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Crohn's Disease Forum » Parents of Kids with IBD » Back to Colitis-Farmife


 
02-23-2013, 07:13 PM   #1
Farmwife
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Back to Colitis- Little Farm Girl

In my desperate attempt to journal the path to my daughter’s diagnosis,
I found myself making way to many new threads.
Please believe me that this annoys me to no end.

On Thursday we got a letter for her special insurance with a different dx on it.
It said Eosinophilic Gasstroent.
I was SHOCKED AND CONFUSSED AND CALLED THE GI!!!
The GI said that until he sees damage (visual) on her scopes he is calling it Colitis, AGAIN!
He does feel she “coming into” IBD but doesn’t want to dx her with something wrong and at a young age.
The GI reassured us that it will be treated the SAME WAY and with the SAME DRUGS as IBD which is why he and the staff were using the term IBD already. The next couple scopes will tell the whole story, he hopes.

First, I’m OK with this, kind of.

Second, I might be trying to buy time before the inevitable.

He ended the call with saying it’s Colitis for sure and Eosinophilic Disease.


My hubby and I have a lot of feelings on this but right now we just have to get Grace feeling better.

So thanks everyone for hanging in there with us. I wish I could say this ride is almost done but......................
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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

Last edited by Farmwife; 04-08-2013 at 09:03 AM.
02-23-2013, 07:24 PM   #2
my little penguin
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Just shaking my head at your Gi
Sheesh
What about the biopsies ?
And the inflammation on the biopsies found in her stomach and TI
I am so sorry - the treatment for eosinophilic colitis ( EC) is NOT the same as crohn's.
Head wall
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02-23-2013, 07:40 PM   #3
my little penguin
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Oh btw we had three separate gi's and two pathologist
From two different hospitals declare DS had crohn's based on microscopic damage alone.
Add to the fact your Gi has not done any imaging ( mre, ct , or pill cam)
Even with only microscopic damage our Gi was very upset with the imaging sept when he was first dx since they were going to make us wait two months to have an mre.
After he talked to them - DS had imaging in a week.
02-23-2013, 08:05 PM   #4
Farmwife
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My first though after hearing from the GI was...mlp is going to flip.


BUT, let me state fanatically (sp?) that I understood what the GI was saying and agree.

I however do believe we need and MRE or pill camera and she WILL be getting these before 6MP touches my girls' lips! I promise you that!!!!!!!!!
02-23-2013, 08:17 PM   #5
Jmrogers4
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Think you have an answer but it's not an answer. Is that what it is? I feel like it's going in circles, but as long as she if feeling better.
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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
02-23-2013, 08:22 PM   #6
Farmwife
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I feel like I've been chasing my tail since I gave birth to her.

He feels she's "coming into" IBD but calls it Colitis for know.

Jacqui dear why do you have...David Testing Support Group at the bottom of your Sig?
I'm out of the loop, so I have to pry to get answers!
02-23-2013, 08:25 PM   #7
Farmwife
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Never mind I looked. Cool. David do have to be fancy dancy Monitor to join your group?????
02-23-2013, 08:31 PM   #8
Jmrogers4
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Does it give you an option to subscribe here http://www.crohnsforum.com/showthread.php?t=47891
02-23-2013, 08:41 PM   #9
Farmwife
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Yes, I just joined. I really don't know what I joined but as long as he doesn't ask me to sacrifice chickens and drink their blood, I'm ok with it.
02-23-2013, 11:10 PM   #10
DanceMom
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We are basically in the same boat and our GI said something almost identical. Like you, I totally understand not wanting to call it IBD if they aren't 100% sure that's what it is. I was also told, "We will treat it as if it is IBD and our goal is to get her healthy again." Call it what you want, our kids deserve to feel good.
02-24-2013, 07:48 AM   #11
Farmwife
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It's good to know we're not alone DanceMom.

Eos disease (EGE or EC) is soooooo similar in many ways to IBD that I want to make sure which one this is. If she has both than fine but I want to make sure!!!! My few spare minutes have been trying to research the path reports of microscopic inflammation and damage in both diseases to see if it all fits.
No matter what I just want her to start to heal. The GI, I feel is trying to do this.

Last edited by Farmwife; 02-24-2013 at 08:05 AM.
02-24-2013, 04:20 PM   #12
Farmwife
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I have a question.

Grace for the last couple days has been having lose stools. Today she been to the lou about three times (which for her is a lot) with the lose stools with lots of gas.

Is it possible that her intestines have less inflammation in the track, there by letting the stool go through faster?

The good news is her tummy pains are much better. So all we have to do is get the stool, joint pain, paleness, and slight tiredness under control and she'll be perfect.

Off for a couple days. Another busy week awaits. I'll try to check in a night. But if my sentences are more incoherent than normal please remember I should be sleeping.
02-24-2013, 04:33 PM   #13
Jmrogers4
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Makes sense to me, less inflammation, liquid in liquid out, wouldn't hurt to keep track of it though.
02-24-2013, 05:09 PM   #14
my little penguin
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Just track it and let Gi know
02-25-2013, 10:12 AM   #15
QueenGothel
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I know it is frustrating you to not know what your treating, until you get more imagining and or biopsies unfortunately this puts you in limbo. I know your happy to be going somewhere and her case being as complex as it is, fact is it is the GIs fault that he didn't take more biopsies during the scope in my opinion. Hard to be thorough with the treatment if he wasn't thorough with the study/scope to get a dx. Sorry you are so frustrated.
02-25-2013, 10:42 AM   #16
Tesscorm
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It seems it alls works at a snail's pace (at least, from a parent's perspective!)

