Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Little Farm Girl and Colitis


 
12-28-2012, 02:56 PM   #1
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Little Farm Girl and Colitis

Another new journey starts for us....again.

The GI got the biopsies already. Inflammation in the TI and colon. We're starting EEN with a tube on Monday or Tuesday.


I feel like screaming. I feel like dancing. I feel like over eating. I feel like shaking my fit a the world and yell ...I told you so.

The GI is going to call it Colitis for now. He said he still wants to take his time and make sure the dx is right. He gave the name of two other diseases that it could be but he focused on IBD the most. No matter what, right now her dx is Colitis.



So, if you don't mind your STUCK with us for now.

BTW, the GI said sorry. He just didn't think a she would have this. I think that speaks a lot for him.

I guess the moral to this story for all parents is.............
Don't give up! Fight for the answers your looking for!
__________________
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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-28-2012, 03:02 PM   #2
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ok so now you have a dx .... Breathe
But even with EEN to get down the inflammation
What maintence med are they putting her on? To keep the inflammation at bay since these meds take time to work ???
Are they doing an mre and or pillcam to throughly document the extent if her disease?
Keep pushing
You are getting there
__________________
DS - -Crohn's -Stelara -mtx-IVIG
12-28-2012, 03:07 PM   #3
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
I am so relieved you have got a working diagnosis that is good news. Onwards and upwards from here - now you know what you are dealing with
Polly
12-28-2012, 03:13 PM   #4
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
No, mlp he's not. I ask about the MRE but he said, right now it's not needed.
Maintenance meds????? No mention after talking about EN.
Originally he wanted the steroid approach. I forget but I thought he said 10 burst with a couple months of a lesser amount then a step down.

I'm the one that said EN. I think he about fell over. He said are you willing to do that? I said...ya! I asked about a tube this time and again...I think he fell over. He said are you willing to do the tube for her....I said, ya! He said the reason I didn't bring that up first is most parents are worked up about the dx. The tube is hard for them to hear about at first.
He said it sounds like I'm a pro! I said I've been fighting for my daughter for years. I already knew what this was. That's when he said SORRY!

I like him know!
12-28-2012, 03:29 PM   #5
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Sorry to hear the news....

At least you finally have an answer and can start treating her..

How is Grace ?
12-28-2012, 03:37 PM   #6
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Sorry i just read your other post ....glad Grace is good and happy.
12-28-2012, 03:40 PM   #7
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
Ack, another tiny one with this fu**ing disease now confirmed.
Another delayed dx due to docs misperception of how IBD can present.
Another doc NOT OFFERING EEN and the MOTHER has to ask for it...WTeffingF

Make sure, Fwife, Princess G gets a broken down formula. Peptide or amino acid based.
If her sm bowel is involved she'll absorb the formula far better.
If you plan to keep her on feeds long term as V is ask about a PEG tube as she is too small to remove/insert an NG tube nightly like V does.
One of the biggest mistakes mothers seem to make is stopping the EN as soon as the kid is stable. If it works, WHY stop it?
__________________
VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
12-28-2012, 03:48 PM   #8
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Wow, quick turnaround with the biopsies!! I'm glad you finally have a diagnosis and can move ahead!

As far as an MRE, Stephen was diagnosed in May by scope and only had his first MRE in Nov - not sure its the best protocol but I guess it's not unusual to wait for further testing like an MRE.

Someone correct me if I'm wrong but 'colitis' means inflammation of the colon - can't inflammation be caused by something other than IBD?? What I'm suggesting is that perhaps maintenance meds weren't mentioned because the GI believes it's an inflammation that can be treated (such as diverticulitis is inflammation but can be treated). But, FW, I'm just thinking out loud here...

