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Modulen help?

If it was just a spot of blood it could be irritation from his bowel movements. Or since he isn't in remission yet it could be from the inflammation. It isn't uncommon during flares but I would just have him keep an eye on his bowel movements.
 
I agree with Clash, Lub.
I regularly have blood. Sometimes it's cos bile has been like acid and taken skin off my bum. Other times it just gushes out, prob a fissure or something. Again, it can be from higher up.

Best to keep a good eye on things. At least you have informed the doctor. Inflammation will take time to heal. Maybe 6 weeks for the viliai (sic) to regrow.

good luck and think positive. Hope he's not in too much pain.
 
clash and spooky1 am really so thankful for your reply to me . today he had stool with no blood , my son has no any pain and no symptoms at all and hope he will continue , we will do fecal calprtectin today to see any progress after 3 weeks on modulen
 
Gosh, no pain and no symptoms. That's really good, especially with exams coming up. The stress situations can wreak havoc with Crohn's, Lub. Bet like me and others he's sick of liquid feed. Life could be so different for us if we just didn't have to put up with Crohn's.

Must say, even when my symptoms are somewhat better my bloods reveal bad inflammation. But then we Crohnies can have arthritic issues which can also show up as inflammation.
Hoping the 3 weeks pass well for him.
 
hi calprotectin now 127 it fall down now after 25 days of full modulen we finished now 4 weeks and 3 days and hope by next week to come down more , esr and crp all normal
 
hi today calprotectin is 77.6 the doctor told me its basic normal so lets continue and wait before reintroduce food as tomorrow he will finish the 5th week
 
That is not a huge fluctuation but could be the start of a trend so may just have to wait out a few more tests. My son's GI will usually run the tests every three mo the during a flare.

I wouldn't be overly concerned until there was a solid trend.
 
Thank u clash. We are doing the test every 10 days now to see the progress of modulen and i was thinking that it should drop not coming up even its slight raise. May be he start to stress as he is one month from A level exams
 
I've never heard of the fecal calprotectin being used that way as just with blood work it can take some time for the lowering of inflammation to show up in the test. So in any given 30 days you may have numbers that are within a 20-40 pt range. I'm going to tag my little penguin and see if she has anything to add.
 
thank you clash , really i dont know may be the doctor want to see how fast modulen affect him , as the first time the drop was so fast in 4 weeks and now we are in the 6th week and still not crossing the normal range , I want to ask if you have any idea , is it possible to have a normal range with crohn;s ppl or there is a range which s positive but considered normal for them ??
 
It really depends. For instance, Labcorp lists their NNR(normal reference range) is <50 whereas Quest labs using the same unit of measure lists the NRR as <163.5. So that in itself is a difference in normal range just from lab to lab.

Then a lot of GIs are pleased if CD patients stay under 200 some even 300. It varies from GI to GI but best case scenario is at some point you get imaging or scopes along with the fecal calprotectin to show how the number relates to what is seen in other testing.

My son has had a low of 48, a high of 1700. At a level of 300 he also had a scope and MRE which showed there was simmering inflammation still doing damage.
 
I too would wait. It could be the stress of A levels causing stress which may affect the calprotectin levels and indeed crohns itself.

Give him our best for the exams.
 
Could stress affect calprotectin?

I could see stress making the Crohn's act up which increases calpro, but stress itself? I thought calprotectin was a very specific marker.
 
No because if stress produced inflammation then goodness knows that everyone would have high levels. Stress could contribute to a flare(some people claim stress a trigger) and the the flare could be picked up by the test due to the inflammation.
 
I do have to confess that stress causes my crohns to flare worse, but then if stress is bad at any one time then all symptoms and bloods show problems with markers in the blood. Lubna, how are all the Crohn's symptoms at the moment? Or is it just the Calprotectin?
 
thanks all for sharing me my problems am really feel I have a family here.
my son has till now no symptoms and I can feel that A level exams upset him more now a day as he has heavy materials , the blood tests ESR, CRP on 11th of march was all normal , and he is taking till now 3 mg entocort for 7 months now and imuran 100 mg and pentasa 2 gm
Am really afraid as the tension will increase as we are coming more near to the exams dates in first week of may
 
Oh dear, perhaps as Clash stated that levels are variable then maybe it isn't too bad. How is his health and is he feeling ill at all?
 
