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Back to Colitis-Farmife

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. :ywow:
I was SHOCKED AND CONFUSSED AND CALLED THE GI!!! :ymad:
The GI said that until he sees damage (visual) on her scopes he is calling it Colitis, AGAIN!:yfaint:
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.:ybiggrin:

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......................:ack:
 
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my little penguin

Moderator
Staff member
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
 

my little penguin

Moderator
Staff member
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.
 
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!!!!!!!!!
 
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.
 
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!
 
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.
 
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.
 
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.
 
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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.:soledance: So all we have to do is get the stool, joint pain, paleness, and slight tiredness under control and she'll be perfect.:wink:

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.:ybiggrin:
 
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. :ywow:
 

Tesscorm

Moderator
Staff member
It seems it alls works at a snail's pace (at least, from a parent's perspective!) :ymad:

But it does seem you're seeing some improvement..., hopefully, you'll begin to see more and more! :ghug:
 
Just a sad update. :confused2:

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!:yfaint:

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.

:hug: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.

:thumright:On a good note. I ordered a Buzzy Bee (well Grace's is the Lady bug). I hope it arrives before Easter.
 

Tesscorm

Moderator
Staff member
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!!! :ghug:
 
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.
 

my little penguin

Moderator
Staff member
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
 
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.
 

Tesscorm

Moderator
Staff member
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???
 
So sorry to hear this!! Sending lots of hugs and hopes they manage to find something that will really help Grace soon!
 
GI upped her pred to 20 for two more weeks.
We have an appointment with her GP on Tuesday. We will be talking about LDN and other ideas.
This is nuts. I'm still upset about my talk with the GI.
I need to calm down first before typing.

:rosette1:Yes Angie. Your both beautiful. Just know my girl looks nothing like me. That's a good thing!:ybiggrin:
 
Ahhh, FW, I'm sorry. Love to hate pred. Wishing Grace well, the sweet girl. :heart:
TY all. I didn't take the pics...I hire them done as it is the only opportunity for me to get in the photos as a single mom lol. ;)
 

CarolinAlaska

Holding It Together
I'm sorry Grace is doing poorly. The poor dear. I hope you get some time to snuggle and love on her and just do nothing this weekend but pamper yourselves.
 
Thanks everyone.

Grace had her higher dose and within one hour she was jumping off the bed and chasing her brother. My poor son doesn't know what to think. One days he has to be quiet because she's sick and the next day she chasing him and yelling I want my wand back (which he was using as a play hammer).

We went to the mall and she made it through half way before daddy had to pick her up.

So, I'm glad it's working that quick but my prayer is it will put her into remission.

MLP have you heard of the six food elimination diet. That's one of the things the GI said she will be doing. I'll go on KFA and check it out also.


So everyone have a good week-end. I hope my Sunday will be queit. I'll check in soon.:hug:
 

my little penguin

Moderator
Staff member
:ybatty:
Six food elimination diet is standard and really top eight free
No
1.) milk
2.) eggs
3.) wheat
4.) soy ( check on oil and lecithin )
5.) peanuts and tree nuts ( really two but they combine as one)
6.) shellfish and fish ( again two but see above)

Enjoy LIfe foods will be an easy go to for you they are top eight free
http://www.enjoylifefoods.com/mobile/

They are pricey though but bring four a box of cereal bars or bagels should las a while ;)

Pm me if you want any of the go to foods we used for DS
We were free of many things over the years .

Are you avoiding her igE positives as well?
 
Sounds like you've had a rough few days.... Glad Grace is feeling a little better with the higher Pred, hope she continues this way!

Definitely hoping for a lovely peaceful Sunday xx

:ghug:
 

CarolinAlaska

Holding It Together
Sounds challenging to do the elimination diet, but I'm sure you're willing to do anything to get your daughter's health back. I'm glad the pred is kicking in. I'm hoping and praying for remission for her too. Have a sweet, spring Sunday!
 

AZMOM

Moderator
MLP & FW - We are going to go the elimination route with EoE boy however, GI suggested we do a food allergy patch test to try and narrow things down. Has Grace's GI mentioned that?

Now........my son is TOTALLY different in that he isn't as ill as Grace. Just wondering if you were presented that option.

J.
 
Update:

Tomorrow is the day for the GP visit.
Lots to talk about.