__________________
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
12-28-2012, 04:02 PM   #9
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Tess after my daughter had her colonoscopy the DR told me she had colititis but he wouldn't know what caused it till biopsies came...so if it were something else i would think they'd know....i could be wrong
12-28-2012, 04:02 PM   #10
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Your right Tesscorm. He called it "non-specific" inflammation. He stated that a few other things can cause this BUT he focused (for the fist time) on her EIM'S. He said he has another 4 yr. old boy like Grace and feels that their "coming possible into IBD". But he said he want to make sure of her dx and not just start her on meds that won't help. I respect that!

So yes I'm trying feverishly to find my bubble and make believe this Colitis can be healed!
12-28-2012, 04:29 PM   #11
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Thanks for the update ... Danny had the non-specific inflammation on biopsies in several parts on both of his scopes ... but the 3 GIs we saw would not definitively call it Crohn's either. I sure hope the EN helps.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
12-28-2012, 04:36 PM   #12
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Well at least dannysmom, we're in good company.

I'm just happy for two things. A dx and no visible sigh of damage yet. Well....in the part he saw.
I know what MIGHT come down the road but now I feel like I'm the best mommy in the WORLD!
Tomorrow that will change for sure.
12-28-2012, 04:39 PM   #13
Tink572
Senior Member
 
Tink572's Avatar
 
Join Date: Mar 2012
Location: Alabama
That has to be some sort of record for quickest results ever!

Sorry about the diagnosis, but so glad you have some answers and can start treating your sweet little girl.

Good job to you for knowing something wasn't right, sticking with it, and pushing to get some answers. Hope EN works for her and can get her feeling better.
12-28-2012, 04:42 PM   #14
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Highly recommend you get a second opinion at cchmc.
No one told us to get a second opinion at first.
But here is why you need it .
If you schedule now they will not need to rescope.
Your Gi sounds very conservative which can be good but ...
He doesn't seem to want to still believe its Ibd so
For your sake and hers a second Gi stating this is Ibd would go a long way in getting her the proper care.
Also if its not truly Ibd then this will help.
Some gi's like to stay stagnant since they really don't want another child to have this horrible disease so will do everything to slowly rule out other causes .
A 2nd opinion speeds up this process since its independent .
They may have the ability there to do an mre without sedation making it a useful test with less risk.
A pillcam can't be done since she would not be able to swallow the pillcam . Placement would require more anethesisa so that could be the hestitation.
Ct requires radiation.
Second the elemental formula - elecare or neocate since it is the most broken down
Good luck
12-28-2012, 04:47 PM   #15
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I know Tink572!

I had just resolved myself to the fact that amybe we'll never find out. I was totally depressed.
Then I get the call with him on the other end telling me all this and all I was thinking is........hey you told me 7-10 days!
12-28-2012, 05:42 PM   #16
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
That was really quick on the biopsies. It's great that he's finally given you a diagnosis even if not definitive. You are a fab mom - after all this fighting on Grace's behalf, it's finally been justified. Glad he apologised!! Good luck with the EN - I truly hope it helps tons!
12-28-2012, 08:36 PM   #17
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
A question for y'all.

How long after scopes did it take for the kids to have normal BM's?

Grace is having diarrhea. Changed her undies three times today. Poor kid.
12-28-2012, 08:46 PM   #18
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
What did she eat afterwards? EJ has always been fairly cleaned-out by the preps so there's been no problems afterward. His poop was normal almost immediately after commencing Asacol which was prescribed the day of his first scopes. It was the first solid poop he'd had in 3 months.

Sorry and happy for you at the same time FW! At least you have a name for the devil now!!
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
12-28-2012, 09:00 PM   #19
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
I'm glad you finally got some answers! Always trust your gut
Devynn was pretty much cleaned out just from the prep of a scope, but she would think she had gas and let a bit go after a scope. I think it was better by the next day.
__________________
Samantha, AKA Devynn's mom


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
12-28-2012, 09:09 PM   #20
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
I am afraid to ask but did they stain the whatevers to test for ME?
__________________
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
12-28-2012, 09:14 PM   #21
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
DS was not normal afterwards but that was due to the rectal inflammation on him.
Since he didn't get normal until recently not a good example
.
12-28-2012, 09:15 PM   #22
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
CIC that staining process takes a long time so ......
12-28-2012, 09:19 PM   #23
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
You are SO luckyyyy they are diagnosing her and taking this seriously. Gracie had inflammation (with no damage) in the same exact spots and they called it "non-specific" with NO diagnosis. And while they did give us meds they stopped them short after a few months. It is CRAZY frustrating, so yay for you for not having an a$$hole doctor like ours.

