# Update on V, case in point for silent disease progression



## imaboveitall

Hello all.
My target audience for this thread is the parents of kids whose docs say they are in remission based upon labs, and those whose docs refuse to scope or do a capsule endoscopy.
This disease fairly OFTEN does NOT reflect in labs, and less often but common enough not in clinical presentation either.
Dusty's kids are the most dramatic example of this I've read about, but V is now another example of how insidious it can be.

In short, V had her annual cap endo and the results show disease advancement throughout the small bowel, of a stricturing type.
She's been on prednisone since April.
She looks like a healthy horse and eats/excretes like one.

Her lactoferrin, formerly always very high, has been VERY LOW and last one done (this past Mon) hit an all time low of 36.
Her labs ARE NORMAL.
Repeat:labs are normal.
CRP, leukocytes, erythrocytes, platelets, metabolic panel, endocrine panel, liver function, NORMAL. Iron is LOW, but hgb...you got it, NORMAL.
B12 NORMAL. Vit D...excellent.

Plan is yet unknown, this is very new news, The Saint emailed me last night.
Remicade is a likely next step.

Lesson: this would NOT NOT NOT have been known without a CAP ENDO. Period.
He says she is headed for surgery if he cannot stop the stricturing via drugs.


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## Farmwife

Hugs to you both.


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## crohnsinct

Oh my gosh Julie I was just thinking of you today and wondering how things are going.  Sorry to hear this news.  I hope the Remicade Kicks Crohns' Ass!


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## Tesscorm

Sorry to hear Julie!!!  I hope you and the Saint are able to come up with a plan quickly!!!  Maybe...sort of... in the same boat - Stephen's labs are coming back really good but need to confirm most recent MRI to determine new treatment.

When is your apptmt with the saint? :ghug:  :ghug:


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## imaboveitall

Cinct, I am so scared of Remicade.
I know your girl is on it...how do you deal with the fear??
We upped her pred dramatically, but he says this is a direct result of undertreatment and I know he is right. :frown:

Tess, dear, her next f/u is Jan 22nd.
In four+ years she has never had an acute visit, just f/u.
He and I manage her case via email, I guess because of my background.
So far Remicade is the tentative plan.

DO CAP ENDOS if small bowel involvement is suspected. That is the message I want to impart.


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## crohnsinct

Well I wasn't given much of a choice and to be honest seeing her in the shape she was in at dx was way more frightening than the 4 in 10,000 chance she has of getting some rare kind of cancer.  I was concerned about suppressed immune system issues but honestly she is the healthiest person in the house.  Was exposed to the flu over Thanksgiving, a stomach bug and a few sick kids at a youth group overnight.  Nothing touches this kid.  Probably because of the ramped up good nutrition and obsessive hand washing, but still.  

Sure there are other risks ie: liver etc and she is way high on that list given my mom's auto immune hep and her dad's fatty liver but they watch these kids like hawks. 

I say it all the time that seeing her out there energetic and happy again is worth it but understand that for you it is so much harder to make this decision because your girl looks so great.  Get the MRE then go on Remi then get a repeat MRE and if it is working it will be your new best friend! If not kick it to the curb.  

Good Luck!


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## imaboveitall

I know I have no choice really, either at this stage.
"Once they start cutting they have to keep cutting" is what I've heard re: surgery for this disease.
I fear short bowel syndrome as well as drug ramifications.

This just sucks ass in the most major way...to look at her she looks like the healthiest thing ever.
I posted hoping others will realize this can be a SILENT disease.
This is NOT what we expected to hear.


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## Devynnsmom

I'm so sorry  
Every time I take Devynn to her GI they say everything looks normal (blood work etc) but she has stomache pains almost daily. She is going for an MRE tomorrow and has FINALLY been transferred to the IBD team.


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## imaboveitall

DMom, YES, please insist on further diagnostics as Violet's case is NOT RARE.
When I read of Dusty's kids' cases I was amazed at how silent disease progression can be. The normal labs...WTeffingF?

Makes zero sense to me, and I am a scientist...how can labs not reflect all this internal damage...how?


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## Farmwife

imaboveitall said:


> Makes zero sense to me, and I am a scientist...how can labs not reflect all this internal damage...how?




Once someone figures that out let me know!:frown:

BTW, how is V with all this?


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## imaboveitall

FW, I know...it is a head banging against wall thing.
How can the small bowel be a freaking MESS and her have NORMAL labs?

She is such a coper, she just makes dry witty comments and moves along.
She said she will handle surgery if it comes, "like a boss". :medal1:
And will take a tablet to the Remicade infusions to keep from being bored.
She is far and away a more noble, more stable, more fine human being than I am.


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## Tesscorm

Julie, I am so with you on EVERY level!!!  These drugs scare me and undertreatment scares me! :ymad:  This disease really makes you feel that you are backed into a corner with NO way out!  I think of one treatment and I think another treatment and every thought I have, comes back with more side effects, more risks!

When you have a chance, read through Stephen's update (just so I don't have to repeat it all )...  we're in a similar situation.  His new GI is also suggesting remicade (or humira), Stephen's blood results are the best they've been in a year and a half?!?!?  WTH???  Mind you, the remicade recommendation was before blood results and a recent MRE so, who knows what will come from our apptmt next week.

But, as you're saying...  it can be such a silent disease, I'm so afraid to let things worsen and know that Stephen will pay the consequences of my decision!!

What does the Saint say about metho or azathioprine?

But, your comment that surgery will likely lead to more surgery is not always the case. :ghug:  Dusty's daughter had surgery years ago and has been in remission since then (same as her son, although his surgery was more recent).  Obviously not saying repeated surgery won't happen but, I've also read of lots of members who have come on saying they had surgery 10+ years ago and only now have been having issues.  Even if V had surgery now, if it could get her into remission for years and years - who knows what treatments will be available in years and years?!!??  But, in any case, we're not at 'surgery' stage yet... 

:ghug:


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## Devynnsmom

I agree! I have asked for more tests and they look at me like I actually ENJOY seeing my child have these rotten tests. Of course I hate it! But I want her to feel better. Hoping the MRE will give us some answers. But if not, atleast we are now switched from her GI ( who I thought was IBD) to the IBD team. I will be so happy to be away from her GI and especially the GI's nurse. The nurse talks to me like I am a complete idiot. She actually told me when we spoke about having Devynn on a milk free diet "You can't do this half assed, you have to do it properly" I was floored. I did exactly what her pediatrician told me to do. The GI NEVER once mentioned her going milk free. We did 5 weeks of no milk, no milk products, reading every label and avoiding milk, milk products, whey, and cassein.


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## imaboveitall

Hell to the yeah, Tess. My point has always been...cut the damned area OUT.
Dusty's kids' cases REALLY made me think that even more, as have "old school" cases, years ago the treatment was prednisone and surgery, and MANY pts got relief for 10+ years and had mild or no return of disease. This I got from my doc pals, all old school guys my age and older and one has an uncle who is a GI aged like...80 now and retired of course but this info came down from him too.

However, they won't do sx unless reaallly needed, and of course drugs will come first, so again, NO CHOICE and for us controlling types, this is the worst place to be.
No one resisted drugs harder than I have, you know the story, and if I am using them it really is the end of the line here.
SBS is no joke either, and if her disease is now beyond the TI, surgery wouldn't fix things anyway.
I will read Stephen's update for sure, I so hope he can maintain longer on just formula, I keep telling myself that at least she went three years drug free and four years without scary drugs and at almost 15, getting the drugs is better than getting them at age 10, and the longer one can delay them the better, as long as there is no progression.
Progression must be determined by hard data such as scopes/imaging, NOT labs dammit as some docs seem to treat by labs. How stupid.

My God. Dmom...screw that.
The best line I came up with was when a nurse asked if V always used a seatbelt in the car...I said, "not when I'm so drunk that I need her to steer".
She was 11 at the time. :ysmile:


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## Clash

Oh no, Julie so sorry to hear about the inflammation! So glad you get the pill cam yearly! I hope the remicade does the job! Just wanted to send support and hugs your way!


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## Tesscorm

imaboveitall said:


> The best line I came up with was when a nurse asked if V always used a seatbelt in the car...I said, "not when I'm so drunk that I need her to steer".
> She was 11 at the time. :ysmile:


:rof: :rof:


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## imaboveitall

Thanks Clash, so talk Remicade to me...make me love it...tell me it's the best thing that happened to your boy...


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## Farmwife

"She was 11 at the time"

Well hot digging dog, she could have been driving our tractors......minus the alcohol.

How do you think we got that hole on the other side of the barn?
 Stupid Jim Bob thinking it was a drive through. KID'S DON'T DRINK AND DRIVE!!! JK!:ytongue:


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## QueenGothel

Sorry Julie, just a big ol cyber hug fom me.:ghug:


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## Clash

I will say that I used to think about C being on Remicade alot. I did tons of research and questioned everything but when he was on the big guns and his FC test level came back at 1200 I was done with all the thinking. I was on board to upping the dose, moving the dosing schedule up and after meeting the GI about it, adding methotrexate.

I did have the benefit of seeing an outwardly, extremely sick kid which may have made the Remicade decision much easier. But the difference it made for him during loading doses was miraculous. I think at that time it was kicking some serious CD ass. So maybe since V is feeling fine and that is not indicative of what it going on inside, you won't see that switch flip like I did but I have to believe she will be getting some serious benefit.

I know this sounds flippant but we truly don't really think twice about the infusions any more, other than how much longer till the next one or I hope he makes it symptom free to the next one. I hope Remicade kicks butt for V too but we aren't married to the drug if it stops working even with the add of MTX I'll be as CIC said, kicking it too the curb!

I'm sending hugs and support your way.


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## Sascot

Sorry to hear about the inflammation.  From everything I've read, Remicade seems to work wonders for alot of kids!  I have to say, reading your post put my mind slightly more at ease about giving my son 6mp - I have been fighting it since he is really well in himself and all labs normal (although they usually are).  This disease surely sucks!  Definately backs all us mom's into a corner where neither choice is any good. 
Sounds like V is dealing with it all really well though and I'm sure if she does have to go onto Remicade, it will only do good things!


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## QueenGothel

You told me this before and I am telling you now.

When they work, these "scary" drugs start to look more like baskets of kittens.  

I really hope you see a vast improvement with the Remicade.


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## izzi'smom

Sending loads of support your way, J...was hoping things were so well we wouldn't see you here for a while 
Remi has real risks...but it can also have dramatic benefits. You know as well as I do these drugs can be scary. But our GI tells me all of the time about these short bowel kids...I'm gonna go out on a limb and say that'd be worse.
Hoping the decision comes as easily as it can to you. (((HUGS))) :heart:


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## my little penguin

:ghug:
So sorry to hear.
DS is on remicade as well.
Miracle drug for him.
All of his labs were normal , imaging normal .
Only his scope showed disease progression to the rectum and that his TI was still inflamed despite doing 6-mp for 8 months, normal labs and a round of pred plus EN.
We tried Mtx first since per Gi his labs, fecal caloprotectin , images were normal .
A Rheumo got involved because DS started having signs of vasculitis in his feet and legs as well as his other Gi symptoms which we were told could be Ibs like( aka they didn't need to treat)
Once it became apparent that the only way to keep the vasculitis away was through high dose pred ( low did not work) and that Mtx was not working.
Rheumo and Gi agreed remicade was the only thing left since the vasculitis was too scary.
Even took DS to cchmc to confirm.
The difference in how he functions now on remicade is very dramatic it took three induction infusions to get there and we pray it keeps working.
The Gi and Rheumo assume there was a lot going on in his small bowel since he originally has inflammation show up on the scope fro. The esophagus to the ceacum . Our insurance will not cover a pill cam at all so we get to decide next year if we want to pay to use that to monitor .

Honestly the known risks right now without the remicade are much scarier than the " this might happen"
But keep in mind my kiddo has life threatening food allergies so just the a t of eating anything has a risk of death daily.
Safety measures are in place but always a risk.
We were more afraid of anaphylaxis to the drug during the infusion than the actual long term outcomes .


Btw did she also have imaging recently??
Did the strictures show up there ???

Hugs again 
Never an easy place


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## Patricia56

I'm sorry to hear your news. It hurts I know.

My son had extensive stricturing at the time he went on Humira. It wasn't clear how much was inflammation or scar tissue. 

My son's recent MRE showed ZERO strictures. I could not believe it. I nearly cried. 

That was the result of 2 1/2 years of treatment with Humira plus 6-MP/MTX and continuing on MTX for another 2 years beyond stopping the Humira.

If I needed proof that using the meds had been the right choice - that was it.

That and one look at the broad shouldered, swaggering, almost 5'9", has-to-shave-every-other-day-or-he's-got-a-beard, basso voiced guy who is now inhabiting the room where my son used to sleep.

And he's not even 17.

I'm pretty sure we wouldn't be here without those meds.

I'm grateful.

My advice is to make peace with the need for meds instead of drawing it out and risking MUCH worse damage to your child's health from uncontrolled Crohn's.

And my son is another one who's labs are normal or near normal. The leading indicator for him is ferritin. When that starts to drop I know he is falling out of remission. He recently had his first small flare since he went into remission several years ago. I knew it was happening before he had any symptoms because his ferritin dropped 20 points to barely within normal range.

So I agree that the disease can be silent. 

