• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Little Farm Girl and Colitis

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

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!
 

my little penguin

Moderator
Staff member
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
 
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
 
No, mlp he's not.:ack: I ask about the MRE but he said, right now it's not needed.
Maintenance meds????? No mention after talking about EN. :ack:
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!:biggrin: 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!:medal1:
 
Sorry to hear the news....:hug:

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

How is Grace ?
 
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?
 

Tesscorm

Moderator
Staff member
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...

:ghug: :ghug: :ghug:
 
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
 
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!:dance:
 
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.
 
Well at least dannysmom, we're in good company.:ysmile:

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!:biggrin:
Tomorrow that will change for sure.:ytongue:
 
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.
 

my little penguin

Moderator
Staff member
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
 
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:ymad: you told me 7-10 days!:rof:
 
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!
 
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.
 

Dexky

To save time...Ask Dusty!
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!!
 
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.
 

my little penguin

Moderator
Staff member
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
.
 
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!! :heart:
 
crohnsinct.........

That's the first thing you ask?:ywow: 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!:ytongue:

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.:wink:
 
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!! :heart:

Momto2girls,
Don't give up! I did and know I feel guilty. Don't give up!!!
 

my little penguin

Moderator
Staff member
FW you did the best you could considering - how many docs were not thinking she had anything remotely close to Ibd .
:hug:

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.
 
I welcomed you on your other thread. :ghug:

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!:highfive:
 
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
 
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!:D
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...:shifty:son what are you doing? He said....:voodoo:.momma his a giant and I'm gonna stone him like David did.:rof:
 

Dexky

To save time...Ask Dusty!
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.
What's silly about that?? I'm 48 and it's still pretty doggone rare to see 7+footers outside of an NBA arena:)
 

David

Co-Founder
Staff member
They're calling it colitis even though there is ileal involvement as well? Weird.

Can you please post a copy of the biopsy results? If you don't have it, get it. These are the kind of things you absolutely want a copy of. Sometimes a pathologist isn't as familiar with signs that hint towards or away from IBD as they should be and we have a couple people here that can review results for such indicators.

What were the "two other diseases" he mentioned?
 

David

Co-Founder
Staff member
Like someone else mentioned, are they scheduling her for a pill cam or MRE? That they found inflammation AND she has dark blood in her stool (which suggests the bleeding is much higher than a colonoscopy can reach) says they absolutely need to check higher up to see what's going on.
 
Sorry FW ......:ghug:

I know this has been a very long road. But I am glad you have some answers now and that the Dr.'s are looking into more answers for Grace.

Dr. K didn't order an MRE for about 2 weeks after Johnny's scope. We had many follow up conversations about treatment after our first conversation about the Prednisone. I am sure they are busy brainstorming about what they have found and best way to treat Grace.

I think the scope can "stir things up" it did for Johnny, at least as far as the tummy issues. I am not sure about the joint/neck pain.
 

my little penguin

Moderator
Staff member
Fwiw DS had his ct scan ordered during the same phone call about the biopsy results for Ibd dx.
In fact the Gi had us call right then to schedule and when the hospital wouldn't get us in for three weeks Gi took over and called back within an hour with a new date a few days from then .
So dx call to imaging was a few short period of time
 
David I don't have a copy yet but I will ask for one. Our appointment with Grace's new GP is the 11th. She on vacation. I know the GP's nurse told me yesterday she will seeking all information about her scopes and biopsies.

OK, now I've had time to think. keep in mind I was in shock when he called.

Also keep in mind he's from India with a heavy accent and a bad cold on top of it.

I know he said that infections can cause Colitis BUT...he also stated that Grace has suffered for way to long to have that be the main source. Also he knows she's been on Flagly with no affect. So he discredit it soon after he said it.

I started asking about the bleeding. The scope never showed scarring in the stomach. I said the blood was dark as was the stool that means small bowel. I asked about a MRE but he said he doesn't feel that's need yet.

The GI asked if we're coming in soon but I said the next apt. is in February.:ywow: So I assume he'll want to move that up? Who know maybe that's fine for him.

He stated the TI inflammation was moderate. I THINK he said he found inflammation also in the transverse colon. He never said anything about the rectum, even though theirs scarring already.

