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04-02-2013, 10:48 PM   #61
Clash
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Tesscorm, I know people with CD IRL too and they are the same as your friend. I think part of it is my persona and I've absolutely analyzed imaging online. I also read study after study where I understand about every third sentence, for hours on end...I read then look up every scientific word then read again. It is really counterproductive because I end up researching the research then researching the process behind the research of the research...etc etc etc...I walk away numb and looking for a glass of wine!
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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
04-03-2013, 07:46 AM   #62
Tesscorm
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YES!!! Too funny!! But, I look at it that each bit of research becomes one more piece in a huge puzzle; even if it doesn't fit with anything else at that moment, it sometimes does later one... right now I think I have about a million pieces floating around, not fitting any other piece!

And, am totally with you re understanding only every third sentence... I thought it was only me! I was so excited when I found a document that explained some of the terminology!

Maybe we should have an online study group - don't forget the wine and beaver tails!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-03-2013, 07:53 AM   #63
crohnsinct
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Ha! I sit somewhere in the middle. Read research (and forum) for a bit then take a break because in the end I know I will default to docs recommendations, can not interpret the research fully, etc. Plus my obsession early on lead to a lot of things not getting done around here. I like knowing just enough to be able to ask good questions and bring up alternate treatments (case in point when O's doc was going to stick her on MTX with no mention of EN) and have a conversation rather than be dictated to. I like to have her doc explain himself and why he is proceeding a certain way etc. Does that make sense?

I will however always join you for that glass of wine!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-03-2013, 08:15 AM   #64
Johnnysmom
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Late to this thread but I have been told that if blood work and fecal calprotectin look good and there are no concerning symptoms then our GI only scopes every 10 years!!!!
My son's GI says the same!!!! We are at Cincinnati Children's so I trust this is good advice??? I will say that if weight gain is lagging or growth I would consider that a symptom.
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04-03-2013, 08:34 AM   #65
Tesscorm
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I wonder if the hesitation to perform scopes more often is due to concerns over risks?? Anesthesia?? I know there is a risk of perforation but have no idea how big or small a risk, also saw on another thread some conversation that the clean-out can contribute to a flare?? Again, not sure how often that happens???
04-03-2013, 08:51 AM   #66
crohnsinct
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I will say that if weight gain is lagging or growth I would consider that a symptom.
I hear ya (haha again). I really do think she just isn't eating enough but I wonder, do those normal kids always gain and grow? I mean, really? Don't all kids plateau and then grow and plateau and grow? How long a plateau is considered too long? I know I am asking the wrong gang...just wondering out loud.

Interesting theory about the perforation and anesthsia risk...of course when they first present it they are all "Oh risk is miniscule...nevered happened to one of my patients" etc. Another contradiction perhaps?
04-03-2013, 08:56 AM   #67
Johnnysmom
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I read the risk of perforation is about 1% for children and is 2 to 3 times higher than in adults. But, the disease changes and spreads more in children so I would think those odds cancel each other out.

I think you would have to ask yourself or GI- would you change current medication based on colonoscopy when there are no symptoms or indicators of disease-with growth, weight gain, pain, loose stools?? Maybe they have already determined that answer is a no-so not worth checking????

My brain hurts from trying to guess why the heck they do things.
04-03-2013, 09:06 AM   #68
crohnsinct
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My brain hurts from trying to guess why the heck they do things.
Haha...yep...our favorite game OUT GUESS THE GI.

I'll take colonoscopies for $200 Alex.
04-03-2013, 09:17 AM   #69
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Haha CIC...you hit the nail on the head!

Right before we go into see the doctor, C says, "Okay, Mom DO NOT start asking all those questions that prolong our visit, he went to school for years to know what he knows and you're just adept at Google!

I'll take imaging and analysis for $600 Alex!
04-03-2013, 09:22 AM   #70
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I'm not sure how normal kids grow either, my oldest is at the other end of the spectrum was 6 ft 3" by the time he turned 14, (Height 97 percentile Weight 85 percentile)

I think the comparison to how I remember Owen eating and growing at the same age is a big part of why I worry so much about Liam, if Owen's growth patterns we're more normal perhaps I wouldn't be so paranoid.

