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02-08-2012, 06:03 PM   #1
chippy
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Modulen help?

I have been on the modulen diet for eigth weeks now and have improved so much on it that I thought about introducing food soon so rang my dietician for advise on how to do this best only to be told that he left three weeks ago and nobody has any paper work about me. Hospital still not got back to me so was wondering if anybody had any advise about the best way of introducing food without putting myself back to square one.

Thanks,

Chippy
02-08-2012, 08:52 PM   #2
DustyKat
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Hi Chippy,

I have no experience in this area but i think happy may be just the person you are looking for. Have a look at this thread...

http://www.crohnsforum.com/showthread.php?t=31028

It's fab to read that you have had so much success with an EN diet. Good luck with the next step!

Dusty. xxx
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02-09-2012, 02:17 AM   #3
happy
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Hi Ya chippy,
I'm Happy-- the one Dusty was talking about above.
Well first of all, I recommend that you are supervised by your doctor/dietician so keep working on that-- it is very easy to become malnourished.

You can read the thread that Dusty also suggested above for info about the resources that guided me, but I'll give you a quick intro here and then you can ask me specific questions.

First of all--drink lots of water. Your system is likely to get constipated with solid food. I also suggest having on hand a laxative (Miralax) with POLYETHYLENE GLYCOL (PEG) 3350 in it to use for a short while in case constipation becomes an issue. (There are no other ingredients in it to worry about.)

Then start very slowly; think of eating food as supplementing your EN for the first while. Chew the food thoroughly, eat slowly, and eat very small amounts at first.

Start with one food at a time (per day or even up to four days). Start with watery white rice first, then cooked carrots, cooked pear, poached chicken, soy milk (plain, unsweetened), then small amounts of soy/vegan butter and/or olive oil. Branch out from these foods to include rice cakes, rice crackers, rice flour to coat the chicken, etc.

Stay away from high fibre foods (legumes, skins of fruits and vegetables), those that are irritating to the bowel (nuts, seeds, popcorn), dairy products, high fat foods, spicy foods and other grains.

Then slowly add fish, other lean meats, more fruits and veggies, and test dairy products. Then test various grains, higher fibre foods and higher fat foods. Ask your doctor before you try seeds, nuts popcorn, etc.

Gradually reduce the EN once you are eating well, or continue supplementing with EN if you wish.

Congrats on getting well with EN--it takes a lot of dedication. Good luck with your return to solid food. May it go smoothly for you.
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02-09-2012, 02:47 PM   #4
chippy
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Thanks Dusty and Happy.
Still nothing back from the hospital but shall keep pestering them.
Just by suggesting to treat food as the suppliment has put my way of doing this in a better perspective.
Thanks again.
02-09-2012, 04:12 PM   #5
happy
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chippy,
You are welcome. Hopefully they will get back to you soon. If they weren't eating solid food, you can bet that they would want a quick response!
03-04-2012, 07:04 AM   #6
BrunofromCroatia
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I was on modulen for 10 weeks. It is a life saviour. I don't know if you know this but you cannot consume any food when you're on Modulen, cause otherwise it doesn't have effects. Just water. So after a Modulen i had to go to the hospital for slowly consuming food. I got 10 day plan what to eat for breakfast, lunch and dinner. Basically it was: bread, cooked soups, cooked meat ( NOT fried or roasted ) prepared with olive oil, fruit ( apples, bananas, oranges, tangerines ), vegetables ( salad prepared with lemon juice NOT with vinegar ) NO SPICES in food, NO carbonated drinks ( Coke, sprite etc... ), NO junk food. Just healthy home cooked food. You start with a breakfast: two slices or more of bread with chease cream, cup of tea. Lunch: Cooked chicken soup with noodles, boiled potatoes, salad with lemon juice, cooked chicken meat. Dinner: Fruit, bread + margarine NOT butter, tea.
IMPORTANT RULE : You eat same food for two days. Same breakfast, lunch dinner like this above. THEN, the third day you put 1 new foodstuff into your eating plann and again you eat for a two days same food with that new ingridient. You eat like that for a 10 days untill your body gets used to food cause you didnt have any food in your bowels for a long time. IF you start eating junk heavy food you could die because your bowels are squeezed and you could feel some pain so dont trick with that. Eat small easily digestible food and after a two months you can start eating normal BUT with attention. Dont exaggerate with junk unhealthy food cause Crohns may come back. And ofcourse if you didnt have any problems with Modulen you can continue drinking it like 250 or 500 mililiters per day with food ofcourse. Its good for your bowels and your blood. I hope i helped you. Good luck!
03-04-2012, 01:06 PM   #7
Dutch941
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Hey happy...this is interesting to read because in our case...this type of therapy was never suggested! We were told that steroids were an immediate need......my son is 12 and had severe ulcers in his colon from top to bottom......we are hesitant to use drugs and asked about diet modification but were told that diet is a side issue and that it affects the disorder but does not create it and therefore diet changes will not stop his body from attacking the colon...we have also been told that because his onset was at such young age his condition is ACUTE and therefore diet is important and needs to be changed but diet alone could not remedy his condition....anyone know if we should be re thinking this? He is in puberty years and we don't want to affect his growth.......
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Matt age 13
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Pentasa, fish oil, b12
6mp from dec 11 to oct 12(stopped after liver enzyme issue)
03-21-2012, 12:03 AM   #8
andreab63
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hello,
I am in Australia, and go to a very up to the minute gastro peadiatrician, who is constantly involved in research.
Diet is hugely important during a flare. The gut should be rested, so you need a good supplement. MODULEN is specifically designed for a gut affected by Crohns.
Most importantly MODULEN contains a specific gastric antiinflammatory specifically designed to treat the bowel in Crohns flareup.
It cannot be substituted by something like a generic dietary booster like Ensure.


