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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Modulen Diet for Crohns


 
02-15-2015, 11:34 AM   #91
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Hi

I am a 24 male from the UK who has had Crohns since 2002. After 2 operations, countless spells on steroids and azathioprine, trials on infliximab and adalimumab - all of which haven't worked, my specialist has recommended I try Modulen.

For those who don't know this is where you don't eat any food and have Modulen (a special kind of drink). You then reintroduce food slowly after 4-8 weeks. Everywhere I have researched seems to suggest it has at least a 90% remission success rate but the problem is patients are unable to stick to the strict regime. I am determined to give it a good go!

Has anyone any experience of this - any views and comments will be gratefully received!

Thanks
Hi Colin 84,
I have just been put on Modulen too. I have heard good things about it and hope it works. But I worried I'm not going to be able to stick to the strict regime. How long have you been on it?
02-15-2015, 04:25 PM   #92
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Hi SoapyLilly I am here in the Uk too and on day 15 of Modulen. I have found it surprisingly easy, though I am motivated by fear as I was very ill. I would stick with it if you can. The first 10 days it did go through quite rapidly, liquid in and liquid out which worried me, but then it suddenly started to slow down. I am now just going to the loo once or twice a day and whilst still a bit liquidy, there is no urgency and I can manage this. I really need to put weight on, I am very thin and have managed to gain 4lbs over the past few days just by upping how much I consume. I am tired, but that's because I have been so ill, but my energy levels are increasing. I like the taste of it and don't bother much with the flavourings, though occasionally have the strawberry as a change, I don't like chocolate things and the banana is a bit odd. My tummy is flat and quiet and I am sure it is doing good. You won't feel hungry. I have been out to dinner with friends and they have eaten and I have just taken my Modulen and I am going on holiday in two weeks and simply taking it with me. Holidays have always been very difficult managing strange food and water and actually this will be a easier.

So hope all goes well for you. It's good to see the UK hospitals are trying things like Modulen as well as all the drugs. I am in Gloucestershire and have a pretty good team. Hope you are well looked after. Liz
07-22-2015, 03:42 PM   #93
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Hi everyone I'm new to this but saw this thread and had to register!!
So I went to see my dietician today and she has given me modulen... so I'm on my 2nd drink of my 3 that I am allowed on day 1 and wow... already I'm hungry! I dont know how long I am on it she gave it to me as a sudden treatment as she had somewith her and gave me 7 cannisters to take home and start and she will give me a call on friday to see how I am getting on and if I am then she will speak to my GP about carrying it on! I'm worried about how hard it's going to be
I have added a nestle milkshake powder to taste and it's actually ok but a possible 6 weeks of it?!?!
Has anyone else been on it?! How did you cope?!
Im 23yr old female losing lots and gaining little in weight
07-22-2015, 05:46 PM   #94
zilla7777
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With regards to weight, personally I think it's the most effective thing I've ever used to manage my weight. Even with stricturing I managed to put on a few kilos, then once I was happy with my weight I was able to cut the shakes back a little.

As for the hunger, you gradually get accustomed to it, but it is handy to have some safe non-modulen foods just to satisfy flavour boredom and keep your jaw working. Ahah (e.g. I was allowed particular lollies, like some types of soft jubes or hard lollies.)

How many cans are you going through a day?
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07-23-2015, 02:07 AM   #95
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With regards to weight, personally I think it's the most effective thing I've ever used to manage my weight. Even with stricturing I managed to put on a few kilos, then once I was happy with my weight I was able to cut the shakes back a little.

As for the hunger, you gradually get accustomed to it, but it is handy to have some safe non-modulen foods just to satisfy flavour boredom and keep your jaw working. Ahah (e.g. I was allowed particular lollies, like some types of soft jubes or hard lollies.)

How many cans are you going through a day?
Hi zilla7777,
Thank you for the reply it's nice to know my weight will improve
What kind of foods would you regard as safe non-modulen foods?!