I don't agree with annual pill cams. There is a significant risk of them getting stuck and then requiring emergency surgery to remove them. Especially with strictures. I suspect that this risk is far greater than the risks associated with Remicade and certainly with doing an MRE. Now that MRE is available I think this is the best choice for reqular monitoring.

None of these are perfect. They all have advantages and disadvantages.

I think what''s most important is to try to get your child into remission and figure out what are the clues - obvious or subtle - that signal a loss of remission and having a plan for responding.

Possible responses include EN to calm things down temporarily and then a return to the regular meds regimen, increase in med dose temporarily or permanently, switch of meds, addition of meds, surgery in combo with any of the above.


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## Mom2oneboy

Juuuulie :bigwave:,

I've missed you around here!!!  So sorry to hear about V's tests results.  Another gut punch for sure!  I am very happy to hear that V is feeling well.  She deserves that after not feeling well for so long.  Love her attititude of dealing with things like "a boss".

S started Remi in August and is doing very well on it.  When his doctor first mentioned it to me I cried.  I never expected we would be pulling out the big guns so quickly.  By the time his first infusion appt. rolled around, I was ready.  He had been having blood in his stool since March!  I knew we had to do something.  He got immediate relief from the first infusion.  The other day he told me, "sometimes I forget I have Crohn's" which is music to any mother's ears.  I'm hopeful that we are on our way to full remission but it's too soon to tell.

I have moments where I entertain the "what if" scenerios but I try not to stay there too long.  It could drive a person crazy!  We're making the best decisions for our kids with the knowledge that we have, ya know.  I pray A LOT!

Hugs to you, my friend :hug:!


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## Tenacity

Sorry to hear the surprising bad result from the test

I am a mother of a child who has had Crohns for the past 16 years.  During these years we have faced just about every complication you can think of, and I have researched IBD extensively.  

Your concern about Remicade is understandable.  However, I really want to somehow alleviate your fears and make you feel better about it, in order for your daughter to avoid at all cost, any permanent damage to her small bowel. The small intestine is a vital organ necessary to sustain life.

My son was the 1st pedriatric patient in the world to test drive Remicade.  A difficult decision at the time, but he was severely ill with major complications surviving on TPN and getting sicker by the day.  Trying to make you feel any better, I want you to know that he has come off and gone back on Remicade for 14 years now, without any complication or ill effect causing any further illness.

Research has shown that the "top down" approach using the strongest meds first, has longer remission rates.  I know how scary it is to put your children on these meds.  I remember back in 1997 when they prescribed 6MP for the 1st time.  It freaked me out!  But, it is a drug that has been around for decades, and has never caused any harm to my son over the years.

You said that your daugher has been on Prednisone since April?  What dose is she on right now?

I am so sorry that you are having to make this decision.  I too have a 14 year old daughter.  She was recently put through a series of tests for Crohns, and missed 2 days of school last week due to tummy troubles...  

PS - My little penguim - If the Remicade, 6MP, EN and other treatments have helped but you still see disease progression, have you ever considered running LDN concurrently with the Remicade to see if it works for DS?  The dosage is so low that it is one of the most "harmless" medical treatments out there for Crohns.  Also, is DS drinking the Peptamen orally or via NG tube?


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## Tink572

On the flip side....When your child is having absolutely NO symptoms, no diarrhea, no pain, nothing but lack of growth, but the labs indicate there is a problem, trust the labs even when the doctor says "no pain, no problem."  

My son's only symptom for about 3 years after diagnosis was lack of growth.  However, he had a steadily rising SED rate.  His GI at the time didn't want to treat him since he was not having typical Crohn's-related symptoms/pain.  Had I not insisted on going to an endocrinologist about his growth, my son would have been so much worse off.  The endocrinologist knew it wasn't under control and suggested another GI doc.  The new GI doc ordered scopes and found 11 cm of stricturing in the terminal ileum. 

He was started on Remicade to see if it could correct the stricturing.  It didn't correct it and he required surgery a little less than a year after starting Remicade, but the Remicade did keep the stricturing from spreading beyond the original 11 cm.

I was terrified of him starting Remicade, but now I wouldn't want to take him off of it.  I like Patricia's advice of "make peace with the meds."  Once I was comfortable with the thought of Remicade, it made moving on with treatment much easier.


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## imaboveitall

I'm gonna cry for real, so many awesome replies :ghug:

Mary, ha, yes, baskets of kittens indeed. I recall telling you that :heart:

VEERRY interesting to hear how many of you have normal or near normal labs.
And MLP, your boy's imaging was also normal, wow...just like Dusty's daughter. WTH.
If not for the pilcam, perhaps V's would also be and we still would not know of the maelstrom within. :voodoo::voodoo::voodoo: (stabbing RULES)

Patricia, I read another reply of yours in another thread and you write so informatively, and with experience, thanks for replying.
She had the cap endo, no further imaging this year. It was done last year for the first time and shall be done yearly hence.
Her being so nutritionally sound, well developed and well grown, (due I am sure to formula feeds) is for sure a factor in hesitation to use drugs. At dx, when she was almost dead, formula feeds proved to be enough to fix her up.
Not anymore :frown:
Ah and I insisted on a patency capsule prior to the cap endo; no risk of the pillcam getting stuck then. She was her GI's first pt to use the patency cap, (last year) and the nurse said they would be using them on all pts from then on.

Tink, absolutely, presence of growth delay is a hallmark of Crohn's. How odd that in some cases labs are off, but no symptoms, other cases, labs normal, no symptoms, still others, symptoms present but good labs...God.

I absolutely feel better hearing how well the scary drugs are working for your kids. Illogical but true. The panic subsided more as I read. Thanks ALL.

MLP I too am worried about anaphylaxis as V has animal dander allergy, pretty severe and I have already asked the Saint if this will increase the likelihood of allergic reaction, due to the animal component in Remicade.


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## my little penguin

Rast test for mouse protein.
Good indicator of allergen in remicade


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## imaboveitall

She reacts to guinea pigs, so I bet she shall to mouse.
He hasn't answered that question yet. Will see if he mentions doing a RAST for mouse, if not, I shall.


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## Tenacity

Julie - what dose of Prednisone has your daughter been on since April?


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## imaboveitall

If you read my earlier posts, it'll make more sense to you, as she started on a dose pack, had IMMEDIATE response (six hours, first day) and then to 30mg, then dropped all the way down to 15mg/5mg alternate days before this cap endo nightmare. But she has borderline hypocortisolism so that was why the great and fast response to pred. Meanwhile all was raging internally...can't say the Saint didn't warn me :yfrown:
So now she's on 40mg/day.
The Saint said he's calling in an antibiotic, didn't say which one, will discuss more in later correspondence, so now I have no idea what he's thinking.


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## Tenacity

Apologies I did not have time to read through all your old posts from April to find the dose of prednisone.  Just trying to help you.


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## imaboveitall

Oh no, Tenacity, I didn't mean it THAT way, I meant, it may not add up without the whole history.
Her med hx is weird, her case has some other odd features, like hypocortisolism, dysautonomia, that without the old info, it'd just seem strange.


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## Tenacity

No wonder the Prednisone made her feel better if she had hypocortisolism in addition to the Crohns.

There are so many advances being made researching various treatments for IBD.  It is a very exciting time in medicine no doubt - especially with the stem cell treatments they are researching.  

Out of interest - have any of you heard any data/information about the treatment of Crohns with IVIG?  It is something that I plan to look into as soon as I can find the time.


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## imaboveitall

The Saint has a pt (19 y/o boy I think) who had a stem cell transplant at Duke for "the most severe case of Crohn's" he'd ever seen in his practice.
I have no idea how the kid turned out.
IVIG is a new one on me, (for IBD) but I'd wager the Saint would know.
He has used: GCSF, thalidomide, naltrexone, worms and fecal transplant. All with minimal success, he said.


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## Tenacity

Sounds like the Saint is my kinda doc - thinks outside the box

I'm surprised he had minimal success with Naltrexone.  It is a wonder drug for some, and does nothing for others.  Perhaps because there are many different illnesses all put under the umbrella of Crohns - who knows.

I have a lot of experience in the stem cell transplant for crohns field, and the results that it yielded.  Interesting research to follow.


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## DustyKat

Oh no Julie...:hug::hug::hug:...when I saw this title my heart skipped a beat. 

I am so very sorry to hear that is happening to V,  , what a shock it must to you. But V's response doesn't surprise me...these kids are just so resilient and matter of fact! Bless 'em.  

My introduction to Crohn's was much like crohnsinct's...hard, fast and unforgiving. I have often said that although the drugs used to treat this disease freak the bejesus old of me I grabbed them with both hands after Sarah's surgery. It still breaks my heart to think of what she went through and it is being faced with those thoughts and fears that pulls these impossible decisions into the realm of the possible. 

As you know surgery has been kind to my children.  In so many ways I wish they had never required it but I can't fault the outcome. When Sarah was my only child with Crohn's I looked to the hope that a lady once gave me when she told me that her sister's story was just like Sarah's, emergency surgery and all...her sister had surgery at 14 also and is now in her early fifties and the disease has never returned. Now that Matt has also Crohn's I don't feel that I could be quite so lucky! 

This may well not apply to V but this article re: surgery v's pharmacotherapy is interesting...

http://www.crohnsforum.com/showthread.php?p=497151#post497151

I discussed with the GI a long time ago my concerns of Sarah requiring surgery at such young age and the chances of her requiring further surgical intervention. His response was that in this day and age there is every likelihood that this is the one and only surgery she will ever require due to the medications that are now available and this is how I view things with my two. For each day, month, year they are remission it is a day closer to newer treatments and hopefully a cure. 

I hope you are able to find the right path for V hun and the Crohn's is obliterated! 

Thinking of you both and sending loads and loads and loads of love, luck and healing thoughts your way. :heart: 

Dusty. xxx


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## Catherine

Hi julie

Were are in the same boat, normal labs, clinical remission and mri with both improving and worse disease.  See the surgeon today.

Wishing v all the best.


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## imaboveitall

Hey Dusty, yeah, you know I am all about the sx, but now that disease has taken over more small bowel than just her TI, it's no longer as relevant. By the way, she was neg for NOD-2.

Catherine, no way...why surgeon consult?? Is she strictured?

I just picked up a month's supply of Flagyl the Saint called in without an explanation (yet, am awaiting more email).
Dusty...any ideas why? He def doesn't think she has c-diff. Why is Flagyl used for IBD without infection present?

I asked him about RAST for mouse allergy, he said it wouldn't help to predict if she'd react or not.


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## my little penguin

Tenacity said:


> PS - My little penguim - If the Remicade, 6MP, EN and other treatments have helped but you still see disease progression, have you ever considered running LDN concurrently with the Remicade to see if it works for DS?  The dosage is so low that it is one of the most "harmless" medical treatments out there for Crohns.  Also, is DS drinking the Peptamen orally or via NG tube?



Tenacity -
DS drinks all of his peptamen junior orally. He did one 9 week course EEN and has stayed on half dose ever since ( just in case).

He has only been on remicade since the end of August so we don't know if the disease is progressing since his labs/ imaging is always normal.
However we do know his vasculitis / joint pain/ nausea / stomach cramps / blood  in the stool/ fatigue/ temnisus  all came back with a vengeance right before his last infusion ( about a week and half before) . So we know the remicade is working since it is the first time in over a year that all of those symptoms and some more disappeared .

As far as LDN - not really something I would really want to give to him.
It crosses the blood brain barrier . The effects on the brains of developing children is not known at all and we already had one very scary ( dx with seizure disorder ) stint with Neuro . The dx has been removed for now but not something I am willing to risk .
Spend time on the epilepsy floor at a children's hospital - my heart just goes out to the parents.
*
Julie - did they do MRE as well as the pillcam this time???
Did it show the strictures??? *


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## DustyKat

Hey Julie, 

Yeah, certainly surgery is contraindicated unless absolutely necessary when disease is diffuse. 

The Flagyl - My take on things is...if inflammation is present the intact mucosa has been breached. Because of the very nature of the bowels function I think it is generally thought that once that breach occurs a degree of localised infection is present at the site of the inflammation, hence the Flagyl. Flagyl is also thought to have anti inflammatory properties.  

Dusty. xxx


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## imaboveitall

MLP, no, other than a UGI/SBFT last year (followed closely after by her first cap endo) she has had no imaging. The Saint said he doesn't trust radiographic imaging to reveal inflammation and your dear fella's case certainly supports that view! He did the SBFT to look for blatant stricture but wanted the pillcam for irrefutable data as far as inflammatory changes.

Dusty, thanks, I hope it doesn't make her feel like crap, my adult daughter took it for a GYN issue and it tore her stomach up.


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## my little penguin

> I asked him about RAST for mouse allergy, he said it wouldn't help to predict if she'd react or not.



It won't predict if she will react to the drug or not but it will predict if she is allergic to mouse protein in which case there is a warning in the 10000 page prescribing info not to give remicade to individuals with mouse allergy.

Since DS is allergic to everything I just called the allergist and asked for a rast test.
He was negative so if he had an infusion reaction we would know it was to something else in the meds


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## imaboveitall

Oh MLP...WTF.
I phrased it to him that if she were allergic to mouse protein would it increase likelihood of reaction to Remicade, that's what I meant, I phrased it weird in my post here.
He still said it wouldn't help to predict...so now I'm going to look for that contraindication. Any idea where I can find it?