my daughter has had crohns for the last 6 years, Diagnosed when she was 11. Initially she was treated with high doses of steroids, whilst commenced on azothiaprine, which takes 6 weeks to kick in (2006). that was awful.

There has since been significant research showing that fasting with complete feeds of modulen as the only food (usually through a nasogastric has exactly the same "cure" results as high dose steroids and other drugs.

However, even knowing this my daughter refused to have a nasogastric tube and tried to drink the modulen 6-7 times a day, with limited success.
I refused the steroids the second time around as they have such punishing side effects for apparently little easing in her symptoms, ( I guess you have to be guided by how dangerously ill your son is).
So the only option was to crank up her immunosupressant which is PURINETHOL also known as mercaptapurine. This worked, but at the cost of making her liver very upset.
However, new studies have shown that with the addition of drug ALLUPUrinol (used for gout), the immunosuppressant dose can be divided by an eighth!!!! MAGIC, so now she is good, and has a happy liver.

Check out some of the medical research on fasting with MODULEN as compared to drug treatment.
So if my daughter has another flare up, her peadiatric gastroenteroligist stipulates Fast/ nasogastric feeds of MODulen, continue the current imunosupressants (not steroids), has to be for a minimum of 6 weeks. There are probably criteria, like no bowel bleeding or other life threatening things that need surgical intervention.
all the best to you and your son.
andrea
03-22-2012, 06:59 AM   #9
Mark in Seattle
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I used to drink Peptamen OS 1.0 before Nestle discontinued it. Too bad because it tasted quite good and their other Peptamen products they sell taste horrible to me, so I'm now in search of a new EN option.

The Modulen sounds interesting, particularly with the anti-inflammatory component.

I'm searching the web for where to buy it and I only find one web site.

http://www.westonshealth.co.uk/

I'm in the U.S., so I'm just wondering if anyone can advise on how to buy Modulen for shipment to the U.S. Is this a legitimate company to buy from? The price seems very high (US $34.35 per tin, plus shipping costs). Does one tin = 1 day's meals?

Any suggestions/advice appreciated. I'm in huge pain, huge need to avoid traditional food.
03-22-2012, 12:19 PM   #10
Twiggy930
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Hey Mark in Seattle,

My son has just started on Modulen. We are in Canada but given that you are in Seattle I am wondering if you could source it in Vancouver. We got ours through a hospital program. When I googled it I found an online source via The Hospital for Sick Kids in Toronto.

www.specialtyfoodshop.ca/specialtyfoodshop/

There may be issues with importing it into the USA as it contains casein, a milk protein, and may therefore be considered a dairy product. My boxes say it is a product of The Netherlands and has been imported by Nestle Canada. Maybe contact the USDA to find out what your import regulations are for such a product.

