Modulen help?

chippy

chippy

Joined
Jan 12, 2012
Messages
11
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
 
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. :goodluck:
 
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.
 
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!
 
Hey!

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! :)
 
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.......
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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_0000382132

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.
 
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?
 
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.
 
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?
 
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.
 
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!
 
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.
 
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?
 
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!
 
Hi Joshua, I feel that the Modulen has been my biggest help. I feel that the Modulen has helped me with 3 things:

1. Crohn's. For the first time in 2 years I am tapering my prednisone and may even be able to stop it completely within a few months.
2. As I mentioned in my above post, I have not been able to consume coffee for about 10 years, but now am able to drink it every day, which is an absolute miracle. I can't even begin to explain how incredible this development is for me. I truly believed I would never be able to drink black coffee again in my life.
3. I have also had some sort of odd allergy to down products and even to faux-down products, also for 10 years, which developed out of the blue and it's even more odd because my allergist tested me for down and then told me that I was not allergic to down (yet I couldn't get even within 2 feet of it). I removed all such products from my home 10 years ago, after having used them for 10+ years without issue. I tried a down pillow a couple years ago and found I was still unable to come within 2 feet of it without plugging up my nose for several hours. Recently however, I have been able to reintroduce the down pillow and although it sometimes makes me sneeze, it doesn't cause the congestion like it used to.

All 3 of these enormous developments for me occurred about 3 weeks after seriously committing to the Modulen. I made this serious committment because I felt that every other option had completely failed me:
*prednisone
*Humira
*my recent surgery #3

I'm left with the impression that these afflictions I've suffered, and the incredible improvement which occurred so quickly (~3 weeks) after consuming the Modulen, signify that my body was deficient in some sort of building blocks which aid cellular repair and/or rebuilding. I wish I underestood how this stuff works for me. I can speculate that it somehow provides certain amino acids or whatever nutrients that were previously lacking. I've read that there is whey and casein in Modulen. It makes me wonder if I can find some cheaper product on some store shelf with whey or casein which might work just as well. I've read about bodybuilders using some whey products; I'd like to try one because Modulen is extremely expensive and is a pain in the butt to go to Canada and bring it back across the border.

I do get some gut pain every time that I step down by 1mg in my prednisone tapering regimen, but I stick with it and the pain seems to diminish within about 1 week or so, which is completely different from before, when I couldn't get below 9mg for even one full day.

I'm eating foods that I haven't dared eat in more than a decade, such as onions for example. I had forgotten how wonderful an onion tastes. I've eaten so much in fact that I am now overweight and weigh more than I ever have, so I am now focused on reigning in my excess consumption and trying to do some exercise. I feel really rotten about my weight and poor condition, but otherwise I feel much improvement.

Wishing you well. Regards!!
 
my son diagnosed with crohn's on sept 2014 he is taking pentasa and ento cort 9 mg till now and we introduce imuran 50 mg since 35 days now and his test of calprotectin is over 1000 so the doctor decided to start with him eternal diet and we started modulen IBD formula since 4 days and stop all the foods. today my son inform me that he had soft faeces fro the first time . anyone have any idea am afraid that he will have diarrhoea again
 
Welcome to the forum! It can be fairly common for EEN with a formula to cause softer bms. For others, it can cause constipation. One of the parents described it as liquid in liquid out. It wasn't that way for my son but he wasn't on 100% EN.

I will tag some parents that have had experience with EEN

Maya142, jmrogers4, pilgrim, farmwife and Tesscorm
 
Hi lubaexperts, My Grace had the problem of constipation. Many have said it was liquid for them. If it becomes an issue the GI will be able to offer advice on how to slow down and firm up his BM's.
I hope it works wonders for him.
 
Yes we had extremely soft or liquid on EEN, but it was different then Crohn's symptom diarrhea he says. There wasn't necessarily the urgency you get just when he had to go it wasn't solid most of the time he described it more as fluffy as opposed to straight liquid. He averaged 1-2 a day. There was no pain and we used the wet wipe TP.
GI wasn't concerned as it wasn't an all day/many times a day issue so he wasn't worried about dehydration.
 
Yes, my son was the same as above. While he was on exclusive EN he had 'diarrhea' but no pain, no urgency, and only a couple times per day... and it was our hospital's dietitien who'd advised that this isn't unusual, ie liquid in, liquid out. My son's was also very light coloured, again, likely affected by colour of the formula??

But, there's certainly no harm in letting your GI know... especially if your son begins to have new symptoms like pain, blood or mucous.
 