----------



## my little penguin

> -------------------------CONTRAINDICATIONS------------------------------
> • REMICADE doses >5 mg/kg in moderate to severe heart failure. (4)
> • Previous severe hypersensitivity reaction to REMICADE or known hypersensitivity to inactive components of REMICADE or to any murine proteins. (4)


From :
http://www.remicade.com/remicade/assets/hcp_ppi.pdf


----------



## imaboveitall

MLP you RULE :hug:
I just emailed him again and said I want her tested for mouse protein allergy, and quoted the link.


----------



## my little penguin

:redfaceid I mention I spend too much time reading....


----------



## Farmwife

I know Julie

:heart:We love our MLP! :heart:
Now you know why we all picture her in a lab coat!:biggrin:


----------



## my little penguin

FW don't make me find you:ytongue:
I do not own a white lab coat.
Microscope yes 
Lab coat no


----------



## Catherine

Sarah had MRI due to a raise in faecal calprotectin.  It showed her disease is now confined to 30 cm of the small bowel, but the gi and radiologist can't decide whether a fistula is present.  As her has no major symptoms and her CDAI index is not higher enough she doesnot qualify for remicade.


----------



## imaboveitall

Good Lord, Catherine, V's CDAI has to be way low, but it seems Remicade is next anyway due to the pillcam result alone.
Now I am obsessed with pillcam as I am obsessed with EN.
What about a pillcam for her? If it shows a mess then maybe that'd qualify her for the big drugs?


----------



## Jmrogers4

Sorry for the surprising news, sending loads of support yours and V's way.:ghug:


----------



## momoftwinboys

Sorry to hear about V's pillcam results.

I can relate to the feeling of being sucker punched when you think all is going well.

H developed a perianal fistula and we were given options, including Remicade.  Asked for advice here and read some.  
http://www.crohnsforum.com/showthread.php?t=40859

We chose the Remicade.  H saw immediate improvement.  His appetite came back that day!  He gained 3 1/2 lbs in two weeks.  His fistula healed.  This all happened in the first two weeks after the first dose.  His labs have also showed improvement.

BTW, he was on Flagyl and cipro for a month before the Remi and his CRP and ESR both went down while on them.

I still have times I stress about the long term risks, but I mainly focus on curtailing the current real risks and have gotten into a better place about the medicines.

I truly believe there are so many advances being made in IBD that there is hope.  I just want to make sure H's GI tract and physical size is in the best possible shape when we get there.  

Wishing you guys great results in whatever you try. :hug::hug:


----------



## Hobbes650

imaboveitall said:


> I know I have no choice really, either at this stage.
> "Once they start cutting they have to keep cutting" is what I've heard re: surgery for this disease.
> I fear short bowel syndrome as well as drug ramifications.
> 
> This just sucks ass in the most major way...to look at her she looks like the healthiest thing ever.
> I posted hoping others will realize this can be a SILENT disease.
> This is NOT what we expected to hear.


Hi imaboveitall!  I'm so sorry to hear about V.  Lots of good info in the replies so far, but I want to throw in my two cents regarding short bowel syndorome.  I believe that can develop, but you need to have less than 50% of your small intestine before it does.  I've had my entire large bowel removed, and probably another 6-9 feet of small intestine due to the multiple j-pouch failures.  I don't know how much more small intestine can be removed without some serious concern of me developing SBS, but I'm perfectly fine as is.  In fact, with all the weight gain I've had this year from taking Prednisone, nobody would ever accuse me of having any digestive trouble.  :biggrin:      Only thing with my diet is I make sure I'm well hydrated, otherwise I'll get tired more easily.   

As for the labs being normal, that certainly is not unusual and it's a big reason why IBD patients take biologics early in treatment now.  That kind of thinking is definitely different than with other diseases in which more aggressive medication isn't given until later, so it's easy to be scared by it.   My GI doc is considering Humira for me currently. The potentially bad things that can happen are certainly scary, but not common.  All sounds like you're moving in the right direction though, so hang in there.  I hope things improve soon!


----------



## Tenacity

MLP - My son followed the same medical treatment as yours many years ago.  The exclusive EN feedings, followed by regular diet supplemented with Peptamen 1.5 in his case.  To this day, he still supplements his diet with Peptamen 1.5 - watered down to improve the osmolarity - and just drinks it orally.  He also did the Remicade and started flaring the week before each infusion, until they had to increase the dose, and infuse every 6 weeks, instead of every 8.

Julie - If your daughter proves to be allergic to Remicade, perhaps you could try Humira instead?  Unlike Remicade, Humira is constructed from fully human monoclonal antibodies, whereas Remicade is a mouse-human chimeric antibody.  

I agree with you about the antibiotics - some can be harsh on the gut, and taking a probiotic at the same time can help with this.


----------



## imaboveitall

I love you guys :ghug:

MLP. The Saint (LOVE him) emailed back to say he'd consult their allergist re: the mouse allergy thing.
I told him to make sure he said she reacts to guinea pig, not just dog/cat. Guinea pigs are rodents, no?

Momoftwins, HEY :bigwave:, thanks for more Remicade love, I am now "at peace" as was suggested earlier in this thread, with using it and am ready. The animal dander thing is my only holdup fear at the moment.
Now I'm freaking a bit over the Flagyl, as V has zero gut symptoms :yrolleyes: and I fear it shall mess that up. I'm starting it on Mon as I'll be away on the weekend.

Hobbes, thanks for your additional info!
The SBS thing is a remote fear, The Saint is really anti-sx, and says he wants to avoid but I lean towards it when disease is localized, I kinda wish she'd qualify for it but with disease now spread beyond just her TI, they wouldn't consider it I know.

Tenacity, poor V trialed Humira last year and had ZERO result. Zero. Of course that begs the question will Remicade also yield a zero result.:ybatty:
I was going to get some Florastor to give with the Flagyl.


----------



## Farmwife

imaboveitall said:


> I
> I was going to get some Florastor to give with the Flagyl.




Grace had to do Flagyl for awhile. My only advice I was given weeks after she stared:ymad: was to give the Florastor and Flagyl a few hours apart. Because taken at the same time the flagyl will kill off the good bacteria of Florastor right away.
Oh and stay on Florastor up to 3 months after to replenish permanently the good bacteria in her gut. 
Someone can argue with me on that but.......I'm smarter.:lol2:


----------



## imaboveitall

FW, did the Flagyl mess her up at all??
The Florastor is damned costly I just discovered.
I'm printing a coupon online.
Thanks for the tip, the Flagyl is dosed 2x day so six and six, so I'll give the Florastor at noon.


----------



## QueenGothel

Yes this is the case with all probiotics.  According to the florastar site they are ok to take together but I would give it 2 hours after Anitbiotics and continue afterwards also.  I personally just think it is good to take probiotics all the time bc it does up the pH levels also so less chance of bad bacteria.  They wouldn't let me give Rowan Probiotics when she was taking Remicade and I don't really think there explanation made any sense and I couldn't find anything to back it up.  Something about what Remicade does to slow the immune system and adding good bacteria being a bad thing bc it can cause immune system boost. Canceling each other out. Again I found nothing to support this theory but worth mentioning.  I am sure there are plenty of people to debunk this theory which I am hoping for.


----------



## QueenGothel

imaboveitall said:


> FW, did the Flagyl mess her up at all??
> The Florastor is damned costly I just discovered.
> I'm printing a coupon online.
> Thanks for the tip, the Flagyl is dosed 2x day so six and six, so I'll give the Florastor at noon.


Two hours after is optimal per VSL website.


----------



## QueenGothel

Would her doctor write a pre-authorization for VSL.  Our insurance currently covers ours but bc of the J-Pouch and UC recommendation right on the package.


----------



## Farmwife

imaboveitall said:


> FW, did the Flagyl mess her up at all??
> The Florastor is damned costly I just discovered.
> I'm printing a coupon online.
> Thanks for the tip, the Flagyl is dosed 2x day so six and six, so I'll give the Florastor at noon.



:rosette2:
Cramps for a week, then went away.
 Nausa once in awhile. But keep in mind she can get that normally.
Grace was on it for c diff for 6 weeks.


----------



## Farmwife

We used a different brand also at first then Florastor.
Once it came back a second time we got Florastor.
We were told to pick a brand that had many different strain in it. Not just one or two.
Grace has been on probiotics most of her Little life .


----------



## Hobbes650

imaboveitall said:


> I love you guys :ghug:
> 
> MLP. The Saint (LOVE him) emailed back to say he'd consult their allergist re: the mouse allergy thing.
> I told him to make sure he said she reacts to guinea pig, not just dog/cat. Guinea pigs are rodents, no?
> 
> Momoftwins, HEY :bigwave:, thanks for more Remicade love, I am now "at peace" as was suggested earlier in this thread, with using it and am ready. The animal dander thing is my only holdup fear at the moment.
> Now I'm freaking a bit over the Flagyl, as V has zero gut symptoms :yrolleyes: and I fear it shall mess that up. I'm starting it on Mon as I'll be away on the weekend.
> 
> Hobbes, thanks for your additional info!
> The SBS thing is a remote fear, The Saint is really anti-sx, and says he wants to avoid but I lean towards it when disease is localized, I kinda wish she'd qualify for it but with disease now spread beyond just her TI, they wouldn't consider it I know.
> 
> Tenacity, poor V trialed Humira last year and had ZERO result. Zero. Of course that begs the question will Remicade also yield a zero result.:ybatty:
> I was going to get some Florastor to give with the Flagyl.



I don't know if there is any correlation between patients who fail with Humira and then failing Remicade, but I certainly know people who have success with one after the other didn't work.  From what I read online, Humira does not work at all in about 1/3 of patients, and only 50% of those who find success maintain it after 1 year.  With Remicade, Wikepedia quotes a 2005 study that that says 44-45% maintain remission of their disease after 1 year and 61-69% maintain after 2 months.  It didnt's say how many people don't respond at all, so after 2 months if not success then it's probably safe to assume it doesn't work.  I'm sure your doctor has more current info though, this info is 7 years old.


----------



## imaboveitall

FW, thanks! I'll start it Mon.

Mary, I know VSL can be prescribed, Florastor cannot, I'd far rather use a script one and not pay a crapload for it, but I was told Florastor with Flagyl, specifically that type.
Anyone know more about that??

Hobbes, those stats stink. (I'm wondering if your username refers to Calvin and Hobbes, adore them :thumright. I expected some reaction to Humira but apart from  two really weird "altered mental status" events after the loading doses that were put down to migraine (never happend before nor since) she had NO (observable) effect.
If Remicade doesn't "fix" her fast, I won't continue it, that's for sure.

Re: mouse allergy, quote from The Saint:

Heard from our allergist:
"The mouse Fc portion of Remicade and mouse proteins in dander/fur are completely different proteins and testing her is not advised or necessary for Remicade infusion, but would be worthwhile if you decided to buy a pet rodent.  Testing her would offer no predictive value for her"


----------



## Hobbes650

imaboveitall said:


> FW, thanks! I'll start it Mon.
> 
> Mary, I know VSL can be prescribed, Florastor cannot, I'd far rather use a script one and not pay a crapload for it, but I was told Florastor with Flagyl, specifically that type.
> Anyone know more about that??
> 
> Hobbes, those stats stink. (I'm wondering if your username refers to Calvin and Hobbes, adore them :thumright. I expected some reaction to Humira but apart from  two really weird "altered mental status" events after the loading doses that were put down to migraine (never happend before nor since) she had NO (observable) effect.
> If Remicade doesn't "fix" her fast, I won't continue it, that's for sure.



Yes, it does refer to Calvin and Hobbes.  As you know, Hobbes is the alter ego who loves to stir things up and never gets caught.    But anyone who checks my profile picutre sees the reference, and it is one of favorite pictures of these two.

I was a bit disappointed in those stats as well.  I'll be having the Humira discussion with my doctor soon.  I know the research says you are more likely to get longer remissions when taking biologics early in treatment.  But I got 25+ years of remission while not taking any medicine (we thought I origianlly had UC so my surgery "cured" that) and right now all the inflammation markers are back to normal.  So, since I am now taking Azathioprine, we are hoping that once I get off of Prednisone in Feb the AZA and Pentasa will be good enough to keep the flare ups away.  I'll get scoped again once off Pred to see how things look, and then we'll talk about Humira.  But if I can feel ok without taking Pred then I'm leaning against taking anything more.  Given the risks and the fact I'm 44 and already have a 25+ year remission on record, I'd like to see if I can get another one of similar length.  My disease was much more severe when I was 18 than now at 44, and that does seem to be a trend.  Lastly, with my inflammation markers at normal levels I'd be curious to know how my doctor will figure out if Humira is actually working? When all looks good at the beginning, I would think it'd be too hard to tell.

V isn't in my situation by any means so keep fighting the good fight.  There are many people who do get really sick and seem hopeless but for some reason, things turn around without surgery.  But keep in mind that even when things turn around, things may not get "good enough".  That is, one may not be getting sicker but the quality of the life isn't very good- that was my story in a nutshell.  Please keep us posted as to V's progress as I will certainly be thinking of her!


----------



## kimmidwife

Oh My goodness,
I am off for one day and I miss so much! I am sooo sorry to hear about this going on with Violet. You are absolutely right about these doctors not wanting to do a pill cam. Had to push to get Caitlyns doctor to at least scope her this time but am so glad I did. we are still waiting for the biopsies but by the naked eye she appears to be in remission from the LDN. Have you considered trying it?