I noticed that it was pricey, I had no idea as ours was covered and was delivered free to our house, I am suddenly way more appreciative of our health care system.

I hope you can source it somehow and get feeling better soon.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-22-2012, 12:30 PM   #11
Tesscorm
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Twiggy - if you don't mind my asking, is it your provincial gov't paying? I'm assuming it's not your private insurance. Stephen is on Tolorex, which we get from Hospital from Sick Children but ours isn't covered by my insurance nor by our provincial plan. So far, luckily, it's been covered by a local medical agency but, this is supposed to be short term so not sure how much longer they will continue paying.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-22-2012, 12:43 PM   #12
Twiggy930
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Ours is covered by our Provincial Health Services Authority (BC).
03-22-2012, 02:42 PM   #13
Mark in Seattle
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Thanks Twiggy, I just called the Specialty Shop in Toronto and they say they won't ship outside of Canada. If anyone comes up with ideas for Vancouver, please let me know.
03-22-2012, 03:46 PM   #14
Twiggy930
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What if they ship it to a PO box in BC (just over the border) and then you pick it up and drive it across? I know a lot of people in BC do it in reverse, have things shipped to Blaine and then go and pick it up. Just have to declare items at the border and all is fine.
03-22-2012, 05:07 PM   #15
Mark in Seattle
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How would I get a po box up there?
03-22-2012, 05:54 PM   #16
Mark in Seattle
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I just called the Canada Post Office in Vancouver. They won't do a po box for me since I can't provide them with a Canadian physical address. Nice thought. I'd like to see if anyone in Vancouver sells the Modulen. Sure don't see any indication on the web. And the Nestle Canada phone numbers don't work.
03-22-2012, 05:56 PM   #17
Twiggy930
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Here are directions for getting a Canadian postal box.

www.canadapost.ca/cpo/mc/personal/ratesprices/receive/postalbox.jsf

Closest postal outlet that has boxes is probably at the Shoppers Drug Mart in White Rock. I'll try to give you a link for that outlet.

www.canadapost.ca/cpotools/apps/fpo/personal/findPostOfficeDetail?outletId=gf09adbc8af4a402b_00 00382132

I would definitely contact the USDA before you try to bring it across the border. There may be restrictions because of the milk products in it and it would be terrible to buy it all and have it confiscated.
03-22-2012, 05:59 PM   #18
Twiggy930
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Argh! I though Americans could get a postal box.

I wonder if a Canadian pharmacy could order it in for you?
03-22-2012, 06:03 PM   #19
Twiggy930
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Or try a UPS store. They will also accept parcels.

www.theupsstorelocal.ca/445-White_Rock/products.html
03-22-2012, 09:34 PM   #20
Mark in Seattle
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That might work Twiggy. Thanks. I called the guy & he said he'd set me up, we'll see if he actually does. Anyhow you're a great helper!

Not sure where to source the flavor packets.

Can anyone confirm how long one can of Modulen lasts?
03-22-2012, 10:30 PM   #21
Twiggy930
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All my cans have an expiry date of April 30, 2013.

I've been told to use Nesquik syrups to flavor the formula. We tried chocolate, strawberry and Rolo flavors. Can't say any of them make it taste great.

I'm glad you might be able to source some.
03-23-2012, 06:53 AM   #22
Mark in Seattle
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Thanks Twiggy, actually what I meant by asking about how long one can of Modulen lasts is how many days will one can last if I use it daily. Does one can last for one day or for one week or one month?

I guess what I should say is how many servings are in a can, and how many servings does a person need to consume each day?
03-23-2012, 09:37 AM   #23
Twiggy930
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We are using just shy of 1 can per day. But my son is only 10.

1 can mixed at standard concentration provides 2000 ml of formula and contains 2000 kcal.

