Children and Inflammation markers

I know that there are a good few kids on here that have normal bloods and still have active CD.

I was thinking about that and wondering for those whose inflammation does show up in labwork-CRP and ESR/SED how long have you stayed with a treatment when blood work continued showing inflammation and how much inflammation was too much and you chose to move on to another treatment.


Ex. If CRP is 42(range 1-3) and with the med you get it down to 26 in 4 or 5 months do you continue with the treatment if symptoms are negligible?

What if your child's active disease doesn't show in CRP or ESR/SED, but further tests show some inflammation and symptoms are negligible what prompts you to change meds?

I know I'm all over the place but my mind is just swirling for the next six weeks.

I only know that they said my son was now in the "normal" range. I think they said 12.
And when I asked when he'd need to be scoped or scanned next, to make sure Crohn's wasn't secretly attacking him, they said they don't generally do that if the child is feeling well, maintaining weight, etc. and that he shouldn't need to be scoped again for 7 years.
Seriously?

In my opinion, you don't stop trying to find the perfect combination of treatment until you reach deep, stable remission. Not clinical remission, not biochemical remission, but deep, stable remission. Anything less and bowel damage can be occurring which is unacceptable.

Amy2 said:

Crohn's wasn't secretly attacking him, they said they don't generally do that if the child is feeling well, maintaining weight, etc. and that he shouldn't need to be scoped again for 7 years.
Seriously?

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A 7 year scope time frame based upon clinical presentation makes me wonder about their experience with Crohn's disease.

WE have been told and I have read numerous times - you do not treat SED/CRP but you do treat symptoms especially when combined with other tests ( including sed/CRP which are high).
So everything normal symptoms and other tests (except sed/crp) then no change.

For DS we have change meds more than once without dramatically increased blood work.

I think with everything IBD it is very individual and doc dependent since what is important for one may be a blip for someone else.

never easy

I agree, C is hitting all the marks at the moment, gaining weight, no symptoms, normal bms, full of energy, no pain, no joint issues but we just had the scope and MRE and there is still inflammation, a lot less than at dx and some detectable only by biopsy but inflammation none the less.

He has come a long way and it is evident in the kid I see before me but I can't help but think it is time to change things up if we haven't reached full deep, remission...but then again how long should you give a treatment(diets/meds etc) to get to that point?

How long has C been on Remicade and what dose/interval?

What is their diet?

Any supplementation?

I recently found out that my oldest daughter has not been scoped once during her 7 year "remission". She told me that doing so can bring on a flare. It's her business, she is 31, but is it true that getting cleaned out can cause one to flare?

Remicade, highest dose, every 6 weeks + on his 6 month of adding MTX(pill form) 25mg once a week, folic acid, Vitamin D, Mag.

We have been trying to follow a diet with lean meats(grass fed/free range local) farmers market produce(organic) and very little processed. No sodas, not a lot of fruit but smoothies with veg and fruit since juicing was a no go.

He makes it until about 3 days before infusion, then we will have a day of multiple bms with mucus, sometimes his episcleritis will come up that day as well. Next day all is fine then infusion day.

Edit to add: Also David, C's labs come back good so until MRE/Scope wasn't sure where we stood exactly. FC was a good indicator a couple months ago with the level at 1700(we added MTX then) now FC level is at 300(at time of scope/MRE)

Amy2 said:

I recently found out that my oldest daughter has not been scoped once during her 7 year "remission". She told me that doing so can bring on a flare. It's her business, she is 31, but is it true that getting cleaned out can cause one to flare?

Click to expand...

There are a variety of reasons someone with Crohn's disease should be scoped more than once every 7 years in my opinion. Everything from the detection of subclinical inflammation to screening for colorectal cancer and other intestinal neoplasms which people with Crohn's are at increased risk for.

Has he had a second opinion ?
I would and have for less.
Our Gi changed treatment since DS had inflammation on biopsies.
During his last scope but all else test wise including mre was normal.

Lack of weight gain growth is a significant sign IMO.
Hugs

But he is gaining weight, 10 lbs in a month and 3/4 inch. We haven't looked to get a second opinion because his progression through meds have gone similar to others on here. GI is ready for a med change and has offered up several options that he wants us to mull over before next visit.

C was dx in Feb of last year
Was put on Remicade in May 12(on pred while transferring to Ped GI that put him on Remi)
Started having issues in August so shortened Remi
Sept upped dose
Oct added MTX
All went well til end of Jan then viral and/or sinusitis caused that flare.

