08-29-2015, 10:31 AM   #151
Spooky1
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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.
08-29-2015, 10:34 AM   #152
lubnaexperts
 
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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
08-30-2015, 08:39 AM   #153
Spooky1
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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.
09-05-2015, 10:52 PM   #154
lubnaexperts
 
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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
09-06-2015, 04:18 AM   #155
Spooky1
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Oh, whoopee! Hoping all goes well for the repeat test. Also, hope his uni course goes well too.
09-06-2015, 06:47 AM   #156
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its 228 today am really dont know now is calprotectin flocculating that fast ?? anyone have an idea
09-06-2015, 08:56 AM   #157
Spooky1
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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.
09-06-2015, 09:15 AM   #158
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Thank U really for this warm words and for sharing your info with me
09-06-2015, 10:19 AM   #159
Clash
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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.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-14-2016, 08:00 AM   #160
lubnaexperts
 
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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
01-14-2016, 09:31 AM   #161
Spooky1
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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?
01-14-2016, 09:47 AM   #162
Clash
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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.
01-14-2016, 09:56 AM   #163
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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
01-14-2016, 09:59 AM   #164
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last crp done 2 months before when calprotectin was 218 CRP and ESR both was so normal
01-14-2016, 10:24 AM   #165
Clash
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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.
01-14-2016, 10:28 AM   #166
lubnaexperts
 
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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
01-14-2016, 11:24 AM   #167
Spooky1
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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?
01-14-2016, 11:33 AM   #168
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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
01-14-2016, 12:04 PM   #169
Clash
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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.
01-14-2016, 01:25 PM   #170
Spooky1
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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
01-15-2016, 07:50 AM   #171
lubnaexperts
 
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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
12-28-2016, 07:52 AM   #172
lubnaexperts
 
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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
12-28-2016, 07:57 AM   #173
lubnaexperts
 
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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
07-13-2017, 04:33 AM   #174
Guerrero
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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?
06-19-2018, 06:35 AM   #175
DrSandersMike
 
Join Date: Jun 2018
Location: Miami, Florida
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.......
06-19-2018, 06:42 AM   #176
lubnaexperts
 
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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
06-19-2018, 09:56 AM   #177
Jmrogers4
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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
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-19-2018, 12:23 PM   #178
Tesscorm
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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.

__________________
Tess, mom to S
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
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