Update on C back to reality

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Clash

Clash

Joined
Apr 26, 2012
Messages
6,338
Ok, so my last update was that C's Fecal Calprotectin result was 48...still loving that but I think it led to some fairytale thinking on my part.

Isn't it crazy that when they are having symptoms or flaring you are praying for this med or that med to do it's thing and get them back to normal. But when I got C's FC test result, it was almost like the opposite effect I was thinking, "Okay, we'll probably drop MTX or extend Remicade back out and look at extending the dr. appts out from every three months...I could go on and it could've possibly included thoughts of he's doing so good it may last forever...

Doc was not on this fairytale wavelength with me. He liked where C's level was at but does not want to mess with meds at this point. He said even at the most he has only been in this asymptomatic state for not even 3 months(funny how that can seem like forever when your kid isn't complaining of any issues!!!) and he would prefer to see the stability for a little while longer before switching up any treatment regimens. I totally agree with his rational thinking but it did crush my "C lives happily ever after without heating pads, tummy aches or pill boxes" fairytale.

It was an overall good visit the doctor was pleased with C's weight gain and C has grown a little over 2 inches in the last 12 months. So nothing to complain about except my overactive fairytale thinking!!

Thanks for reading!
 
Now Clash, get out of your castle and back to reality! :lol:

Seriously though, I hear you loud and clear hun. When the times are ****** it is so in your face that you have time to think of little else than getting through the next 24 hours. BUT when the dust settles then boy oh boy does the imagination have time to pick and run with every bloody little scenario!
Have you been told lately just how normal you are Clash? :lol:

It surely is fab to read that your lad is doing well hun and I hope it stays that way forever!

Dusty. :heart:
 
Yeah, if that was all it took to qualify me as normal I'd be set, of course, a short convo with close friends and relatives would quash that qualification!:lol2:

Just got off the phone with the GI nurse and the good news just keeps coming...normal CRP and SED(lowest since dx but never been really high) and liver numbers are great too.
 
Yay! So now leave well enough alone and stop over thinking everything! :lol:

Of course I never over think anything! :tongue:

Onwards and Upwards! :mademyday:

Dusty. xxx
 
MLP, that is a great article and I had not read it yet(although the combo reminder every other answer makes me twitch a bit!!).

BTW, did you read this in the research section:

http://www.crohnsforum.com/showthread.php?t=52654

Isn't it basically saying that the comparison of that 500 study group to the other studies were the same as far a risk? Or is it upping the risk?
 
Normal? Girl you are from Georgia...don't make me dredge up those old threads:p

No no no! I absolutely agree that there may be no more heating pads etc. Stay in the castle! And I agree with doc. It hasn't been that long yet. Remember our friend, full mucosal healing. You need to take a lesson in patience from your NYC friend;)

I am totally lovin the weight, height and inflammation markers (although those haven't been very useful for him in the past I won't balk at good ones).

A week ago you though you might be changing meds! I would say status quo is a huge victory and you are still kicking Crohns southern fried ass! GO GEORGIA!
 
Oh, I'm totally on board I just thought it was so funny that I so quickly went from "OMG, was that poop, burp, blister, headache, laziness(ha) a symptom of a flare" to after the FC result "Ahhh...all is great he's been great forever(really? less than 3 mos and my brain is all up on forever) I know this doc is gonna drop some meds, so long to the combo, all is well he'll probably even do his homework without nagging(yeah that is really when I should've realized I was in fantasy land!LMAO)

It just trips me out that no matter what I knew from research of this disease, the meds, reactions, blah blah blah my brain saw that normal result and I got on that horse to ride off into the sunset!! HA!

Seriously, though I am glad of it and hope it lasts!
 
That's what we in the cheer world used to call "Positive Mental Attitude". Very important and half the battle with this disease. Now put your wine away! Or at least invite me to the porch and share!
 
Girl, I say come on down and I will share...what a shameful statement..."Put the wine away." You got a fever?
 
I know I feel like I need to set up some type of intervention!!! Or would that be a reverse intervention? Either way, you are Italian, and worked in the wine industry at some point, right? Plus, you have children so I'm fairly certain "Put away the wine" should never pass your lips!!
 
:lol2::lol2:
Like that fact its Friday makes any difference
I thought it was ok only on days ending in "ay"
 
You guys are cracking me up! Yes I am in the wine industry and all my references to it here are just an evil attempt to boost sales:hallo3: Not that you girls need persuassion...wish you all lived in my territory.

Still at swim practice but as soon as we get home :beerchug:

Dusty we need a wine glass smiley...not that I have anything against beer but I don't sell that!!! And it is fattening!
 