Day 1 (yesterday) I was on 3 drinks at 210ml water and 6 scoops modulen
Day 2 today is 5 drinks same measurements
The from day 3 its 7 drink from then on at same measurement.
It will be just under 1 can a day
07-23-2015, 04:56 PM   #96
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Hi Kimbohiggs

Stick with it. You'll be fine. I have been on Modulen since the start of this year. I did four months of Modulen only and now do about 50% intake each day of Mod and the rest food. It saved my life! It put me in remission and keeps me there now as a supplement to the rest of my diet. I am now able to eat without worrying to much about my stricture as it has calmed down my inflammation. I am sitting drinking some now even as I type this. I actually found that when I started eating again, I wasn't bothered about food at all and I missed the Modulen. It took about two weeks for my weight loss to stop altogether, then I maintained my weight for a while and then I put some on. I have gone from 8 stone 6 lbs to 9 stone with the Modulen which is a reasonably healthy weight for me. Today, if I feel that I am in danger of flaring at all, I just go back on the Mod for a few days until I am right again. I too am in the UK and we are so lucky to get this on the NHS. Has it calmed down your symptoms? It took about 10 days for it to really work for me. I found after about 6 days I didn't feel hungry at all. If I needed to taste something, I sucked a clear fruit sweet and very occassionally ate a little cooked fish, but mostly I was fine. Let me know if I can help at all. Good Luck. Liz
07-24-2015, 06:27 AM   #97
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Hi Kimbohiggs