GI doesn't want to go down to 5 weeks with Remi, would rather go next biologic or remove scar tissue at ICV but small amount of inflammation there too, says C is good candidate since he full colon isn't involved.

That's a pretty darn good/strong treatment regimen Clash. Possible areas of minor tweaks:

What processed foods does he eat?

Any foods (including the organic ones) with carrageenan as an ingredient?

Is anything in his life giving him doses of aluminum? Antipersperant? Toothpaste? Aluminum bakeware? Cooking with aluminum foil? Heartburn medications like tums? Soy milk? Eats things with lots of baking powder? ANYTHING?

How much magnesium does he take and what form?

What is his vitamin D level?

What is his B12 level?

Are you on a water softener and/or reverse osmosis water system?

David, his Vitamin D level is still low, it has only come up to 29 now and we just upped the dose to 5000 IU(Biotech D3 Plus) a day, of course it has 225 mg of Magnesium citrate as well as some other cofactors. He was taking also a Mag oxide supplement but he had D with that so we back off to every other day.

The other levels were just tested (folic, zinc, B12) and although I don't have the numbers in front of me I checked them with the levels suggested in the thread here and he wasn't low.

Not sure about carrageenan as an ingredient in all products but anything we buy I check for and I've changed to a homemade paste to avoid carageenen(thanks to one of the threads on here)

I'll have to check out other pots/pans but we do all stirfry in the cast iron for the iron benefit and we don't use any coated ones, the others could be aluminum I just assumed they were stainless steel?

Process foods vary, he goes every 6 weeks for Remi and we let him eat out as an after infusion treat. At home, he goes through phases so he will do really well with very little process foods then he wants tortilla chips and queso cheese for every snack and meal.

I know his diet could improve but it is balancing act impressing upon him how it may affect his illness and not pushing him in the complete opposite direction when he gets out on his own(only 1-2 years away depending on how fast he completes his HS studies)

I bet you see additional improvement as his vitamin D and magnesium levels improve.

Magnesium oxide is the worst form of magnesium to take. It's very poorly absorbed What dose do you give him of that?

The problem with queso cheese is processed cheese contains very high levels of aluminum. Aluminum is shown to be present in peyer patches and is thought to play a part in Crohn's disease in susceptible individuals. I believe that magnesium deficiency plays a critical role in pathogenesis of Crohn's disease and increased levels of magnesium are shown to reduce aluminum absorption. Increase magnesium, decrease aluminum, and I think the body starts working much better.

I can understand the balancing act. That must be really tough Do you think he'd be willing to try some good quality cheeses melted over his chips rather than the processed stuff? I bet cutting out that queso makes a difference.

The Magnesium Oxide is 250mg and he was taking it every day now every other day. Besides the Biotech D3 plus I've had a hard time finding Magnesium citrate but admittedly haven't looked in the local health food store, only grocery.

The queso I'm talking about is the block of white cheese you get and melt, queso blanco? But he would be open to trying others, I'm sure.

I'll go online and see if I can find just magnesium citrate and switch it out for the oxide type.

Also if there is a vitamin that gets him to clean his nasty room I'd be open too that to! HA!

Edit to add: I've been more worried about all the tortilla chips than I have the cheese!! Haha!

Ah, I thought it was the jar of queso. I don't know about that form of queso, sorry. Processed cheese and parmesan are the worst offenders.

Since he's getting citrate from the D3 biotech I'd add another form if his doctor is ok with it. I've been using this with great success.

What kind of water do you all drink? Does it run through a filter or water softener?

GOOD discussion. I learn so much from you all.

Amy2 - I just wanted to say that's CRAZY. I would challenge that in a heartbeat with our doc. He says every 3 years when things are going well with imaging in between.

I'm unhappy with him right now for some other issues but he is on target with that one.

J.

We have county water now but we don't use it to drink only cook, we buy bottled water to drink, Deerpark by the case and I did forget although C doesn't drink soda in the sense of coke, sprite, mt dew, blah blah blah, now he does drink ginger ale from time to time.

Some of these are new modifications like soda but others are kind of how he has always been. He loves his meats and vegetables and perfers having full meals as opposed to quick and easy.

Edit to add: I'll read through your link.

And thanks for all the info.

How long have you all been drinking the bottled water? And is the water distilled, reverse osmosis, spring water, mineral water, or?