So here's what we know. their's inflammation at the microscopic level. The TI has the most. Rectum has scarring already. The GI is now concerned about her EIM's.

So here's my question for David or anyone.

WHY does Zantak seem to be working for a girl that has a no sings of inflammation or scarring in her stomach? Matter of fact I asked if we can up it again as her tummy pains seem to be increasing.
 

my little penguin

Moderator
Staff member
Feb is way too far out.
Ask for a sooner appt mon/ wed
Zantac can be treating underlying reflux or Ibd of the stomach.
She may need a ppi - something to discuss with your Gi.
DS has been at this for over a year and it wasn't until he was under control that we were able to move out scheduled appt passed 4-6 weeks.

Even then I was on the phone weekly or more with the Gi .
Still were seen in the office for emergency visits a lot in between.
DS is finally at 2-3 month check ups.:)
 

my little penguin

Moderator
Staff member
Meant to be clear the Zantac would treat the Ibd/ gastris ( mild )so no scarring since age has been on and off it for years.
Stomach pain could be due to inflammation In the small bowel not seen by the scope .
Hence the need for mre / pill cam
To determine how bad her disease is then plan the meds accordingly.

As an aside DS 's Gi told us it is common for children to have an EIM with Ibd however only kids with more severe disease do they tend to see more than one EIM in his experience.
So joint pain only ok but more than that indicates more investigation is needed to determine the extent of the disease.
Fix the gut inflammation and the EIM will go away as well.
Hugs
It's a lot to process at once .
We will give you a few days at least before you have to put on your "big girl panties"
Sulk at least until wed
With a warm bath cabana boy and some chocolate
Virtual pizza if necessary
 

Tesscorm

Moderator
Staff member
Just one note before I leave :)... If you start using the NG tube, Stephen does have heartburn if he doesn't take Nexium on the nights he uses the tube. This may be redundant as she's already on these meds but, keep in mind the tube keeps the 'flap' open that is usually closed between the stomach and esophagus and this allows a little bit of stomach fluid to seep up (this is probably a painfully 'layman's' description :redface: but it's how it was described to me :)). And, I would imagine this is even more of an issue when you have the formula laying down (as Stephen does).

Good luck!!!
 
Sorry to say it... but if it was mostly the TI and not as bad as the remainder of the colon it isn't UC. UC always always involves the rectum the only time it is spared is if enemas such as 5 Asa or steroids clears the area up. It starts in the rectum and continues effecting more and more continuously without being patchy or starting and stopping. Yes UC can have the TI involvement (pretty rare) but these are usually cases of severe disease like pancolitis. Rowan had very severe disease but never had TI involvement.

Hope they get you more dx soon.
 
Yes I agree. The Colitis have to be challenged IF that's what the GI sticks with.
The GI was clear though, he said he want to take his time and make SURE of the finial dx.

The problem I would have is....what is HIS time line. I mean the pains are in her neck now. Her rash is coming back and now the right side flank pain is picking up. His time better be some what fast timing. But again he was VERY concerned about her EIM's now. That's good.

Johnnysmom:ghug:
Dr. K brought up the meds first but I'm the one that said EEN. He explained that most parents have a hard time hearing the dx of colitis, so he tends to bring up the medicine route first because hearing liquid nutrition with a tube tends to freak most parents out even more. Did Johnny do EEN?

Tesscorm:eek:
I'm starting to get worried because last time she did the EEN, as you all remember, we ended up at the hospital because she bleed out. I think I'm going to ask for a better med than Zantak.

MLP:yrolleyes:
What is PPI? Would a PPI be better than Zantac?
:smile:Mlp don't worrie about me needing time to soke this in. Been there, done that, time to get things moving!:ymad:
 

my little penguin

Moderator
Staff member
Uc is continuous meaning if she has inflammation in her rectum ( ie scar tissue) then there would be continuos inflammation to her TI .
As was stated TI involvement in uc is rare.
Ppi - is stronger Prevacid is an example or nexium.
It is a proton pump inhibitor ( ppi)- stops acid production - nothing to wash up
Zantac is an acid reducer it changes the ph of the stomach so what washes up should not do as much damage

Go on to ccfa to find out the list of differences for uc vs crohn's at the basic level.
The only reason I can think if uc dx would be it is more common In those her age
And from what you said so far they did not take a lot of biopsies to determine if it was continuous in her colon.
Please send her records biopsies out .
It will take every bit of two months to get a review and at that point you may need it to push for real meds .