----------



## DustyKat

Matt was on Flagyl for six months, 3 months pre op with a regime of 400mg three times a day and post op at 200mg three times a day. The one thing I did make sure of was that every time the script was filled I obtained the brand Flagyl and not the generic Metronidazole. The brand was far more palatable. 
As a side issue he was also on a combined therapy with another antibiotic in the pre op phase. 

He did not take a probiotic and had no side effects. 

Good luck!

Dusty. xxx


----------



## imaboveitall

Hobbes, your case is the kind that makes me want surgery.
Won't happen though unless I hire a rogue surgeon myself. :tongue:

Kim, HEYA! :hug: I asked The Saint about naltrexone months ago. He said he had used it on several pts with little success. Ditto worms, fecal transplant, GCSF and thalidomide. Quote: "I was never able to duplicate the response seen in the studies".
He did say he had success with fecal transplant for persistent c-diff but that's it.
His take on these tx was, due to the highly individualized nature of IBD, he believes SOME pts will have a good response and no way to tell which shall unless you try.
He said he'd prescribe it for her. But then she went on pred and had insta-cure (we thought) so I abandoned the notion.
Now here we are, blindsided, and she is in too bad of shape for me to f**k around. :eek2:

Dusty, her dosage is 250mg 2xday for 30 days.
But I am sure she'll be on Remicade before then.
Of course the ins gave us the generic. If she reacts weird I shall ask for the brand and pay for it.
What do you mean by palatable?


----------



## Farmwife

It's wicked tasting stuff!!!
You can ask the pharmacist to flavor it.
Still, even with that it's hard to get down.


----------



## my little penguin

I would assume V's would be in pill form not liquid like Grace's so taste should not be an issue.


----------



## DustyKat

The generic has a powdery finish to the tablets whereas the brand has a smooth finish so no residue when placed on the tongue. 

Dusty,


----------



## Hobbes650

imaboveitall said:


> Hobbes, your case is the kind that makes me want surgery.
> Won't happen though unless I hire a rogue surgeon myself. :tongue:
> 
> Kim, HEYA! :hug: I asked The Saint about naltrexone months ago. He said he had used it on several pts with little success. Ditto worms, fecal transplant, GCSF and thalidomide. Quote: "I was never able to duplicate the response seen in the studies".
> He did say he had success with fecal transplant for persistent c-diff but that's it.
> His take on these tx was, due to the highly individualized nature of IBD, he believes SOME pts will have a good response and no way to tell which shall unless you try.
> He said he'd prescribe it for her. But then she went on pred and had insta-cure (we thought) so I abandoned the notion.
> Now here we are, blindsided, and she is in too bad of shape for me to f**k around. :eek2:
> 
> Dusty, her dosage is 250mg 2xday for 30 days.
> But I am sure she'll be on Remicade before then.
> Of course the ins gave us the generic. If she reacts weird I shall ask for the brand and pay for it.
> What do you mean by palatable?



I hear that, but wanted to say I'm not suggesting one form of treatment over the other.  My story is listed in the My Story section and I included all the relevant points.  But my story isn't typical.  Granted nothing is, but some stories are a bit stranger than others and I'm in that club.

I've always said that suffering with IBD at a young age has to be one of the worst things that can happen.  But even so, one can only make decisions with the best information they have at the time.  This place is great for that!  But nobody other than family and doctors can be involved in any decision to have surgery or other treatment.  One thing some people don't do but they should, is ask their doctor what their plans are- Plan A, Plan B, C,, and most importantly, when surgery should be considered.  My doctor had told me he wanted me to ask for it first- he didn't want to judge the quality of my life and wanted me to ask for the ileostomy since I would adjust to it better by asking for it instead of it being forced upon me.  My disease forced the issue on its own, but if it hadn't that would have been a really tough thing for me to do.  I had zero reference on which to make that decision and my family was pretty much in denial up until the colon was removed.  That's not a good spot for an 18 year old, much less so for anyone younger.

How is V's spirit these days?  Does she reach out at all to others like herself?  This is probably old news for you, but I recently discovered Sara Ringer's videos on youtube (easy enough to find, just youtube search her name) and her 50+ videos are the most amazing things I've ever seen.  Not just due to her story- been there, done that, got the t-shirt- but her commentary is very special.  I highly recommend those videos to anyone suffering with IBD that hasn't discovered them already.  Of course not everything is relevant, but you'll get answers and even answers to questions you hadn't thought of yet.

Best,
Hobbes


----------



## imaboveitall

She hates the pred tabs for that very reason. Bitter on the tongue :tongue:
But now I'm recalling reading somewhere ages ago (not on here) about brand name Flagyl being preferred for some other reason...new obsession: what was it they said...:ybatty:

MLP, see above woudja where I posted about the mouse allergy and tell me what you think about the allergist's reply.

Hobbes, she is such an unusual case as far as "spirits".
Brilliant (tested IQ is 144), ruled by logic, she has little patience with emotions.
She is always upbeat. She's had a very privileged life and she well knows it.
She also has a strong spirituality and is at peace within from that.
She isn't the reaching out to others kind; she is too scornful of those who do and of those who "emote" unnecessarily. She truly is baffled by those (like MEEEE) who cannot cope well with adversity.

I do NOT have that! I am all about being irritated and nasty tempered :ymad:


----------



## Hobbes650

imaboveitall said:


> She hates the pred tabs for that very reason. Bitter on the tongue :tongue:
> But now I'm recalling reading somewhere ages ago (not on here) about brand name Flagyl being preferred for some other reason...new obsession: what was it they said...:ybatty:
> 
> MLP, see above woudja where I posted about the mouse allergy and tell me what you think about the allergist's reply.
> 
> Hobbes, she is such an unusual case as far as "spirits".
> Brilliant (tested IQ is 144), ruled by logic, she has little patience with emotions.
> She is always upbeat. She's had a very privileged life and she well knows it.
> She also has a strong spirituality and is at peace within from that.
> 
> I do NOT have that! I am all about being irritated and nasty tempered :ymad:



In some ways, it's a lot easier to go through it ourselves than watch a family member.  But you're able to compliment V and are so incredibly informed- that really does help create a good environment for healingl. Keep up the good work!


----------



## Crohn's Mom

I'll bet you read it on here a long while back ~ I know Dusty has explained this to someone before 

By the way ~ I'm sorry V's condition has worsened.
I've been reading your posts all day while I waited as Gab was getting her MRE done today.
Thinking of you both ~ you are in good hands already with all of the advice given :hug:


----------



## my little penguin

Regarding the mouse allergen -
We asked the allergist for rast since it was a quick easy test.
He did state it would not help predict a reaction but thought it was worthwhile.
We also wanted to skin prick test with remicade but given a small vial would be $$$!!$
We decided against that one.
Not really sure why they are giving you such grief over a rast test.
Yes the proteins are different but still similar enough in my book and our allergists book.
Our Gi just deferred to the allergist.
I was still nervous as all $&&$) for the first few hours.
Btw DS is on Zyrtec ( max adult dose)daily for his allergies but the allergist had the Gi add additional Benadryl on top of that just in case to keep his system a little calmer.


----------



## imaboveitall

Thanks Hobbes (I keep picturing you as the tiger )

Hi CrohnsMom! :heart: I have been so self-centeredly obsessed I haven't read but a few posts on here save my own thread so I'm way out of all loops.
I so hope your girl is well and results of her MRE are great. V could be headed her way, God knows...when I heard "stricturing type" I got all flushed with fear :voodoo:
I know what I read on Flagyl wasn't on here, it was like years ago...something aboout less side effects maybe?
Dusty or anyone who knows, holla at a playa if you have any clue as to what I could be thinking of?

MLP, the Saint deferred to the allergist and the quote was from him, I am trying to reason this out: if the allergist feels it won't predict if she's reactive to the form in Remicade, then that seems clear enough; there is no way to test for the specific protein in Remicade, only the dander version?
So the question is, does a reaction to the dander version increase likelihood she'll react to the other form?
No way to tell, I guess. I can request it and they'd do it, every and any test I request is always done.
So now I'm debating if it's worth requesting, what value will the result be?

Ahhh...Obsessing is the key to life :stinks: :voodoo:


----------



## QueenGothel

holla at a playa

You crack me up.  Glad you haven't lost your spunkiness.


----------



## izzi'smom

Just chiming in re: Flagyl...we had it in liquid form and they added double the flavoring...it is super bitter. I have heard that the pill form is also nasty-so much so that you can taste it after swallowing the whole pill. At any rate, hoping that between this and Remi it is successful.


----------



## imaboveitall

Heh heh Mary...the only thing lost is my mind :ywow:

Hey IMom! :kiss: How is the beauty queen??
Bad taste she can deal with, but I KNOW I read somewhere about always get brand name because...and I cannot recall the "because".
This was like 3 years ago when The Saint's partner wanted to put her on it while The Saint was out of town due to a pos c-diff culture. She had no signs of c-diff and I refused; The Saint backed me up. But I read about Flagyl at that time and WTF was it that I read about preferring brand name dammit...:voodoo:


----------



## izzi'smom

November marked 6 mos on Tacro/Bactrim...we are stable with minimal issues. Kidney function is WNL and CRP varies from <1 to 10. TY for asking. I should be thrilled but feel like i am waiting for the other shoe to drop. 
No idea on flagyl vs metro. it will come to you...always does lol!


----------



## imaboveitall

OH AWESOME. :dance:
I needed to hear a good report...YAY.

I know nothing about using Tacro for IBD. Must be unusual, no?
Is it a trial?


----------



## Tesscorm

Julie,

I don't know about the Flagyl vs. generic but I always buy the 'brand', not the generic versions of drugs.  While the medicinal ingredients must meet certain regulations/standards, there is room 'to play' with the fillers and coatings, etc.  Sometimes, those changes in the fillers and coatings can effect the efficacy of the drug (ie in the case of time release meds, etc.) and, as was said above, in flavour.  This may not be a problem for everyone and it may not be a problem for all situations/needs (ie I would buy a generic version of rubbing alcohol )

My husband doesn't agree with me and I have been with him when he has asked a pharmacist if there's a difference between brand and generic.  Pharma said 'no difference' but, as far as I'm concerned, her 'no difference' applies only to the medicinal ingredient(s).  Both my husband and Stephen use Nexium - husband the generic, Stephen the name brand.


----------



## Clash

Flagyl, is the nastiest tasting pill, and the taste sticks with you. I had a nurse tell me to stick a peppermint under your tongue a few minutes before you take and hold it under there until you swallow the pill. I have never tried that though. 

Also, I have heard the brand thing for Flagyl from my doc when he px'ed it to me, there was a reason he wanted me to take Flagyl over the generic metrodonizol but I can't remember why now.


----------



## Clash

There was another trick to taking the Flagyl the Doc gave me but I'll have to think about it because right now it hiding in my scatter brained self!


----------



## Tesscorm

If it's that foul tasting  and the peppermint candy works...  a suggestion might be peppermint extract.  You can buy it in the baking section, where you would find vanilla extract, etc.  I'm just thinking you'd have to be awfully coordinated to swallow the flagyl while keeping a candy in your mouth?!?!? :lol:  but, maybe a drop of the peppermint extract before and after the pill might help.


----------



## QueenGothel

What about peppermint tea?


----------



## DustyKat

The comparison I gave between drugs was Imuran v's Azathrioprine v's 6MP and their bioavailability. I don't remember posting anything about Flagyl but who knows..not me! :lol: 

As to taking the Flagyl...turn away now if you are squeamish :lol:...Matt would just chuck 'em in his mouth and swallow them dry. That is how he takes all tablets actually. :eek2: I don't think he has taste buds as he never complained about the taste of the Flagyl and I made a point of asking him.


----------



## Clash

Ha! I just spoke to that same nurse that gave me the tip and she "No, silly pop the peppermint in your mouth for a few minutes take it out to swallow the pill then pop the peppermint right back in." That would alleviate the need for the heimlich maneuver when both pill and candy went down! Sorry, guys!


----------



## Farmwife

Clash
Ha! I just spoke to that same nurse that gave me the tip and she "No, silly pop the peppermint in your mouth for a few minutes take it out to swallow the pill then pop the peppermint right back in." _*That would alleviate the need for the heimlich maneuver when both pill and candy went down! Sorry, guys! *_



_*The Obituary for Farmwife*_

Farmwife passed away Friday evening the 7th of December.
The cause of her death still is being ruled a mystery.
Next to her dead body was a pill by the name of Flagyl
 and a peppermint candy in a small puddle of vomit.
They also found on the computer typed ...........Darn you Clash!


----------



## jmckinley

Patricia56 said:


> My advice is to make peace with the need for meds instead of drawing it out and risking MUCH worse damage to your child's health from uncontrolled Crohn's.



I second this! I am so sorry you've been pushed into that corner we all know so well. I resisted drugs too! Way back, Ryan was doing well on 6mp and GI wanted to add Sulfasalzine. I resisted, but did it (but never at the levels he wanted me to). Then we had a flare...could that have been avoided if I had done therapeutic dose? I don't know. Then I resisted Remicade. It took a hospital stay for me to warm up to the idea. The attending GI finally convinced me the risk of letting damage continue was as dangerous if not more so than the remicade. Whatever the drug of choice, the choice is to do whatever will stop the damage from occurring and pray that we don't see any of the ill effects. I think I just melted with relief when we finally decided to start the drug and stop fighting it. It was like I had been swimming upstream!