We have been drinking for about 3 years now as the only drinking water source but off and on since C was little and played travel baseball.

It is listed as spring water on the company website and from the website it states they employ a multiple barrier system to assure quality that involves carefully controlled filtration and disinfection processes in hygienically designed lines. They aren't extremely forthcoming more an overview than their detailed process, kwim.

Ah on in the article it says they employ micro filtration and ultraviolet light/ozone disinfection?

http://www.nestle-watersna.com/asset-library/Documents/DP_ENG.pdf

just saying there are multiple classes of water - bottled water or city water has too many "extra " stuff to be used in highly sensitive industries- only de-ionized water.
that being said- not sure how much the extras are playing an affect. filtering wont take out much.

Ds still drinks bottled spring water which is slightly better than "City/country " water
but not by much.

I always thought the goal was to not take too much out of the water since water carried minerals that our body needed. So filtering out all those was actually providing us with less. But I'm a little confused on those. We have county water and I don't mind drinking it but ever since travel ball/bottled water C opts for bottled.

Since he doesn't drink mixed drinks like kool-aid, lemonade, tea then mostly his water source is that bottled water, I don't know if it's good or bad...just what it is.

Thanks David and MLP for all the information. HA we just rehashed C's whole regimen which I am game for discussing at any time but it kind of side tracked me. But thanks again for all the info.

I just wonder what the standard time frame is with any treatment(beyond the time "to get to theraputic range") if it doesn't get your inflammation levels down in the normal range, 6 months? 12 months? If your child isn't presenting with symptoms but there is still inflammation then do meds get a shorter window of time to prove efficacy, diets a longer window of time?

If inflammation is present are you assured damage is being done?

I personally like to see all marry up...symptoms and blood work. If they don't then I would pursue why they don't and do what what is necessary until they do.

My two are at opposing ends of the spectrum:

Sarah's bloods were never reflective of where she was at so symptoms were her only sign.

Matt's bloods showed everything and when he was eventually stabilised they would even show what hadn't yet translated into physical symptoms.

Because of my own personal journey I am now never happy to rest until I know that both the physical and the clinical reflect each other. I will add that Sarah's experience has forever made me antsy about the effects of simmering inflammation.

Dusty. xxx

Wow, ty David, for chiming in...I just learned a ton, although I will retain none of it lol.

I wanted to comment that it has been a year since Izz has been seen in the GI office (I text/meet her doc regularly as we are friends so we discuss her care regularly). I was thinking it had also been a year since her scope and asked if we should revisit...he said he isn't in any hurry as she is fairly asymptomatic-he won't plan on rescoping her if things continue the way they are going. Monthly labs fairly regular, CRP <3, a bit of anemia (that we manage with diet), and other than stress related, "regular" bms and minimal pain. She had chronic mild inflammation and 3 polyps at her last scope.
I'm not in any hurry either...

Amy2 said:

I recently found out that my oldest daughter has not been scoped once during her 7 year "remission". She told me that doing so can bring on a flare. It's her business, she is 31, but is it true that getting cleaned out can cause one to flare?

Click to expand...

Yes, in my daughter's case she had a clear colonoscopy and 9 days later had to be cleaned out again for a video endoscopy and found inflammation throughout both small and large intestines. I think the two cleanouts were a big part of the difference. I don't think that it necessarily was an irreversible flare. She has healed up a lot since then, and she was on no meds when she went through the testing.

Great questions, Clash. DS's CRP hovered in the low 30's for almost a year. The quack GI said not to worry, it's not getting worse and he's seen numbers a lot higher. I was uneducated and scared so I just went with his advice and we did nothing. Because of that, DS now has 10 fewer inches small intestine! We obviously waited too long and I swear I will not make that mistake again.

Personally, I'm of the mindset that if a med isn't working within the timeframe that it should (i.e. 6 mp within 3-6 months) then I'd move on. I also think that even if there are no clinical symptoms, only endoscopic, that they still need to be treated. Just my opinion on that one... it took a long time for DS to look sick on the outside and by then it was too late to get things under control without surgery.

Our GI said DS needed to be scoped at least every 5 years whether he is showing symptoms or not and we go for labs, a good indicator in our case, at least every 6 months.

David... what is the deal with water? We have city water, but filter our drinking water with reverse osmosis. Is that good or bad?