EEN wil induce remission in some but once she starts to eat it will all come back
Given her EIM and age she probably has severe disease
So you will be back to square one in 6 weeks .
Only needing pred this time to give med x time to work .
Not saying she does but she really needs someone who will believe what it is and not drag their feet.
Sometimes the extra eyes "help" give the local Gi the push they need to get things going
 
Ya, I need to call him and have a further talk. Now that I have my thoughts somewhat together I can start asking. So muppet , I'm going to steal your idea and just line list.
Y'all can add if I forget one.

1-Where was the inflammation again?
2-If it's patchy and in the TI why do you feel it's Colitis and not Crohns?
3-She needs a PPI.
4-Move up next visit.
5- Labs need to be done.
 
When he said colitis he might have meant Crohns Colitis.

Not trying to scare you but make sure she is on Florastor if taking a PPI the risk for c.diff re-infestation is higher in IBD and even higher with IBD/PPI involvement. I did a lot of research on this'd just recently. I put it in that c.diff thread I started and never finished. We used it for Rowan bc of the steroids messing up her belly. The good thing about them is they actually help heal things. But every good has a bad.
 

David

Co-Founder
Staff member
1-Where was the inflammation again?
2-If it's patchy and in the TI why do you feel it's Colitis and not Crohns?
3-She needs a PPI.
4-Move up next visit.
5- Labs need to be done.
1. "And was it acute or chronic? And can I have a copy of the biopsy report? My email address to send it to is..."

2. "Colitis" simply means inflammation of the colon. It can be acute or chronic and there are TONS of different causes. If there is inflammation of the ileum, it is, "Ileitis". That simply means inflammation of the ileum. It too can be chronic or acute and there are TONS of potential causes. IF Crohn's disease is the cause of the inflammation in the ileum and it's not present anywhere else, then it would be, "Crohn's Ileitis". If the Crohn's was in the ileum and colon, then it would be "Crohn's Ileocolitis". If it was just in the colon, it would be, "Crohn's Colitis".

Many causes of ileitis and colitis are self-limiting (go away on their own) and aren't that big of a deal. Heck, even the colonoscopy prep can cause "itis". Others are easily or somewhat easy to treat or manage once the cause is found. The intestinal itis's you REALLY don't want are Crohn's or Ulcerative.

3. Don't tell your doctor she needs a PPI. If you really want to bring up the PPI thing, something along the lines of, "Grace is on Zantac, do you think a PPI would suit her better?" would go over better. PPIs can lead to a whole host of problems on their own though, especially with prolonged use so you don't want her on it unless she really needs it.

4. Good.

5. What labs are you going to request?
 
Wow David we are thinking in rhythm? :mario2:

I actually feel like a smart cookie not as smart as you of course but another 10 years and just maybe I will be and administrator? ;)
 

David

Co-Founder
Staff member
just maybe I will be an administrator? ;)
You can have the job now if you like ;) I find myself dealing with the administrative side of the community MUCH MORE as we get bigger and prefer the research side and talking with all of you.
 
Many causes of ileitis and colitis are self-limiting (go away on their own) and aren't that big of a deal. Heck, even the colonoscopy prep can cause "itis". Others are easily or somewhat easy to treat or manage once the cause is found. The intestinal itis's you REALLY don't want are Crohn's or Ulcerative.
:eek2:
This statement David makes me think! She's had this for YEARS and it has yet to go away and is only getting worse.:confused2:

As far as labs, all of them! The new GP was less than happy with her Vit. D levels and I would think she would do all vit. levels. I think her B-12 (It was B something) was low but I need to check again.
I think her LDH differently needs to be monitored more.
 