Yes, that is an upward trend but again fc test aren't generally used in such proximity since it can take a while for the test to produce declining number in relation to the slow healing in the bowel.

It might be wise though to call the GI about upping the Imuran or placing him on a higher dose of entocort.
 
lubnaexperts - is he eating anything else at all? Or are you doing exclusive EN?

If it's not food, then maybe the stress is playing a factor here?

It should be possible in most straightforward cases to induce remission on the EEN alone.
 
Dear All, many thanks , his health is fine nothing noticed thanks to god , but he is so so so stressed and afraid from exams and very stressed to miss his grade and not going to match his university offer.
ncman, yes he is not eating at all since 8 weeks and it was coming down gradually then start to raise slightly 77,100,117 as the exams become so near
I will see the doctor today and am sure he will extend the modulen more and dont know my son reaction to that as he was thinking its only 8 weeks and dreaming to remove entocort 3 mg as he is now 8 months in entocort
 
we went to his doctor today, and after discussion and he knows that the exams are on 7th may he said let start food introduction in first of may and we will keep the 3 mg ento cort till exams end on 16th of june as a kind of protection and in this way he will complete 10 weeks and few days in exclusive modulen , the doctor wish to complete 12 weeks but my son refuse as he became tired, and the doctor saif about the calprotectin results its a variations and he said we will not do the test till the exams finished as he dont want him to upset during the exam period because if it raised because of food introduction he will be upset during the exams and he said exams now are the priority and nothing will happen in 45 days
 
hi . hope all are fine , am here back again
would like to ask am still giving my son the lofflex diet since 1st of may he was fine and we noticed loose stool with tinned tune and mango , we did 5 days back CRP and ESR both are normal , I hope that this reflect that fecal calprotectin is ok as well , as we didnot do it as the doctor not advise us to do till the exam end, before yesterday he had the graduation dinner and he insist to eat with the students and I tried my best to choose the safest for him , but he got diarrhea today am disappointed and he decided to take pure modulen for 2 days for a hope to get to solid stool again.
I wish to know is there any correlation between CRP, ESR and calprotectin values as am so worried?
warm hugs
 
There is not always a correlation between CRP, ESR and Fecal Calprotectin tests. My son always has normal inflammatory markers with blood work but his fecal calprotectin shows his inflammation.

When we did a baseline of lab work, colonoscopy, MRE and Fecal calprotectin at the same time the scopes, MRE and Fecal calprotectin showed his inflammation but his CRP and ESR did not.

Also if just one meal is causing issues then he is probably not near remission. Is he on any other meds for his CD? It may take more than a couple days of formula to get him back symptom free. And if continues that any time he eats outside of his diet he experiences symptoms then I'd get regular fc tests(every 3 months),if fc is a good indicator for him, to ensure you are truly achieving remission and not just staving off symptoms.
 
Dear Clash,
Thanks for sharing with me all the info you have, actually my son is on imuran 100 mg and entocort 3mg and pentasa 2 gm, and while he is on lofflex he is fine without symptoms and this is the first dinner as buffet he experience diarrhea after 2 days , first time outside he eat steamed white fish with steamed vegetables and nothing happened, am feeling so worried from the test on 16th of june as he spent 11 weeks on full modulen and till now he is taking 2000 calories from modulen and 2 meals of lofflex list, I hope he will reach the remission otherwise he will be disappointed as he dont want to take pred tab or humira inj
 
Ahhh so this was way outside his lowflex diet? How long has he been on entocort and Imuran? It can take Imuran a few months, 3-4, to reach therapeutic levels.

I wouldn't get worried yet. A drastic change from what he has been eating could 've caused his change in bm and not connected to CD. For instance, I mainly eat vegetables, chicken and some fruit and if I goto a buffet where there is a lot of grease involved it will cause me to have D and I don't have CD.

Also, has blood work been a good indicator for him in the past? If so, then there is no reason to think that has changed.

If the D persists then letting the GI know may be a good idea, he may move up the fc or get more labs.
 