Can anyone recommend a good book about Crohn's? I don't understand a good portion of this thread.

Amy2, what don't you understand? I think people would be willing to answer any question you don't understand. Use the "quote" button of the part you don't understand and then ask for it to be explained. I think Crohns books aren't going to teach you nearly what you are going to learn on these forums...

Mehita said:

David... what is the deal with water? We have city water, but filter our drinking water with reverse osmosis. Is that good or bad?

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Reverse osmosis water strips all the minerals out and the water you drink is actually sucking minerals out of you when you drink it rather than providing you minerals like it should. It's quite unhealthy.

I put my water through reverse osmosis but then put it through a remineralizer filter that puts calcium and magnesium in it.

I talk about it in greater depth in this thread and provide citations to back up my assertions.

Mehita, where was the location of your son's resection? Has your son improved since surgery? The GI said we have to get even endoscopic inflammation under control and so we are looking at a change in meds and/or even surgery. We have tweaked meds and added meds at each indication of active disease. The hardest part is the lack of symptoms but the GI said lack of symptoms is not the goal so I have to let go of that mentality. I'm trying but Remicade worked so well in the beginning, I guess it is just the fear that the next med may not even do as well as Remicade.

Clash said:

Mehita, where was the location of your son's resection? Has your son improved since surgery?.

Click to expand...

His resection was approximately 3 feet into his small intestine and he is doing extremely well right now. I am completely amazed with his energy, growth and new love of life. I keep pinching myself because it still seems so surreal after everything he'd been through this past year.

Unfortunatley, I'm kind of in the same boat as you, Clash. He's currently only on Pentasa and supposed to start Remi or 6mp in June after scopes and possibly another MRE are done, but it's hard to consider changing his meds when he's doing so well now. I've done the research though and I know he needs something stronger than Pentasa, especially now that he's already had surgery. We'll just see what his scopes/MRE look like and go from there.

My biggest fear is going through all the standard drug therapies too quickly and running out of options at some point. He's only 13...

I can understand your concern, before the Remicade C was miserable every day, he was in so much joint pain and so fatigued. His tummy pain was cyclical and he would lay in bed and rock. I keep thinking if surgery can get that area at his ICV then Remicade or one of the other biologics could keep the rest at bay but my concern is the same are we burning through meds too fast. The GI says there is no such thing just inflammation that needs to be treated and I need to let go of the idea that a certain drug should be the end all/be all and focus on which treatment brings about remision.

^^^ yeah that
I still have similar concerns but realize there really is no alternative.
We have to get the inflammation under control to promote deep remission.
Not to say it doesn't scare me since DS is only 9...
And we have tried all the other meds with very little success
But just have to go with today for now

Great thread Clash!

I've been trying to keep up with it but haven't had a chance to respond.

Stephen's case is a bit different as the treatment change was due to a new GI. But, I think MLP said above, often the decision really rests on the comfort level and priorities of the patient/parent and GI... I'm not saying that any inflammation is acceptable but some may prefer the risk of 'mild' inflammation to the meds. Again, not saying who's right or wrong...

When we transferred GIs, we went from one who thought the amount of inflammation was controlled and was okay with EN and the next GI, looking at the exact same results, was practically ready to haul Stephen off for remicade that afternoon (although it then took months!!!!!!!). :ywow: We asked another doctor (BIL's doctor, not a GI specifically, but head of surgery at another hospital) if he had any thoughts as to the discrepancy in treatment. He thought the first GI, being a ped GI, could have inflammation risk a bit further down in priorities and be more conservative re meds' risks and more concerned with nutrition/development (as long as inflammation was under control). And, that, the adult GI might be less concerned with the nutrition/development and more concerned with the inflammation risk, hence his recommendation for immediate top gun treatment. :ywow: So, perhaps, no right or wrong, just weighing the risk:reward options in the given circumstances (child vs adult).

So frustrating!!! :voodoo:

At Stephen's next apptmt (mid April), I do plan on asking Stephen's GI how/when we will determine remicade's efficacy - will share his answer as to how long he is willing to wait before he sees results.

16 year old son will see the doctor in 6 weeks. What are some good questions to ask?
Or, should I call sooner and ask some because I feel a little in the dark about the game plan.

He was diagnosed with Crohn's a month ago, has gone from 79 lbs to 99 lbs, feels good and they said his inflamation was normal - 12 at his last dr apt 2 weeks ago. His diet consists of 8 Peptamen a day. He's taking Pentasa, Prevacid and supplements.