There are some details in a Modulen guide I found online. Page 20 has instructions as to how many cans to order.

www.nestlenutrition.co.uk/healthcare/gb/products/Documents/Modulen Trouble Shooting Guide.pdf
03-28-2012, 12:05 AM   #24
Mark in Seattle
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I was able to order the Modulen from London Drugs in Vancouver, B.C. and it only took them 1 day to get the order in. So I drove up there today and picked up 8 cans to try it out and see if I can tolerate it and see if I could get it across the border without any hassles. The border guard I talked to today didn't seem real concerned about my bringing the Modulen across the border, so I was very pleased and relieved about it and now I can begin my first leg of the trial to see what I think of it, and if I want to try more, then at least now I have a way that will hopefully work in the future as well as it did today.

So I mixed up one serving tonight. Basically 6 little scoops using the little scooper mixed with 210 ml of cooled down water after it's been boiled.

Does the water really need to be boiled first? Regular water is not good enough?

Also, I had little clumps in my final mixture, which I could not seem to get fully dissolved. Any thoughts on this?

I paid CAD40.69 per can. And in USD it was a few pennies more than that. Not to get ahead of myself, but I would hope that in the future if I order more, I can perhaps negotiate a lower price if I buy a greater quantity. Forty bucks is kind of spendy.

Anyhow, I'm really looking forward to giving this a try, even though the taste is not great. But it's not as horrid as the Peptamen that Nestle is now selling. I may be able to get used to the taste of Modulen, especially if it helps me.
03-28-2012, 12:25 AM   #25
Twiggy930
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So glad you were able to get some! I have been blending it in the blender to avoid the clumps.
03-28-2012, 11:36 AM   #26
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I was on Modulen for six weeks and found that mixing it up whilst still warm and shaking well prevented any bits from forming. Then I'd just stick it in the fridge and have it whenever I needed it - I still have to have a 300ml supplement daily for the next year but I find that having it with my breakfast gives me a boost for the day! Hope you enjoy the taste more than me (I didn't like the Modulen Flavours but found that using either Nesquik milkshake powder or Crusha made it drinkable) Hope it works for you!
04-11-2012, 10:17 PM   #27
Mark in Seattle
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I was really impressed with my first trial of Modulen. I had purchased 8 cans from Canada, and they lasted me about 10 days I think. I noticed pain relief within a couple hours of drinking it. After about a week I had very little pain. And this was even with drinking it on the side while also eating regular food.

I drove back to Canada and picked up 48 more cans to see if I can give it a real try, now that I know that I can tolerate the taste. I don't use any flavorings in the Modulen, just water and Modulen. It tastes fine unless I drink too much, and then it tastes way too sweet.

The stuff is so expensive though. I paid $1.8k including Canada's high tax rate of 12% I believe, for the 48 cans. Too bad this is not covered under my insurance. My insurance will pay for surgery or biologics, but not enteral.

Anyway, my challenge is to try to lay off of food and particularly lattes. I need my lattes/caffeine. I have no idea how to find the willpower to abstain.

How do most of you all use Modulen? Do you use it for a couple months to induce remission and then go back to it for a couple months when necessary? Or do you have a glass of it daily sort of year-round to keep the remission going?

Does anyone believe in actually boiling the water before mixing it up? The instructions say to boil it, but it doesn't actually say why.
04-12-2012, 01:05 PM   #28
Twiggy930
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I still boil and cool the water but only because it is going to hang in a bag and run through a NG tube all night. If it was going to be refrigerated and consumed immediately I don't think I would bother. If your water is clean I can't see a reason to do it.

Glad the Modulen is working so well for you!

I've heard of people being allowed to drink black coffee while on EN. Could you switch your latte for an americano?
04-12-2012, 01:42 PM   #29
Mark in Seattle
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Thanks Twiggy, I can't really drink black coffee because it somehow hurts my larynx really bad (I have what's known as LPR...laryngopharyngeal reflux disease...which is basically a form of GERD except that I don't get heartburn, I just get burning on my larynx). Also, black coffee feels like a knife on my terminal ileum. Hence, lattes are tamer on both my larynx and ileum, which is why I drink lattes rather than coffee. Otherwise I would prefer to drink good strong black coffee...love it. I've tried Americano, but it's just too watery tasting for my taste.

I'm going to see if my supply of Modulen will be powerful and long-lasting enough to permit me to get off of prednisone. I'm at 10mg/day currently. We'll see. Thanks!
07-22-2013, 10:51 PM   #30
rollinstone
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just wondering how you ended up going w the module mark?
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