Dear Clash,
He is taking imuran 50 mg since end of october and raised too 100 mg in january end of 2015 and ento cort since sept.2014.
his blood work before has high esr and CRP as the calprotectin up and once down both before also come down and as I told you we are not allowed to do FC now as his doctor wanted him to finish his exam and we did blood work as regular check of imuran and we added ESR and CRP and iron and ferritin to have an idea which might give us some idea of whats going on after he started his lofflex diet
 
If his blood work is usually a good indicator then it sounds as if things were moving in the right direction at least before the graduation dinner. Hopefully, he is headed toward solid remission. Maybe just track symptoms and if the loose stools continue or other symptoms show up let the GI know.

I hope things continue to improve.
 
Hi,
it's sad he responds so badly after being perhaps symptom free for a while. It might help to remember that there are some who have Crohn's who just don't have diarrhoea but do have inflammation. Likewise there are some who have had intestine removed and have daily diarrhoea but no inflammation. It's hard due to his age. I was like that as a pre teen and have been on the loo ever since. If only we had a cure!!! Veg for me would be so hard to breakdown and digest.

Tinned tuna often isn't too bad, but fish can be 'oily' and cause a few issues, and mango is also probably fibrous with fructose. I can't do fructose for some reason, it really gives me grief. perhaps try and stick with the lofflex and as Clash has said, perhaps the Crohn's isn't in remission at all yet. as I said above, people can be diarrhoea free and still have inflammation, even if they aren't in pain.

Secretly I am pleased he joined in an occasion. I always try to with weddings, over xmas, and other special occasions. However, I still choose the less difficult to digest, so bland really. Otherwise I seem to pay the price too. Your son has a memorable occasion to be proud of, he should secretly be pleased too.
 
THANK YOU SPOOKY1 , I really appreciate your nice wording and feeling.
He is in pure modulen since 3 days now as he is in the middle of A level exams and very hard exams coming in the next 6 days , then we will do fecal calprotectin and see as last reading on 30 of april day before we started lowflex was 117 , lofflex is good for him but he start to be bored as no bread , egg , milk , all wheat products and dont know if we can start reintroduction of the food , I hope but all will depend in his test results by next week
 
Don't be discouraged if the FC result doesn't drop substantially since it can sometimes take 3-4 months for FC to start reflecting what is going on as far as a downward trend. It's important to look at the trend over time when the FC tests are relatively close together.

Some of the diets can be restrictive in the induction phase but offer more when you move through the other phases. Maybe your son could keep a journal, rating symptom improvement, energy levels and such as he progresses with the diets so he will be able to see on paper what improvement has been accomplished. This may give him the motivation to stick to it.

Good luck on all his upcoming tests! I hope he does great!
 
I always love egg salad sandwiches. I cannot cope with the egg, milk and wheat, nor salads lol. Once in a blue moon I would have one. In fact, it's probably less than the occurrence of a blue moon.

Hoping he gets some great grades for his 'A's and that he can at least focus well.
 
hi all , how are u clash and spooky 1
my son did the fecal calprotectin yesterday done and it was 115 we were so happy and the doctor want us to start remove entocort so for 10 days now he will take it every other day then stop it and see and during that we will start food introduction , and my son want to start introducing bread , any suggestion which best kind of bread to start with ? warm thanks for your support to me always
 
Wow, good news at last. I think basically white bread is considered easier, though personally I find gluten and dairy difficult, however others have no issues.

Hope all exams are over now and the stress is less.
 
thank you for your wishes , I read today in prof john hunter that reintroduction of food should be in specific order and bread is still so far , and we will start shortly with egg
 
hi all,
today calprotectin of my son is 371 so upset , this is after 5 days of removing entocort 3mg , the doctor said we will not return entocort as he is using it for 9 months and its enough for his health and growth
he is thinking to increase imuran again from 100 to 150 mg daily and introduce food slowly and see, any advise
 
I know how you feel, it's so disheartening that this happens. I have to confess there seems to be little to assist with full control of disease and its recovery or remission. For some it's easier as they respond well or perhaps don't have it so often or severely. I know what it's like as I never get it into remission, but then I also have other auto-immune issues to deal with too. they can make life difficult to cope with. Does your son have other auto-immunes at all that could be putting in an unidentified appearance?
 