I only weigh/measure Owen every couple of months but his weight and height have always grown steadily and he's never dropped off his lines. I feed them all the same things, lol.

Last edited by Maree.; 04-03-2013 at 09:29 AM. Reason: spelling
04-03-2013, 09:28 AM   #71
crohnsinct
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LMAO! That C cracks me up...Jordi too...Yale!

Seriously! Hubby is working from home and came in and saw me on computer and asked, "shouldn't you be wearing your white coat while you are at work"

Marnee: Oh my gosh! I have the sane situation here but it is O's younger sister who is freakishly tall and mature for her age. But maybe it is O's lag that makes me feel like little sis is a freak. At 9 she weighs morethan O and is as tall. Also hit puberty a lot sooner than O. O is 13.
04-03-2013, 09:29 AM   #72
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I see the risks in the tests. And the stress that they will cause my son, so I'm not going to be all that test-happy.

If he's feeling well, growing and gaining and his first tests come back clean, I will take that as an indication that his body will tell us if he's having a flare.
And that SCD working for him. (Hope!)

If he's gone 3 years without a flare and then a colonoscopy prep sets one off, that would be worse than terrible!
04-03-2013, 10:24 AM   #73
Tesscorm
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Clash - Stephen says almost the same thing re asking too many questions and that the GI has gone to school and I just have my forum! BUT, I really believe him seeing me ask the questions has made an impact and is making him more proactive in asking his own questions and he recently said if the GI says to wait a year to check on remicade's efficacy, he doesn't want to wait the year to have an MRE to check if things are improving!

CIC - yes, kids do plateau and grow in spurts. I'm sure it was MLP or Patricia who has mentioned that before... even mentioning the time of year that growth typically occurs (maybe in the spring/summer??)
04-03-2013, 12:17 PM   #74
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Anybody else have a control issue? I think that is my problem that the more information I can find out/know I will have some kind of control over the disease. (I know it is not true but...)
Which is funny because in general I'm a pretty much don't worry about it until you have to kind of person, no use borrowing problems. But in this I'm complete opposite. If xyz happens, what do I need to do and if abc happens how will we handle it? kwim.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-03-2013, 05:25 PM   #75
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Control??? why do think I post so many articles .
I like to know everything.
But am only an expert in what DS currently presents with so the minute there is something new some of the docs assume I already know ( insert deer in the headlights ) just because I read about the other stuff kwim.
Plus they all have different ideas on what is right .
I did this before research like crazy for about 1-2 years then slowly move on.
Hoping to get to that point.
Soon
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04-03-2013, 05:54 PM   #76
crohnsinct
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even mentioning the time of year that growth typically occurs (maybe in the spring/summer??)
What's spring? We are still wearing winter coats here. At this rate she will never grow!
04-03-2013, 06:07 PM   #77
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Nope-no control issues here
04-03-2013, 07:17 PM   #78
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Maree, I have it the other way with growth.

Crohn's child 5ft 8

Middle child 5ft 3 tested for growth delay, decision no grow delay, just short will get another inch if she lucky.

Young child 5ft 2 growing but slowly.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-03-2013, 07:30 PM   #79
Clash
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CIC...for you
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04-03-2013, 07:35 PM   #80
David
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Let's see if Aussie is available to give some additional insight. Aussie:

1. Should a Crohn's patient be content with anything besides deep, stable remission? If so, what level of remission should they be content with? If not, why are so many doctors only doing blood tests and going by symptoms?

2. If an adult with Crohn's has normal blood and fecal calprotectin results and no serious symptoms, how often should they be scoped? How about a child?

3. Is an elevated fecal calprotectin ever acceptable for someone with Crohn's disease or should one always strive for it to be normal?

Thank you!
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04-04-2013, 04:35 AM   #81
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Hi David, difficult to give absolutes given there are so many variables.