How will I know if he needs to continue those drugs or take something stronger?

His Crohn's symptoms consisted of no weight gain, then weight loss, moderate stomach aches, low energy and just before going to the hospital, he began to have burning with bms.

Amy,
We usually have labs done a week or so before appts. so that results are back and we can see if we need to adjust/change anything or what we are doing is working. Has he had his vitamin levels checked? B12, D, Magnesium?
That's great on the weight gain! I'm a big planner so I always ask if XYZ happens what are your thoughts on what we should do.
Jack has an appt next week so I've got my handy dandy notebook out, thinking of questions myself already. What should I expect/hope for in turns of growth (since nothing happened the last 3 years), Do we keep on with the Peptide? How long? How much? Should we decrease amount of drinks and maintain current weight 100lbs? What if he gets taller and doesn't increase weight at same ratio, up the drinks at that point? See - my mind starts spinning, which is why I write them all down so I don't forget them.

Some suggestions are:

- Where is his crohns affecting? Large colon, small intestine, etc. (could be multiple locations)
- The 12 you refer to is probably either his CRP or ESR (Sed. Rate). Our lab's normal ranges are CRP 0-5, ESR 1-10 but, different labs may have slightly different normal ranges. Also, countries may use different measurements so numbers may not match up. CRP and ESR are inflammation markers so are an indication of inflammation levels, however, they are not necessarily indicative of intestinal inflammation - could be a sprained ankle, cold, arthritis, anything...
- Often blood results do not match internal inflammation (including CRP and ESR) so what other tests will be done to look for inflammation - colonoscopy, endoscopy, stool tests (calprotection, lactoferrin), MRE, CT scan, SBFT, ultrasound, capsule endoscopy (pillcam), etc. I'm sure the forum Wiki provides info on all these tests or just a search will get you lots of info.
- If your son is feeling good, looks good and results are good, what follow up is the doctor planning - apptmts and tests
- what symptoms should you be watching for and what would warrant a call to the GIs office. How can you treat minor symptoms?
- should you continue with the peptamen? Why or why not? My son has continued with supplemental EN for almost two years now (he's now 18).
- testing for vitamin/mineral levels - vitamin D, magnesium, folate... there are more but I seem to have a mental block at remembering what needs to be tested and why! :facepalm:

I'm sure other's will chime in too with their suggestions

David said:

In my opinion, you don't stop trying to find the perfect combination of treatment until you reach deep, stable remission. Not clinical remission, not biochemical remission, but deep, stable remission. Anything less and bowel damage can be occurring which is unacceptable.

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I am sorry, I am sure this has been discussed somewhere on here before :ybatty: but what exactly is deep, stable remission and how do you determine you have it?

Maybe I am just getting unnecessarily paranoid...who me:confused2:? My daughter has gained weight (although plateaued as of September), grown in height (also plateaued), bloods return normal and is asymptomatic. No imaging ever of small bowel. Just scopes 2/12. Is that deep solid remission? If so then what is clinical remission or biochemical remission?

Clash..10 pounds and 3/4 of an inch...that is fantastic! I know how hard it was for him to get there. I know I have told you this before and it is hard to go against your doc but at 6 weeks max dose O was a mess the whole week 5 leading to 6. Shortening the schedule to 5 weeks and magic! Of course she did have a course of EEN thrown in there but 5 weeks works so well that when I asked doc if we could start extending out to help with the Remicade induced psoriasis he said, "No way".

Tess: I am curious to know how S's doc is going to evaluate efficacy of Remicade since on the surface and with bloods S looked very good and it wasn't until scopes etc that inflammation showed.

CIC, deep stable remission is clinical remission(disappearance of clinical or subjective characteristics ie symptoms) histological(remission of the microscopic structure of the tissue) and endoscopic(full muscosal healing) at least that that is how I understand it.

Hope everything is going great with O!!!


Edit to add: I would also throw in growth as well when dealing with kiddos but then that might fall under clinical?

So you actually have to go in there and look eh?

Things are pretty good here.

I know O hasn't had MRE/MRI and such but she did have a scope and there is a difference of opinion there too among doctors. Some say no reason to test if there are no symptoms and some say(or I have seen here) let's check out where they stand a year in. So I guess it really depends on if the kids is having symptoms and the stance your doc has. I would question the doc about the plateau(but she is involved in strenuous extra curricular activities so it could be just a need to take in more calories to offset all the activity).