Am here again after summer vacation with my son , he did great in his exams and got an offer in the university of sheffield to study engineering.we did 80 % of reintroduction of food and remaining few to test and there was no any reaction to any and he is stable with no any symptoms, but today we did calprotectin and we found it 637 am really so sad and want to cry , he is travelling soon and his doctor told me give me couple of days to think what is the best thing to do before he travel to uk and he may do colonoscopy again , and i want to add that he ESR and CRP is totally normal , any help from you my freinds
 
Im sorry he got another higher fc result. This disease can break our hearts!

There are no food that affect my son. He is asymptomatic yet he still has active disease. His CRP and ESR are always normal but his calprotectin levels always tell the tale.

You may consider switching to other meds like biologic or adding them to existing meds.

Also I'm going to tag Mr. chicken as she has a kiddo on a special diet that has helped her son reach remission along with his meds.

I know EEN probably isn't a great option with him traveling.
 
thank u clash for fast reply.
but my son hates injection and refuse to take biologic , so dont know what the doctor will decide, did your son tried biologic? is there any better result with this grp of medicines?
 
My son was started on Remicade at diagnosis which is an iv infusion. It was the med that took all his symptoms at the time of diagnosis away ie severe fatigue, fever, joint pain, mouth ulcers etc.

The biologic he is on now is Humira which is a self injection he gives himself every 14 days. He doesn't care for the injection compared to the remicade but honestly it's only a concern for the moment of injection time. He doesn't think about it beyond that.

Since he is headed to college humira will be ano easier option too since with remicade he had to go every 6 weeks for 3 plus hours for the infusion. Still during high school he used that time to do homework and stuff.
 
is humira reduced the calprotectin ? did he reach remission ? as also am afraid from side effects of biologic !! add to that what after that if we started biologic so early , am really so confused from this strange disease who spoiled our life
 
He's already on Imuran or 6mp isn't he? The latest studies have shown that the serious risks(like the fatal HSCTL)listed for biologics are the same with the meds imuran(azathioprine), 6mp or methotrexate.

For most kiddos it takes the more aggressive meds because for some reason the disease is more progressive and aggresive.

I don't have other meds beyond adding methotrexate to the biologic to compare to since C started with a biologic right after diagnosis.

C's disease had been hard to quell with even the biologics but I don't think his is typical most kids start biologics and reach remission quickly.

C also has to have the biologic for JSpA which is an arthropathy that can occur with CD.

I'll tag some other moms whose kids are on a biologic. Maya142, crohnsinct Tesscorm those are a few. Maybe they'll be along shortly with their experiences.
 
Sad about the FC but back onto foods, done well in A levels and an offer from Sheffield Uni, and he's off travelling! At least there is some good news. Is he off for the year before uni? Hope all goes well for him, I really do. Let's hope stress doesn't get to him.
 
hi , sppoky1 thank u
he did today MRI and just received the report and it saif mild spleenomegaly dont know is that serious am so worried waiting for the doctor

this is exactly what they wrote :
Spastic collapsed short segment of the terminal ileum measuring about 2.6 cm in length with mild
circumferential wall thickening. No contrast enhancement. No adjacent fluid collection or
mesenteric edema.
 Prominent mesenteric fat of the ileal loops with congested mesenteric vessels on post-contrast
series.
 Mildly enlarged spleen, splenic span measures about 12.8 cm.
any idea what that mean am so worried as he is travelling and will be alone
 
Hmm, has some crohns activity going on there then. Docs will want to be monitoring and treating it too. I'd say, depending on how he feels his crohns is, that he go off and travel, but stick to the boring bland food like bland tinned fish, tinned potatoes or smash, and take plenty of loperamide and perhaps painkillers like codine. Really hope he gets to travel as he's studied hard enough to deserve a great break. Where is he off to? Mind, get him to see the gastroenterologist first. Not sure about the spleen either. Perhaps someone else will know what is wrong there.
 
hi spooky1, thank u for yr comment , he is travelling to sheffield in 4 days, his doctor saif by phone that there is a mild inflammation and want to see him before traveling for advises and today evening we will see him and told us to repeat calprotectin before meeting him, the surprise that we did it yesterday and it was 35 !!!! the first time negative I called the doctor he told me really amazing but really that is unusual and told me its better to repeat it , so am going to do it early morning today to get the result before we meet him
really i dont know what to say
 
perhaps there was a mistake on the 35? I can remember when I was young I used to have very high white cell count but felt fine. My doc told me obviously there was inflammation in the body somewhere but they didn't know where so not to worry about it. Sometimes when I feel fairly well my fc is high and sometimes when I feel ill and totally fatigued there isn't much in the way of markers. This is a peculiar thing this Crohns. Can only wish him luck.
 
