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.

 

[Farmwife]

Hugs to you both.

 

[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!

 

[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:

 

[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.

 

[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!

 

[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.

 

[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.

 

[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?

 

[Farmwife]

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?

 

[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.

 

[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:

 

[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.

 

[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:

 

[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!

 

[Tesscorm]

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:

 

[imaboveitall]

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

 

[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:

 

[QueenGothel]

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

 

[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.

 

[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!

 

[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.

 

[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:

 

[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

 

[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.

 

[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:!

 

[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?

 

[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.

 

[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.

 

[my little penguin]

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

 

[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.

 

[Tenacity]

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

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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

 

[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.

 

[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.

 

[my little penguin]

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???

 

[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

 

[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.

 

[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

 

[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]

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]

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]

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]

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]

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]

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]

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]

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]

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: