get off the prednisolone thats what also worries me. In the info pack they gave us there was some info on something called azathioprene and 6MP so i don't know if that is the route they will take or not.

Last edited by marcus; 09-26-2010 at 03:19 PM.
09-26-2010, 03:18 PM   #16
Dallies
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Hiya Marcus, Meg was given the liquid diet and Azathioprine it's a drug that suppresses the immune system. Try not to worry too much xxxxxxxx
09-26-2010, 03:30 PM   #17
marcus
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Hiya Marcus, Meg was given the liquid diet and Azathioprine it's a drug that suppresses the immune system. Try not to worry too much xxxxxxxx
I know i should try not to worry too much, i keep asking him if he's okay and i think it's starting to annoy him slightly, so i'm going to have to stop being so in his face all the time and atleast pretend to be a bit more relaxed, and just try to talk about day to day stuff like we usually do.

How did your daughter find the Azathioprine, is it working for her.

Last edited by marcus; 09-26-2010 at 03:34 PM.
09-26-2010, 03:36 PM   #18
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It's only natural Marcus and you are a wonderful, loving brother. I was exactly the same with Megan, hovering over her and worrying just like you are and no doubt your parents are. Meg joined here but doesn't come on here or post, however she has made some good friends here that she fb and MSNs xxxxxxx She has got on very well with the aza, she takes it at night (100mg) we are not sure how long she has to continue taking it, will know more after our next appointment as she has had her op and is now in remission. She is currently studying for her A levels in sixth form xxx

Last edited by Dallies; 09-26-2010 at 03:39 PM.
09-26-2010, 04:00 PM   #19
marcus
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I know it's never a good time to get crohn's what ever age you are, but it must be really hard for a teenager dealing with all the the things that come along with being a teen. How did Megan find getting on with school and her friends, it's just i think my brother is a bit worried about that not massively, he has had friends text him asking why he hasn't been at school latley and he wasn't sure what to say to them, i think he should just be honest, it's a very personal choice for him to make.
09-26-2010, 04:05 PM   #20
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I'll PM you xx
09-26-2010, 04:16 PM   #21
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I know i should try not to worry too much, i keep asking him if he's okay and i think it's starting to annoy him slightly, so i'm going to have to stop being so in his face all the time and atleast pretend to be a bit more relaxed, and just try to talk about day to day stuff like we usually do.

How did your daughter find the Azathioprine, is it working for her.
It's still such a shock to you and it'll take time to come to terms with it. I think it's great that you care so much, even if it is getting on his nerves a little haha.
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09-26-2010, 07:26 PM   #22
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Last year I tried a liquid diet for 7 weeks, I followed guidelines from Jini Patel's book Listen to Your gut and the IBD Remission Diet. She sells a product called Absorb plus which is like ensure except it's powdered so you mix it with water and your own oils. The IBD remission die book also gives a recipe so my naturopath was able to replicate it with protien powder, maltodextrin and some vitamin powders. I found the diet provided me relief from pain but took a lot or resiliance to stick to it, it's amazing how much food plays in our lives, especially socially. I had difficulty maintaining my weight as I was just over drinking shakes and broth. I closely monitored via blood tests and this diet was the only time my albimum levels got close to what they should be. Still had D (3-4 times each hour) but they say thats expected on this diet. I found my gut wasn't real keen for me to reintroduce food and it took a long time to reintroduce food. It was no long term fix and the inflammation just appeared to be rested and upon re-eating it flared up again. I still have 2 - 3 shakes a day. I did stop them and my albumimum reduced to dangerously low levels (16 and should be above 30). Good Luck Your brother is very lucky to have you to help him through this mine field.
09-28-2010, 06:35 PM   #23
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There is a liquid you can use but I can’t remember the name of. It begins with S and it is often used as a food in hospital and nursing homes for people who are very sick and are having problems eating solid food. You can buy it at the chemist. Not sure if this is what you mean?

As I posted previously, sometimes you just need to let your digestive system and bowels take a rest from constant processing and elimination. I learnt this from a health centre, where they were using water or juice fasting programs for a whole host of ailments:

http://www.treeoflife.nu/programs/de...ce-fast-detox/

People can do supervised fasts for weeks or months, so not eating can be safe in the right environment and circumstances.

I have found that eating actually makes UC worse, especially if you are eating the wrong foods.

Last week I ate the wrong foods and had the worse flare that I have had in five years. It felt like someone was stabbing me in the gut with a knife, I had terrible cramps, diarrhea, exhaustion and was passing loads of blood. That was the Thursday and I had to take the day off work sick.

On the Friday morning I just ate plain fruit. Then from Friday lunchtime until Tuesday night I fasted with a combination of water and vegetable juices only, no solid food. I drank around two litres of juice and one litre of water each day throughout the day.

Started feeling better on Sunday night / Monday morning, and everything is now under control. The pain, cramps, diarrhea and blood have ceased, and my energy levels are slowly rising. I will now introduce broths and then soups before going back onto solid food.

With fasting you don’t eat solid food, but you still get essential nutrients from whatever vegetables you are juicing. So you get all the goodness, vitamins, minerals, antioxidants, trace elements and nutrition you need, but without the fibre that would inflame an already inflamed system.

But as I was advised at the health centre, it is hard to fast whilst taking medication because most medication requires you to take it with solid food. I only started doing the fasts after I stopped the medication.

I think fasting is the best tool I have tried for calming things down.
09-29-2010, 06:49 AM   #24
marcus
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So what are everyones opinions about a liquid diet being just as effective if not better than prednisolone or other medications, do you think that medications are taken over this more often because of convenience or because it's an easier option for the doctors to take, i would like to know what you all think as i'm still learning and want to help my brother make the best decision for him long term.
09-29-2010, 07:34 AM   #25
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A liquid diet is great for the bowels to rest,but not a long term goal. Who wants to drink and not eat ?? Prednisone is usually the drug most doctors give to get the active disease under control ... but again not long term. It is used in a combination of another maintenance drug that usually takes longer to kick in and when you taper off the Prednisone hopefully the new or other drug that is milder will help sustain the disease. Long term Prednisone poses many side effects the only good one is people feel better so they eat and gain weight. If he is on Prednisone in his lifetime, Calcium and Vitamin d3 is so important, more so than many others. Having blood work done for B12, is alot important.

We dont have a magic pill or diet everyone is a hit and miss , trial and error. But because he is young nutrition should be his main goal, and keeping the Crohns in check. I am proud of you for caring. We are here to answer any questions keep us posted on how he is doing and what the docs are saying. BTW keeping him stress free goes a long way. Good luck.
10-02-2010, 04:13 AM   #26
StarGirrrrl
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Can a UK GP prescribe a liquid diet? It's been nearly a week now and I can't keep any food in at all and am feeling so weak. I thought this might work as a stop gap until I actually get a Gastro appointment.
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10-02-2010, 04:25 AM   #27
marcus
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Can a UK GP prescribe a liquid diet? It's been nearly a week now and I can't keep any food in at all and am feeling so weak. I thought this might work as a stop gap until I actually get a Gastro appointment.
Well the doctor mentioned it to us so i'm guessing yes, if you feel you would benefit from it ask them about it.
10-02-2010, 04:30 AM   #28
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Thanks marcus that is a big help.
10-02-2010, 04:35 AM   #29
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Sorry i can't offer more advice, but my brother has only recently been diagnosed, so we are still learning about treatments and things.
10-02-2010, 04:45 AM   #30
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No worries I'm waiting for a diagnosis (confirmed IBD) but no gastro appointment as yet so you see my predicament.
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