If you Google the fecal calprotectin test you will find info regarding false negatives. Sometimes the test will give a low value even when inflammation is present. This most often happens with adolescents but can occur across all ages.

If the trend has been higher fc results then a lower one followed by a higher one false negative is the most likely explanation.
 
hi, happy new year for all of you, long back i didnot post anything
my son travelled to uk for university with calprotectin level of 218 and he came here again in Christmas break and he was eating there everything except deep fried , he has no symptoms and i did for him calprotectin test before 10 days and it gives more than 1000
so we stop eating except one meal a day and it was baked salmon with potato and the remaining is modulen again and i start also give him snake with bread gluten free even he is not celiec, yesterday i did calprotectin again but in 2 different labs for the same sample and i shocked that both give negative results 36.5 and 38.3
i really dont know can i trust this result any one can explain for me that ?

many thanks for all of u
 
Here in Britain we don't get given results for calprotectin unless we specifically ask, then the docs just stare at us as though we shouldn't even know what they are.

I'm on elemental 028 Extra and also have bland fish and potato. I do find any other foods affect me though.

Perhaps more importantly how is your son feeling. Has he coped with the transition to university? Was he ill eating normal foods? You say he is symptom free. That probably means he's ok to continue his life, but sometimes would do better for the liquid diet and the bland food too.

Personally I do eat naughty food over xmas, but I pay a hefty price, so a few days only.

Can I ask where you live, please?
 
How much time had passed between the result that was 1000 and the two results that were in the 30s? It's possible that the inflammation was brought down.

Also fecal calprotectin isn't completely infallible. My son had a normal result a few months ago when there was inflammation present. I suppose his was a false negative.

My son is asymptomatic as well but has inflammation from ileum throughout small bowel and to rectum. So lack of symtoms can be deceiving.

Can he have his CRP checked? It can be a good tool along with fecal calprotectin to set baseline numbers.
 
hi spooky 1 and clash , hope u r fine , merry christmas for you hope you enjoyed your holidays.
am living in dubai and abu dhabi in UAE , my son if free from symptoms since more than one year now , while he is in sheffield he is eating all kind of food, and once he is here in vacation i did the test and it was > 1000 but he is not feeling anything, i did the test exactly after 9 days it was negative in 2 labs
in these 9 days he was eating once salmon and modulen 3 times a day and a snak of small gluten free bread veg,butter and honey and thats all

so i dont know false negative or false positive or which one is correct
 
During the time that he got the result of 1000 was he taking proton pump inhibitors? They can give a false positive.
You can wait and do the test again at a later date. There can sometimes be a problem in collection that can cause false negatives it's been awhile since I read about it so I don't know the specefics. I'll see if I can find the article/study again.

But it might be best just to move forward with what you are doing and test again a bit down the road.

I hope things continue to go well.
 
yes dear he is taking proton pump inhibitor since one year now on daily basis
please send me this article if you find it , i think will repeat the test in 2 months when he come back as he is travelling back on sunday. as i was thinking to repeat it on saturday but dont know if that correct
 
I really don't know much about protonpump inhibitors to be honest. I know when I was a younger teenager that I would be virtually symptom free but with very high inflammation markers (white cells etc).

These days I still have high inflammation markers and have every symptom under the sun. My intestines feel fine on the bland diet, although liquid feed goes through as liquid, but then I've had a lot of intestine removed.

What do his docs say? I bet they don't want to bother with him if he's symptom free, although that doesn't mean totally in remission. A difficult situation, and a frustrating on.