Stick with it. You'll be fine. I have been on Modulen since the start of this year. I did four months of Modulen only and now do about 50% intake each day of Mod and the rest food. It saved my life! It put me in remission and keeps me there now as a supplement to the rest of my diet. I am now able to eat without worrying to much about my stricture as it has calmed down my inflammation. I am sitting drinking some now even as I type this. I actually found that when I started eating again, I wasn't bothered about food at all and I missed the Modulen. It took about two weeks for my weight loss to stop altogether, then I maintained my weight for a while and then I put some on. I have gone from 8 stone 6 lbs to 9 stone with the Modulen which is a reasonably healthy weight for me. Today, if I feel that I am in danger of flaring at all, I just go back on the Mod for a few days until I am right again. I too am in the UK and we are so lucky to get this on the NHS. Has it calmed down your symptoms? It took about 10 days for it to really work for me. I found after about 6 days I didn't feel hungry at all. If I needed to taste something, I sucked a clear fruit sweet and very occassionally ate a little cooked fish, but mostly I was fine. Let me know if I can help at all. Good Luck. Liz
Hi Liz,
Thank you so much for your reply it really boosted me... I'm supposed to have 7 modulens today and im struggling with my first one if im honest :/ x
07-24-2015, 07:27 AM   #98
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Hi, glad you're still persevering. I like the flavour, but I sometimes add Crusha strawberry or raspberry and find it is just like a milkshake. I have a can a day if just having the Mod. I make it up with 12 scopes and 420ml of water. It is better if you make it up a couple of hours before you drink it as it seems to have then mixed in well. I was desperately ill when I started it and facing being fed intravenously with no gut left and on a transplant list so finding the Mod did literally save my life, which I why I have found it so easy to adapt to I suppose. Anything was better than the alternative. Plus I like the fact that it is not a nasty drug and can't have any bad side affects. Your dietician should advise you and give you enough so you don't feel hungry. I wish you lots of luck and hope as the days pass you find it easier and easier and enjoy feeling well. Liz.
07-26-2015, 08:13 AM   #99
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Hi, glad you're still persevering. I like the flavour, but I sometimes add Crusha strawberry or raspberry and find it is just like a milkshake. I have a can a day if just having the Mod. I make it up with 12 scopes and 420ml of water. It is better if you make it up a couple of hours before you drink it as it seems to have then mixed in well. I was desperately ill when I started it and facing being fed intravenously with no gut left and on a transplant list so finding the Mod did literally save my life, which I why I have found it so easy to adapt to I suppose. Anything was better than the alternative. Plus I like the fact that it is not a nasty drug and can't have any bad side affects. Your dietician should advise you and give you enough so you don't feel hungry. I wish you lots of luck and hope as the days pass you find it easier and easier and enjoy feeling well. Liz.
Its day 5 today and for some reason today i am really hungry! But drinking modulen isnt quite cutting it... i think its more the fact i really really really just want to eat something tasty... im literally on the verge of tears dramatic i know but god im emotional the past couple days
I just want to eattttt
07-26-2015, 08:22 AM   #100
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http://www.dailymail.co.uk/health/ar...our-years.html
I have posted this already but this guy is on modulen four years.
07-26-2015, 08:32 AM   #101
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I admire him for his mental strength but I guess not everyone has that...
07-26-2015, 08:38 AM   #102
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I know he must of felt like he had no other choice to make such a big decision.I have been on fortisip for two weeks now and I am considering doing what thus guy has done but eating a meal once a month or on special occasions. I have done elemental,semi elemental and polymeric diets before but never for any longer then three months. It would make you wonder though do a lot of people with Crohns choose this as a lifestyle.
07-26-2015, 01:40 PM   #103
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So I usually suffer from low blood pressure but noticing now im on the modulen only im getting bad head rushes everytime i sit up or stand up and headaches and fatigue... could this be my blood pressure if so how can I raise it because im struggling even focusing with these headrushes
07-26-2015, 02:01 PM   #104
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Hi
I am the same and always suffered from low blood pressure and headrushes. During one of my stays in hospital when they were monitoring my blood pressure my levels became normal when I was hydrated. The nurse told me that dehydration caused your blood pressure to drop. Could you be dehydrated?
07-26-2015, 02:03 PM   #105
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Hi
I am the same and always suffered from low blood pressure and headrushes. During one of my stays in hospital when they were monitoring my blood pressure my levels became normal when I was hydrated. The nurse told me that dehydration caused your blood pressure to drop. Could you be dehydrated?
I thought that but I have to mix my mofulen with 210ml of water and I drink 7 of them a day :/
Ive been lying in bed all afternoon and dont like getting up or even slightly sitting up unless my boyfriend is nearby
07-26-2015, 02:11 PM   #106
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Jesus that sounds very bad I wonder is it a combination of die off and dehydration. I drink six or seven fortisips which are two hundred mls but also drink a lot of boiled water or black tea. My doctor actually told me to make sure I was drinking plenty.
07-26-2015, 02:12 PM   #107
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I've been drinking alot of bottled water and weak squash along with it too so that is the only reason im concerned... have debating calling out of hours just for abit of advice?!?!
