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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Modulen Liquid Diet Help


09-17-2015, 04:41 PM   #1
Molyneux321
 
Join Date: Sep 2015
Modulen Liquid Diet Help

Hey everyone,

This is my first post and I was just looking for some advice. I, 19 year old male from the UK, was diagnosed with Crohn's disease about 2 months ago after about a month or so of diarrhoea, nausea, and pain. Over the past 2 months I've had two hopsital stays each about a week long where I've had a course of hydrocortisone, and each time I was sent away with a tapering down course of Prednisolone 40mg.

After the second stay I was also put on the Modulen Liquid diet, and have been on it for a month now (4 weeks tomorrow). To begin with I was told it'd be 3 weeks, then when I spoke to my GI and dietician in week 3 they suggested going for 4 weeks. They suggested that because I still had a lot of symptoms, mainly pain, nausea, and being sick every now and then. Since then I've gone down to 30mg on my Prednisolone, and have been going to the toilet about 3/4 times a day, and blood has returned in my stool after being absent since I started the diet, and it's been much more watery.

So I guess my question is, is there any point going off the Modulen diet and starting the LOFFLEX one at the moment, which was the original plan, when I'm still getting all these symptoms? I know the idea is to eventually reintroduce food, but I dont know how I'd do that when I still have symptoms, other than if they get really worse. I'm obviously very keen to get back onto any kind of solid food, but I dont want the past 4 weeks of struggles to all be in vain. Should I give it much longer or just give up now? Has anyone had an experience like this, and got better after 4 weeks?

Thanks, and sorry for the long and detailed rambling. I'm meant to be talking to my GI tomorrow about MRI scan results, and dieticien, but I just thought I'd see if anyone here can offer advice.
10-30-2015, 10:45 AM   #2
Spooky1
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Hi, Molyneux, I'm so sorry nobody answered here. I'm supposed to loiter about but ever since my disastrous house move I've loitered about bed and the loo. But then I guess you know exactly what I am saying.
I suspect you're still on the Liquid feed as your symptoms sound a lot like mine. I am on E028 Extra. Have been for around 6 months but have had a liquid feed for around 14 years. I also have a few bland bits of food. I know how you feel and hope you're not too frustrated with the diet changes. Are you still on steroids? I found they did nothing for the crohn' (too much of a stimulant) but cured the RA. I don't do steroids now.

4 weeks isn't long for a liquid feed to work. Please let me know how you're getting on and what the situation is. Thanks.
10-30-2015, 03:19 PM   #3
Charlotte.
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Hi Molyneux, I've been on an elemental diet for 6 weeks and reintroduced food with the lofflex diet but relapsed on day 3 already. How are you doing now, as you posted quite a while ago.
At the moment, I'm waiting for my immunosuppressant to kick in as elemental is not a long term option for me.

@Spooky1: How do you like the E028, is it the liquid or the powdered version? Is it covered by NHS?
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
10-30-2015, 03:45 PM   #4
Spooky1
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Hi, Charlotte, it's covered by the NHS thank goodness. It's also a lot 'lighter' on the tummy. I've tried many but can't do dairy or fructose. I have the powder and make it up and it goes through my peg tube for 20 hours per day. Bit of a tie but I had a ng tube for 18 months. Don't people just stare when you have one of those?
10-30-2015, 03:47 PM   #5
Spooky1
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Oh, and I'm sorry you're relapsing already. Perhaps try potatoes and boring bland fish to start. That's mostly what I have. If I have visitors to stay then they cook themselves stuff and I stare at a normal meal, lol.
10-30-2015, 04:39 PM   #6
Charlotte.
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It's been a while ago that my flare started being really bad, it was in May already, so it's not "already" more a "still" flaring. I was on elemental until March. It was a difficult time back then, I always filled it in smoothie glass bottles, and of course, many people were wondering what it was but I was not at the point where I am now that I can talk to everyone about my disease and don't feel ashamed at any point, so, it was a hard time and only very few friends knew that it was not just a yoghurt drink.
I realised that I have really bad arthritis flare-ups when I have dairy (same with eggs), so I would now only like to try E028. I am lactose and fructose intolerant either, but I'm a bit worried about the taste of E028. Is it too sweet? Since my elemental diet I have a kind of aversion against anything sweet, it was just too sweet for too long. ;-)
This evening I think, anything is better than feeling nauseous all day and always thinking about what to eat in order to keep symptoms as low as possible.
I'm pretty helpless regarding what to eat and what not to eat but carbohydrates seem to make my symptoms worse so I went grain free a while ago, in addition to my normal dairy free, fruit free, vegetarian diet, but I eat fish, otherwise I bet I would lose weight and also miss out many nutrients. Every time I try to add in grains, it get's worse than it already is, so I stick with mostly vegetables and fish, pretty boring and my terminal ileum is still in burning pain. :-(
10-30-2015, 05:05 PM   #7
Spooky1
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You sound a lot like me, Charlotte. I feel sorry for you. I don't like to burst your bubble but veg have fructose in too. I find them so fibrous. But you have listed all that I can't have too. Grains are a nightmare for me. My terminal ileum also burns and gets very painful. It's not really my terminal ileum as I've had loads of resections and really it's the join area that gets diseased up. Starts to happen two weeks after surgery and disease starts up from there. I have the no flavour or unflavoured one I should say. I wouldn't drink it. but I suppose you could flavour it with milk shake flavouring.
10-31-2015, 04:33 AM   #8
Charlotte.
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Oh no, I'm sorry you have so similar symptoms and even inflammation after your resection. Sorry to hear you have even a similar list of foods your Crohn's reacts to, it results in such a restrictive diet that makes eating out much harder, doesn't it? Especially eating grain free is really hard for me and I try to have small amounts of rice pasta from time to time but can't say that I can tolerate it better after having avoided it for a while. The pain gets even stronger after a few hours and stays at that level for a few days, so not worth a try regularly.

Oh yes, I do know about the fructose in veg, I realised it in one of the situations where I had bigger amounts of butternut squash. Not even veggies are safe!

For how long have you been on E028 already and how long will you stay on it, Spooky?
10-31-2015, 05:25 AM   #9
Spooky1
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I started on it in June and I will prob stay on liquid foods for the rest of my life. It's the ridiculous lack of foods and therefore lack of proper nutrition. I sincerely hope they sort your crohns out otherwise you'll be down the same path as me.
10-31-2015, 08:45 AM   #10
Charlotte.
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Oh wow, I haven't heard of such an extreme way of treatment! I would not be that "pessimistic". That's what it looks like for you at this point of time, but hopefully the NHS covers the other biologicals in the future too to offer more medical treatment and simultaneously very promising medication is already in the final clinical trial phase, more powerful than steroids (check out "Mongersen").
10-31-2015, 10:15 AM   #11
my little penguin
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Charlotte sometimes it's just what is
DS has been on 80% formula since April with no signs of getting off then ever
He eats some food but most cause him issues
He is maxed out on humira and mtx

Hope thing improve for you quickly
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10-31-2015, 02:18 PM   #12
Charlotte.
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My little penguin, that's exactly what I wanted to point out, what "is" at present, nobody knows what is going to happen in research in the next few years etc.

Thank you, hope there will be some help for all of us one day!
11-01-2015, 05:32 AM   #13
Spooky1
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I was on methotrexate for quite some time too. Was a tablet once a week along with other meds and liquid feed. There will be a cure at some point, we just need to be patient. Good luck both.
11-01-2015, 10:32 AM   #14
Charlotte.
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Thank you Spooky, same to you!!!
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