Happy new year and I hope your son is enjoying his experience at Sheffield. Is it Hallam uni?
 
i hope both of u to be always fine, his doctor told me leave it just tell him to think and am sure he will fix his diet alone and told me may be liquid diet help to reduce it , but am feeling doubt ,
how we can know that he is in remission?

my son happy in sheffield its really nice m he is in sheffield university not hallam
 
Here's an excerpt about the proton pump inhibitors:

Proton pump inhibitors (PPIs) have been associated with significantly elevated faecal calprotectin levels, regardless of reason for PPI
Source

I can't find the article about the collection process.

Even a slightly raised fecal calprotectin result in the 200s can mean that there is simmering inflammation that can cause damage over time.

Hopefully, you can get clear answers with the next fecal calprotectin test. If it was elevated again I would request further testing because he may need med adjustments or changes.

EEN is often used at varying levels from 100% to 80 formula 20 food. But alot of times it only helps while the patient is doing a majority of intake of formula and when food is fully reintroduced the inflammation returns. So if he's on a maintenance med and it's not keeping the inflammation at bay when full intro to food is presented then it may need adjusting or another med tried.

Good luck.
 
I was given liquid feed to help my intestine heal, but also to keep me off steroids which give me terrible side effects, including paranoia. I am also told that my villi will heal which means the intestine will get a bit better, especially with only fish and potato. I am better this way as I still know that I cannot tolerate fructose, so no fruit, lactose, so no dairy, no gluten, and even grains, no rice, and no fats, seem to line my intestine with grease and I just can't absorb it. The liquid feed does help as it's all pre-digested, and the potato and fish I like to think my intestine can cope with something.

I thought your docs might be thinking your son is ok, cos he is probably not complaining of any symptom, no pain or anything. Why should a doc bother if a patient is not complaining.

I moved recently and have a new specialist who happily tells me that if I have yet another stricture removed, I will probably absorb everything and could eat absolutely everything! Strange doc. I don't trust him for anything under the sun. I'm still malabsorbing all foods apart from bland fish and potato.

Actually, Lubnaexperts, I think you are doing a brilliant job of caring a bit more than any doc will do. Back when I was young, no doc really looked for Crohn's, nor did family understand nor worry about what a young one was going through. Such dreadful times. Took me a lot of years to find health enough to re-do school, uni, etc, I had to fight for any kind of success and it wasn't down to docs.

I bet your son will do well with a good attitude and with a caring parent. That is all it takes sometimes. Perhaps don't worry until your son asks for help with his health. You will, of course, be the first person on this planet to know, well, after him of course.

Wishing him and you health and luck and happiness, always.

Best wishes,
Diane
 
thank you too much spooky1 for your warm words which was a good support for me , and really am proud of you and am sure these tough days you faced created from you an unique person and successful one and wish u always keep up , for my son i hope he will depreciate that one day .
clash i found this study , and it said in brief that calprotectin varies significantly during the same day , and as a conclusion first bowl in the morning will give the highest result and we can depend on it and i did that today with my son and i found the result just now 49.2 still negative yesterday was 38.5 and i took him yesterday to nandos to eat out . i hope he will maintain good numbers during the next 2 months while he is alone in sheffield.

wish you both all the best and hope to meet you one day in dubai or in uk
god bless you
 
hi all, wish you a happy new year and merry christmas
long back I didnt post, my son was fine , he came this holiday to dubai and we test his calprotectin was 957 and positive occult blood test , after one week of eating only fish and chicken and 3 times modulen we test again we found out that blood occult still positive but calprotectin is 52 , very fast drop , any idea how come like that , and also in all the past time my son has no symptoms and blood work esr and crp always normal
 
hi all , wish you all happy new year and merry christmas , I hope all of u are healthy and enjoying your life
I want to ask my son came to dubai for holiday and i test his calprotectin and occult blood
it give positive and 957 calprotectin and after one week after three shakes of modulen daily and eating only fish and chicken , occult blood still positive and calprotectin is 52 only !!!! is that possible massive drop in one week ?? and his blood esr and crp are normal always , any idea or advice
 
Hi everyone,

Been reading all the posts, very interesting outcomes. I think doctors may underinfluence diet effects on inflammation and modulen efficacy.

I used modulen when i was 16 to avoid steroid and it was effective.