Yeah, this is what has me head scratching. I went to a conference where he spoke and said emphatically that he scopes a year in to confirm remission and then every three BUT O is at 14 months and no mention of scoping...not that I am particularly interested and excited to have it done mind you but a few little things have me wondering...they are all very easily explained away but when I get paranoid I start thinking scope my kid! I already know the mre/mri is not used in this practice so that is a moot point.

I sent the doc an email asking him to tell O at her next appointment she has to drink a Boost/Ensure a day. Like you said, I just think she isn't getting enough calories.

Yeah if it was left up to C, he would just have a scope every so often, he said. He says there is nothing to them but drinking the gatorade/miralax and that isn't a problem for him. Plus he added that it is the best sleep ever! He did not like the MRE due to the med they inject giving him that hot feeling with nausea and you have to lie still for too long in an awkward position.

Since Stephen's diagnosis in May 2011 (and these are follow up tests AFTER diagnosis), Stephen's had 3 MREs, 2 ultrasounds and 2 scopes! All with no symptoms! And, the ONLY one I asked for/demanded was the last MRE because the GI wanted to go from EN to remicade based on six month old tests! :ywow: The one time the MRE was really warranted was the one time I had to go to the U.S. and pay for it myself! (I guess they were all 'warranted' but I mean in the situation where the MRE results counted the most!)

There is ABSOLUTELY NO LOGIC in Crohns - no consistency or consensus ANYWHERE - not treatment, testing, symptoms, results, triggers, etc. How can GIs have so many different opinions? I understand different treatments based on different presentations but, how can the testing be so different??? It really is so bizarre!!! And, I think it makes this forum and the sharing of information so much more important!

Tesscorm said:

How can GIs have so many different opinions?

Click to expand...

And for us what is actually happening is not what I heard him proclaim to a room full of people so that is what really has me confused.

Did you even notice my shout out to you above?

It really makes no sense!!! No wonder we're all here trying to find support and information... nothing ever seems concrete and then we're asked to make these important decision! :ywow:

CIC - yes, the GIs even contradict themselves! Stephen's GI was adamant we couldn't wait the three months to try LDN, it was URGENT to begin remicade or all hell would break lose and then leaves Stephen on NO meds for 4-5 months! WTH??? So, was he lying or is he the GI that just barely scraped by in his exams? :lol: I've always said... someone came last in the class! :lol: I actually don't think it was either , but I don't have an explanation either.

And, yes... I heard a screech... was that you? :kiss:

Talk about differing opinions! We are on our third pediatric GI in four years and hoping the third time's a charm.

First GI scoped only and totally missed the simmering stricture in L's small intestine. Decided not to treat him with meds at all. Everything kept getting worse so we got a 2nd opinion at a different clinic.

Simmer, simmer, simmer... GI #2 decides an MRE is warranted. Hello, stricture! Starts meds. One year later things are even worse than worse. Too much simmering has caused scar build up and leaves poor L with a small intestine that is only 3 mm in diameter. GI #2 lays a guilt trip on me for asking about surgery.

We meet GI #3 while in the ER because GI #2 is too busy for us (GI #3 is GI #2's boss). GI #3 wonders why we waited so long to do surgery!

Don't even get me started on their differing interpretations of inflammation markers. I think we'll stick with GI #3 for awhile. He has good poop jokes.

Clash said:

I can understand your concern, before the Remicade C was miserable every day, he was in so much joint pain and so fatigued. His tummy pain was cyclical and he would lay in bed and rock. I keep thinking if surgery can get that area at his ICV then Remicade or one of the other biologics could keep the rest at bay but my concern is the same are we burning through meds too fast. The GI says there is no such thing just inflammation that needs to be treated and I need to let go of the idea that a certain drug should be the end all/be all and focus on which treatment brings about remision.

Click to expand...

My friend's son had a "refractory" case of crohns, no meds were working. He had surgery and had the worst parts removed. He was put back on 6mp (which did not work pre-surgery) and has been in remission for a year and a half.

I think you can "re-visit" meds that previously did not work once very damaged areas are removed. I know remicade is different because of antibodies. So hopefully either new meds will be available shortly or old meds can be re-visited.

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!!!!