David

Co-Founder
Staff member
As far as labs, all of them! The new GP was less than happy with her Vit. D levels and I would think she would do all vit. levels. I think her B-12 (It was B something) was low but I need to check again.
I think her LDH differently needs to be monitored more.
If I was a doctor and you called me on the phone and said, "We need her labs done" and I responded with, "Which ones?" and you said, "All of them" I would start to rub my temples and sigh. You don't want to be that person. Yes, you absolutely want to advocate for your daughter, but you need to be able to do so in an educated manner where you're working WITH your doctor rather than them ending up avoiding your phone calls. You want to request things and have your doctor say, "That's a good idea" or, "Why" and you be able to present hard data showcasing why it's a good idea.
 
I agree with David and each time I have asked for certain labs, I provided my reasoning(which I usually obtained from the forum, thanks guys!) and I have gotten each lab I requested. When I requested, vitamin D and B, the GI said I think that is a good idea and I'm going to add zinc and a couple of others.

I think I still get the temple rub with all my questions but at least he knows I'm fully engaged...ha!

Good luck with the appt.
 

my little penguin

Moderator
Staff member
Yep same here ....
Only asked for b12 - as in did he know if DS levels were normal which prompted
" I don't know but that would be a good idea to check "
All about the presentation and limit to those things you really want./need
 
You'd also be surprised with how much getting some of these vitamin deficiencies fixed can have a effect on the EIMs and the disease in general? b complex is so huge for everyone and Vit D we supplement hugely.
 

David

Co-Founder
Staff member
You'd also be surprised with how much getting some of these vitamin deficiencies fixed can have a effect on the EIMs and the disease in general? b complex is so huge for everyone and Vit D we supplement hugely.
Magnesium is the new flavor of the month. :D
 

my little penguin

Moderator
Staff member
One thing to take into acct when she is formula - her vitamin levels should go up since these are very easily absorbed from amino acid or peptide based formulas.
 
How often does labs get run on EEN?

Right now Grace has labs an average of every two months.

That's a good point MLP about vitimans in the EEN. I wouldn't want to to have to much of one vitamins or not enough of another.
 

DustyKat

Super Moderator
WOW! I have missed so much. :yfaint:

First up, it is so good to hear that you are finally starting to get answers for your little girl Farmwife. :hug:

Now I have read over the thread but I take no responsibility for repeating what has already been said or for being a total dork and being way off the mark. I simply can't retain all that has been said. :lol: So I will just pull out what stood out for me. :)

Moderate inflammation in the ileum: This is something I would pursue as a priority. It does not match the diagnosis of Colitis and so needs clarification. I personally believe that inflammation located here does warrant imaging simply because no one can confidently say there is no extension beyond what the scope can reach.

Pain: Pain is not normal state for the body. Having said that it can be both a blessing and burden when it comes to a diagnosis. For Matt it was a blessing. His pain was very specific in both location and presentation and was one of the main factors that led to his very quick diagnosis on the back of extremely mild symptoms. For Sarah though it was a burden and in her case one of the main barriers that led to her not receiving a diagnosis earlier.
I don't know if you have ever read Sarah's story Farmwife but her pain was a red herring for so long. Sarah's disease was located in her terminal ileum but for nigh on all of the 18 months she was undiagnosed it presented as stomach pain and as a result IBD wasn't on the radar. I must state here though that Sarah did not have bleeding and although she tended to constipation it was not to the degree that Grace suffers with. No doubt these lack of symptoms also added to the burden of non diagnosis.

You have received fab advice about EEN and supplementation so I have nothing to add there. The one thing I will chime in with though is the need to obtain copies of all test results. They will be invaluable to you as you navigate the system and it also allows to you keep on top of things without the need to rely on the information of others, as in medical professionals.

Good luck!

Dusty. xxx
 
Thanks DustyKat

Can someone help me understand microscopic inflammation vs. visual inflammation with a scope.
I'm not asking about the part we can't see. This has to do with the part that was seen with the scopes.


The reason I ask is, and I'm NOT trying to make lite of Grace's situation, but looking at her pictures of the upper and lower track they look normal. The GI was sooooo sure nothing was wrong when we left the hospital. Now we know different.
BUT........in my mind since it's still microscopic inflammation, that's better then visual inflammation. Less damage right?
 

my little penguin

Moderator
Staff member
Not necessarily....
Visually you can look very bad but only have acute changes in the cells meaning the damage being done on the cellular level was only recent and not ongoing.
You can conversely have a good looking scope meaning she wasn't actively flaring everywhere but have "marked" chronic inflammation -
Meaning just like when someone is 9 months pregnant you are going to know "marked"
Or you can look horrid visually and also be horrid microscopically .