Now 15 years later, after a very strong flare with inflammation and strictures in my ileum i'm trying to follow a 1/2 modulen meal by day to give my intestines some rest.
i also started entyvio one month ago, and as it could take months to work, i think it could help to have a modulen diet.
I could do the effort to go on a total modulen nutrition but its not easy...

I think i'll follow my fecal calprotectin too every month and see what happens.

Is there any other adult here using modulen and that found benefits and would share good advices?
 
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.......
 
hi
my son used modulen when he first diagnosed to avoid steroid for his growth, his doctor suggest modulen with the imuran and he did complete 8 weeks and it was really amazing and complete healing was seen through colonoscopy and at anytime my son has high calprotectin he is doing this diet for 4 weeks and again result come to normal , i advised you to do it if your son can be. i used many flavors to make it acceptable and in first 2 weeks it will be difficult for him then he will be fine

if you need any further help let me know
 

Jmrogers4

Moderator
Welcome DrSandersMike,
EEN is usually done in place of prednisone while a maintenance med gets a chance to go to work. Symptoms come back once EEN is completed. EEN is pretty difficult for a teen. My son did it at 14. It was hard for him to be around friends eating when he couldn't. It can be done but is not really a long term treatment and my son would do again in place of prednisone if given a choice.
A lot of us have come to the same conclusion as your doctor regarding diet yes it can help but doesn't seem to bring about remission. SCD is a popular one and my son does know a kid from Camp Oasis that has been on it for several years alone (after resection surgery).
Nobody wants to give their kiddo all these med but after years of trial and error and years of no growth and development my son went on remicade and it has been his magic medicine it allowed him to have a "normal" life. He has been on it for nearly 5 years now and in remission the entire time.
Tagging some other parents - check out the parents of kids with IBD section
mylittlepenguin
crohnsinct
maya
tesscorm
 

Tesscorm

Moderator
Staff member
My son was diagnosed at 16. He was given a choice of steroids or 6 weeks of EEN. But, it was made very clear to us that his dr preferred EEN over steroids as a first treatment. As Jacqui said above, it was difficult for him to go 6 weeks of no food. He ingested his formula overnight thru an NG tube. As he was allowed clear fluids (clear pop, gatorade, broth, freezies, jello, etc.), he would take broth to school so he could have 'lunch' with friends and I arranged for the school to keep freezies on hand for him. At dinner, I didn't make him sit with us but he would have a bowl of broth as a 'dinner'. It was hard and, as he was ingesting all his meals overnight, he would be hungry in the late day/evening. But, as it was very much his choice to do the EEN, that helped.

He also had one week of Flagyl thru IV while he was in the hospital.

Whether it was the flagyl or the EEN, he felt hugely better within a week. Within two or three weeks, he was back to regular school schedule, playing on two hockey teams, etc. (although it took longer for him to regain the lost weight and his strength/endurance).

Once the six week period ended, his maintenance treatment was to continue with the formula at half dose (1500 cal/day, still overnight) and gradually add in regular food. We continued this for two years. His only med was nexium. He felt and looked great and, over the two years, gained approx. 40-50 lbs (but, 'good' weight - muscular, deveopment, height, etc.). However, MRIs continued to show some simmering inflammation.

Upon transfer to an adult GI, the new GI was adamant that the simmering inflammation would eventually cause complications, perhaps even surgery. He strongly recommended remicade. As my son was 18, the choice was his to make. I made sure he was aware of the risks both with and without the meds and let him choose. While I hated the idea of giving him these meds, I also understood the risks of going without. And, as he would be the one suffering the consequences of undertreating the crohns, I couldn't ask him to not take the meds.

These are difficult decisions. Do ask questions and learn as much as you can. The more familiar you are with the choices you have, traditional and alternative, the better you will feel about your decision. As hard as it is, try not to let emotion get the better of you... when it's your child, it's easy to see the risks in bold, flashing letters and then kind of skim over how small the risks really are. I've said it here before, we allow our kids to take all kinds of risks in order to improve their QOL - swimming, driving as teens, playing 'rough' sports like hockey, football, etc. - and we do this because it improves their QOL (and, no one is handing us a sheet listing the risks as they walk out the door and asking us to sign off!). While it's not exactly the same, getting the right treatment will also improve their QOL.

:ghug:
 
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