But it does seem you're seeing some improvement..., hopefully, you'll begin to see more and more!
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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
02-26-2013, 07:29 PM   #17
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02-28-2013, 07:35 PM   #18
Farmwife
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Just a sad update.

Grace the last two or three days is back to sleeping a lot.
Not drinking much. Joint pains flaring again. Abdominal/belly pains.
A strange bruise on her lower leg that is staying the same and not fading away.
Constipation has come back. She did go today with black specks in the stool.
To top this off I think her n-g tube is starting to bother her sinus cavities.
When the nurse put the tube in and checked her tube it was filled with blood.
It did clear but the nurse said keep an eye on it because some can't have the tube for long periods of time. GREAT!

My hubby and I are just in disbelief this is happening.

My poor hubby keeps saying I thought EEN was suppose to help, I thought Pred was suppose to help, I thought...........
Of course I have no good answers for him. I think the hardest part was seeing her get well and then seeing her fade again. It brakes a mother's heart.

I know it will get better. It's just the roller coaster I thought was going to slow down once we started treatment.

YES, I have a call into the GI. Waiting to hear something tomorrow morning.

On a good note. I ordered a Buzzy Bee (well Grace's is the Lady bug). I hope it arrives before Easter.
02-28-2013, 07:43 PM   #19
my little penguin
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Hugs
So btdt on pred and EEN helping.
It does help but sometimes its not enough or needs more time.
At least for DS it was.
02-28-2013, 07:49 PM   #20
Farmwife
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MLP- what in Sam Hill does btdt.
Ya know texing is killing the English language.
02-28-2013, 07:50 PM   #21
Tesscorm
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Aww, I'm so sorry

I hope the GI has some answers for you... I have no idea what to suggest??? I suppose even with EEN and Pred, recovery isn't a straight upward trip... I hope it's just a blip but I would think after all this time on EEN you'd be seeing consistent improvement!

What do you mean her tube was filled with blood? That doesn't make sense to me. If she was 'extracting' from the tube, the fluid that usually comes out is stomach fluid... that would imply that the blood was in her stomach. If the nurse had just put in the tube, the hole at the end of the tube is so small, I can't imagine much blood could have gotten in there just from being inserted through her sinuses... I think it is more likely when she extracted, she extracted stomach fluid which included blood. MLP - help me out here... do you agree??

I know nothing about Eosinophilic Disease or Eosinophilic Colitis so I'm not sure how they would affect the symptoms you're describing.

One other thing, the nurse... is she trained in IBD? If not, remember she has only overall nursing training without a specialty in IBD - I know our home nurse knows only the very basics about crohns. She checks that Stephen's feeling well, doesn't look pale, was inserting the tube correctly, etc. but when I've asked her specific questions about his TI, or narrowing or impact of remicade on inflammation, etc., she just doesn't know...

I hope her feeling badly is just a fluke!!!
02-28-2013, 07:56 PM   #22
Farmwife
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Thanks Tess. The nurse thought the blood in her stomach drained from her sinuses when she put the tube in. No she's not an IBD nurse. She did check 3 times her stomach content before she left to make sure their was no blood in it. I've also checked today. BUT the night before the nurse came over Grace had abdominal pains. So I wondered about it. She's on a PPI of over a week. I was hoping it would be working but the pains she's having today came from her belly button area.
02-28-2013, 07:59 PM   #23
my little penguin
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Btdt
Been there done that
I am on my phone so ...

As far as blood I would think the same thing stomach fluid mixed with blood .
Unless there was blood from her nose on the outside of the tube
02-28-2013, 08:11 PM   #24
Farmwife
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No, the tube had been out for 5 days. So this was a new tube. She did have a cold but was over it when the tube was put in.
02-28-2013, 09:07 PM   #25
Tesscorm
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Does make sense that the blood could have gotten into her stomach during the insertion, I think. Nosebleeds do cause a lot of blood... I would have thought, though, if the tube caused her sinuses to bleed, some of it would have come out her nose BUT if the bleeding was further back/down, perhaps it just drained downwards and not outwards. My friend's daughter used the tube (left it in) for a few weeks, it irritated her nose and caused it to bleed but it bled outwards... but, again, could depend on where the irritation happens in her sinuses. I would keep an eye on it but if you're checking her stomach contents regularly, you would see it...

What colour was the last tube you removed? You've mentioned before that the tube was turning black and I wondered if it was blood???
02-28-2013, 09:36 PM   #26
Jmrogers4
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Sorry she is feeling poor again. No answers for you just lots of support and prayers
03-01-2013, 03:24 AM   #27
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So sorry to hear this!! Sending lots of hugs and hopes they manage to find something that will really help Grace soon!
03-01-2013, 06:27 AM   #28
Momto2girls
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I'm so sorry. Gosh this sounds so hard and scary. I sure hope they find what works for her and soon!!
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03-01-2013, 07:21 AM   #29
dannysmom
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Thanks for the update ... I do hope things improve for Grace!!!
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03-01-2013, 07:39 AM   #30
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Oh farm wife am so sorry to read your update, it's like one step forward and 2 steps back all the time with our kids. Hope she is feeling better today
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