To really figure out what is going on and severity etc you need to talk to your Gi and get copies of the pathology report.

Guessing will get you no where .
We assumed DS was mild since we also left the hospital with all is normal kid.

However before we got into see our Gi we took DS to his 2nd opinion gi( it had been scheduled long before the scope)

This Gi explained even though visually DS looked good
His system was really a mess and had been for sometime given the changes they saw on the biopsies . Since those changes take a long time to occur .
 
Farmwife,

We did not do EEN and it was not presented to us. But we flew to Florida the day after the scope and we were suppose to discuss treatment options the next week. Johnny started bleeding the next day and I called and spoke to Dr. K. He wanted him started on Prednisone that day, so because things got moved up we never had a chance to have that conversation.

Also Johnny had involvement in his esophagus, stomach, small bowel and large so I think the Prednisone was a more effective choice for his disease.

Would Grace's EIM's be better treated with Prednisone as oppose to EEN?
 
Well.........Johnnysmom
I know he brought that up first. However, when I brought up EEN, he was all for it.
I'm calling on Monday. I want to set up a conference call with him and make sure my hubby is around.
 

my little penguin

Moderator
Staff member
Regardless of drugs ( pred or EEN)
Once the inflammation is reduced then the EIM will go away.
EEN works in 80% of kids and is as effective as pred. The first time.
It is the second time that the numbers favor pred more since EEN becomes less effective with time and disease .
There are more than a few papers in the pediatric research section at the top of the forum stating the studies and effectiveness of EEN
 

my little penguin

Moderator
Staff member
These pediatric trials, along with a pediatric meta-analysis (38) consisting of 5 randomized controlled trials involving 147 children, which determined that EEN and corticosteroids were equally effective (pooled relative risk 0.95, 95% CI 0.67% – 1.34%), may suggest that the benefits of EEN differ in children from adults with a more favorable effect in children. Additionally, a meta-analysis of pooled data from 4 randomized controlled trials in 144 children found no significant difference in remission rates at 8 to 10 weeks between EEN and corticosteroids (relative risk 0.97, 95% CI 0.7% – 1.4%, random effects model) (39). Day et al (32) cited intolerance to the formula and inadequate volume as possible reasons why some patients did not achieve remission.
From:
http://www.naspghan.org/user-assets/Documents/pdf/PositionPapers/Use_of_Enteral_Nutrition_for_the_Control_of.29[1].pdf


nfluence of Disease Location
Whether EEN provides a better outcome in colonic or small bowel disease is unclear, although some evidence tends to favor EEN in small bowel disease rather than in active colonic disease (55). Afzal et al (55) have shown that isolated colonic disease does not respond to EEN as well as ileocolonic or ileal disease (11/12 patients with ileal disease achieved remission, 32/39 with ileoco- lonic disease achieved remission, 7/ 14 with isolated colonic disease achieved remission, P 1⁄4 0.021). Other investigators have not shown support for this (10/13 patients with isolated small bowel disease achieved remission at 4 weeks compared with 15/19 patients with isolated colonic disease, P 1⁄4 0.88) (56). The meta-analysis by Zachos et al (36) was unable to make definitive conclusions on this aspect because of a lack of power. Until the importance of disease location on response to EEN is definitively delineated, it would seem reasonable to consider its use for all patients with CD

Two Canadian groups have considered the first 2 approaches. A report from the Hospital for Sick Children, Toronto, described 28 children provided with elemental formula delivered overnight by an NG tube while consuming a normal diet in the daytime compared with 19 children in whom EEN successfully induced remission but who opted to discontinue nocturnal elemental feedings (14). At 12 months, 43% (12/28) of patients receiving nocturnal elemental feedings had relapsed compared with 79% (15/19) who had dis- continued supplemental elemental feedings (P < 0.02). Investi- gators from Quebec used an alternate approach in another cohort of 8 children with CD and growth failure (15). These children received periods of NG elemental formula (70% of energy require- ments) for 1 of 4 months during a 1-year period. Significant height and weight gains, decrease in the Crohn’s Disease Activity Index, and decrease in prednisone use were noted
 
If Rowan had Crohns and not UC I would have totally did the NG tube feedings. Very proud that your willing to do it. I remember seeing izzi when she had hers and thinking that poor baby but if I knew then what I know now. I now think it was awesome! :medal1:
 
FW,
Wow I am away for a day and so much has happened. I can't believe they got you the results that fast! That is unbelieveable. Did he say if these are the preliminary readings or the final pathology report? I am glad you finally have some answers. I am so glad he is allowing you to try EN.
 
