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Crohn's Disease Forum » Parents of Kids with IBD » Check-up time, fingers crossed


 
06-20-2014, 06:41 PM   #31
crohnsinct
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Yeah...I think it was Mehita who said on her thread GI's shouldn't think out loud...at least not in front of us!

I hope you get some clear answers and a confident direction forward.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
06-22-2014, 10:42 AM   #32
kimmidwife
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Clash,
I hope you guys get the biopsies back quick and are able to figure out the best course of action. It sounds like there has been a lot of improvement. Maybe just more time is needed? Keep my fingers crossed tent the MRE goes smoothly.

Kim
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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.
06-22-2014, 01:23 PM   #33
Clash
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He is still feeling really well. The GI said that concerned him the most, that the disease was insidiously silent and simmering in C's case.

He was happy that he was able to get through the TI but he did say it was a mess from what he could see beyond the IC valve.

Oh, I forgot, C has been working and spending a lot of time with friends. He admitted he hasn't been doing his EN as often as he could and it showed on the scales. The thing is he has been keeping a calorie tracker and even without the EN he has taken in enough calories to sustain weight so that concerned the GI as well. He feels if we took a way the EN the weight would start dropping again. So now back to almost 2700 cals overnight instead of the 1500 cal supplement he had dropped to.

And lastly, I completely forgot to ask what his height was, sheesh!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


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

PAST MEDS: remicade, oral mtx, humira
06-22-2014, 11:50 PM   #34
awmom
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Hoping the biopsy results come quickly so you know how to proceed. How have his labs been Clash? Are they representative of the GI s visual inspection of his TI? It sounds like the GI is pretty on top of things. Glad C is feeling well and that there was improvement noted in the colonoscopy.
06-23-2014, 06:51 AM   #35
Clash
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awmom, C's labs are never indicative of the severity of what is occurring inside. Even through his worst flare his all was normal and CRP was just a tic above normal. We have been using fecal calprotectin stool test, last year it showed a great correlation with the scope and MRE performed at the same time.
06-26-2014, 04:33 PM   #36
Clash
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Well, C's blood work came back, all normal.work Biopsies came back with inflammation and it has spread to the large intestine(cecum). I knew the call was coming but was pleased at how visually the colon was unremarkable so the biopsies call really through me for a loop. Follow up appt is the 8th and there may be an MRE before then. Crohn's sucks!
06-26-2014, 05:38 PM   #37
Brian'sMom
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Clash, hang in there!! That happened to us back in 2013-colonoscopy looked good but news changed with biopsies. I 2nd that crohn's sucks!! One consolation is that you did the right thing in having things checked out. You caught it and now you can do something about it. Hugs!!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
06-26-2014, 05:45 PM   #38
my little penguin
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Big hugs ....
Fwiw DS tends to have more normal looking scopes but inflammation on biopsies.
The thing to keep in mind is that since things have always looked normal in the ceacum dies not mean the inflammation spread since the Gi has to go in blind ( random ) sample of a good looking area so the infkammation may have always been there and you just happened to get a sample this time .


Does this change the possible surgery outlook since his disease is no longer confined to just the TI???
I know for DS it will not be an option since his is from one end to the other .
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06-26-2014, 05:52 PM   #39
Maya142
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M is another other who looked fairly normal but had inflammation all through her colon and TI.
Sending so many hugs
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-26-2014, 05:56 PM   #40
Clash
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MLP, I think we will discuss it at the follow up. The nurse said to make sure that C was getting in his EN and stay the course with MTX until follow up. It is so weird too see the inflammation on the pics and hear about the biopsies and then look at this kid who isn't have pain or issues, this disease is so evil!

C doesn't know yet, he had already left for work when the nurse called. He won't get home til late so I guess I will let him know in the morning.
06-26-2014, 06:46 PM   #41
Tesscorm
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Sorry to hear, Clash. It's just so lousy that he feels and looks good and the inflammation is still simmering! I'm sure he'll be so frustrated as well. Sending lots of hugs!