I used modulen for nearly 29 months. Soft stool ( and some cramps ) was the usual till I diluted the formula. Just put less numbers of scoops on the same amount of water. Hope this will help.
 
I would check with the GI before changing up the formula, if less scoops means less calorie intake it could affect weight gain/growth in a child on EEN couldn't it? I would at least make you you are adding more formula intakes(if by mouth) or adjusting time or rate if by ng tube and pump.

I'm not certain about how modulen works as we were on another type that was pre packaged liquid so we knew by the number of cans the calorie intake for the day.
 
My daughter had a lot of diarrhea when we first started EN. We eventually switched formulas, from Peptamen Jr to Neocate and that made a big difference. She does still have loose/liquid stools, particularly in the morning (since she runs her feed at night - she has an NG tube) but it's 2 or 3 a day, not 7-8 or even more, like it was with Peptamen Jr.
 
My daughter is on her second 6 week treatment of 100% enteral nutrition. We are using Ensure. For the first few weeks typically 1/2 formed and 1/2 liquid stools. Then around week three we see some good formed regular stools.

We work with a dietitian. She is great. She calculates how many calories we need her to have every day and also how much added fluids (just water for us) to prevent constipation.
I would be patient and give it some time, but of course always contact the GI if you are worried.

For us, the enteral nutrition helps immensely. Unfortunately, whenever our daughter goes back on food, her symptoms return.

I hope you can find something that works.
 
I didnt mean that the total number of scoops should be reduced, you can simply add more water to the same number of scoops. Just dilute the formula, this is what worked for me at least.
 
I'm sorry sue2003, the wording you used, "less numbers of scoops to the same amount of water" made me think you were reducing the amount of calories.
 
D was never one of my Crohn's symptoms but on EN I would be going up to 10 times a day and the stool would be liquid and sometime green in colour. My dietitian said that was normal for some people and not to worry.
 
thanks for all of you . he started today 100 % modulen powder without any food and he went till now once to the bath and it was diarrhea I will see what will happened with him
 
Pilgrim said:
My daughter is on her second 6 week treatment of 100% enteral nutrition. We are using Ensure. For the first few weeks typically 1/2 formed and 1/2 liquid stools. Then around week three we see some good formed regular stools.

We work with a dietitian. She is great. She calculates how many calories we need her to have every day and also how much added fluids (just water for us) to prevent constipation.
I would be patient and give it some time, but of course always contact the GI if you are worried.

For us, the enteral nutrition helps immensely. Unfortunately, whenever our daughter goes back on food, her symptoms return.

I hope you can find something that works.
Click to expand...

Hi,

I just wondered what people's expereinces are of food reintroduction?

Has anyone ever done a gradual reintroduction of foods like that in the LOFFLEX diet?

I've come off EEN for the second time now, and am trying to reintroduce foods again!

The D and tenesmus increased for me on EEN too - it's because the molecules are broken down, so it'll draw water into the bowel.
 
hi , I want to ask my son after start modulen I told him to brush his teeth after each time he drink modulen as he complain from strange smell but when he go to school what kind of thing he can do instead of brushing his teeth at least at school ?
 
Make sure he rinses, swishes his mouth with water after drinking. We were told this by dentist as the sugars in the drink stick to the teeth.
 
As long as his school allows it, My son was allowed to chew sugar free gum. I talked to the school and they allowed it while he was on EEN. Check with the GI if it is allowed.
 
ncman said:
Hi,

I just wondered what people's expereinces are of food reintroduction?

Has anyone ever done a gradual reintroduction of foods like that in the LOFFLEX diet?

I've come off EEN for the second time now, and am trying to reintroduce foods again!

The D and tenesmus increased for me on EEN too - it's because the molecules are broken down, so it'll draw water into the bowel.
Click to expand...

You might want to start a whole new thread asking this question, as it would be interesting to read the responses.
 
hi all
my son has diarrhea first day twice then next day normal but very small amount and today he did it normal but he told me when he washed the area with water there is a burning sensation and before that he was itching this area any idea am worried . I tool an appointment with the doctor tomorrow evening . his crohn's diagnosed in the terminal ileum and very few in the colon
 
He could have a small fissure or it good just be aggravation from bms. Have the GI take a look but it doesn't seem to be something that can't wait until then. If he starts to run fever or exhibit new symptoms then a call in to GI wouldn't hurt.
 
thank you clash for you help i was so worried about him we still new in this way and am personally so much worried as he is my only son
 
hi please am in 6th day of modulen use for my son 17yrs old
he is always hungry and became upset he is taking 2000 calories and today I rasised it to 2500 Kcal and he is still hungry I dont know what to do I dont want him to quit I want him to continue until he become better please any advise it may help him and help me
 
My son, at seventeen was on 2700 calories a day and he was exclusive EN. If he is active he will need more calories. The nutritionist, GI nurse or Doc should have the number of calories calculated by age weight and activity. You might put a call into the GI.