Sorry I got cut off in the middle of my thoughts Sophia came out of bed for the tenth time tonight. Anyway I am so happy you finally have some answers. I think the others have given very good advice. Please post the pathology results when you get them so we can see what the findings were and maybe some of the experts on here can give some advice. I think MLPs advice about getting a second opinion still is a good one.
Anyway welcome to the club! Sorry you have to join it but glad you are getting some answers finally!
 
I would hope our options for treatment were not limited because our Dr. thought we would "freak out" or not want to bother. These decisions are excruciatingly difficult and we all make the best choice we can for our children. In the end it is very personal and very complicated.

I know you will figure this all out and make the best decision for your Grace.:heart:
 

my little penguin

Moderator
Staff member
I would hope our options for treatment were not limited because our Dr. thought we would "freak out" or not want to bother.

I know for a fact our GI did not mention EEN to us because of this - and He didn't think people would "stick" to it. That they would give in if it got too hard or their child put up a fuss.:(
WE had to ask about it. ( found out about EEN from here:ybiggrin:).
Our GI had never had anyone actually do it although he knew about it.
The only reason he let us try it was he knew we were very strict with DS's foods due to severe food allergies and asked us to treat EEN the same way.

Judging by what I have seen on here and other places I feel this is a valid concern- most parents do not want to battle with their kids anymore than necessary when they are sick and most state- they wont drink it or its too hard.
not judging because if it was my oldest - I would have been in the same boat and would never have suggested it. Not a battle I would have wanted to fight.:ack:

DS has been restricted on foods since birth so he never has the same food as everyone else- he knows others will be eating x dessert and he can't have it.
he also knows that sometimes we have to eat or drink things we don't like when a doc says so..THis is his "norm" so going to school and not eating when all the other kids were was hard for him but not so far out of the norm KWIM.

I am not saying its right to not offer parents the choice but sometimes docs go with what they know will work.
 
It is pretty dumb in fact. It wasn't an option for us but I would take that everyday instead of having to do some of the crap I've done now. I would defiantly say that using adult sized Suppositorys and enemas was the worse treatments I ever had to do. Though recently I almost had to do an at home fecal transplant, thank god she came up negative for the c.diff. I would have totally did it and was on board but my god can I quit playing with the poop please.

Sorry I digress:eek:utahere:
 
C was finally able to get three supplement shakes down today with minimal gagging and fuss and I was on the verge of climbing on the rooftop and announcing it! It has been a battle and wears us both down quickly. I don't think there will be a time when he doesn't gag or fight to keep it down, the texture creates this immediate reaction and he dreads it each time. MLP, I think our GI thought the same way although C was already on pred when we first saw him so it was a non-issue then I suppose.
 
We also had to ask our doctor for it. He also told us he did not mention it because kids don't want to do it and parents don't want to fight them for it. I told our doctor that I thought all options should be given to parents not just the easy ones. I also told him that from what I have read and heard in many other countries this is the first line of treatment used. I really think it is backwards that doctors here do not want to consider what may be one of the safest treatments with the least side effects there is. If it wasn't for this fantastic forum I never would have even heard of EN and wouldn't have known to give it a try.
 
FW: O.K. sorry but totally confused. Doc called you with Colitis and said he wanted her on meds but agreed to EN with a tube but isn't seeing you until February? When are you suposed to go in and learn how to insert said tube and work the equipment etc? I just assumed you were going back there for that and that was starting on Monday. lease don't tell me this doc is slipping back to his old ways.

And as for me not welcoming you...I did that way back when you joined and have been tryng to get rid of you ever since:ytongue: Literally, nothing would make me happier than for you to find out that all this was some very innocent easy to fix thing and to have you just lurk on Much Ado just for fun!