Ryan is the healthiest one of our bunch too. Doesn't catch too many bugs, eats healthy and owns stock in soap!

Many hugs to you! :kiss: I hope you find some peace in making a decision.


----------



## Sascot

Think I've missed a bit here, life is getting in the way of my forum fix!  Andrew was on Flagyl for 3 months, no side effects and he never complained about any taste issues with the yellow coated one.  He once had a different box (annoys me when they change brand) and the pills were white - said they tasted horrible.


----------



## Crohn's Mom

> The comparison I gave between drugs was Imuran v's Azathrioprine v's 6MP and their bioavailability. I don't remember posting anything about Flagyl but who knows..not me!


Are you really gonna make my OCD kick in and go find that post ?? :yfaint:


----------



## DustyKat

Yes! Because I have fecking dementia!

Love ya T! :hug:


----------



## Crohn's Mom

> Hi cecilialynn,
> 
> My son was on Flagyl for 6 months. Three months pre op, 400mgs three times a days, to help keep infection and inflammation under control and three months post op, 200mg three times day, as the Crohn's specialist subscribed to the view that it would help establish and maintain a longer remission.
> 
> *The brand tablets, Flagyl, were much better as he did not suffer with the taste issues that the cheaper more powdery generic, Metronidazole, produced. In his case, over the 6 months he did not appear to suffer with any side effects whatsoever*.
> 
> Good luck!
> 
> Dusty. xxx


http://www.crohnsforum.com/showthread.php?t=37051

HA ! My (somewhat) photographic memory at work !

:dance::dance::dance::dance::dance::dance:


----------



## Crohn's Mom

> Hey Angie,
> 
> Matt has been on Flagyl for 5 months now and has another month of treatment to go. He takes it three times a day.
> 
> Fortunately he has had no side effects but with what Izzi is experiencing I would question the efficacy of it. Like you say, what's the point if she is vomiting it up.
> 
> *The only issue Matt had was the taste and that was resolved with ensuring that he was dispensed the brand rather than a cheaper generic.
> *
> Matt was not prescribed Flagyl for infection as such, all his stool cultures were negative but rather the Prof stated that research indicates that it helps reduce harmful intestinal bacteria and suppress the intestine's immune system, which can trigger symptoms.
> 
> I agree about the maintenance medication too. A month between flares indicates to me that it isn't doing the job. Time for a thorough review, maybe by a different doctor?
> 
> Dusty. xxx


...and just for more fun ! LOL
:dance::dance:

luv you bunches D! :heart::heart:


edit : I'm done now..but seriously...can't help myself ! Unless of course u want me to keep going ???




> Matt took 400mg three a day and post op 200mg three times a day. He *did not appear to suffer with any side effects and never had issues with the taste except when he tried the cheaper generic Metronidazole, he found it unpalatable due to the powdery coating it had*.


----------



## Crohn's Mom

By the way...you may have fecking dementia ,but at least your dementia is consistent !

:rof::rof::rof:


----------



## DustyKat

Jesus I tell a good story! :rof: 

Well done T! :lol: Who needs a fecking memory when I have you! Mwah! :kiss: Except I'm like the old granny you invite for Christmas and I bore the bejesus out of you all by telling the same story again and again and again and again...

Oh and did I tell you Matt was Flagyl for 6 months. He was on 400mgs three times a day pre op and 200mg three times a day post op. He didn't.....:rof:


----------



## Clash

:rof::rof:OMG...LMAO that was hilarious!!:rof::rof:


----------



## izzi'smom

DustyKat said:


> Jesus I tell a good story! :rof:
> 
> Well done T! :lol: Who needs a fecking memory when I have you! Mwah! :kiss: Except I'm like the old granny you invite for Christmas and I bore the bejesus out of you all by telling the same story again and again and again and again...
> 
> Oh and did I tell you Matt was Flagyl for 6 months. He was on 400mgs three times a day pre op and 200mg three times a day post op. He didn't.....:rof:


:ylol::ylol::ylol:

Imaboveitall, Tacro is regularly used to get IBD patients healthy in preparation for surgery by our Boston docs. Her own GI has never used it for IBD (he has used it for transplant patients). We opted out of the surgery after her drastic improvement, which her Boston GI is not thrilled with :shifty: They don't like to keep kiddos on it for long as it can damage the kidneys, although transplant recipients are on it for a lifetime. I am planning to keep her on it as long as possible...if she DOES end up needing life altering surgery I would love for her to be at an age where she can have some input in the decision.


----------



## my little penguin

Will say that DS uses metro ( flagyl ) creme on his face for the newly developed perioral dermitis ( rosecea) .
It works well but the inflammation ( rash) starts up right before the next creme session is due. I could really see it working for the gut the same way kwim.


----------



## QueenGothel

Well we are jumping on the Florastor train also due to c.diff. So VSL and florastor?


----------



## imaboveitall

AW THANKS all :rosette1:

FWife, that was an awesome post. :thumleft: 

Jmckinley, thank you too, I like to hear from the other drug resisters who have now succumbed to the scary drugs :hallo3:

I'm OK with going ahead now, she is always ready for whatever comes, I await word from The Saint as to the full report on the pillcam (all I have had so far is an informal email saying what a mess things are compared to last year's) and shall start Flagyl tomorrow.

I've also upped her formula quite a bit.


----------



## kimmidwife

It certainly is hard to put our babies on these drugs but as most people said the cases of bad side effects are rare and we know that allowing crohns to run unchecked will definitely have consequences. All we can do is weigh the pros and cons and do the best we can.


----------



## LittleChloe

Thanks for posting this Julie. Chloe's labs were perfect at her last follow up but I'm def going to ask for the pill endoscopy next time she goes. I think I'll take my iPad to show her gi this post in case he says she doesn't need it. I just have a question. Why has she been on prednisone since April?  Is it a tiny dose because she's dependent or is it part of her regular treatment?  I thought pred was something done to treat a flare, i didn't know people stayed on it. I wonder if the prednisone could play a role in skewing the bloodwork somehow?


----------



## imaboveitall

Little C, do read my older posts if you want a clearer picture, it may give you some stuff to think about.
In short: the pred was started when she had fatigue/weakness/vasovagal type symptoms to a debilitating degree.
She had ZERO GUT symptoms and still has none.
She also has borderline hypocortisolism causing the cardiovascular issues/diastolic hypotension (tachy HR, diastolic BP is often in the 30's and is sometimes too low to get a read). SO she responded GREAT and FAST (six hours after 1st dose) to the pred. 
We started with a dose pack, then to 30 mg and on down until she was at 15mg/5mg alternate days and still doing GREAT. NO SYMPTOMS.

After the cap endo result we upped pred to 40mg for a week, and now to 30mg and on down to as low as she can get and still manage the hypocortisolism/dysautonomia.

Oh and yes pred can skew labs; her labs were the same prior to it as they now are with the exception of lactoferrin which was formerly HIGH and since pred has been LOW. That was her only abnormal value except for low cortisol and low iron which she has consistently had.
Then the annual cap endo and lo and behold this big healthy ox beauty queen has a maelstrom in the entire small bowel. Formerly just the TI was involved, last year's pillcam showed all healthy small bowel until it got to the TI. 
SO in her case as her symptoms were from hypocortisolism, the pred fixed that up straightaway but DID NOT help ongoing inflammation (which in her case is apparently SILENT) which has been advancing all these months, SILENTLY.
So really the pred masked how sick she was/is, but she has never had gut symptoms so WTeffingF are we to do? Do pillcams yearly I guess as it was the only way to know; her scopes are always perfect.


----------



## Catherine

Julie, I would also try faecal calproection this is sarah only test which is high but it is only 620 and course mri. She also has low iron like V, but it has also resulted in anemia.

I have just found out that Sarah has a very mild gassy stomach which is enough to stop her swimming but she says its not Crohn pain, this what caused me to have test run.  You may find V also has some very very low symptoms.


----------



## Sascot

Good luck with the Flagyl.  Hope she has no side effects from it and it helps with the problems.


----------



## imaboveitall

Thanks, Catherine, yes your girl sounds much like V, lactoferrin is similar to calprotectin, and that's her only "off' lab besides iron and cortisol.

Sascot, thank you, she had two doses thus far and no issues, I asked her afterwards if it tasted bad and she said no worse than pred tabs which are bitter according to her.
It's temp solution though as Remicade is surely next, maybe with methotrexate too.


----------



## my little penguin

Julie-
Look in the ped research section - two papers now include females and MTX in the risk group for t-cell lymphoma when combined with remicade.
just thought you should know.
hugs


----------



## imaboveitall

Oh I know MLP, I know. ale:
I will likely start Remicade alone first as I don't like to introduce more than one variable at a time in case of bad reaction.
The Saint's reasoning for starting the two together is to help prevent antibody development to the Remicade.
Apparently that's what the big IBD centers are recommending, he said.
But I can't see myself doing that from the jump.


----------



## my little penguin

Depends on the study but the one I read in research section
The amount of time to build antibodies and the amount of time remicade was still effective was the same regardless whether it was used as remicade alone or with Mtx .
Our Gi had not seen the studies until I gave him prints he said most Gi's are using both together but since Mtx is basically the same mechanism as 6-mp or Aza he would not expect a different ( less risk with Mtx) .


----------



## crohnsinct

my little penguin said:


> Julie-
> Look in the ped research section - two papers now include females and MTX in the risk group for t-cell lymphoma when combined with remicade.
> just thought you should know.
> hugs


You really do want me to change your name to bubble burster don't you

Jk you know we love you and all your research!  :ghug:


----------



## Jenn

Remicade was so awesome for Alex. In hindsight, I wish we'd done something to prevent the buildup of antibodies if it would've let him stay on remi longer. Though at the time I remember quitting the 6mp just as fast as I was able, I was so freaked out to have him on both at the same time. And now he's on both Humira and 6mp anyway! sigh....


----------



## imaboveitall

Many thanks for that, Jenn :heart:
It was hard enough to get OK with using Remicade and now I must debate using it alone or with MTX. I think what I'll do is see how well it works at first, and if it is working great add the MTX after awhile if I do at all. It seems like several on here who were once on just Remicade are now on a combo, I can think off the top of at least four *sigh* :frown:

You too, MLP, thanks. He keeps offering to send her to a big IBD center for a second opinion, says the combo is what the big dogs are using, he goes to conferences a lot and has presented V's case to colleagues at them and to a really big research dog in Canada. They all seem to concur with his recommendation.
I feel somewhat defeatist as in, I suspects she'll end up on a combo eventually no matter what I do now. This sucks. :voodoo::voodoo:


----------



## Aniuko

imaboveitall said:


> Many thanks for that, Jenn :heart:
> It was hard enough to get OK with using Remicade and now I must debate using it alone or with MTX. I think what I'll do is see how well it works at first, and if it is working great add the MTX after awhile if I do at all. It seems like several on here who were once on just Remicade are now on a combo, I can think off the top of at least four *sigh* :frown:
> 
> Hi, just a word about the Remicade+MTX combo. My doctor (prof.Koletzko - a lot to talk about but she is an amazing scientist!)) said the the researches show that the combo has much better results both in starting the remission as well as  carrying it on. She also said that it is better to start with the combo. She thinks she will be tapering down the MTX after some time (now it is 15 mg a week).
> 
> Maybe not much help but something I wanted to add.
> 
> Ania


----------



## my little penguin

> In that study, 75% (12/16) of patients on concurrent 6-MP maintained a favorable clinical response, compared to 50% (9/18) on no concurrent immunosuppressive therapy.28 In the ACCENT 1 study, only 18% of the patients on neither concurrent prednisone nor immunosuppressive drug therapy developed HACA, compared to just 10% of patients on concurrent azathioprine or methotrexate therapy.26 The therapeutic benefit of concurrent immunosuppressive therapy is generally considered marginal and is felt to not outweigh the associated increased risk of hepatic T-cell lymphomas, a malignancy that is universally lethal in the pediatric patient population.27 Moreover, both adalimumab and certolizumab have proven efficacy in salvaging those patients who develop either a partial responsiveness or intolerance to infliximab therapy.28 As a result, the purported benefit is not felt to outweigh the increased risk for malignancy.