Lastly, is he hungry or just feeling the need to chew? Some GIs allow sugar free gum or hard candy as well as broth or jello to help with the need to "eat" since it is all formula fed.
 
hi clash thank you for answering me always, He is telling he is hungry and when I told his doctor he raise it to 2500 Kcal because my son going school and gym and told him its not to increase more not to put load in liver and kidney
so Really dont know whtat to do he became very nervous and disappointed
 
Hmm...I'm going to tag some members that have some experience with their kids on EEN as they may have more info, my little penguin Tesscorm maya142

How much does your son weigh? How long has the EEN been scheduled for?
 
Is he spreading them out during the day ?
Ds had two breakfast
two lunch
after school snack
two dinner
one bedtime snack

Not sure on the liver thing unless they are high protein.
I know my older chikd drinks supplement nutrition that is for adults with 16g of protein each
Gi said its only an issue for tiny kids (ie 3 year olds)

Also he may need to chew
Ds had gum
Shaved ice with a sprinkle of pure cane sugar
Sugar "cookies" - pure sugar boiled with water poured into silicon molds
Those were only once in a while though
Chewing is a big part of hunger
Let me see what I can find on liver stuff
 
Hi my little penguin , yes am spreading it all over the day and he keeps saying its filling my stomach only for 20 mins only then am feeling my stomach empty and this hunger sensation making him very nervous . HIs GI allowing him to take only 7 up which he hate it already .
 
How old is your son?

We didn't do EEN (just supplemental EN) but my daughter who is 92lbs and 5'2 has to have at least 2200 calories to gain weight according to her nutritionist. If she was exercising or more active (and right now, she isn't very active because of her arthritis) she would have to have even more.

I can imagine how awful is must be for him to be hungry all day. Any chance you could see a nutritionist? Or at least ask about allowing broth? Hope things get better soon.
 
hi maya , he is 17 yrs old and he is active and unfortunately no specialised nutritionist here all what available is centers concerned of weight loss issues as a kind of business I dont know if its correct to raise the calories from 2500 to 3000 will help him and he will not feel hungry any more
Maya I want to ask you do you have any idea how long it takes the fecal calprotectin results to come down proximately
 
I'm not sure exactly I think someone (MLP? Clash?) said it can rise quickly but takes a while to fall.
 
My son was almost 17 when he did EEN, he was taking in 3000 calories per day in formula plus he was allowed broth, jello, popsicles, freezies and clear drinks (7-up, ginger ale, gatorade, etc.). My son didn't 'drink' his formula but had it overnight through a naso-gastric tube. This meant that he did feel hunger by dinner (as all his 'food' was given overnight), a bowl of broth helped quite a bit (he would have two to three bowls over the day) and distraction was important.

Re liver - at one point, my son's ALT and AST figures were slightly elevated, this was after he'd finished 6 weeks of EEN and had then been on supplemental EN for over a year, his GI's comment was that his elevated hepatic transaminases (ALT and AST) was likely secondary to his ongoing EN. Unfortunately, I don't have more info than this as this comment was included in the GIs summary notes when my son transferred to an adult GI. Having said this, my son continued with supplemental EN and his ALT and AST returned to normal after a few weeks.
 
hi all , my son after complete 12 days of modulen powder his calprotectin results dropped from more than 1000 to 69 which was amazing, his doctor told us he should complete 6 weeks and my son so disappointment any idea how long he should stay thank you
 
That's great that the EEN is working. It has near the same results as pred at quelling the inflammation but only while he is on it. When the EEN is finished the inflammation will return, same with steroids. Usually, while doing EEN the GI also adds a maintenance med. These meds can take a couple months to reach full therapeutic levels so you stay on the EEN for 6-8 weeks to give the maintenance med time to take over.
 
hi clash,
he is already now on 6 mg ento cort and 40 days on imuran 50 mg and pentasa granules

the doctor decided today to convince him to complete 6 weeks more but he dont want and we came to an agreement to finish 4 weeks then will see him again
 
That sounds good then. It can take Imuran up to 3 months to reach full therapeutic levels. And entocort can take a bit too but not as long.