I am learning so much reading this thread. Seems like I have still been operating in my dx fog.

David: why is long term use of PPI's troubling? O has been on Prevacid for a year now. I actually didn't know why she was on it. I asked about 4 months in and he said because there was inflammation in her stomach but he never told me that at dx. He also said there was rectal inflammation but at dx said all the Crohns was in here colon which has always made me wonder if she really has UC and before you all ask no I do not know if granuloma's were present on the biopsy...guess I will be asking in April huh? Along with hy wasn't there imaging of her small bowel?

Magnesium rocks! Fixes skin issues too!
 

AZMOM

Moderator
Glad things are moving for your baby. You're getting some great advice. So I'll just say "ditto".

J.
 
Crohnsintinct
Long term use of PPIs can cause osteoporosis. I asked Caitlyn's doctor about it as she has been on it a long time and she was going to switch her to Zantac it is safer with less side effects overall.
 
As for EN...same here..learned about it here! When asked doc why he didn't bring it up...same thing..no one wants to do it or stick it out but he added that he is tired of watching children go another two to three weeks un treated while the parents and kids "try" EN only to abandon it. So he goes drugs first. Not saying he is right but I guess I understand why they present the drugs first. In our case O was already on Remicade so I am sure that is why he was so willing but if she hadn't been on anything I doubt he would have been so agreeable.

He also said she was one of only three patients to actually make it through the whole 8 weeks.
 
Kimmidwife: Oh yay! So between the Prednisone, Remicade and Prevacid I should get the kid a walker and bubble suit because she is a broken hip waiting to happen:wink: They did a bone density test on her in the hospital and doc explained they would do them periodically to monitor so I am not really scared. She broke her finger back in April and they were askig all kinds of questions. I told them they couldn't really blame Remicade or Prednisone because they girl is a clutz. Seriously can fall out of a chair sh is already sitting in.
 

my little penguin

Moderator
Staff member
Tums
TUMS
TUMS
when I had to be dairy free for DS while breastfeeding-
lots of tums easiest form of calcium

not too worried about DS- peptamen has some crazy calcium lock thing put into it for crohn's kids
who knows if it works...but at least he is getting extra calcium
 
Tums here too, GP reccomended it for daily calcium intake if C wasn't getting it through dairy. And for me too, since I'm not crazy about dairy.
 

David

Co-Founder
Staff member
David: why is long term use of PPI's troubling? O has been on Prevacid for a year now. I actually didn't know why she was on it.

Magnesium rocks! Fixes skin issues too!
That magnesium that rocks? PPIs can lead to low levels of it. Considering most with Crohn's are already low, that's no good. Same with vitamin B12, iron, calcium, and it can cause issues with a whole host of other stuff. We're meant to have lots of acid in our stomach.

I think sometimes PPIs are called for but we need to be aware of the side effects and get off of them if/when possible (and be aware of the potential for the rebound effect).
 
David we found it hard to kick the PPIs. It took a while and lots of bananas. Works for me bc bananas reduce acid and makes for better poops. Then we titrated down the bananas too. She would get terrible stomach aches before dinner without the PPIs and she didn't need them, they were only prescribed for the steroids. I started using calcium when she need more help then and it really helped a lot. Sometimes they just prescribe pills when they think we are too lazy to do the nutritionally sound thing. My biggest problem with western medicine is the fact that many doctor do not care about nutrition and are just all about the pharmaceuticals. SOME DOCTORS, NOT ALL DOCTORS. Of course.
 

DustyKat

Super Moderator
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.
Sorry, just picked up on this notification.

mlp is spot on. :) Matt's biopsies, from both scopes and surgery, did not support a diagnosis of Crohn's. An absence of granuloma's mean't all the boxes could not be ticked and so the pathologist was not happy to label it as Crohn's. The GI and surgeon were both adamant that it was though and so did not require the supporting evidence. I think we were fortunate in three areas: Sarah's history, Matt's presentation and doctors that were experienced and confident in what they saw.

Dusty. xxx
 
And as for me not welcoming you...I did that way back when you joined and have been trying to get rid of you ever since:ytongue:

QUOTE]


crohnsinct :kissgrits:

The GI is sending a home heath care nurse to come to the farm and put the tube in and teach me how to do the feedings. He wanted this to happen Friday:ywow: but it was 4 already and it's new years week-end so he wants it to happen on Monday or Tuesday. However, I think since New years is on Monday, I don't think anything will happen until Tuesday or Wednesday.