Grace has slept though both nights. YA!:dance:
Her appetite has returned and she drank 4 juice boxes in her own. YA!!!!
:dance:

BUT.....:voodoo:
Her knee pains were so bad last night at church, she sat and asked to be picked up.
I wonder if she does has some type of arthritis or something else going on?
I haven't read where this is normal for EGID ( eos disease).
:eek2:Wouldn't pred have helped the knee and joint pains by now?
 

CarolinAlaska

Holding It Together
Yea for drinking the juice boxes... every little bit of progress is always encouraging. I hope the GI doesn't throw you another change in diagnosis!
 
Hope the GP visit goes well! Not sure about the joints, I would have thought the pred would help. Maybe it's being "used up" sorting the tummy issues?
 
Meant with new GP for Grace.
She think a transfer needs to happen.
She said she will call the GI at Devos and
explain why and get the transfer moving along.
I'm terrified now. :eek2:
:ybatty:Now is not the time to have a lack of in care for Grace.
I asked her not to do anything until after the the appointment on the 20th.
I don't know what's right to do.:(
I hate:voodoo: that feeling when you think you made a mistake, ya know.
 

AZMOM

Moderator
I don't know what the rationale for waiting would be since she's not improving! I think since you trust the GP, follow her advice.

J.
 
We're transferring tomorrow. The GP said she would call herself and do it.

I just wish I knew how long it will take? She's on EEN and Pred and still had tummy pains and knee pains today. I still hope the pred will kick in. Does this all makes sense with microscopic damage??
 
So sorry Grace is still having so much trouble. I agree, make the move now. No sense waiting...it's been such a long road already.
 

CarolinAlaska

Holding It Together
You can't see everything that happens with biopsy results, and those are probably based on the pathologists experience and expert opinion. No, much doesn't make sense with IBD, but the 20th is a long time to wait when one's daughter is suffering so...

What is Devos?
 
Hope the transfer goes through quickly!! Sorry we've never used Pred, so can't give any advice with that. Sending lots of healing thoughts!
 
Location
,
Hope they get her in soon.

It's strange how the pred isn't helping much....every time my daughters been on it its worked within a week.
 
What is Devos?
Devos is the hospital her GI is at.:hug:


Now I'm not saying the pred isn't working at all. I think it is helping but last time it seemed to "ware off". It's to early to say if the higher dose will do the same thing. All I know is her leg pain is staying and she had abdominal pains yesterday. Still she's a bit better. I guess the week-end will tell.
Grace's GP gave me some supplement for her to help her body. Their totally allergy free. Well except one has shellfish but that's not a trigger for Grace so far.

Now for the BIG news........

:dance:Grace grew a half an inch, :dance:
:dance:She had another good night. She is still drinking her juice boxes.:dance:
 

Catherine

Moderator
Get what you saying but don't want to have keep upping the pred. I think the gp wants the 2nd opinion before a decision has to be made on the pred.

Great news about the inch.
 

my little penguin

Moderator
Staff member
Be careful with supplements - she should NOT be on any
Supplements unless her Gi has approved period.
Only pred eo28 splash and water
You have no way of knowing if shellfish is a trigger unless you have scoped while on it for a food trial .
Not mention the fact you current Gi wanted her formula only and then top 6 free which includes shellfish.

Not to be tough but the waters are already muddied enough until you switch to a new Gi you need to follow the current gi's recommendations about food this includes all drugs and supplements .

As far as microscopic - your Gi only took 6 samples so you have no way of know.
She has had no imaging done .
DS had over 18 samples taken. His was microscopic and still had issues while on pred .
Remicade was the only thing that eventually helped .

I know you are doing your best
Good luck
 
So you are getting a new GI? I hope that helps!! Poor thing! Did you ever have the MRE? I hope the GI will do that b/c I keep hearing everyone here say it is the only way to know what's going on in the small intestines, and that may very well be where all of the problems are? I agree with not taking the supplement. Gracie has a severe tree nut allergy & egg allergy, and has never tested pos. to shellfish but our allergist still insists she doesn't eat shellfish.

I do not think microscopic necessarily means it isn't bad, I thought it just meant that she's small so they need a microscope to see the damage. I think microscopic in an adult is different than in a child.

So awesome about an whole inch!! Amazing!! Thinking of you guys -- hang in there, mama!
 