So glad I found this thread, my GI says I'm in biochemical remission, but I still have minor stomach aches, he said it could be related to what I eat, (my diet is pretty healthy, I never eat processed food, the most unhealthy things I eat are "organic" rice puffs and lactose free milk, (recently stopped drinkin almond milk which had carnageen in it-hope that didn't do any damage) anyway my question is, I'm waiting for my fecal cal protein to come back, how accurate do you think that is? I know bloods can be misleading, but FCP is supposed to be far more accurate at measuring intestinal inflamation. I'm just a bit paranoid, I want to KNOW without any doubts that nothing's going on under the surface

Joshuaaa they are supposed to be pretty accurate unless you have activity going on in small intestine then it is possible to get a misleading count. At least that is what my sons GI says. We've had pretty good results with them so far

Fecal Calprotectin level is another thing I wonder about in relation to "deep stable remission". I have read on here and other sources that normal is <50 and for IBD'ers less than <100 to <150 but recently read a response from David that got me to thinking.

Someone said they understood that normal is <50 but asked should they expect that to be higher with IBD and David responded that they want it to be normal because elevated would reflect the likelihood of active inflammation.

So if your doc says they expect normal for IBD to be <150 then they are allowing for some simmering level of inflammation even if the goal is "deep, stable remission"...just another contradiction in dealing with this disease!!!! I'm so confused most of the time!!!

I see, well November last year my level was 450, jan this year it was 120, so I'm hoping this next one will be below 50! Fingers crossed! Man oh man I can't wait for the next few years of medical advances. So sick and sad of hearing everyone's suffering, we need a cure! Btw your kids are very lucky they have such knowledgable and caring parents!

Trust me clash you are not the only one-
Head swimming in circles on this one .

Me too... I keep reading and asking and reading and sometimes it really seems there is NO logic and, at the end, everything is just a guess... (makes it very hard for me to have much trust in any decision!). And, then, as discussed above... the people who we look to for guidance, the GIs, contradict one another and themselves! Just leaves me with more and more doubts! :ybatty:

I sometimes wonder if it's just US??? Are we all just the sort of people who need definitive answers? Is that why we're members of this forum? I spent last evening analyzing the images in Clinical Imaging of the Small Intestine and actually trying to see the things they identified in the notations! :ybatty: Is that normal for even an obsessed parent? My friend whose daughter has crohns doesn't do ANY of this research... she loves her daughter and worries just as much but she doesn't seem possessed to know every detail. :confused2:

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!

YES!!! :lol: 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! :ywow:

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

Maybe we should have an online study group - don't forget the wine and beaver tails! :thumright:

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!

Twiggy930 said:

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!!!!

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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.

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???

Johnnysmom said:

I will say that if weight gain is lagging or growth I would consider that a symptom.

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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?

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.:ybatty:

Johnnysmom said:

My brain hurts from trying to guess why the heck they do things.:ybatty:

Click to expand...

Haha...yep...our favorite game OUT GUESS THE GI.

I'll take colonoscopies for $200 Alex.

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!

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.

:rof::rof: 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.

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!

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! :lol: 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??)

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.

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

Tesscorm said:

even mentioning the time of year that growth typically occurs (maybe in the spring/summer??)

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What's spring? We are still wearing winter coats here. At this rate she will never grow!

Nope-no control issues here:shifty-t:

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.

CIC...for you

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!

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 ..."

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.

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

Johnnysmom said:

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.

Click to expand...

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.

Click to expand...

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...

Wow Aussie! Thanks so much that really helped me! haha and my daughter's doc!

Yes, thanks so much Aussie!!! You've answered lots of questions for me!

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.

Yes, I agree that was so helpful Aussie, thank you so much!

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?!?!? :awe: Needless to say, I'm sure you can all imagine what I've done since... :study: :study:

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?

Never heard of an INR (International Normalised Ratio) being used as an inflammatory marker for Crohn's. My first thought was what you are alluding to Tess...people in a flare tend to have 'sticky' blood so are they saying that you should have an increased prothrombin (clotting) time if you are flaring? Again, I have never heard of an INR being used in this context.
If there is bleeding associated with inflammation then platelets could also be an indicator of active disease.

Perhaps the liver aspects of things has to with Vitamin K and its role in blood clotting. Vit K is stored in the liver.

Dusty.

Tesscorm said:

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?!?!? :awe: Needless to say, I'm sure you can all imagine what I've done since... :study: :study:

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?