From:
http://amec.glp.net/c/document_library/get_file?p_l_id=844095&folderId=754745&name=DLFE-19607.pdf


----------



## imaboveitall

THANKS, Aniuko.
He is so up on the current thinking on treatments and has used a lot of the alternative ones other docs won't try (like EN for V for years now, naltrexone, worms etc) so I really should trust him and I DO revere him, really. He is a true Saint. I am just so scared. :voodoo:
Your saying that is how your doc who I read in your other post is a big dog herself, feels, makes me feel better about him wanting to go that route. I know he consults gurus often on V and others, and is not just pulling stuff out of his hat. Or ass. :blush:


----------



## imaboveitall

I am so grateful for all you guys who think of V and post here. Just sayin. :Karl:


----------



## my little penguin

> DDW: Methotrexate Adds No Benefit to Infliximab (Remicade) in Crohn's Disease
> By John Gever, Staff Writer, MedPage Today
> Published: May 23, 2008
> Reviewed by Zalman S. Agus, MD; Emeritus Professor
> University of Pennsylvania School of Medicine
> Action Points
> Explain to interested patients that the study found no benefit from adding methotrexate to infliximab (Remicade) therapy in Crohn's disease.
> Explain that infliximab and methotrexate are each approved individually for Crohn's disease.
> Note that this study was published as an abstract and presented orally at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
> SAN DIEGO, May 23 -- Although both methotrexate and infliximab (Remicade) are known to be effective against Crohn's disease, combining them provides no extra benefit, a researcher said here.
> 
> 
> Patients receiving the combination had the same treatment success rate as others treated with infliximab alone in a 50-week, placebo-controlled trial, reported Brian Feagan, M.D., of the Robarts Research Institute in London, Ontario, at Digestive Disease Week.
> 
> 
> "Triple induction therapy with methotrexate was not more effective than dual induction therapy followed by infliximab maintenance therapy," he said.
> 
> 
> Treatment success was defined by three criteria: score of less than 150 on the Crohn's Disease Activity Index and no clinical need for prednisone supplements at week 14, and no relapse though week 50.
> 
> 
> At week 14, 76.2% of patients receiving the combination met the success definition, compared with 77.8% of those taking infliximab and placebo (P=0.83). There were 63 patients in each arm.
> 
> 
> Relapse rates were also nearly identical, with 55.6% of combination-treated patients meeting the final success definition at week 50 versus 57.1% of those receiving infliximab and placebo (P=0.86).
> 
> 
> Disease duration had no bearing on responses to the combination versus infliximab alone. There were no differences in response rates in patients whose disease onset was less than two years earlier, nor in patients with disease duration of more than 12 years.
> 
> 
> Patients in the study were adults with an established Crohn's diagnosis and active symptoms requiring 15 to 40 mg/day of prednisone. Lactating or pregnant women and patients with risk factors for toxicity from the study drugs or recent serious infections were excluded.
> 
> 
> Infliximab was given at 5 mg/kg by infusion at weeks one, three, and seven, and every eight weeks thereafter through week 50, with 200 mg of hydrocortisone prior to each infusion. Methotrexate was started at 10 mg weekly by subcutaneous injection, then increased to 25 mg by week seven and continued until week 14. Prednisone was gradually withdrawn over the 14-week induction phase.
> 
> 
> Median disease activity scores over the first 14 treatment weeks suggested that the methotrexate-infliximab combination was actually inferior to infliximab alone, although the difference did not reach statistical significance.
> 
> 
> Dr. Feagan said that if any advantage for the combination was going to be evident, it would most likely have been in this measure. In fact, the mean score in the combination group at week 14 was about 125, compared with about 100 with infliximab.
> 
> 
> Secondary measures of effectiveness, such as scores on the SF-36 health survey instrument, also showed no significant differences between treatments.
> 
> 
> There were no major differences in adverse effects in the study, Dr. Feagan said. The most important was that 14 patients in the combination group had disease exacerbations versus four in the infliximab-only group. Infection rates were nearly identical.
> 
> 
> Despite the lack of benefit for the combination in the trial, Dr. Feagan said it deserves additional research.
> 
> 
> "In my opinion, future studies should concentrate on combination therapy in patients with early disease and in steroid-resistant patients," he said.
> 
> 
> Gary Lichtenstein, M.D., of the University of Pennsylvania in Philadelphia, commented that the findings were no surprise.
> 
> 
> Earlier studies in his own lab and elsewhere had suggested that combinations of drugs do not add benefit to individual biologic therapies in Crohn's disease, he said.
> 
> 
> "In most patients you don't need to add anything. These biologic agents are wonderful drugs by themselves. By adding drugs such as methotrexate or steroids you are just increasing the risk of serious adverse events," he said.
> 
> 
> The study was investigator-initiated with support from Schering Canada.
> 
> Dr. Feagan reported relationships with Abbott, UCB Pharma, Centocor, Schering-Plough, Novartis, Celgene, Chemocentryx, Procter & Gamble Pharmaceuticals, Otsuka America, Berlex, Santarus, Synta, Genentech, PDL Biopharma, and Elan.
> 
> 
> Dr. Lichtenstein reported relationships with Salix, Procter & Gamble, Shire, Axcan, Centocor, UCB, Schering-Plough, Abbott, AstraZeneca, GlaxoSmithKline, Bristol-Myers Squibb, Elan, Serono, Wyeth, Millennium, and Protein Design Labs.
> 
> Primary source: Digestive Disease Week
> Source reference:
> Feagan B, "A randomized trial of methotrexate in combination with infliximab for the treatment of Crohn's disease" Digestive Disease Week 2008; Abstract 682c.


From:
http://www.medpagetoday.com/MeetingCoverage/DDW/9598

I will move to research section as well


----------



## izzi'smom

crohnsinct said:


> You really do want me to change your name to bubble burster don't you
> 
> Jk you know we love you and all your research!  :ghug:


Screw changing her name, I'm going to hire her to do mine!


----------



## imaboveitall

MLP as Dusty is already the Mayor of Suckville, I nominate you for Vice Mayor.
Thank you so much. 
Of course this makes me question WHY all these big dogs want to use the combo therapy when there is data to refute its benefit?
I want to see if Remicade even works before worrying about preventing antibodies. It may not do a thing for her as Humira didn't.
Plus I am loath to introduce two variables and always avoid that when I can.


----------



## Farmwife

izzi'smom said:


> Screw changing her name, I'm going to hire her to do mine!



AMEN!

I think we should pull all our monies and hire her permanently to be at or beckon call!:thumleft:


----------



## Aniuko

Yes, I loooove all these researches...

Is V taking Prednisone? From what I understood in the studies all the patients were taking prednisone during the time of the study. Maybe that could influence the study? Also, the study is from 2008 and maybe there are new studies which my doc was talking about...Or am I just trying to make myself feel better that Kasia is taking MTX+Remicade ))).

And yes, you guys are right...thanks all the people who read researches and share them. 

Ania


----------



## crohnsinct

I would vote that slate in! Dusty and Penguin for Mayor and vice mayor! I would pay to see those campaign ads and our convention shall be in Chicago!


----------



## imaboveitall

Aniuko, go a couple posts above and see MLP's 2010 study. *sigh*
It corroborates the one from 2008.
Yep, been on pred since APRIL and STILL had disease progression. WTF.


----------



## Aniuko

imaboveitall said:


> Aniuko, go a couple posts above and see MLP's 2010 study. *sigh*
> It corroborates the one from 2008.
> Yep, been on pred since APRIL and STILL had disease progression. WTF.


Ok, I say no more...

Ania


----------



## imaboveitall

Yep, Aniuko...welcome to Suckville...no way out, just like Hotel California :hallo3:


----------



## Hobbes650

imaboveitall said:


> Yep, Aniuko...welcome to Suckville...no way out, just like Hotel California :hallo3:



Actully, people are leaving Ca in droves.

http://www.nbcbayarea.com/news/business/Cost-of-Living-Sucks-Everyone-Leaving-California.html

The only ones left are those too rich to care, or too poor to leave.


----------



## imaboveitall

OK, word from The Saint after reviewing the whole study: quote, "a very disturbing result and significant progression".
Just figured I'd open with that cheering tidbit. :stinks:

Entire sm bowel now involved, mod to severe disease throughout, "stricture and/or perforation is likely", blood loss from sm bowel is reason for low iron
Recommendation: 
Start Lialda (waiting for ins pre-auth)
continue Flagyl 
up pred to 60mg for a week then down by 5mg/wk
Remicade asap
diet: primarily formula (already implemented)

I knew much of this from email before but this was the official report after reading the second half of the study.
Scared, so scared.


----------



## Clash

Oh my, I know you hated to hear all of it from him even if you were fairly sure of it all from the email. I do hope that the treatment plan sets thing right and heals the damage quickly.

It is so much to wrap your head around, I am sure, with V not having symptoms and holding weight. To know all that can be going on with normal labs and tests and no symptoms just chills me to the bone and makes me want to sign up for every test they have for C!!!

I just wanted to send some extra hugs:ghug::ghug: for you and V and a couple of stabbies:voodoo::voodoo: for CD


----------



## Catherine

Sorry hear it the whole sm bowel.  Hopefully you can move forward quickly with treatment.

We are luck far 30cm of sm bowel involvement is causing us low iron and anemia, I can't imagine what more would do.


----------



## Tesscorm

:hug: :hug: :hug: Julie :hug: :hug: :hug:

I'm so, so sorry that you've received that news!!!  You know that I know exactly how you're feeling! :ghug:   When they're looking and feeling so well, it truly is a sucker punch! :ymad:  I can easily imagine all the questions, thoughts, worries flying through your head right now...  I'm there with you!  There was so much great advice and information given on Stephen's thread (which I know you've read), that I can't add anything!  But, reading everyone's positive experiences with remicade truly, truly helped me!!  Re-read them all!!  I know knowledge is golden but, for now, DO NOT GO TO THE REMICADE subforum!  Give yourself time to absorb slowly, there's lots to take in!!

Lots of love :heart:, hugs :ghug:, and strength :arghmatey_ani: going your way!!!  

:ghug:  :ghug:


_(it's crazy at work today, will try to come back on later...)_


----------



## imaboveitall

THANKS, awesome friends. :rosette2:
Correction from earlier post: "stricture and/or FISTULA/perforation likely" :shifty-t:

Clash, I know, WTF that this can be so silent. Dusty's girl, Stephen and Violet...all silent...I cannot believe Stephen, the other long term EN user on here (that I know of) who also used no drugs is now in the same condition as V. Blowing my mind really. What are the odds Tess and I would be on here with the same situation at the same time. And Crohn'sMom's Gab. Sh*t. If I hadn't had the pillcam  WE WOULD NOT have known, despite pillcam naysayers it was essential in this case. I SO HOPE this helps others. 

Catherine, he didn't give measurements, I have no idea how much is actually involved, he just said, "throughout the small bowel". From that I infer in its entirety, "patchy" he said throughout. :yfrown:

Tess, dear...what can I say. I am here when you need me.:Karl: I know you're thinking as I am, "had I listened to the doc last year she wouldn't be in this predicament maybe". Oh and I shan't be reading ANY MORE on Remicade, I know what you mean, I have to just do it now, she is to have it regardless and I cannot help the reaction/result. Must let go and just take action now.

Love to all.


----------



## my little penguin

Don't be so hard on yourself - you make the best decision based on the facts at the time-
At the time she had no symptoms and things looked good inside .

Your post makes me wonder what DS small bowel really looked like before remicade especially since everything got so much better afterwards.


----------



## crohnsinct

In the words of my friend imaboveitall.  That effing sucks!  I can believe inflammation but am blown away by the extent.

Ditto MLP's comment.  You are an incredible advocate for your daughter.  Every decision you made was painstakingly arrived at and not made lightly.  Things change.  I know I said this to you once before but you just never know had you jumped to these drugs earlier who knows they might not have worked. 

I am with Clash...this is enough for me to hire a GI on retainer to live in our house and test O constantly.  

So sorry hun and I hope that Remicade kicks Crohns' Ass!


----------



## Clash

Poor C is over at a friend's house for the night, he is going to come home to a manic Mom that has him signed up for an MRE, pillcam and colonoscopy for Christmas to h*LL with some presents!!!

On a sucky sidenote, I was so distraught about V after reading your post, I obsessed all day afterwards while trying to get some Christmas shopping done. I walked through the door with Stephen and Tess on my mind and all the while thinking wasn't there something else one of these kiddos was waiting on the results for...then it hit me I was supposed to call the d@#n GI nurse today for C's results on those last tests!


----------



## Crohn's Mom

Please don't beat yourself up over this ! ~ You either Tess !
You both made informative, well researched, heart wrenching decisions on the best medical path for your children ~ and you made them from your heart ! Where on earth could anyone find fault in that !
It's like I said recently in the Undiagnosed Kids thread ~ IT IS THIS DAMNED DISEASES FAULT ! NOT OURS !

Look at it from my perspective if you will for a moment ~ Gab was on 6mp, started on 120 mg of pred and tapered down over about a 15 MONTH time frame.  She was also on Apriso, (Asacol before that), fish oil, Flagyl and Cipro ( for approx 9 months straight), protonix and I'm sure there are plenty  other things that were tried and failed as far as supplements along the way.  THEN she had over 100 cm of her very diseased bowel removed and a temporary ileostomy placed for 9 months.  AFter all of this ~ cutting her disease out and re-starting her system and putting her on the "big guns" Cimzia~ her remission lasted maybe 3 months before she became symptomatic again ! Ok, so you probably know the rest since then and up till now ~ things aren't pretty and now we're moving onto combo therapy. Sooo...even if you had both decided on the "big (scary) guns" long ago, there are NO guarantees that your precious children would not be in the same place right now.

BE KIND TO YOURSELVES ! 

Much love and peace to you both 
xoxoxox
my heart is breaking for you all !


----------



## kimmidwife

I have to say also don't beat yourselves up! We do the best we can for our children! It really is scarey how this disease can progress silently but I thank g-d for all the tests we do have available today as well as all the current treatments and new ones on the horizon. I was reading last night about some celebs who died in their 50's from complications due to crohns. It scared the crap out of me but then I thought about how lucky we are today for all the improvements in medicine we have. When those celebs were diagnosed and treated they had way fewer options then our kids do which was why their diseases progressed to the point it did. I think we have to try to look at the bright side of things (Monty python song in my head right now. Always look on the bright side of life!)and also continue to look at the future and new things which are on the horizon for our kids!