Yes, as far as I know it will be a new GI. She (GP) also will get her into the EGID program or at least they will review her case and see if it is EGID's.


Is a side effect of pred leg pains????? Have any of your children had this? The GI never said it could be.

Off for the day. It's beautiful and sunny here. It almost makes me think spring is coming. I can't wait.
 
That's great that Grace is doing a bit better and managing her juice boxes. I seem to remember reading a post a while ago with someone getting leg pains from pred.
 
Dare I say it....................

I think she's turned the corner.

She seems better, she's hungry, her pains have subsided a bit, she's sleeping all night long.

:dance:One thing I keep forgetting to add is she isn't having pee-pee accidents.
If you remember she would have accidents all over and each time she pee-peed it was a shock to her. I told many docs about this but they just blew me off. Now she has complete control and even has gotten up at night to go. YA!!!! See we know our kids.:dance:

Off for a few days. I should be hearing from the GP today about the transfer.
 
Wow have we talked about how Gracie has potty accidents too? Hers are from bladder spasms caused by the pressure of her constipated colon. She has had two this week. And yes she still needs pull ups at night. Anyway soooo glad you are seeing improvement. Hooray!!
 
Location
NY
So happy to hear she was feeling a bit better. I hope it continues and good luck with the transfer. I understand how this can be so overwelming with different opinions, etc. Hugs!
 

Tesscorm

Moderator
Staff member
Glad to hear she's doing better! :banana: I hope it just keeps getting better and better!!! :D
 
Farmwife,
When I was very symptomatic, I developed some mild urinary incontinence--I even did the intake visit with the specialist's nurse to see what could be done about it--this was during the seven months that I waited to see the GI. Once I went in to remission--it stopped. I think that the inflammation can cause extra pressure on the bladder which caused the incontinence.

I would track this symptom, because it may be a marker for her as to how severe the inflammation is.
 
Thanks happy. I always knew it but those docs wouldn't listen. I'll start keeping track when it happens (which I hope it won't).

:angry-banghead: First road block. Stupid insurance.:voodoo:

I'm calling Devos tomorrow and asking to get an appointment next week. It's a long shot since her apt. is the 20th but I'll try. I do think the GI at Devos will be OK over seeing the transfer. I mean she's not normal and Cincinnati specializes in this. Even if they say wait and see at least we know they all agree.:hug:
 
Ugh insurances! They just don't get it. These jerks sitting in their offices making these life decisions which they probably know very little about. It is not right!
 
:dance::dance:Grace can EAT!!!!!!!:dance::dance:

:dance::dance:Well only 10% which = about 150 cals, but hey...I'll take it.:dance:

Now she can't have:
dairy, :voodoo:wheat, :voodoo:eggs, :voodoo:nut, shell fish,:voodoo: corn, :voodoo:soy or :voodoo: beef.

I will be starting with BANANAS! YA! I so happy about bananas. :dance:


Ok, now I'm really off for awhile. I just had to share the news.:hug:
 
MMMMM Banana! They will be the best tasting bananas ever. And totally appropriate on the dancing banana. I think I'll have to add a few myself
:dance::dance::dance:
 

my little penguin

Moderator
Staff member
Not to pop bubbles but why is your Gi not scoping to determine if she "cleared"' EOS on the formula only + pred???
Especially since she is still having symptoms .
How is he going to determine what her EOS triggers are if you don't know how bad she was ( number of EOS ) before starting food?
You won't even know if she can clear on top eight free since she may just need pred longer etc.....

I know you are happy about the food but without a second scope she could just have to go back to all formula again when she might not need to because there was no scope now .

I just don't want your family or her to have to through any extra stuff kwim.

Good luck with the bananas .

Banana chips if you have a dehydrator.
 
Grace is doing a lot better.
The joints are still a bother but do seem better.
She just hit the 40lb mark.
She's even kind of chunchy but chunky at her at is just soooo cute.
The GP wants her weight on the high side just in case she hits a rough patch she has a little to lose.
Sounds good to me. We also know this is some pred weight.
As she steps down we'll see if she loses.

:dance:She ate the banana (small and very ripe) and I swear that girl said yumm with EVER little bite. So cute.:hug:

:yoshijumpjoy:So as you all can tell I am one HAPPY FARMWIFE!:dance: Today we're going to go look for Grace's first bike. Spring is coming and all I want to do is think SPRING!:dance:
Also, next month is my son's b-day. He'll be 6 and wants a DS. I'll be scoping out the price and those also.
:shifty-t:So If you hear a story about a women passing out:yfaint: in a store in front of the DS players well.................