This is my favourite...

drunk_smiley3.gif


But that implies you are all pissed, so...

winesmiley.gif


Thoughts? David, Crabby? Anyone?

Dusty.
wine_toast.gif
 
Wait...what? Pissed must mean drunk over there...here pissed is mad and that fella seems far from mad!!!

I love them all!!
 
Ah I come from the land of many meanings. :lol:

You can be pissed (angry) and pissed (drunk) at the same time! Hmmm nothing worse than an angry drunk...so a pissed pissed! :ylol:
 
I love this thread!! Made me smile!!
Clash, I can so relate to all that you said...everytime Brian gets his numbers back to normal I'm thinking, "What drug can we drop?" We just want the crohn's to be gone (by itself!)
 
Raising hand !!!!
I have tried to drop meds since DS was an infant .
Never works
We just keep adding new ones
His med sheet ( always by the door) is almost one page typed
 
I think you put that out that as a goal as soon as we get normal bloods, scopes, FC or what have you then it's like okay we are good, we made it. Everything is okay now, life is good and yes it is but I have to constantly remind myself we are here because of all the things we are doing.
Hope it continues for the next 30 years, 50 years, 70 years well pretty much forever! Now I'm going to go have a glass of wine and sit in the backyard and read. It's 8:00 just double checked Jack has everything packed for camp tomorrow morning, he needs to be at the airport at 7:15am and I'm ready to relax
 
Clash,
Happy to hear good news! Totally agree with the fairyland dreams!
Dusty,
Love the new wine emoticons!!!!! Awesome!
 
Gosh, Clash, I'll room with you in that fairy tale castle!! :lol: (assuming it has an awesome wine cellar!!;) I still can't even really wrap my head around that Stephen will be on remicade (or any med) forever! ... Every apptmt, there's a little, little voice saying 'this time he's all good, maybe there was a mistake and he needs nothing!' :) Guess that little hope never really disappears! :)

But, :dance: woohoo :dance: on the results!!! That such really good news!! I hope it lasts a super, super long time!

And, Dusty... we're pissed when mad and pissed when drunk too! :beerchug:
 
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Fairytale dreams are good!! So glad C is doing better!!

Loving the wine emoticon :D. Defp with Dexky, beer is the way to go!!; :D xx
 
My wife makes sangria…not a fan!! Oh, it's ok but it isn't as good as a Sam Adams Summer Ale!
 
Oh my gosh! There was a time hubby's company was going to move us to Germany. We stayed in Munich across from an outdoor market. At 11a.m. lines started forming for sausage sandwiches and beer I thought it was crazy until I tried it. HAHAHAHA left totally addicted (I know that doesn't surprise anyone here). Nothing like German beer! I guess it is a good thing the company changed their mind!
 
I'm so totally with you - balancing from "Yea! Good news! Now everything is going to be perfect forever" to "Has she ever gotten remission? What do you mean she's in remission? She still has to drink 6 cans of liquid vomit everyday to gain weight and won't eat much solids. You people don't know what you're talking about!" I think I like living in the castle better and we'll let reality hit when it does because I just get tired of worrying about it. Got room in there for me? Besides, I'd really like to quit my job and just be a mom and wife and forget there's a world outside my doors at all. I think castle-living would suit me well...
 
LMAO...you guys are hilarious! It's like a running comedy show! I think this could be a money-maker!!
 
...and in the castle, for your entertainment pleasure, you can watch the "Dusty and Dex Show", 24/7. Every room is equipped with translation guides, wine lists and a beer of the month. Dreams do come true!
 
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Mehita said:
...and in the castle, for your entertainment pleasure, you can watch the "Dusty and Dex Show", 24/7. Every room is equipped with translations guides, wine lists and a beer of the month. Dreams do come true!
Click to expand...



Thank God I don't watch TV.:lol2:

Please dear Clash put my room over looking the garden and close to the play yard.:smile:
 
kimmidwife said:
Ok Dusty, go root a boot? I never heard that one what does it mean?
Click to expand...

(((cough))) Well coming from the land where words have many meanings...

I found this perfectly acceptable definition on a reputable online dictionary. :lol2: Root is a slang word...

Root (verb and noun) : synonym for f*ck in nearly all its senses: "I feel rooted"; "this washing machine is rooted"; "(s)he's a good root". A very useful word in fairly polite company.
Click to expand...

So telling Dex to go root a boot I know you can now guess what I expect him do with said boot!

Ha! If you listen to Dex it is probably the only bit of action he is getting anyway!

Dusty. :)
 
kimmidwife said:
Ok Dusty, go root a boot? I never heard that one what does it mean?
Click to expand...