It is amazing how varied the care can be...I am super glad for you even though I am sorry!!
__________________
Supermom to 2 girls: Little Girl (4) & Big Girl (7)

Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
Sulfasalazine, Miralax, Folic Acid, Zyrtec, inhalers
12-28-2012, 09:23 PM   #24
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
crohnsinct.........

That's the first thing you ask? Not even welcome to the club. Not even a happy your staying. Well I see how it is. You only miss me when you think I'm going to leave you. Typical women!

Ironically I was just thinking that. No he (GI) doesn't stain for ME. We would have to have that sent else where. I think Boston stains for that. However now that she has inflammation, I don't know if that goes beyond the microscopic level? Interesting thought. I'll have to ask the new GP.


Grace is having some bad knee pain and it's in her neck on the right side of her spine. I thought it was because of her cold but know that's gone but the neck pain has stayed.

Could the scope have "stirred" something up? The runs is new for her and now the joint pain flared back up. We'll see how tomorrow goes. At least we have a direction. Makes all the different.
12-28-2012, 09:25 PM   #25
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Welcome to club. Happy that you have a way forward.
__________________
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)
12-28-2012, 09:27 PM   #26
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
You are SO luckyyyy they are diagnosing her and taking this seriously. Gracie had inflammation (with no damage) in the same exact spots and they called it "non-specific" with NO diagnosis. And while they did give us meds they stopped them short after a few months. It is CRAZY frustrating, so yay for you for not having an a$$hole doctor like ours.

It is amazing how varied the care can be...I am super glad for you even though I am sorry!!

Momto2girls,
Don't give up! I did and know I feel guilty. Don't give up!!!
12-28-2012, 09:37 PM   #27
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
FW you did the best you could considering - how many docs were not thinking she had anything remotely close to Ibd .


Mom2girls-
Just keep pushing most of us here had too.
Take a break when needed regroup and push on if it doesn't seem right.

Biopsies will be unspecified inflammation unless they find a certain type of granuloma or ulceration etc pathologists don't like to label Ibd unless certain things are found .
Dusty's kid did not. Have biopsy results consistent with crohn's but clearly has crohn's.
It's just they need to find xyz then they put the label on.
12-29-2012, 12:28 AM   #28
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
I welcomed you on your other thread.

Awww... our kids are scope sisters. They both got scoped on the same day and both got our biopsy results the next day. Yay Michigan!!! At least they got something accomplished this time around at my hospital. Grrrr... big jerks.

Oh and they had EMU basketball players visiting yesterday and Rowan got to meet some very tall men she was amazed with their height being over 7 feet tall. Silly kid.

Nothing to add I know you'll figure it out. Smart Cookie!
12-29-2012, 02:57 AM   #29
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
glad tha t you finally have an answer, however obscure. are you doing an indwelling ng tube? also, there is gross (visual) and microscopic inflammation... I would get copies of both the scope report and the pathology report from the biopsies. sending my . love...<3
__________________
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
12-29-2012, 06:59 AM   #30
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:

Oh and they had EMU basketball players visiting yesterday and Rowan got to meet some very tall men she was amazed with their height being over 7 feet tall. Silly kid.

Mary how funny!
That reminds me of my son when he was 4. We had a singing quartet come to our church. One of the men was 7+ feet. My son started to wave his arm in a circle over his head. I wispered...son what are you doing? He said.....momma his a giant and I'm gonna stone him like David did.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Little Farm Girl and Colitis
Thread Tools


All times are GMT -5. The time now is 02:37 PM.
Copyright 2006-2017 Crohnsforum.com