----------



## izzi'smom

You've already gotten great advice...nothing to add but love...:kiss::kiss::kiss:
and stabbys, because you love them...
:voodoo::voodoo::voodoo::voodoo::voodoo::voodoo:
:heart:


----------



## imaboveitall

Thanks ALL! Angie stabbies RULE :voodoo::voodoo:
Crohn'sMom awesome post :kiss:

*gulp* first infusion DEC 27 1 p.m.
I'm getting her the new Google Nexus 10 tablet to take to infusions


----------



## izzi'smom

a new tablet-NICE! May it go as smoothly as possible...and remember, baskets of kittens.


----------



## Tesscorm

Julie, if this helps at all...

My mom's cousin was diagnosed with crohns at least 10, probably closer to 15, years ago in Portugal.  She was in seriously bad shape, is approx. 5'6" and went down to 90 lbs, everything that was tried (and I don't know what was initially tried) failed, her specialist sent her to another specialist because he had run out of ideas, said he'd never had a patient who presented such severe symptoms and did not respond (her crohns is in her large colon... so not the exact same circumstance as V).  At some point, they finally tried remicade (must have been in it's very early stages???), she had infusions every two months for two years.  After that, she stopped the remicade and has been on imuran (my mom didn't know why the switch - I've asked her to ask...  and, I just got these details last night).  She has been absolutely good since the remicade!!!  She looks great, feels good, is retired now and travels all the time!  Even though her GI has told her to go ahead and try any/all foods, she's so afraid of going back to those 'bad' days, that she watches her diet - eats fish almost every day, avoids fried or greasy food, seeds, limits certain fruits/veggies, etc.  On the occasions that she does go off her diet and has a reaction (not even sure if it is a mild flare), she takes a low dose (5-9mg??) of steroid for a few days until things settle (I'm not encouraging self-medicating!  :facepalm and it has worked for her!  Thus far, she's had no negative side effects from any of her treatments. 

This may not be directly relevant to V but it's just another story of these scary drugs doing more good than harm! :ghug: :ghug:


----------



## imaboveitall

Thanks, Tess, I read all the good reports on here over and over these days...you prob do the same.
Let us know when Stephen's first infusion is, not like you won't


----------



## Tesscorm

:lol:  Oh yeah, like that'll be the day I start worrying about privacy issues!!!  :yfaint:

Just know, given that Stephen and Violet seem to be on the same path!!, every thought I have of Stephen includes Violet!!!  I'll be stressing with you every day until the 27th!! :ghug: :ghug: :ghug:


----------



## momoftwinboys

Good luck with Violet's first infusion  
BTW, noticed it was at 1pm. We were told we could not have afternoon appts in the beginning. They had to be in the morning. I asked why cuz we were trying to avoid missing too much school. They said they wanted morning in case there were any reactions that doctors would be more available if it was earlier.   Do not want u to stress anymore than u already are, but I thought I should share since you mentioned about allergy testing.


----------



## imaboveitall

I asked for morning. The first appt in the a.m. was in Jan, I wanted the soonest, that's how we got this 1p.m.
It's at the hosp right by the hem/onc clinic so I'm hoping docs shall be within shouting distance.
I am picturing her going into anaphylaxis in the chair. I am such a Debbie Downer.

HA Tess, ME TOO, I think of Stephen's situation and am watching your thread too. I am so glad I have you, sad that to have you means your boy is sick, but if he IS sick, glad I know about you and him...if that makes any sense...:hug:


----------



## my little penguin

DS will be with V on the 27th - that is his next infusion day scheduled anyways --- 

Our infusion clinic is at the end of same day surgery unit so lots of docs-
DS always has two epipens on his person so if there is an Ana I am less inclined to sit and wait for others to find out what to do since I have seen it twice before .

She will do fine on the 27th just don't plan on her moving her arm much since the iv at least for DS is in the elbow area.
Bring lots of food they want them to eat and eat to keep blood sugar up.
They may have buzzy the bee if not ask it makes the iv painless.
Ask about pre meds each doc / clinic has different protocols she will still be on pred so her system will be calmer in terms of allergic reaction.
DS was also given Benadryl and Tylenol on top of his normal daily Zyrtec .
Expect her to be tired afterwards and encourage her to rest and drink a lot even if age doesn't want to.
She may run a low grade fever less than 100.5 f but still mommy warm.
They should. Give you a sheet on what is normal and when to call with a ton of super secret numbers .
Good luck


----------



## Aniuko

Tesscorm said:


> Julie, if this helps at all...
> 
> My mom's cousin was diagnosed with crohns at least 10, probably closer to 15, years ago in Portugal.  She was in seriously bad shape, is approx. 5'6" and went down to 90 lbs, everything that was tried (and I don't know what was initially tried) failed, her specialist sent her to another specialist because he had run out of ideas, said he'd never had a patient who presented such severe symptoms and did not respond (her crohns is in her large colon... so not the exact same circumstance as V).  At some point, they finally tried remicade (must have been in it's very early stages???), she had infusions every two months for two years.  After that, she stopped the remicade and has been on imuran (my mom didn't know why the switch - I've asked her to ask...  and, I just got these details last night).  She has been absolutely good since the remicade!!!  She looks great, feels good, is retired now and travels all the time!  Even though her GI has told her to go ahead and try any/all foods, she's so afraid of going back to those 'bad' days, that she watches her diet - eats fish almost every day, avoids fried or greasy food, seeds, limits certain fruits/veggies, etc.  On the occasions that she does go off her diet and has a reaction (not even sure if it is a mild flare), she takes a low dose (5-9mg??) of steroid for a few days until things settle (I'm not encouraging self-medicating!  :facepalm and it has worked for her!  Thus far, she's had no negative side effects from any of her treatments.
> 
> This may not be directly relevant to V but it's just another story of these scary drugs doing more good than harm! :ghug: :ghug:


Tess, thanks for a successful story! I so need them all!

On another note...Kasia just had her second infusion yesterday. All went well! They gave us her blood results from two weeks ago (before the first infusion) and from yesterday. I couldn't believe EVERYTHING was so much better. Everything except iron was in a normal range, B12 was too high - I should stop feeding her B12 and folic acid was too high although we stopped giving her folic acid six months ago (she just gets it with MTX). She also gained 1.2 kg within 2 weeks. I know we still have a long way and could be many bad reactions and other problems but so far I am happy.

I will be thinking of you guys,

Ania


----------



## my little penguin

Ania
What great news!!!
May it continue for a long time.


----------



## Tesscorm

Aniuko, Super news!!!  It so great to hear when treatments are going well and the kids are getting better!!!! :ghug: :ghug:


----------



## DustyKat

Oh my goodness Julie, if I am in shock what must you be feeling. My heart breaks for you hun. :ghug::ghug::ghug: 

I too can only say not to beat yourself up about this. 20/20 vision in hindsight is such a bitch and lets face it, had you known this would be the outcome you wouldn't have chosen this path. 
You and Tess and so many others here have not been on a fool's folly. You have researched, you have questioned, you have debated, you have had the courage of conviction and most importantly of all it was all done under the guidance and supervision of a doctor. 
I had it easy and I say that because the decisions were taken out of my hands. For us it was survival or not, not much to think or dwell on there! I don't think it matters whether you have time on your side or not because even though I didn't have a choice I still second guess and think about the what might have beens. what if I had perhaps pushed a little harder here or there, what if I hadn't found a hundred and one reasons why they were tried and so on without one of those reasons being related to illness. I think it boils down to what we as parent's do better than just about anything...guilt! Well maybe I shouldn't generalise and just say that is my excuse! :lol: 

Oh man Julie and the rest of you guys. What a bloody difficult and heartbreaking time so many of you are facing...:hug::hug::hug: 

I hope the Remicade infusion goes well hun and V responds wonderfully well. :heart: 

Sending loads and loads and loads of love, luck and healing thoughts your way! 

Dusty. xxx


----------



## DustyKat

@ania...thanks for the fab update hun.  

May it keep on keeping on! 

Onwards and Upwards!
Dusty. xxx


----------



## imaboveitall

HI friends, :heart:
Jeez the threads move fast, when away for a few days there are like 20 new ones. 

Found out Remicade infusion is given in ped hem/onc clinic and one of the three pedi oncologists is always in the office seeing pts during infusion hours!
We know two of the three as V had a hem/onc consult at dx, they are STELLAR, love them. 

She has had NO bad reaction to Flagyl! Takes it at 6a.m. with pred, empty stomach and all and is fine. Thank GOD.
Her boyfriend is coming with her to the first infusion DEC 27.
Little kids love V and she said she may be able to amuse some of them that are in there getting their chemo with her *sob*. She is such a star herself :medal1:


----------



## Hobbes650

imaboveitall said:


> HI friends, :heart:
> Jeez the threads move fast, when away for a few days there are like 20 new ones.
> 
> Found out Remicade infusion is given in ped hem/onc clinic and one of the three pedi oncologists is always in the office seeing pts during infusion hours!
> We know two of the three as V had a hem/onc consult at dx, they are STELLAR, love them.
> 
> She has had NO bad reaction to Flagyl! Takes it at 6a.m. with pred, empty stomach and all and is fine. Thank GOD.
> Her boyfriend is coming with her to the first infusion DEC 27.
> Little kids love V and she said she may be able to amuse some of them that are in there getting their chemo with her *sob*. She is such a star herself :medal1:



Good the hear!  I do not take Remicade, but I'm told those who do get benadryl by IV first to help them relax.  Many take a nap while the treatment goes on, so I doubt V will be doing much "entertaining" with the poor kids while having tretment


----------



## imaboveitall

Hi Hobbes the tiger!
Yep, The Saint said Benadryl first and V HATES Benadryl's effects when she takes it for animal dander exposure. She doesn't want to sleep, says she'll be mad if she falls asleep... I'll get her some caffeine.


----------



## my little penguin

Watch the caffeine since they really watch heart rate during the infusion .
They want to know what the drugs are really doing


----------



## imaboveitall

MLP, (and thanks for your other post above) her HR is never raised by caffeine, oddly.
We've tried it for vasoconstriction purposes to raise her BP. HR stays the same. Unless she goes from sitting to standing, then the POTS kicks in and it'll go from 80 to oh say 140 in like ten seconds :ywow:
With her diastolic hypotension I can see the infusion nurses furrowing eyebrows already. The first time a nurse at her reg ped couldn't get a diastolic pressure on her at all was amusing (not). I was like, don't be alarmed, happens all the time :shifty:


----------



## kimmidwife

When is she getting her first infusion? Caitlyn never fell asleep from the Benadryl. She always brought her laptop and played on it.


----------



## Tesscorm

Glad she's doing well on the flagyl! 

:ghug:  :ghug:  What else can I say...  sucks that we all have to be here! :Karl:


----------



## my little penguin

No sleeping here either with Benadryl 
He just watches movies


----------



## DustyKat

So good to Flagyl isn't causing problems!  and long may it stay that way! 

Good luck for the 27th! Fingers, toes and absolutely everything else crossed! Those little kiddos are just going the love V! Bless her...:heart: 

Dusty. xxx


----------



## kimmidwife

Good luck for the 27th will be waiting to hear how she does. Keeping my fingers crossed for a smooth infusion with no problems!


----------



## Jenn

Benadryl knocks me out every time, but didn't affect Alex at all. He got oral benadryl and tylenol before each infusion. Good luck! I'll be thinking of you guys. My non-IBD son is having his wisdom teeth pulled same day. erk.


----------



## Tesscorm

Good luck tomorrow!!!!  Really hoping all goes smoothly!!! :ghug:


----------



## my little penguin

Good luck -- thinking of you and V
Breathe and remember it will all be ok


----------



## kimmidwife

Good luck tomorrow!


----------



## Tenacity

I will be thinking of you tomorrow - hope all goes well!


----------



## Hobbes650

Good luck with everything ladies!


----------



## upsetmom

Good luck


----------



## my little penguin

Fingers crossed


----------



## kimmidwife

Good luck today!


----------



## Clash

Good Luck, today!


----------



## Sascot

Good luck with the infusion!  Glad the Flagyl isn't causing any side effects.


----------



## imaboveitall

You guys are so awesome to think of us :soledance:

Infusion went GREAT, not even the slightest blip in her vitals which are monitored q15min, she was checked out by the pedi hem/onc doc prior to starting, who REMEMBERED us from 4.5 years ago, as soon as she walked into the room she recognized us, wow. What a caring doc she is to whom pts obviously are not just cases.

NO IMPROVEMENT, however. NONE.
I am so disappointed. If this goes like Humira I shall lose it.


----------



## my little penguin

Hugs ...
Remicade takes time that is why it is a loading dose .
You will get there .


----------



## DustyKat

:hang:  In there Mum. :hug: 

Sending loads of love, luck and healing thoughts your way. :heart: 

Dusty. xxx


----------



## kimmidwife

Sending good thoughts your way and like the others said you usually don't see results that fast especially after the loading dose. Give it time. Will be keeping my fingers crossed for her!


----------



## Clash

I'm glad the infusion went well without a hitch, hope you see results soon!!


----------



## Sascot

Sorry to hear you haven't noticed any improvement yet.  However she never seems to do things by the book , so maybe it will take a few days to notice an effect.  Glad the infusion went well.