At this point, you probably cant be certain whether it is the meds or EEN bringing the inflammatory levels down so I can see why the GI wants him to stay on the EEN. Once he comes off the formula feeds they may run tests to see where the Imuran is at levels wise. And with time you can determine if it was the EEN affecting his inflammatory markers or if the Imuran has kicked in.
 
Hi Lub, How is your son doing? I could eat boiled sweets, but for me with no real fruit as I have an issue with fructose. Would he be allowed wine gums or jelly babies? Sweets used to help fill me up. I know the hunger too. I, like many people, used to perk up after a meal, unfortunately we don't get that on liquid feeds. In fact its a bit depressing not to eat and to feel hungry. Other than sweets I don't know what to suggest, but good luck.
 
hi spooky1 and clash,

My son is fine yesterday completed one month pure modulen diet and his calprotectin 42 normal now and after one hour he will have colonoscopy as he refuse to continue more than that
so his doctor told him that the test is good indicator but not giving the full image so they made a deal and will do colonoscopy so the doctor will see if he can start lowfflex diet or continue at lease 2 weeks more on modulen diet and today we will see

thanks for the information and asking about him I do really appreciate that hope all the ppl with this disease and any other disease to get well soon and enjoy their life
 
Lub, you have the most amazing attitude. You are obviously one very caring mum, and I think you must have really been brilliant at persuading your son to continue otherwise I think he might have cheated on the Modulen diet long before now. Well done. I hope his colonoscopy goes very well and that he gets his own way and starts that Loflex diet today, lol.

Give him our best wishes, especially for the highly undignified colonoscopy.
 
thank u spooky1 for you nice and warm words
he did the colonoscopy and an amazing results we got thanks for god a complete mucosal healing was noticed so they did not even take any biopsy then the doctor was really surprised and my son win the deal so the doctor said as a doctor i wish he will complete 8 weeks on modulen but as per deal I will let him introduce small amount of white rice and potato and very very little white fish for the coming 10 days and will see caplrotectin weekly then we will see accordingly what to introduce more food , and as will he will continue modulen with these little amount of food and my son was so so happy and fully agreed

thanks for all of u for asking and for the good informatiom
 
hi all , my son start eating very small amount of steamed rice and potato and very very small pc of white fish after the colonoscopy only once a day and still on modulen powder the fecal calprotectin rises to 277 again and after 2 days 931 am felt worried and the doctor saif let continue in our plan for other 2 weeks and test it again as by this date imuran will be completely kicked in and complete 3 months . any idea please
 
I have issues that are similar, I stick to salmon and potatoes, with a bit of mackerel in spring water. Can he have boiled mints to suck? I always whinge that my intestine hates any kind of food. I'm sorry I'm not the only one.

keep us posted.
 
Dear Spooky
thank u for your reply,I would like to ask How you know that your gut dont like food ?? what you feel exactly? as my son only took a very small amount of what I mentioned before and not feeling anything wrong its only the fecal calprotectin raised . his doctor told him yesterday to continue for 2 weeks and am surprised and we are waiting till 18th of january to the test again and see
 
I have exactly the same issues. Even with bland fish and boiled potatoes my bloods and stools are not good. makes me feel that perhaps even if I think im in a better phase, I'm not. But then I always feel utterly exhausted. Maybe it's something to do with RA, or other issues. I am always searching for the best diet for me and the Crohn's but I haven't come across it yet. So I'm not surprised your son has these issues too.
 
sue2003 said:
I used modulen for nearly 29 months. Soft stool ( and some cramps ) was the usual till I diluted the formula. Just put less numbers of scoops on the same amount of water. Hope this will help.
Click to expand...

Thank you very much. I also had more bms and some cramps with modulen and your method works.
 
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Stopped the modulen, again. Cramps, D, softer stools, massively increased blood in stool, migraine, hemiplegia... Back to paleo again. I suspect casein and high sugar content are responsible for these effects.
 