1. Deep remission should be the goal. However, it's not always that simple. Most patients would want to feel better (clinical remission). Some people have their IBD treated (no active inflammation), however, they still have significant symptoms - likely IBS overlay. So if you go by symptoms alone, you might over treat if you're hitting IBS overlay with strong immune suppressants, and then we know that blood tests are poor markers for endoscopic inflammation, so you might be falsely reassured by normal blood tests and under treat. Makes it tricky.

Why do so many doctors go only on symptoms and blood tests, well it's easy, cheap, non-invasive. Would hopefully pick up most flares, although not all, that's why it is important to look at other markers as well, like a faecal calprotectin.

2. If no symptoms and normal calprotectin - depends on location. If no colonic disease, don't rescope. If colonic, then after around 10 yrs, start surveillance for colon cancer, duration between scopes depends upon the surveillance protocol being followed (UK have a sensible protocol).

Probably no different with children, with the exception of normal growth chart progress to be added to the normal calprotectin and lack of symptoms before you relax completely.

3. An elevated calprotectin needs to be taken in context. Normal is less than 50, however, the normal range (as with other medical tests) doesn't capture all the normals (ie. a small percentage will be normal however their test result will be outside the "normal" range.)

If someone was symptomatic with a calprotectin around 700 or so, gets put into Imuran, becomes asymptomatic after a few months and their repeat calprotectin is around 150, would you increase medical therapy? Probably not, although it is outside the normal range. However, if it was still 500 to 600, then you might be tempted to look again (MRE, colonoscopy) to ensure you were achieving mucosal healing.

Unfortunately IBD has few black and whites, and most answers to questions starts with "we'll that depends upon ..."

Last edited by Aussie; 04-04-2013 at 08:47 AM.
04-04-2013, 07:21 AM   #82
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My son has no symptoms, moderate weight gain and good growth, all blood tests are good. Fecal Cal was 586 in August and 430 in December. His GI is doing another one this month. How much weight should I put on the fecal cal alone?

GI says he likes to see the fecal cal no higher than 300 for crohn's, but he isn't changing anything based on my son's numbers. I am not sure how to feel about this.
04-04-2013, 07:34 AM   #83
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Thanks Aussie!

Damn, it looks like I was wrong about colonoscopy duration with no symptoms/normal fecal calprotectin. I'm so sorry for creating confusion with that My apologies.

Aussie, if you have time, a couple followup questions:

1. If no symptoms, normal fecal calprotectin, no colonic disease, then you say no rescope. Do you do occasional imaging studies instead? If so, which and what duration?

2. If no symptoms, normal fecal calprotectin, how often do you recheck fecal calprotectin and what level of increase would cause you concern?

As always, thank you
04-04-2013, 07:36 AM   #84
David
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My son has no symptoms, moderate weight gain and good growth, all blood tests are good. Fecal Cal was 586 in August and 430 in December. His GI is doing another one this month. How much weight should I put on the fecal cal alone?

GI says he likes to see the fecal cal no higher than 300 for crohn's, but he isn't changing anything based on my son's numbers. I am not sure how to feel about this.
Your predicament may fall under this paragraph by Aussie:

Aussie said:
If someone was symptomatic with a calprotectin around 700 or so, gets put into Imuran, becomes asymptomatic after a few months and their repeat calprotectin is around 150, would you increase medical therapy? Probably not, although it is outside the normal range. However, if it was still 50 to 600, then you might be tempted to look again (MRE, colonoscopy) to ensure you were achieving mucosal healing.
04-04-2013, 10:49 AM   #85
Aussie
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Hi David, in regards to colonoscopy in IBD, you can look at surveillance with colonic disease to pick up cancer earlier OR to assess severity of mucosal inflammation / look for complications (ie. strictures) / assess response to treatment.

It seems that you're drilling down on the latter.

Still loads of variables. Things to keep in mind:

Bowel prep can precipitate "mini" flares in some people. The prep can also cause mild mucosal inflammation, which could be over called and then lead to over treatment.

Colonoscopy has a perforation risk of 1 in 1000, nasty complication. Very hard to justify scoping a really well patient who then perforates, leading to a bowel resection, and potentially multiple enterocutaneous fistula (getting close to worst case scenario - most colonoscopies are very safe and uneventful).