----------



## imaboveitall

Hi all, I had to go MIA again, too upsetting, I know you guys get it. 

V had 6mo f/u with The Saint this week.
She's had two Remicade infusions thus far, no issues.
She's now on SIX drugs in total as he added low dose oral MTX weekly to prevent antibody formation. Pred is now on a fast wean though (5mg every three days) so it'll be 5 drugs soon.

He said the only way we'll know if any good result is happening from any of them wil be another pillcam in six months, as her labs are not reflective of disease activity and she has no gut symptoms. 
He switched her f/u to 3mos, she has been on 6mo f/u for years.
Remicade antibodies/therapeutic levels in 3mos is the plan. Pillcam in 6mos, if no change then what...I am scared to consider. Adding wkly injections of MTX at therapeutic dose is likely next step. I'm not down with that.

He again offered second opinion consult with a "guru", research guy he reveres. I declined. He said he keeps this guy up to date on V's case and this plan is what they both agree on.


----------



## Tesscorm

Somehow missed your post all day:  

I'm glad its going well so far!!! :hug:  the remicade, mtx, etc is enough to deal with! - try not to borrow trouble wondering if it won't work!  :ghug:  :ghug:  she feels good, looks good and is getting the right treatment!  Try to relax and enjoy :hug:  :kiss:


----------



## Farmwife

Good to hear she doing well.
HUGS


----------



## CarolinAlaska

So scary.  I'm sorry to hear it.  I'm glad she is outwardly doing so well.  I pray that the new meds work and that the small bowel gets better - not worse.


----------



## DustyKat

Thanks for the update hun...:hug::hug::hug: 

It is good to hear that the infusions have gone well and long may that continue! I hope the Pred taper goes well and there are no issues once it is completed. Good luck! 

You have both been in my thoughts and will continue to be. :heart: 
Dusty. xxx


----------



## kimmidwife

Hope things continue to go well! Keeping our fingers crossed that the remicade does the trick for her!


----------



## Twiggy930

Glad to hear that things are going well for V.

:dance::dance::dance::dance::dance::dance::dance:


----------



## Tesscorm

Thinking of you!!!  Hope all is continuing to go well with V! :thumright:  And you! :ghug:


----------



## imaboveitall

Thanks Tess and all! :rosette1:
V had her third infusion on Friday. 
NO ISSUES at all with the infusions. I watch her vitals like a hawk and they remain completely the same throughout. The pedi hem/onc doc checks her each time, she has a room to herself and the nurses are stellar. No post infusion fatigue, no changes whatsoever.

Of course we all know there could easily be internal, unobservable changes.  and now with MTX added...

The Saint is very pleased as her iron and lactoferrin (only labs that were ever abnormal) are greatly improved: LF is NEGATIVE and iron is finally in normal range. Her hgb which was always LOW NORMAL, like 11/12, jumped to 14. He dropped Flagyl when he saw these results. The presumption is that the internal bleeding that was the reason for the low iron/low norm hgb is lessening. 

Cannot really know, though, until the next pillcam which he wants in six months.


----------



## Clash

I'm glad to hear that V's iron has come up, I know you won't know until the pillcam but that sounds like a positive for sure.

C is coming up on the 6 month mark of MTX. He has no issues from the MTX or the Remicade but I was hoping he could come off the MTX at 6 mos, since I've read that protocol but I doubt the doc will be ready for that and I am putting the cart in front of the horse since we don't even know if he will make the full time between infusions...but here's to hoping!

Really glad to hear of the improvement in her iron levels!


----------



## Tesscorm

It's great to hear that she's feeling no effects at all from the infusion!  And, while I'm you want those pillcam results NOW :voodoo:, it's certainly a positive sign that her HGB and lactoferrin results have improved!!  They are signs you're moving in the right direction. :thumright:

We're STILL on hold with Stephen and, of course, my stomach's always in knots but... you and Violet are doing so well with the remicade, I'm thinking 'if you can do it...'!


----------



## Crohn's Mom

It's so good to hear some good news ! 
I'm super happy that the infusions are going so well and there are no visible side effects


----------



## Sascot

That's really great that things are going well!  Hope it continues for a long, long time!


----------



## Jmrogers4

Glad things are going well, hope the pill cam in 6 months shows vast improvements on the inside as well.


----------



## my little penguin

Woohoo!!!
Glad things are improving


----------



## imaboveitall

Hey all, small crappy update.
V's lactoferrin being checked weekly for months, went from 0 to 26 to 395 to 5095. Also some TI and LLQ pain.
While on Remicade. And pred. And MTX and Pentasa. Simultaneously.
*sigh*
Before declaring Remicade a fail, she had a draw for antibodies/therapeutic levels. Awaiting results.
A stool panel also to see if the huge jump is from infection. No evidence of it being infection. It is disease progression, I am sure. 

Next step is likely inpatient IV steroid blast. Shall be decided next week.
She is running out of drugs to use for sure.


----------



## my little penguin

:hug:


----------



## Clash

Sending hugs your way!


----------



## Tesscorm

Julie, so sorry to hear!  

Assuming she has not built up antibodies, has there been any thoughts to moving up her schedule or dose?

Lots of hugs... know this is hard for you:ghug:


----------



## Twiggy930

So sorry to hear this news.  

:ghug:


----------



## CarolinAlaska

What a disappointment, I'm sure.  I hope they can find a reason that is easy to fix.  I'm sorry to hear it.


----------



## Sascot

Sorry to hear your bad news.  Hope they manage to find something good to treat her with asap.


----------



## Dexky

I missed a lot of V's story over the last year but I remember her only symptom being extreme fatigue some time back.  Is the TI and LLQ pain new for her?  Are they going to move up the date for the pillcam or do scopes?  Good luck!!


----------



## Farmwife

Sorry to hear the update.

HUGS


----------



## imaboveitall

Thanks guys. :ghug:
If antibodies, d/c regardless of thera range.
If no antibodies and NOT in thera range, UP dose.
If no antibodies and IN thera range, d/c OR UP MTX dose.
If d/c, then IV steroid blast.

Pain is indeed new, Dexky. She's had mostly silent disease, not even labs show it other than lactoferrin.
Last labs in Feb were all normal, LF was too until now.

I cannot stress enough how insidious this disease can be.
She eats/excretes normally. Even meds that upset people's stomachs do not bother her.
She catches NO illnesses, all here had bad flu this winter. She had nary a sniffle, though on three immunosuppressants.
To look at her she looks like a big overgrown ox.

This disease is the weirdest.


----------



## Clash

Second the "weirdest disease"!!

Our scope showed narrowing at ICV, MRE looked good, biopsies good, FC levels only 300 and no antibodies....still had a 9 day stint in hospital overall. Blech!

We discuss results and plan next Monday, with these decent results I'm assuming treatment may include unicorn magic or dragon scales...hey might as well throw in our kitchen sink as well...just to cover all our bases!!

Hugs...this disease is insidious and mind warping!


----------



## Jmrogers4

Sorry V is not doing as well as hoped.  Totally agree everything can look so normal on the outside but WWIII is happening on the inside.
I like the dragon scales idea clash


----------



## Tesscorm

I'm glad you have plans in place...  know it won't really be a relief until you start to see some improvement but, at least, you have the next steps ready to go.

Given the recent LF results, are there any plans to do any imaging testing?  I think the plan was to do imaging six months after starting remicade??? but, given these results, any thoughts on seeing where the inflammation is located.  (Then again, not sure that really makes a difference in the treatment anyway...:ybatty

Lots of hugs... :ghug:


----------



## Crohn's Mom

Definitely the weirdest !

Gab got her hair done the other day, and I was just staring at her and told her she looked healthier that day than I had seen her in months.. She responded with something like, hmmm that's funny, cause I feel terrible ! 

Hope you get some solid answers soon ~ hang in there ! :hug:


----------



## kimmidwife

Sorry to hear, this disease really does stink! Hope you find something that works for her! I like Clashs idea of dragon scales!


----------



## imaboveitall

Clash, wow. 9 days in hosp?? God.

No imaging plans yet, awaiting the damned labs, stool went in on Fri, draw for HACA and thera range was last Tues so a week ago.
Next infusion is supposed to be Apr 9 but now who knows.
F/u Apr 16 but he and I in constant touch meanwhile by email.

I have a theory (MLP? what do you think?) that whatever is wrong with her immune system, was made WORSE by introducing Remicade.
Just like with cancer pts where the cells mutate further after chemo and become even more aggressive, perhaps the introduction of a strong immunosuppressant caused a mutative change and the cells that are overactive are now in an even more overactive state due to adapting to the environmental change.


----------



## xmdmom

I just read





> I have a theory (MLP? what do you think?) that whatever is wrong with her immune system, was made WORSE by introducing Remicade.
> Just like with cancer pts where the cells mutate further after chemo and become even more aggressive, perhaps the introduction of a strong immunosuppressant caused a mutative change and the cells that are overactive are now in an even more overactive state due to adapting to the environmental change.
> __________________


I think that Remicade's effects on the immune system are transient -- that's why people sometimes have recurrence of their symptoms prior to their next dose, because it's wearing out.  I do not think it causes mutations (at least not in the short term.) That's not to say that it didn't throw off the balance of something but I don't think it would be a permanent situation.  ((((HUGS))))  Hoping things will be looking up soon!


----------



## QueenGothel

I am so sorry this wretched disease is no longer silent for V.  Totally sucks that The combo is making things worse or they don't know yet. Regardless it is crap that they can't figure it out.  So frustrating, I have been there. I can't remember but did she ever try the LDN? Just throwing out ideas bc I am frustrated for you as well.  :ymad:  Grrrr!


----------



## DustyKat

Oh man Julie...:ghug::ghug::ghug: 

I am so, so sorry to hear about V, , and I hope, wish and pray more than anything that you find the answers you need, and soon. 

Hating this silent, insidious disease right along with you hun...:voodoo: 

In my thoughts, always. :heart: 

Dusty. xxx


----------



## izzi'smom

Just dropping by to say I'm thinking of you...and hoping against hope that things improve for V. (((HUGS))). 
Hated getting our HACA back...Remi was such a difficult decision to go ahead with and to find out it couldn't work for us...:heart:


----------



## imaboveitall

Hey all :ghug:
I don't often come here anymore but when something happens with old V I think may help others, I feel I should  post it!

She got very bad the past month; as bad as she was at diagnosis minus the starvation (credit to formula). Fever, early satiety, so weak she could not sit up, dizzy with any position change, tube looked bloody when she pulled it each morning, labs crappy (for her), pale, dark circles, and more I am sure.
Into hospital, IV steroids X 3 days and MRI AND MRE.

Why I am posting:
MRI AND MRE WERE TOTALLY NORMAL.
The Saint said: they will show bowel wall thickening, abscess, fistula and/or serosal changes but NOT NECESSARILY mucosal inflammation. He said she was obviously very sick and the neg scans did NOT MEAN there was a normal bowel! He was looking for abscess due to fever.

She was discharged yesterday on 60mg pred and 150mg Imuran plus her other drugs.
Today she is MUCH BETTER and is going to go to the fair tomorrow night with her BF.
The point herein that may benefit others:
clear scans may not mean there is no inflammation present.


----------



## DustyKat

Oh man Julie, your poor girl. :ghug: And so heartbreaking for you. :hug: 

So good to hear she is starting to feel better and I hope The Saint is able to find what he is looking for and knock that bugger on the head! :voodoo: 

Sending loads of love, well wishes and healing thoughts your way. :heart: 

Dusty. xxx


----------



## kimmidwife

sorry to hear she has been so sick and in the hospital.Glad she is feeling a little better. Hope she is able to have a great time at the fair with her BF!


----------



## crohnsinct

I am speechless!  Glad she is going to the fair but just so sad to hear all that poor girl is going through. 

As always thanks for taking the time to keep us posted...just praying for the day those posts are awesome great news.


----------



## Sascot

Glad she is feeling a bit better.  Sorry to hear she hasn't been too well - hope that is her turned the corner to feeling a bit better.


----------



## Crohn's Mom

Glad she's feeling better now  

I agree - we know from Gabs experience pre- first surgery that the scans don't always pick up all they should 

Hope she continues to get better - thanks for the update!


----------



## ChampsMom

Thanks so much for posting!  Sorry to hear V had to go through this - hopefully this will put her back on an easier path!


----------



## imaboveitall

Many thanks everyone :ghug:

Dusty, didn't your girl have clear scans right before she needed surgery?
Crohnsmom, did the clear scans in Gab's case confuse the docs?
I had two residents (it is a teaching hosp) act all amazed at the clear scans (granted, first year residents) and one of them and I were going down the misdiagnosis path together...:eek2:
Anyone else with clear imaging but a sick bowel?


----------



## my little penguin

Here- DS has clear scans - he likes to think outside the box


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## DustyKat

Hey Julie, 

Sorry for the late reply. :redface:

Yes, Sarah's CT, one week before surgery, was grossly normal and in view of the disaster they found when they opened her up they were at a loss as to why it was so. 

Dusty. xxx


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## Niks

Sorry to hear she's been so poorly   I really hope that she enjoyed the fair.  Everyone deserves some fun  :ghug:

I really wish my daughter's Doctors thought the same way.  Because she has had a 'normal' MRE, they think that it is all fine!  :ymad:


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