Grace has gotten the "moon face". She has such a round face any way, she looks like the world's cutest chipmunk.:rof:

Oh, to MLP and all your qeustions.....:) Have a good week-end.
 
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AZMOM

Moderator
So glad she feels better. Like MLP though, Im surprised tere wasn't a second scope for the eosiniophilic disease. No other way to measure eosinophils...... Trust me, I've asked!

Hope things continue to go well.

J.
 
The GI feels scoping isn't necessary right now. He wants to start her on 6mp but we're not until we get a second opinion. He (GI) says their still a chance the eos are from IBD. However, he admits that given her symptoms since birth, that it matches EGID. Sadly I agree. However, I want more answers before we start meds. I'm only adding foods that I know are "safe". So bananas are pretty much it. All other foods, I have no idea.
I think it would be wise to get more answers from the GI and a second opinion.
 
Just catching up...boy, have you girls been through it!! (((HUGS)))
Hoping the insurance hurdle is easily overcome.
FWIW, we didn't have any pain associated with Pred, but it lost effectiveness over time (it only worked for less than a year for us).
Sending love...
 
Wow, sounds like you guys have had a bit of a time of it too!!

Glad you are getting second opinions though and really glad about the bananas! :dance:

Bless her I bet she was so excited.

Good luck! xx :hug:
 

CarolinAlaska

Holding It Together
So glad Miss Grace got to eat bananas! My dd doesn't like bananas, but after 4.5 weeks of no food, bananas might be welcome...
 
Glad things are a bit better! You know once you start with the DS it's a slippery slope to all things electronic :lol:. Now the worst thing about going away these days is remembering all the different chargers! :ycool:
 
:angry-banghead:Bad, bad, bad
:angry-banghead:Moving backward, not forward

:( Very bad pains going poo
:( Bad acid reflux during the pushing (flushing red)
:(Have to pull the bananas

:voodoo:Calling Doctor tomorrow.
 

CarolinAlaska

Holding It Together
I'm sorry that did not work out. Stupid bananas! She'll be getting her new ng tube tomorrow, won't she. I hope that goes well. <<<hugs>>>

PS What does the doc say about her black and bloody NG tubes?
 
I've been reading the diet forums a lot and the most striking thing I notice is how individual trigger foods are. Most people seem to list bananas as a food they find easy to eat, so seems like a logical one to try first to me too.

But there is an old thread I turned up with a search started by someone who has severe reactions to bananas and several other people mention they have problems with them too, so Grace isn't alone in reacting to them. Some people say they can eat them cooked but not raw due to starch levels in raw ones, (I'm not suggesting you try them again soon but be might keeping in mind for future) http://www.crohnsforum.com/showthread.php?t=2598

I hope Grace recovers quickly from her banana experience.
 
Thanks Maree, very interesting.:hug:

The nutrientist at the hospital has said stop the bananas :(and is asking the GI if Grace should stop food intro for awhile.

Here's my question of the day......
What causes acid reflux with a bowel movement?

During the very painful bowel movement, Grace got an attack of acid reflux (I assume that is what it was). She turned bright red and start gasping for air. I gave her a drink and calmed her (and myself) down. Through out the couple hours she had the attack 3-4 times. I finally gave her a suppository when we got home and she went poo. Then no more attacks. Also her stool still had undigested bananas. Crazy, I made sure the bananas were very ripe and she chewed them very well.
Oh and happy remember how I said Grace has had no accidents. We last night she pee-pee again in the bed.:( I hope she's not going to flare again.


:dance:The good news is Grace is having a good morning. Always look on the bright side!:kiss:
 
What makes you think it was acid reflux and not a reaction due to the EGID or EOE or whatever the other dx is? What did she say to make you think acid reflux? I think bananas, which are high in potassium neutralize the acidity in the stomach which makes it more alkaline.

It seems it is even a natural treatment for acid reflux, queen gothel mentioned something about it. May want ask her.
 
I am so not informad on the EoE, but I know bananas are constipating. So for someone who is proned to constipation I would think it might not be a good food to start with? It'll really bind her up, which is what it sounds like was happening. Hugs!!
 
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