If someone has no symptoms at all - ie. feels great, a normal calprotectin and their bloods are fine (not just CRP, but albumin, ferritin, Hb, B12, etc) and they're not losing weight, then it would be very unlikely they would have significant inflammation. In regards to complications (ie. stricture), if it was asymptomatic, you wouldn't treat it (ie. dilate or surgery). So you have to ask yourself, why would you scope this patient? What are you likely to find, perhaps minimal inflammation, that may have been prep induced.

What if someone had been in that situation for 5 or 10 years, would you rescope them just to be sure? Difficult. If the patient (or parents in the younger ones) were a little anxious and wanted reassurance, then you would have a lower threshold. Remember that with each flare, you might be reinvestigating, unlikely someone is going to go that long without any symptoms or signs of a flare. You also need to keep in mind how severe their Crohn's has been previously, if severe, requiring strong meds, then you would have a much lower threshold to rescope an asymptomatic patient.

It is important when you say no symptoms to really explore that though, not just Question "how do you feel? Answer "okay".

In regards to repeat imaging (MRE) in asymptomatic people, again, not really a high yield. Definitely if there was any hint of active disease or complication, but a really well person with a normal calprotectin. If you had to do something just to make absolutely sure they didn't have grumbling inflammation, then a colonoscopy would be better in an asymptomatic person, much better idea of mucosal inflammation/healing.

In regards to faecal calprotectin. Really depends on the trend and the levels with previous flares and response to treatment. So, patient has severe flare with calprotectin around 700 or so, treated, feeling well, calprotectin bouncing around 50 to 150 to 50, do nothing. However, if you we're checking frequently and the trend was a slow rise (ie. 50, 95, 160, etc) then reinvestigate to ensure adequate treatment. Frequency of checking really depends upon how sick you have been, if really mild, easily treated Crohn's, then every year or 2 might be reasonable if they remain well. If really sick with slow response to treatment, then much more frequently (perhaps 3 to 6 monthly) would be more reasonable.

Clear as mud...
04-04-2013, 10:55 AM   #86
crohnsinct
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Wow Aussie! Thanks so much that really helped me! haha and my daughter's doc!
04-04-2013, 11:01 AM   #87
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Yes, thanks so much Aussie!!! You've answered lots of questions for me!
04-04-2013, 11:07 AM   #88
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Thank you so much Aussie!

The more I learn about Crohn's and treating it, the more I respect those doctors that are really good at it. There's so much to know and so many variables. Truly a difficult disease to treat; thank god for those who are good at it.
04-04-2013, 11:12 AM   #89
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Yes, I agree that was so helpful Aussie, thank you so much!
04-06-2013, 09:58 PM   #90
Tesscorm
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Do any of your GIs test for INR? A couple of days ago, my friend (daughter with crohns), asked how we would monitor Stephen's remicade 'improvement' given his lack of apparent symptoms... she mentioned that her daughter has her INR checked regularly and that, in her case, it indicates continued inflammation.

WHAT??? How is it that there is a test for inflammation that I haven't heard of?!?!? Needless to say, I'm sure you can all imagine what I've done since...

So, (and bear with me as this is still new to me... so, my explanation may be a bit sketchy) what I've learned is that inflammation activates a blood clotting response, blood clotting agents in your body are then 'used up' clotting, at this point, when blood clotting is necessary, it takes longer to clot because the clotting agents have already been used up. My understanding is that INR tests the length of time for your blood to clot. (Hope that made sense, and remember, may not be 100% accurate.) My friend says this is tested each time her daughter has remicade and it is an indication the doctors are using to determine active inflammation. (INR is also an indicator of liver function but I'm not sure how...).

I posted a much better explanation on a blood clotting thread I'd seen earlier...
http://www.crohnsforum.com/showthread.php?t=47740 (post #22)

So, I'm just curious... Have your kids had their INR levels (or sometimes referred to as PT) tested? Have you ever heard that this is a reliable test/indicator of inflammation?

Last edited by Tesscorm; 04-06-2013 at 10:47 PM.
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