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01-07-2013, 09:34 PM   #1
my little penguin
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Flare or fluke

DS had bloody d x5 on Thursday with severe stomach pain .
Friday very soft with bloody mucus - 1 BM
Minor stuff sat stomach pain mostly gone
Sunday fine 1 BM
Tonight back to 3 very soft but crying from the stomach /bum pain while going
Gritting teeth rocking back and forth pain but no blood

He is fine now only pain while going

At what point does it go from a fluky thing to a flare thing???
Guess I have to call Gi again in the am
Since he wanted updated if anything changed .
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01-07-2013, 09:39 PM   #2
Jmrogers4
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I hear ya, still hoping it is a virus but thinking it is probably flare as the eczema and joint pains have also reared their head. Hope it is a fluke and all goes back to normal soon
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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
01-07-2013, 09:40 PM   #3
Farmwife
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I'm so sorry MLP.
When you figure out how to tell the deferents between fluke and flare, let the rest of us know, will ya!
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Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Remicade started on (9/8/14)Every 4 wks
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01-07-2013, 09:41 PM   #4
my little penguin
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Thanks -- no other signs yet so......
01-07-2013, 10:16 PM   #5
Clash
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MLP, I hope it is just a fluke. I know for two infusions early on C would have multiple soft bms four days after the infusion, he would then be fine until that fourth or fifth week when his cd symptoms would come back(this was before the tightened schedule). C tends toward having C instead of D so I found it odd but it would straighten out the next day or night. I don't remember any pain though.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
01-07-2013, 10:19 PM   #6
my little penguin
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I would understand if it was C and a few weeks after his infusion
But he just had an infusion a little over a week ago on Dec 27.
Before remicade he would complain of stomach pain but not cry while going.
D or major blood was never an issue for him.
Just sad
01-07-2013, 10:27 PM   #7
Clash
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I know what you mean it was the same for C, both times 4 days after infusion and both times multiple bms almost D, which isn't his normal CD thing. It only happened after two infusions and it was early on in the regular doses before we started tweaking everything. I really hope it is just some kinda fluke or something. I don't think it was a flare for C as that always happened further out at about 4 weeks.
01-07-2013, 11:16 PM   #8
Devynnsmom
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Hoping its a fluke!!
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-08-2013, 03:22 AM   #9
Sascot
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Hoping a fluke too. Not sure where you are but Scotland is in the grip of loads of viruses including a really bad tummy bug . My husband had it and I ran round with my disinfectant spray so that Andrew wouldn't get it.
01-08-2013, 03:32 AM   #10
izzi'smom
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hoping it's a fluke and sending hugs!
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01-08-2013, 07:00 AM   #11
crohnsinct
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Stomach bugs going around here to. One is diarhea and pain so maybe....

But let me add that O had joined the 4 days after infusion club. For the past two 4 days after she starts bleeding for a day and then mysteriously stops. Nothing else...just blood. WTH? Can't wait for t he next one to see if the pattern continues.
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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Entocort
IBD-AID Diet
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01-08-2013, 07:09 AM   #12
Livilou
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So sorry MLP...I hope that this passes quickly for him. I agree with crohnsinct, there are many GI viruses floating around. Also, my son too in the past has had bleeding and some pain 2-3 weeks after remi infusions?? It hasn't happened with past 2 treatments, but there was def a pattern for awhile and MD was not too concerned because labs look normal and it usually only lasts for 2-3 days. Sending hugs and healing thoughts your way.
01-08-2013, 08:51 AM   #13
Momto2girls
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I hear ya, still hoping it is a virus but thinking it is probably flare as the eczema and joint pains have also reared their head. Hope it is a fluke and all goes back to normal soon
Not to hijack your thread, but is eczema a crohn's-related thing? Gracie's got bad eczema...it is flaring now but I wasn't sure if that was related?
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01-08-2013, 10:35 AM   #14
Farmwife
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Momto2girls
Here's a link to a list of EIM's
http://www.crohnsforum.com/showthread.php?t=22407