Wow, I go to bed early and y'all have discussions.
Johnnysmom I don't think him not bring up EEN right away was a bad thing. The fact the Devos even does this and is happy it's done is a good thing. Right!:D Let's face it. Meds will be in her future at some point. Let's avoid it as long as possible.:wink:
 
Make sure you can get the supplements before getting the tube put in. Most of the peptide based ones have to be ordered but our office didn't know this because they hadn't ever done at home ng feedings for Crohns before.
Also, we weren't given fantastic teaching. Be sure to ask about tube placement (how to do it, how often to do it), the rate of infusion, and flushing the tube.
GOod luck, mama! Hoping it does the trick!
A side note on fecal transplants (Mary mentioned them)-Izz's doc is planning on doing his first soon for a recurrent c diff infection. I can't wait to hear how it goes!!
 

my little penguin

Moderator
Staff member
Yeah that^^^^
It took two days to get peptamen jr since your doc has to order them from the durable medical supply place then they have to get it approved through your insurance .
Then you have to have the DME deliver it which takes about 24 hours sometimes less more if that company doesn't carry the kind you/doc wants
Also choosing a formula try to get one that is amino acid or peptide based but that she may drink orally so you can do half dose later without a tube if needed.
Once it's approved through the inssurrance it tends to stay approved.
Plus she may want to drink some during the day which is faster than the pump.
High pump rate = vomiting
But for whatever reason gulping 8 oz down by mouth in 5 seconds does not.
Make sure they give you a back pack so she can be mobile.
You may want to look for a bucket or small wagon or bag on wheels so she can pull it behind her so she is not stuck to one place.

Tubey 101 is helpful on KFA
As well as the section for no foods or few foods for kids

Here are the links
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251787386

They talk about feed rates
Bleeping
 
I know I am a total nag. Per redundancy protocol... Did you ever talk to them about Childrens Special Health Care??? It will cover all that your regular insurance won't cover even you gas back and forth to her appointment.

I am beings so pushy bc Rowans Peptamin costs are very expensive without it. $170.00 for 24 cans and 3 a day so... $630.00 for one months supply. Our yearly CSHC fee is like $400.00 and you can pay monthly. Totally is worth it. Then all the other meds that might come on board. Medical supplies, gas and co-pays.
 

David

Co-Founder
Staff member
David we found it hard to kick the PPIs. It took a while and lots of bananas. Works for me bc bananas reduce acid and makes for better poops. Then we titrated down the bananas too. She would get terrible stomach aches before dinner without the PPIs and she didn't need them, they were only prescribed for the steroids. I started using calcium when she need more help then and it really helped a lot.
Great tip on the bananas! Thank you!

Regarding the calcium, you used that to help with the acid or because you felt she was low in it?
 

Crohn's Mom

Moderator
Regarding the calcium, you used that to help with the acid or because you felt she was low in it
I don't know about Mary, but Gab takes Calcium twice a day, per her GI's recommendation, because she's on 40mg of Omeprazole, twice per day, and he's concerned with osteoporosis.
 

David

Co-Founder
Staff member
I don't know about Mary, but Gab takes Calcium twice a day, per her GI's recommendation, because she's on 40mg of Omeprazole, twice per day, and he's concerned with osteoporosis.
I'd talk to your doctor about magnesium as well since PPIs AND Crohn's can lead to deficiency. While magnesium deficiency causes a whole host of problems, if he's worried about osteoporosis:
Several human studies have suggested that magnesium supplementation may improve bone mineral density [4]. In a study of older adults, a greater magnesium intake maintained bone mineral density to a greater degree than a lower magnesium intake [56]. Diets that provide recommended levels of magnesium are beneficial for bone health, but further investigation on the role of magnesium in bone metabolism and osteoporosis is needed.
Source

Here's some additional very interesting reading from an MD that is highly pertinent, especially since she's supplementing calcium.
 
David,
Have you found an easy to take magnesium supplement? I was looking for one for me and they were all horse pills which I couldn't swallow.
 
Top