Apologies if this is in the wrong thread - I am new to this!

I am a 24 year old male who has had crohns since 2002. After 2 operatons, countless spells on steroids and azaithioprine, unsuccessful treatment on infliximab and adaliumumab (humira) - all of which have failed, my specialist has put me on the Modulen diet.

This is where I am not to eat any food for 4-8 weeks and just drink this Modulen mixture to give the bowel a rest. I am then to reintroduce food slowly. Everywhere I have researched has said it has 90% success rate for remission but it often fails as patients cannot stick to the strict no food regime.

I am determined to give this a go as nothing else has worked and am interested to hear any views or comments.

Look forward to hearing from you.

Hi,

My  son did this and it did seem to work for a very short time. In my opinion, this is a great idea and should work, I feel that the reason it only worked for a short time was because we weren't supervised closely enough when re-introducing diet. I think we should have done things more slowly and been encouraged to look for signs of relapse with each new food which was re-introduced. If my son has to do this again, we will definitely ask for very close supervision, it would be great to find out which, if any, foods make this condition worse for him, then we can acoid them and hopefully have some time off from the drugs etc.

Let us know how you get on, Good Luck.

Mary.

Thanks for the advice about the supervision - definately something I will push for. I will keep you informed how it goes!

Colin84  This Modulen diet sounds interesting, I think the side effects of the medications I have encountered....it might be a good thing to try some other treatment that doesn't involve taking medications. The only thing that concerns me is that it would just be a short term fix when the treatment works, and without full follow up and good supervision on the recovery of introducing foods again-how can we find out what foods are safe for us to eat that won't contribute to us becoming ill again?

It could be that a new diet would work, if only we knew what foods are making us ill? I have made a diary of foods I avoid and the foods I am safe with and will power is what I need to avoid eating the foods I should not eat.... Such as spicey foods, some vegetables, high fibre cerials, high acid fruits and sugary sweets etc.

Peanut, I agree with what you said. I have never looked at different foods so I am hoping that something may be highlighted.

What I am hoping is that when I have a flare up I go on the Modulen to sort me out and then revert back to normal. Using the Modulen has no side effects which steroids do so I am really hoping that it works. It also contains casein which has shown to have healing effects for crohns so the longer you can stay on the Modulen the more rest your bowel gets and also more healing

While it all sounds great - will power is the factor. Tomorrow will be day 7 without food but it has been difficult!

will power is the factor. Tomorrow will be day 7 without food but it has been difficult!

Ditto here, with the exception I'm on the Elemental diet. It's not that the stuff is nasty it just isn't food and my guts are still churning and saying 'feed me'!

Sounds like you've had a tough time.
Beth

Yeah it has been pretty tough as was first diagnosed when doing my a levels and then had huge problems at uni. Was training to be a Physical Education teacher but had to change degree so am now trying to forge a career in other areas of sports development/coaching but have been struggling for the last year.

However I am now starting to feel positive and really hope this is the turning point.

Hi Colin84

Modulen does work - it was amazing for my Jaz who is 12 - the only problem is when you go on it again for a 2nd and then a 3rd time, it becomes very unpalitable (if thats the word) as Jaz would say makes you gag! Food reintroduction is brilliant because it does give you the opportunity to test what you are ok with. Having said that, we now know that Jaz's Crohns is not diet driven. Tip from Jaz - mix in some chocolate flavour shake syrup!! take care and bye4now, Lis & Jaz

Hi Lis and Jaz

Well I am 9 days in and feeling so much better - it is amazing (so far) I have been mixing in the nestle crusher mix and it tastes good. When i started i was drinking it plain and boy was it disgusting!

Looking forward to eating again and really hope i find something that flares it up!

I am now on day 21 since I last had food. I went and saw my consultant today and all my blood tests show the inflammation has gone. He wants me to stay on the Modulen for another 3 weeks and then have another MRI scan to see what things are like.

I know some people are sceptical of Modulen but I have to say that after 6 years where steroids, humira and remicade have all failed as have a resection and a formation of a colostomy - Modulen is the only thing that has allowed me to be symptom free and feel like I did before the Crohns was diagnosed. And this is only after 3 weeks - studies show that it takes 5 weeks to achieve full remission so hopefully the best is yet to come.

I am trying not to preach but for the first time in 6 years I see light at the end of the tunnell.

Hi, Glad the Modulen has given you some hope. I am on my second time around with Modulen. 5 weeks before christmas and going into week 7 this time around. Totally get what Jaz says about it being far more unpalatable second time around. Its a case of I know where I am going this time.  I found it great to rest the bowel but as a definite definer of foods that cause flares I am less convinced. Individual body chemistry is so unique and changeable over time and conditions that predicting a problem food forCD is nigh well on impossible. I can be fine with wheat or dairy for 12 months and then something in the wind changes and it causes me and my intestines serious problems.  Its usually a case of everything in moderation for me but I am waiting for a capsule endoscopy at the moment because I cannot tolerate solid food of any sort. May well be a stricture doing its evil. Am on Budenoside and Pentasa - pain when on solids is agonising.  Hope all goes well for you with the food reintroduction. Keep me posted.  Agree with adding nesquik - I being a devil at the moment breaking with strawberry and going with banana - who says I haven't got a life??  

I am now 5 1/2 weeks into my modulen diet. Having tried everything in the past and failing everything I think I have found something that works. I have no stomach pains, no fatigue, no diarrhea. I have put on half a stone in the 5 1/2 weeks and even been on a date with a girl which would never had happened 2 months ago as I was always so tired.

So I am currently the biggest fan of Modulen in the world! I am seeing my doc on Monday and will tell him I am staying on Modulen for the full 8 weeks. I will then introduce food which I am now not missing at all and am very wary about starting again but want to try and lead a normal life. However, at the first sign of a flare up the yellow tins of Modulen will be back out of the cupboard!

I finally finished my Pred dose today. For the first time in 8 months I am steroid free!!!

So as you can tell - I will encourage everyone to try Modulen if you can and if you cannot get it in your country, form a protest group and write to the powers that be!

Oh and by the way - looks like things may look good with the girl!

Hi Colin84,

My Son is 12 and he was diagnosed back in March. He was tube fed Modulen only for 6 weeks, and only other allowances were flavoured water and to suck boiled sweets! I made up the feed and he had half at night through the pump. He put on weight and seemed to be in remission, till they took the tube out and did a barium x-ray, which showed some inflammation left behind. We are now on the steroid route, Budesonide, but he still drinks 500mls of the Modulen every day, strawberry Crusha milkshake syrup is excellent, as is drinking it through a pop-top bottle for him, as he hates the smell rather than the taste!

I see your last post was some months ago, so fingers crossed its been good news for you since then.

Lynn

hi my gp put me on modulen as lost 4stone in as many months ,  got 4 little tubs of flavour with it coffee one not so good but strawberry, bananna and lemon and lime not to bad , i use the stuff when i cant eat food once or twice a week, mostly. has any one else used it like this as there are times when i have no appetite at all and can go for days without eating, hence the modulen. stuff is really good though  

Hi buzzyb,

My Son didn't use the Modulen like this (see my post above) but our dietician gave him Ensure Plus drinks when he didn't want to eat, they are like milkshakes, different flavours, best taken ice cold though - yucky if room temperature! They are like 300 calories in a small bottle.

Lynn