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Can inflammation cause clotting? My husband has a clotting disorder (Factor V Leiden deficiency). I don't remember if Jaedyn has ever been checked for this. So, now I'm wondering if she is at increased risk for clotting as a Crohn's patient, and should I be pushing for her to be tested?

Dusty, I do know that elevated platelets on a CBC could indicate inflammation.

Hey Carol,

Crohn's has been associated with an increased risk of blood clots...

http://www.webmd.com/ibd-crohns-disease/news/20110221/inflammatory-bowel-disease-raises-clot-risk

...I think it would be worth having J tested so you know where you stand in regard to an even higher clotting risk, plus being female there is the possible use of contraceptives in the future.

Dusty. xxx

Thanks Dusty. I've read a bit on this now but something is still confusing me??? So, inflammation caused 'sticky' blood and, according to the link I posted, due to the excessive 'clotting' the blood is left with few clotting agents, resulting in longer clotting time and the risk of bleeding. PT/INR tests this 'time'. But, if blood is 'sticky', wouldn't it clot easier? Why would sticky blood take longer to clot? Is it simply because there is a lack of clotting agents to make the sticky blood clot?

CarolinAlaska said:

Can inflammation cause clotting? My husband has a clotting disorder (Factor V Leiden deficiency). I don't remember if Jaedyn has ever been checked for this. So, now I'm wondering if she is at increased risk for clotting as a Crohn's patient, and should I be pushing for her to be tested?

Dusty, I do know that elevated platelets on a CBC could indicate inflammation.

Click to expand...

Carol
when Ds had vasculitis -clotting disorders were brought up and tested for solely because he had crohn's for the same"sticky" blood reason.

Tesscorm said:

Thanks Dusty. I've read a bit on this now but something is still confusing me??? So, inflammation caused 'sticky' blood and, according to the link I posted, due to the excessive 'clotting' the blood is left with few clotting agents, resulting in longer clotting time and the risk of bleeding. PT/INR tests this 'time'. But, if blood is 'sticky', wouldn't it clot easier? Why would sticky blood take longer to clot? Is it simply because there is a lack of clotting agents to make the sticky blood clot?

Click to expand...

The link you have posted Tess is referring to systemic inflammation, so a more severe condition than inflammation that is confined to the bowel, joints etc. In the case of systemic inflammation I can see that the demands placed on the body would overwhelm the coagulation system and cause the opposite effect by depleting its agents.

In IBD though the demands aren't as great. The inflammation that is present is creating enough pressure that extra platelets and clotting agents are required but not enough to deplete supplies. The issue is also that is a chronic problem and hence the blood becomes 'sticky' and increases the risk of clots.

I hope that makes sense!

Dusty. xxx

Makes sense. Thanks Dusty.

I wonder why my friend's GI refers to this test as an indication of inflammation (she said they refer to it quite regularly). Does seem to give an indication but a bit 'indirectly'??? Perhaps all her other labs are normal... will ask her, would be interesting to know if, as all other labs are normal, GI has looked to INR?? (One more question for Stephen's poor GI! :ywow

we also never had this checked Tess. But I am wondering if she was referring to all the tests together as tests for inflammation and did not specifically mean that one

I would be interested to know too Tess as it would appear to me to be a quite indirect link at best. If other tests are normal I can't see how an INR would pick up what an ESR or CRP or FC or FOB wouldn't.

This is an intetresting overview of inflammation and coagulation if you are interested, it includes the role of INR, PT, ESR and CRP:

http://www.lhsc.on.ca/Health_Professionals/CCTC/edubriefs/inflam_04_06.pdf

Dusty.

No, Kim. We were discussing how Stephens almost all of Stephens labs were good bfr starting remicade, so what wud the GI use to determine efficacy. She then asked how Stephens INR was, when I said I'd never even heard of that, she was allso surprised and said her daughter has it tested bfr every remi infusion and that her GI, more than once, has said that altho she looks and feels good, INR is still indicating inflammation. She's also on Metho so liver function might be playing a role in why the test is run but she's never had any liver problems. Strange, eh? I am quite curious now how and why its used! :lol: I've tried to do a bit more research but hvnt found anything with a direct connection btwn INR and crohns-specific inflammation.

Its also coincidental as, ever since I read that other thread abt blood clots, I did have 'clots' as something I was going to ask the GI about (if I had time)... Not something I think is overly concerning but no harm in asking...

Only brought all this up here bcz we were discussing inflammation markers...