I was shocked the first time reading it.
01-08-2013, 10:49 AM   #15
Johnnysmom
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I think it could be either MLP. I think as DS gets older you will learn what is normal for him but I have had both my kids have weird blips where I am holding my breath only to have symptoms go away and not return. The question I always ask myself is: Would I change treatment now or adjust anything I am doing based on this change in symptoms? If the answer is no I wait and see. I think you are right to call GI and check in. But unfortunately I think you just have to wait and see. I think the fact that things have gotten better is a very good sign. And whenever Johnny has had issues they never just go away, things get better, then come back a bit, then go away etc. Johnny had stomach pain and nausea this summer for a month on and off (D is not his thing). His fecal cal at the time was 586 so I thought for sure we were headed toward a flare. But things got better. Hopefully they will continue in that direction. It will be interesting to look back when he is an adult and see what course everything takes.
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01-08-2013, 10:55 AM   #16
crohnsinct
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[QUOTE=Johnnysmom;568343] The question I always ask myself is: Would I change treatment now or adjust anything I am doing based on this change in symptoms? QUOTE]

HA! Love this! I am going to print it and post it on the mirror, fridge, car etc.
01-08-2013, 12:31 PM   #17
my little penguin
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Thanks johnny'smom

I left a message with Gi
I know we are not changing anything
Just frustrated that it took so long to get to a good place and I can't fix the part where he is crying in pain kwim .
Stomach pain nausea I am used to as well as his other EIM
But listening to him cry and cry be doubled over because it hurts so bad to "go" in his bottom and stomach at the same time
and soft stool mind you
It's just hard.
My plan right now is to update the Gi if it gets worse ie more blood or about once a week if it continues.
Thanks for listening
01-08-2013, 05:23 PM   #18
Jmrogers4
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Thanks johnny'smom

I left a message with Gi
I know we are not changing anything
Just frustrated that it took so long to get to a good place and I can't fix the part where he is crying in pain kwim .
Stomach pain nausea I am used to as well as his other EIM
But listening to him cry and cry be doubled over because it hurts so bad to "go" in his bottom and stomach at the same time
and soft stool mind you
It's just hard.
My plan right now is to update the Gi if it gets worse ie more blood or about once a week if it continues.
Thanks for listening
I just want to give you both a hug It makes me so frustrated when they are in pain. I just want to take it away.
01-08-2013, 10:33 PM   #19
Crohn's Mom
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did you hear back from the GI today MLP ?

I have no experience with Remicade here, but I found all of the "patterns" mentioned here very interesting !

I hope for you that its just a "fluke" as you say; and I hope more that the pain has eased!!
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and Austin (18)
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01-08-2013, 10:45 PM   #20
kimmidwife
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Hi MLP,
Hoping he is doing better. Sending hugs and prayers! Hopefully it is a bug. They are going around here like crazy too.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-08-2013, 11:19 PM   #21
my little penguin
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Thanks Gi did not call back
Re read my post
Pain was around his stomach area higher up so he would hug himself to feel better and double over.
But not if he had a small BM like a piece or two
If he went alot that was when he was in pain
Confused

Thankfully no pain tonight
But just one piece so....
Have to wait
One of my crohn's irl people said if it keeps up to watch for narrowing ???

So something else to worry about
Reality is other than the bathroom time
He is really good
Just have to be patient because time will tell what is going on I am sure
01-09-2013, 05:58 AM   #22
DustyKat
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Sending loads of love, luck and healing thoughts your way mlp...

I hope more than anything it is a fluke for your lad and we will all wait right along with you.

Dusty. xxx
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01-09-2013, 09:00 AM   #23
Tesscorm
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Just caught on up your thread... so, so sorry you're on this rollercoaster!! There's absolutely nothing tougher than seeing your child in pain!

It certainly doesn't explain the stomach pain but the pain when having a BM... could he have fissures? (sorry, gotta to run but just a thought...)

I hope, hope you're seeing improvement and much less pain!!
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Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-11-2013, 09:05 AM   #24
Tesscorm
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MLP, how's your little guy doing?
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