Share Facebook


 
12-04-2017, 12:55 PM   #91
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
That is good to know! I didn't realize that was a thing.
12-04-2017, 04:30 PM   #92
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Great news
Same here
Ds looked great visually
GI even commented about things to do for ibs etcin the consult room after that first scope

GI of course changed his tune after the biopsy came back
After that any scope done GI says letís wait for biopsy first
__________________
DS - -Crohn's -Stelara -mtx
12-04-2017, 04:36 PM   #93
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
He has scopes after Christmas! I am bringing chocolate for his secretary who was a great help. He has to start prep Christmas day but I don't care!
So glad to hear this!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
12-04-2017, 04:42 PM   #94
Maya142
Forum Monitor
 
Maya142's Avatar
Glad you got a date!!! What a relief!!
__________________
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
12-04-2017, 06:01 PM   #95
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Good for you! O.K. now we don't have to force the FCP issue, although it would be nice for a baseline but I will stop being greedy.
__________________
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
12-05-2017, 01:02 PM   #96
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
My daughter had normal labs for years, literally. They finally took her serious when she was 12 without a bit of puberty, severely underweight and in constant pain. Before that it was IBS, IBS, IBS. The only lab that ever confirmed any abnormality was her fecal calprotectin. Other labs would be off a little here and there, but not conclusive. Even original scopes and biopsies were inconclusive. Pill cam was diagnostic originally. I hope they can find answers for your son. I'm sorry he's suffering.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
12-05-2017, 03:31 PM   #97
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Good news! As the others have said, be sure a biopsies are done. Good luck!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
12-05-2017, 06:08 PM   #98
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Great news about getting a date for scopes!
My older daughter is also one of those with normal Labs all the time. Fecal calprotectin is the only test that works for her.
__________________

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.
12-27-2017, 07:40 PM   #99
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
Scopes done. He has small ulcers in his colon, not too many, and some changes in the TI.
Biopsies will be at least a few weeks for results.
Dr. Is planning to schedule an MRE for him.
He said if it's Crohn's, then we caught it early.
I asked him if what he saw would cause pain for months and he reminded me that you can get pain with ibs too and nothing on scopes. Really no correlation.
His stomach looked fine. So at least we know there was no gastritis, etc...
Anyone get a mild Crohn's at diagnosis? What happens with meds? H was more severe.
12-27-2017, 07:47 PM   #100
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ds had a visually normal looking scope
Biopsy results showed acute and chronic inflammatory changes plus granulomas so Crohns dx
GI tried pentasa at first since he wasnít convinced completely of Crohns
MRE showed thickening in the TI
Second opinion said yep Crohns
So Ds was switched to een /6-mp
Which he took for 8 months
Added steroids twice
Second scope showed inflammation
So switched to mtx and steriods
Too many extra intestinal manifestation when steriods were lowered.
So switched to remicade 1 year after dx


Kids even mild kids tend to need an immunosuppressants minimum
They now started with mtx

Your Dd was only 3 so even severe Crohns at three starts woth immunosupressabts typically
Then moves up to biologics

Since your in Canada who knows how they will start

Did GI try to explain away the ulcers as ibs ???
Thatís concerning

Especially since he had belly pain and they found evidence of ulcers
Wow 😮

Big hugs to you
12-27-2017, 07:50 PM   #101
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Wanted to add you can get belly pain with Crohns and inflammation
Because Crohns hurts
12-27-2017, 07:58 PM   #102
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
No, I should have explained that better. GI was trying to explain to me that pain level does not always match what he sees visually.
But you are wonderful to be irritated by the idea he might say IBS.
Dd started with Aza once biopsies were returned. I wouldn't allow ds to be given AZA because of risk. That drug scares me more than biologics.
I wonder if what he saw today could be something else. Scope prep? He was very mellow about it. Said "if" a few times...
12-27-2017, 08:06 PM   #103
Maya142
Forum Monitor
 
Maya142's Avatar
Scopes done. He has small ulcers in his colon, not too many, and some changes in the TI.
That sounds exactly like my daughter's first set of scopes. She had ulcers through her colon - from her rectum till her cecum. Her TI was friable and bled when they biopsied it.