I was afraid to ask, and now reading the above definition of root I can understand why!

If we're taking reservations for the castle rooms, I want mine on the ocean side so I can hear the waves, watch the whales and go tide pooling to get fresh air...
 
kimmidwife said:
Ok Dusty, go root a boot? I never heard that one what does it mean?
Click to expand...

Thanks Kim! Thanks a lot:ymad:

My Red Wings never have a headache, they never need to be reassured, they never ask "do these new laces make me look fat?", they never complain about my sweaty, stinky feet…they let me walk all over them and if I were compelled to root one of 'em, they'd have no qualms whatsoever about it!!
 
What the heck is a choot and what have we done with poor innocent 16 year old C's thread. I sure hope he doesn't get curious one day and comes on here looking at his threads!
 
Chook cic chook!

A chook is a chicken! Hence my dismay at Dexky's literary piece. :( :ylol:

(((sigh))) Who will sign up for Aussie slang 101?
 
DustyKat said:
Chook cic chook!

A chook is a chicken! Hence my dismay at Dexky's literary piece. :( :ylol:

(((sigh))) Who will sign up for Aussie slang 101?
Click to expand...

I'm afraid to sign up for any class by Dusty on Aussie slang. I am better off not knowing!
 
Ok guys, I think I posted on MLP's thread about C having a persistent cough. He is spending the summer at his Dad's house and has a job so I have only seen him for this last GI appt. His aunt told me about the cough and I assumed allergies but when I heard it myself I wasn't so sure.

Being as he is two hours away(town I grew up in) and has a job juggling appts has been a nightmare. I called the GP I used when down there and they fit him in today.

C just called said doc said chest sounded clear,
gave his some kind of steroid down his throat(?)
and px'ed him singulair...
but the doc kept alluding to him being on MTX and it possible being a result of that.

I'm going to let GI know about new px and what GP said and if the singulair doesn't clear up the cough I am assuming we'll be going for xrays? or is there a specialist we need to see?
 
Awwww, come on Carol!

Just think how it will broaden your horizon's and impress your friends!
crikey.gif


Dusty.
bth_australia.gif
 
Lung problems can be a side effect of Metho Clash.

I imagine they may do X-Rays or a CT to confirm if he has an issue associated with he Metho or anything else that may be an underlying issue.

I don't know if the Metho proves to be the problem that he would be referred onto a pulmonologist. I assume stopping the Metho will resolve the issue??

Sorry I can't be of more help Clash. :ghug:

Dusty. xxx
 
Ok so just called the GP nurse to see what all was discussed since C only gave snatches of info. She said the doc really questioned him about the MTX because there can be issues with lung problems but doesn't think it is the culprit.

Apparently he px'ed a cough med and also the singulair, if the cough persists then he would send him for xrays and I would need to get the GI to refer him to a pulmo up here. The nurse said the doc felt confident that these meds were going to do it's thing, fingers crossed!
 
CarolinAlaska, no worries you can have the ocean view, we just have to make sure CIC gets either the vineyard view or near the wine cellar!
 
xray would check for many things including whooping cough which tends to present as a mild cough in those who have been immunized but are on immunosuppresants.
 
I'm learning something new everyday. I sure hope the cough is just a summer cold/allergies. I'd hate to think it another med side effect - MTX pneumonitis! Ick! Why can't they leave us to happily live in our castle without telling us things like that. I choose to look out my oceanview window and remember that it doesn't exist! "They" just don't know... Hmp!
 
Heck yeah! Room next to the lounge please! And sign me up for Dusty's class. My life's ambition...to graduate valedictorian in Aussie slang.

Now, why may I ask was that boy out of his bubble?! We have a weird cold thing that went around up here. Lasted short time but it ended in an awful cough that goes on forever. It is just leaving me after about 4 weeks. Funny, O never got a hint of it even though her two sisters, grandmother and I had it. Immune suppressed my arse! I hope this is what C has.
 
That was why Jack was pulled off MTX he started this deep hacking, horrible cough it was just awful, brought him to Ped (who has since retired) and he listened said he has bronchitis prescribed albutirol and sent us on our way, a month later Jack was still coughing and we were at a GI appt and he started coughing and GI asked how long it had been going on told him a couple of months and he said we need to pull him off the MTX immediately (never had xrays done though). Hope it is just a cold/cough
 
Clash, just looked to see that your son started mtx 10/2012. Does a mtx cough come that long after starting it? Or would it be within first month or two. Did your gi talk about that?

Jacqui, this may be something you could add your input on too since Jack had this problem. How long being on mtx?
 

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