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02-14-2015, 09:35 PM   #91
lubnaexperts
 
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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 ?
02-14-2015, 09:39 PM   #92
Clash
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That seems appropriate, giving the med a little longer then maybe running tests again.
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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
02-16-2015, 08:41 AM   #93
Spooky1
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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.
02-16-2015, 09:34 AM   #94
lubnaexperts
 
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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?
02-16-2015, 11:25 AM   #95
Spooky1
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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.
02-16-2015, 12:40 PM   #96
lubnaexperts
 
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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
02-16-2015, 01:09 PM   #97
Spooky1
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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.
03-09-2015, 06:22 AM   #98
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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
03-09-2015, 07:54 AM   #99
Clash
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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.
03-09-2015, 08:02 AM   #100
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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
03-09-2015, 08:07 AM   #101
Clash
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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.
03-10-2015, 07:40 AM   #102
Spooky1
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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.
03-10-2015, 08:11 AM   #103
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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
03-10-2015, 08:36 AM   #104
Spooky1
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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.
03-19-2015, 01:22 PM   #105
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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
03-20-2015, 07:38 AM   #106
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it's hopefully going to go right down soon. Well. we're all hoping anyway.
03-22-2015, 12:17 PM   #107
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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
03-23-2015, 09:08 AM   #108
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Well that's good news
03-31-2015, 10:07 AM   #109
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Today i did calprotectin test and its raised from. 77 to 100 and its very strange as he is on week 6 any idea why like that please am so sad
03-31-2015, 10:50 AM   #110
Clash
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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.
03-31-2015, 10:54 AM   #111
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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
03-31-2015, 01:25 PM   #112
Clash
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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.
03-31-2015, 10:11 PM   #113
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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 ??
03-31-2015, 10:19 PM   #114
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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.
04-02-2015, 03:02 AM   #115
Spooky1
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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.
04-02-2015, 06:19 AM   #116
Pilgrim
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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.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
04-02-2015, 07:38 AM   #117
Clash
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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.
04-02-2015, 10:01 AM   #118
Spooky1
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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?
04-04-2015, 08:14 AM   #119
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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
04-13-2015, 12:44 PM   #120
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today calprotectin 117 its start to raise even today week 8 in exclusive modulen . my son upset
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