Last edited:
I suffer with Casein too. The sugar content is difficult for me too, and if I have my peg on more than 50mls per hour, especially at night, I am awake or having very vivid dreams. think this is the sugar levels.
 
am here again , am so disappointed my son calprotectin raised again to 750 even he dont have any symptoms just eating very basic lawfflex diet its just white fish very very small portion with steamed rice also limited qty and boiled potato without skin and newly steamed chicken with very thin bread and all that once daily and taking full can of modulen and am really so sad , any help to decrease calprotectin and by the way his doctor raised the imuran from 50 to 100 mg before one week, please anyone can help me as my son has A level exams after 2 months and I dont want to start biologic
 
The only suggestion that I can make is to go back on full EN and then when the calprotectin has gone back to have him start eating on a full elimination diet rather than the LOFFLEX which is a partial elimination diet. I tried to resume eating on the LOFFLEX diet after full EN several times and relapsed very quickly each time. I did not achieve remission until I used the full elimination diet. However, I did not have access to calprotectin tests so I don't know if my symptoms correlated with fecal inflammation levels.
 
It is really hard to do EEN. If he isn't symptomatic, then I can understand that he doesn't want to do it. I was only successful because I was extremely ill and I really had no alternative at the time. I agree that it is really important that your son's mental well-being is considered and that he feels that he has some choice in his treatment. I also think that that your relationship with him, and his with his doctor, needs to stay healthy and intact. Some of the parents in the parents forum may be able to share their experiences about when to be a bit pushy with treatment options and when to back off.

I am tagging forum member helena101 for you. She did EEN, LOFFLEX and then a full elimination diet while on medication. She was monitored with fecal calprotectin tests as well and I remember that initially the levels kept climbing. She may be able to offer some suggestions. I haven't seen her on the forum for awhile, so I don't know if she will respond.
 
hi
my son calprotectin is over 1000 again he is not feeling any symptoms except burping since one month now, doctor suggest to add humira inj and I feel so afraid to agree , am really crying what I should do , any suggestion plesssssssssssssse
 
So sorry to hear that his disease is active. Regardless of symptoms or lack there of it is apparent from the FC test that there is inflammation occurring that left un treated or under treated can lead to serious irreparable damage and the perecentage of that risk is much higher than any risk of the rare side effects that come with some of the meds. Make a list of your concerns and questions and go over them with the GI. Good luck.
 
thank you clash , I know well but as a mum and also am a pharmacist it makes the thing more difficult for me, I dont know if am correct bur we increase imuran dose just 2 weeks back and what am thinking is just to wait little may be imuran higher dose will works , any idea , did this increase of dose need also 6 to 8 weeks to kick in ?
 
That seems appropriate, giving the med a little longer then maybe running tests again.
 
I agree, Imuran takes a time to kick in. If he's tolerating it, just wait a little longer. I didn't do well on Humira though, so I understand your worries. Good luck, and I hope your son improves soon.

Must be awful being a pharmacists and knowing all about these drugs, at least we patients are quite innocent of meds and their side effects.
 
hi spooly1 , I hope all crohn's ppl get well soon , he was doing well and we thought he start to enter the remission but once he started to eat simple food once daily his cal protectin goes over 1000 in 3 weeks so we started today exclusive modulen again and waiting the imuran to start work again for the other 50mg which we add it before 17 days only , I hope as today he noticed some watery diarrhoea once today then solid stool again

I want to ask is burping meaning anything in crohn's flare any idea?
 
burping can simply be wind, although in Crohn's people it can also be something more. Does he have ulcers at all? Possibly things aren't being digested as they should, even with modulen which is dairy based. I have problems with the dairy based liquid feeds.
 
hi spooky1 , no he dont has ulcers , may be he had sever inflammation when he diagnosed
his doctor said that he did not complete 8 weeks on modulen and 4 weeks was not enough to put him in remission even if the endoscop shows healing and now he should complete 8 to 10 weeks in induce remission again. he stared today am feeling so sad for him and I hoope when he finished and start lowfflex diet not to relapse again that fast
 
Some people do relapse very fast. Some of us are constantly on liquid food and just a few basic bland foods. I hope he goes into remission. Many younger ones do once they get used to liquids only. good luck to you and him.
 
hi all, my son stated exclusive modulen again on 16th of feb and in week one his fecal calprotectin still over 1000 and doctor told lets test it tomorrow 3rd week and see today I shocked when my son told me that he saw blood spot in his stool and this is the first time we saw blood in stool since he diagnosed in sept 2014 we never saw blood am too much worried , I called his dr and he told me dont worry just let him continue please any idea am really worried
 
It can take some time to see the fecal calprotectin results decline. I hope that with continued EEN you will see good results. The symptoms of CD can be so scary, I would just keep the GI updated on any changes.
 
thank u clash, sure I will keep him updated , But any idea what that blood mean ? am so afraid as in 1st week of may he will start A level exams
 

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