Did his labs show abnormal results in the past? And, sorry I've forgotten, has he also had normal FC. But it is a good thing that he had the scope and biopsies... hopefully, it can be treated before it gets any worse.
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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
06-26-2014, 07:43 PM   #42
crohnsinct
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ARGH!!!!!:ymad :

Crohns Sucks!

But I guess if there is a silver lining it is that he feels well. We have to celebrate what little victories we do have eh?
06-26-2014, 09:37 PM   #43
Clash
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Tesscorm, his lab work has never been indicative of his disease activity. His regular GI nurse knows this but she had a nurse she was training start the Congo and give all the results then she took over to discuss them with me.

He has had a normal FC in the past but we haven't done one in the last few months because we felt it was overkill, knowing the ct results in February and that he would be having an MRE and colonoscopy coming up.
06-26-2014, 10:50 PM   #44
awmom
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Gosh Clash, that stinks that inflammation is still lurking around, but good that it will be addressed and doesn't go unnoticed, which would be easy to do since he feels so well. It is so good that you are on top of things. I hope all goes well on your visit on the 8th. Do you have any idea how your GI will want proceed in terms of treatment?
06-27-2014, 01:51 AM   #45
Catherine
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We also had inflammation on biospsie at colonscopy. The GI then did faecal calprotectin and increase maintenance med.
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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)
06-27-2014, 06:20 AM   #46
Clash
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awmom, we have discussed surgery a couple of times. I'm really not sure what avenues we will explore. C had progression since dx although it has been silent for the most part.

I guess we will discuss it all again at the follow up. Then the following day C will have an appt with his rheumatologist for his SpA. I'm sure biologics will be discussed at both appts. The GI I think would prefer to try a biologic like stelara or vedolzimab since he feels that tnf alpha isn't causing the bulk of C's active disease. The rheumatologist wants a biologic as well but I think wants to try humira for his SpA although has said she will discuss all with GI to decide which would be best for both diseases.

I'm assuming the vedolzimab and possibly the stelara could be hindered by the fact that C isn't 18, he won't be until the end of September.
06-27-2014, 06:28 AM   #47
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Sorry to hear the inflammation is still there. This really is a nightmare disease. Horrible to have to worry about stronge meds when he feels well. Hope whatever they choose works better.
06-27-2014, 08:46 AM   #48
awmom
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What a complicated set of decisions Clash! With N the remicade pretty much did away with his arthritis, and also his GI inflammation (at least for a while). When they did his resection because of a stricture last year they biopsied it and they said it was all scar tissue with no inflammation. I hope you are able to find a med that works for both so you can avoid surgery, especially since he is not having symptoms, narrowing/scarring (does he?), etc. Best, best of luck.
06-27-2014, 09:04 AM   #49
Clash
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awmom, yes he does have stricturing/narrowing in his TI. Last year they were unable to get camera through to TI due to the narrowing. This colonoscopy, he got through the IC valve but said the TI wasn't pretty and there was stricturing. I'm assuming that this is due to both inflammation and scar tissue since last colonoscopy the biopsies didn't come back showing as much inflammation and his FC was fairly low compared to his periods of flares in which it reached 1700.

I just hate the waiting game. Also, without supplemental EN C does not gain weight so I do worry about the malapsorption.
06-27-2014, 10:21 AM   #50
awmom
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gosh Clash.....the worry doesn't end does it. I know for me, sometimes the anxiety is overwhelming. Hopefully they will find the one med that will turn things around and put him in full remission. Johnny'smom said it took a couple of years to get her son into remission and then he put on the weight and is thriving. Please let us know how it goes after his appointments....and until then, a lot of deep breathing!!!
06-27-2014, 11:18 AM   #51
kimmidwife
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Sorry to hear this news! I agree Crohn's really sucks!!!!!!
Sending you lots of hugs. Did they give you any ideas what they are considering next?
07-10-2014, 11:58 AM   #52
Clash
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We had the follow-up appt from colonoscopy yesterday. GI wants to go 'ol school and do SBFT instead of the MRE, this time around.