Biopsies showed granulomas and chronic inflammation, as well as acute inflammation. Every single biopsy showed inflammation.

Our med situation was complicated, because M was already on a biologic for her arthritis, but it didn't treat IBD. Since she was already on a biologic, her rheumatologist felt it would be best to switch to one that treated both diseases. So we switched to Remicade.

She was also on MTX for her arthritis.

We added Entocort because she had abdominal pain and Remicade took a while to kick in.

So essentially we treated her Crohn's very aggressively and I am SO glad we did. Scopes done 8 months later looked so much better. Her colon looked "perfect" and her small bowel looked slightly red but mostly normal. Biopsies were NORMAL except for in her TI where there was mild inflammation.

She has been on biologics since then and we have been lucky enough to avoid complications like abscesses, fistulae and strictures.

I am not sure what your med options will be since you're in Canada but if you're not willing to try Imuran (and I can understand why), then probably MTX will be used if the doc is not willing to try a biologic yet.

Sending HUGS . Given H's history, I would prepare yourself for a Crohn's dx.
12-27-2017, 08:31 PM   #104
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Glad I miss understood
I would think mtx as well as a first step
Given family history and you caught it early
When used as a monotherapy
Mtx typically is shots
Only pills are used for combo with biologics

More hugs your way
I hate the @ifs
12-27-2017, 08:46 PM   #105
Maya142
Forum Monitor
 
Maya142's Avatar
I wanted to add - my daughter takes Levsin for belly pain. It is an IBS med but it works well for crampy belly pain. I just wanted to mention it because whatever he is put on will probably take a while to work and your poor kiddo has been in pain for quite a while now.

The other option for pain relief would be EEN or steroids. Those would probably work a lot better. Do you think he'd be open to trying EEN?
12-27-2017, 09:29 PM   #106
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
I wanted to add - my daughter takes Levsin for belly pain. It is an IBS med but it works well for crampy belly pain. I just wanted to mention it because whatever he is put on will probably take a while to work and your poor kiddo has been in pain for quite a while now.

The other option for pain relief would be EEN or steroids. Those would probably work a lot better. Do you think he'd be open to trying EEN?
At this point I think the pain he thought was stomach pain must be TI or other intestinal pain since his stomach looks fine.
He used to love drinking his sister's shakes(foreshadowing?) I think he could do EEN but now I want to wait for MRE so all the diagnostics are in..
He's lately moody so would hate to live with him on steroids but we do what we must.
Does Levsin work for any part of the system?
12-27-2017, 09:37 PM   #107
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
P.S. Thanks for the hugs. I think I am in denial so I might need them again later too.
12-27-2017, 09:42 PM   #108
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Levsin works sometimes on intestinal cramping
Other kids use bentyl
Ds does better on bentyl
But has tried both
Itís hit or miss
Both are anti spasmodics

Definitely wait till after MRE before changing anything
Dx first
treatment afterwards
Better to know what your treating

Sometimes once kids start to feel better even in steriods
They act better sorta thing
Itís hard to be up beat when you feel horrid and no one tells you why

Poor kiddo

Hope you get answers quickly
They really make you wait a few weeks for biopsy results

When my otherkiddo (non ibd) had a scope for possible ibd
Ds GI has them give him the biopsy results the next day
GI figures one kid with Crohns was difficult enough
He didnít want us to have to wait longer than necessary

Normally out patient biopsy results are given within or less than a week
Inpatient scopes within 24 hours

The past 4 scopes have been inpatient so very spoiled
Next one is outpatient
12-27-2017, 09:45 PM   #109
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
They told me 6-8 weeks! But they put a "rush" on it so if I'm lucky ...2 weeks.
It was 12 weeks for H!
12-27-2017, 09:55 PM   #110
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Your poor mom
Thatís horrible to make you wait so long
3 weeks for a ďrushĒ
12-27-2017, 09:56 PM   #111
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
∑ NG Tube
Hugs, hugs and more hugs!