07-26-2015, 02:19 PM   #108
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If you are that bad maybe you should but maybe it is bacteria die off which is making you worse before you get better. Just to eliminate anything sinister call the doc though. Sorry I'm no more help. Are you passing urine?
07-26-2015, 02:23 PM   #109
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I've never heard of bacteria die off :/
And yea I am passing more than usual due to the drinks
07-26-2015, 02:30 PM   #110
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Apparently the bacteria in your gut dying off from being starved can cause something called a herxiemer reaction which for the first two weeks of these diets can cause diarrhoea,vomiting and all kind of different symptoms to worsen. You can pretty much blame everything on die off although sometimes I think it's the Crohns more then anything else.
07-26-2015, 02:37 PM   #111
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Sounds horrid... maybe i wont call out of hours it could be that
07-26-2015, 02:45 PM   #112
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Hopefully you will feel better tomorrow look after yourself
07-26-2015, 02:46 PM   #113
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Hopefully you will feel better tomorrow look after yourself
And yourself, thanks for the support
07-27-2015, 03:18 AM   #114
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Hi Kimbo Hope you are feeling better. I would check in with your dietician or specialist nurses if you are worried. I found for the first few days the Modulen did go through me a bit, but it settled down about day 9 or 10. But even then I did feel okay and didn't have any blood pressure problems. The Modulen itself doesn't really come with any side effects it is just pre-digested food really. But it can pull water into the gut and make it go through you, a bit liquid in, liquid out and you need to stay hydrated. I would just check carefully that you are making it up right - which should be 210mls and 6 scoops or as I do 420 mls and 12 scoops. Did they give you one of the specials shakers to make it in with the measurements on the side? Anyway, hope you are getting there. I would so want it to work for you as it has been so good for me. Fingers crossed. Liz
07-27-2015, 06:45 AM   #115
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Hi Kimbo Hope you are feeling better. I would check in with your dietician or specialist nurses if you are worried. I found for the first few days the Modulen did go through me a bit, but it settled down about day 9 or 10. But even then I did feel okay and didn't have any blood pressure problems. The Modulen itself doesn't really come with any side effects it is just pre-digested food really. But it can pull water into the gut and make it go through you, a bit liquid in, liquid out and you need to stay hydrated. I would just check carefully that you are making it up right - which should be 210mls and 6 scoops or as I do 420 mls and 12 scoops. Did they give you one of the specials shakers to make it in with the measurements on the side? Anyway, hope you are getting there. I would so want it to work for you as it has been so good for me. Fingers crossed. Liz
Hi Liz,
Currently still curled up in bed, my body cant decide if Im freezing cold or sweating and over heating... theres a pain in my sides and I have only just been able to make my fist modulen of the day and even that I really struggled!!
07-27-2015, 08:04 AM   #116
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I really think you need to get the medics involved. You shouldn't struggle on your own. Do you not have a Specialist IBD Nurse at your hospital you can contact? If not, give your GP a ring. If you have a thermometer, check your temperature and make sure you are not running a fever. It might be that you have picked up a bug or something, and I do think it may be time to get help. There is nothing wrong with getting your Doctors or Hospital involved and I am sure they would want you to. Hope things improve - I am a bit worried about you. I really do sympathise, I know it's hard sometimes to know what to do for the best, but really - get help. xx
07-27-2015, 10:55 AM   #117
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I also have been hot and cold at night. I'm on Elemental 028Extra and have 1750mls per day, mostly through my PEG. I sip the rest, but I do suffer if I sip to quick as I get a thumping headache. I'm mostly liquid in, liquid out, but also suffer the fatigue and nausea. I also have low blood pressure most of the time. My dietician told me not to drink much in the way of fluid as that plus the liquid food could be too much for me. I also have a couple of clear mints and some potato and salmon when I can cope with it.
Good luck, Kimbo
07-28-2015, 07:27 AM   #118
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I really think you need to get the medics involved. You shouldn't struggle on your own. Do you not have a Specialist IBD Nurse at your hospital you can contact? If not, give your GP a ring. If you have a thermometer, check your temperature and make sure you are not running a fever. It might be that you have picked up a bug or something, and I do think it may be time to get help. There is nothing wrong with getting your Doctors or Hospital involved and I am sure they would want you to. Hope things improve - I am a bit worried about you. I really do sympathise, I know it's hard sometimes to know what to do for the best, but really - get help. xx
Hi Liz,
Rang my GP after an awful night of hallucinating because i was over heating and the pain in my right flank side became so bad I couldnt move... he came out to do a house visit and I am now sat down the hospital waiting to be seen...
07-28-2015, 07:45 AM   #119
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good luck, Kimbo, we'll be thinking of you. Keep us updated.
07-28-2015, 01:25 PM   #120
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I am so pleased you got help. Really hope everything works out. It might not even be your Crohn's, could be you've picked up a virus or something. Either way I wish you lots of luck and will be thinking about you. Let us know how you get on once you are able to. Lots of love. xx
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