We discussed again how C's disease had progressed regardless of the tweaks and additions with remicade(upped dose, shortened schedule, addition of mtx, finally high dose remi). Also, how important the GI thought FC, imaging and scopes were in C's case since he is showing no outward symptoms of active CD and blood work was always normal except inability to maintain weight..

GI wants C to remain on supplemental EN. He felt surgery was still going to be C's best option but holding back until results of this next test. If surgery, GI stated one trend was to wait six months, scope, then add maintenance med but he felt this is not what should occur with C. He wants to discuss what maintenance med would be best maintenance med with rheumatologist.

C had gained 1/4 in and maintained weight.
07-10-2014, 12:26 PM   #53
my little penguin
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Fwiw DS had a sbft pre dx
Its a lot of radiation - close to 15 X-rays
And did not show the inflammation in the TI that the mre and scope did .
In fact the TI was so swollen no barium would coat the ti so they could not see it at all
07-10-2014, 12:50 PM   #54
Mehita
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We did the "wait six months after surgery" thing and it didn't work out so well. Worst flare up ever four months after surgery. I'm not saying that will be the case for you guys, but I'm pretty convinced our kiddos need maintenance meds, esp if their disease has been hard to control. Just my opinion...

How is C feeling about all of this? Must be hard to feel fine, but then be told otherwise.
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- Small bowel resection, Jan 2013
07-10-2014, 02:20 PM   #55
Clash
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MLP, thanks for the info. There was something specific he was using the SBFT for that he decided on it over the MRE.

Mehita, the GI doesn't want us to wait six months, he wants to add meds right after surgery. He feels that though the trend of six month wait is legitimate for some groups of CD'ers that it usually isn't good for kids since their disease is usually more aggressive. Also, since C has the co-dx of SpA-AS then a med is doubly important.

The GI asked C what his thoughts on surgery were and he told the GI he was for it, that he would hope that he can get to a solid remission before heading off to college and his inability to gain weight w/I the help of EN be a thing of the past. He also said he trusted the GI and his opinions. But if the GI screwed him up he would be taking him off his Christmas card list! C really loves his GI and feels comfortable now taking control of the appt and asking questions and giving his thoughts. Sometimes, his thoughts or questions lead us down an irrelevant tangent but I applaud the GI for listening and discussing C's thoughts and questions.
07-10-2014, 07:33 PM   #56
Maya142
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He also said he trusted the GI and his opinions. But if the GI screwed him up he would be taking him off his Christmas card list!
That actually made me laugh out loud! It's great that he's so comfortable with his GI!
Hope the SBFT goes well. M didn't really have any trouble with hers last year, except she did not like drinking the barium or whatever it was.
07-10-2014, 07:45 PM   #57
Jmrogers4
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Hope it all goes well and gives the GI the answers he is looking for.
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Jacqui

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
07-10-2014, 08:49 PM   #58
kimmidwife
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A couple of interesting articles on small bowel follow through and MRE:
http://www.auntminnie.com/index.aspx...s&ItemID=96740

http://www.medscape.com/viewarticle/776511_4

This last article seems to state that MRE is more accurate in visualizing issues in the bowel then Other radio graphic techniques.
http://www.hindawi.com/journals/isrn/2013/419542/

All three articles state that MRE is still a new technology and so many doctors are still going back to the old technology of SBFT.
Just to give you an idea before you make your decision on which one to do.

Last edited by kimmidwife; 07-10-2014 at 08:50 PM. Reason: Forgot to paste
07-10-2014, 09:13 PM   #59
Clash
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Thanks Kimmdwife! The GI said that the MRE has clearer imaging and he normally goes with MRE, we also know the damage at the IC valve, TI area so he doesn't need the MRE to visualize that but what he is looking for he said he could get with SBFT. C had a SBFT before dx with the adult GI who first saw him since there isn't anyone qualified for MRE in our area. Since then C has had two MRE's with the pediatric GI we see now.
07-28-2014, 05:03 PM   #60
Clash
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SBFT went great. C decided to drink the barium and had no issues. The radiologist tech was awesome and when the radiologist came in she explained everything she was seeing. So no stricturing seen throughout until the IC valve area that we already knew about.

I assume the GI nurse will be calling in the next few days.
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