Even if it was suspected...... Your never ready!

Not much I can say but offer an ear if you need one.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
12-27-2017, 10:04 PM   #112
Maya142
Forum Monitor
 
Maya142's Avatar
Levsin does work for intestinal pain. I mentioned it mostly because I figured he can't start EEN or steroids till you have a firm dx. So in the mean time, maybe Levsin could help. My daughter's pain is in her TI based on where it is located (lower right quadrant).

Steroids may make him moody but sometimes they have the opposite effect. If the kiddo is feeling better, then they become so much happier. Sometimes my daughter is SO happy because her pain is FINALLY better and is bouncing off the walls on steroids, but other times she cries easily becomes moody.

It also depends on the dose for her.

Hang in there - 2 weeks is not too bad...especially considering for H you waited 12 weeks!! We only have to wait a week for outpatient scopes. Sometimes two or three days.
12-27-2017, 10:15 PM   #113
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Glad you are starting to get some answers, even if it's not necessarily the answers that you wanted... Hope the biopsy results come back soon--it's so hard to wait.
12-28-2017, 12:24 AM   #114
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
OK. I will let you stick your head in the sand a little longer. When I had my "you are getting old time to screen for cancer" scope, I had ulcers in my TI and my colon. The GI was concerned because of my girls' history so took biopsies and it was all normal. She chalked them up to prep. I have actually heard that story from a few people. BUT they were all non symptomatic.adults.

What did the GI mean by "some changes in the TI"? Has he been scoped before? What kind of changes?

I don't like IF and I don't like waiting. HUGS!

T was "mild" an went right away to MTX. 20mg. She did injections for a while and then moved to oral. It takes a while to work fully so most GI's have you attack the disease with either EEN or steroids while waiting.

Sorry if I am misunderstanding anything or missing anything. Reading and typing in the dark with severe jet lag, I will catch up again tomorrow.
12-28-2017, 12:33 AM   #115
DanceMom
Senior Member
A's scopes are never "impressive". Mild acute inflammation and the elusive lymphangiectasia. It doesn't look horrible, but it's certainly life altering. We were offered bandaids like Bentyl and Levsin but they didn't help. IVIG was life changing and Cellcept fills in the gaps.

He may or may not have Crohn's. I think it's important to remember that Crohn's is probably one of the more common diagnoses he could have. It certainly sounds and looks like more than IBS. Sorry Mama.
__________________
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
12-28-2017, 06:13 PM   #116
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
I totally understand about keeping your head in the sand. I was the same way when kiddo number two was diagnosed. Sending you lots of hugs too!!!
12-30-2017, 01:06 PM   #117
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
In the category of things we forget.....

If you can, show up to mre with very little in their stomachs and with them hungry. It helps get the barium down.
Yesterday, 10:04 PM   #118
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
We received the news today that C has Crohn's (H's brother). 8 weeks of EEN plus 20mg Mtx injections to start asap.
He's handling it ok. Truthfully we've been really distracted getting the tb skin test and chest xray done, buying the shakes and so on.
I'm bribing him to do EEN so he's on board.
I saw it coming so just in taking care of business mode now. I think the shakes will help his abdominal pain.
Tomorrow we talk to the dietician, I guess he'll need about 8 plus calorie shakes a day, he's about 78 lbs. Does that sound right?
I'm keeping him home a few days to get used to the dietary change.
Yesterday, 10:20 PM   #119
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Oh--so sorry about this news, even if you were expecting it. I hope that there is some relief in at least knowing what it is and being able to start treatment. Good luck with EEN; hope it brings quick relief to his symptoms.
Yesterday, 10:31 PM   #120
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Great big hugs
Even if you know itís coming
Itís still sooo hard to hear
I think the calories depends more on age than weight
ďPlusĒ versions are harder on the gut
Might be easier to start with the regular version first
Since he already has a lot of abdominal pain

What is his age ??
Reply

Thread Tools


All times are GMT -5. The time now is 04:49 PM.
Copyright 2006-2017 Crohnsforum.com