# Cimzia Newbie !



## Crohn's Mom

So today was the day Gab started Cimzia !

I was so nervous about it, and she was so excited.  I can understand her excitement; it's a hopeful window into a new, healthy life !
I just didn't want to have to give her the injections; I always feel like I'm the one who has to play (bad guy).
Well, she completely surprised me and the nurse....She did it on her own the first time! WOW ! The nurse helped her to guide the first one in and make sure she was doing it correctly.  Then she did the second one all on her own with no problems.

For those of you that don't know, Cimzia is taken once a month, with 2 injections.   Gab chose to do them in her stomach (which also surprised us!) instead of the thigh; but you can do them either way, or one in each.  It is the patients choice.

Today was her first dose of the "loading doses".  She takes the 2nd round in two weeks, and the 3rd two weeks after that, then once a month.
So far there are no ill side affects and she feels just fine except she is quite tired now so she is napping for a bit.
Oh, and she said the injection didn't hurt a bit ! We warmed the syringes to room temperature for around 10 mins before administering.  And, she didn't use a cold pack or anything on her injection site before hand.

I thought I would start this under a new thread for the parents of children who may be considering taking this, or are taking this.  Maybe we can help each other !
I know I probably should have posted under the "treatments" thread, but I also know most of the parents come here for their advice and support.

I suggested to Gab that she keep a daily journal for a while of any side effects, feelings, symptoms, etc. So that possibly she can help others who are considering Cimzia since it is so new to Crohn's ( I believe it's only been 2 years since it's been started for treatment of Crohn's)

Anyhow, It's a great day so far here at our home !  Fingers crossed that this will be her wonder drug and she can begin a normal healthy teenage life ! :hug::hug:


p.s. I had no idea which "icon" to use for this thread :lol: I hate the word "drugs" but it seemed about as fitting as I could find in the choices :lol:


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## Welsh-bird

Fab news T. Am so pleased that it went well for Gabs. Hoping that it bring's years free of pain and disease. She sure deserves it!!
Love n hugs, And xx


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## DustyKat

Oh T, excellent news and BRAVO to Gabs! I bet you never cease to be amazed by the fab things your girl can do, and believe you me hun, it won't end any time soon either! :banana::banana::banana:

I am hoping and praying more than anything T that this is the break Gabs so justly deserves...

:goodluck::goodluck::goodluck:

Hey, is everything still on track for college? Hmmmm, sorry, probably the last thing you want to think about right now! :eek2:

As to the drug thing...get outta here T, it is a drug! and anyway, you've got better things to stew over! :ylol2:

Loads of love and hugs mate, :wub:
Dusty. xxxxxxxx


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## Dexky

I don't know squat about Cimzia T!  But I'll gladly follow Gab's journey with it!  I hope it offers many years of boring updates!!


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## Crohn's Mom

I hope I am not jumping the gun here by telling this great news...but I am going to do it anyhow.  That's the point of all this right , the ups and the downs so people have an expectation of what to possibly expect ??

Gab came in to my room around 11:30 last night before bed and says; "Mom, you might think I am crazy for saying this, but I want to tell you something."
I said OK?? then she says...." I don't know how to explain what I am feeling, or what is happening to me already.  And is it even posssible?"  I'm like, what ? what ? what is it??
she says...." Mom, I feel, ummmm....NORMAL !! I feel so good right now and I don't know how to explain it !!"

And the tear drops rolled and I didn't know what to say except smiles, and smiles, and tears of joy and I LOVE YOU !!

May it keep on keeping on !! 
Is this really happening so fast ? Less than 24 hours after years of pain and agony ???
Oh how I hope so !


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## Crohn's Mom

Ahh Dusty I was so excited to write the above that I forgot to answer you

Yes, everything is on track for College! We have paid deposits, and registered for Orientation in July.
I am so glad we just kept on going as if nothing was stopping her.  I would be kicking myself pretty hard right about now if I put things on hold because of the "un known" !!:biggrin:


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## DustyKat

:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::banana::banana::banana: Yee Haw T. To say this is fab to read is a bloody understatement!!! I am so, so, so, so, so, happy that I'm crying!!! I don't know one blessed thing about about Cimzia so I'm talking through my bum, but I reckon YES! it is possible!

Oh man T, and the whole college thing, well I am bursting with happiness. Your baby has been through so, so much and to read that she is FINALLY getting relief and the life back that she so justly deserves, it's almost hard to believe! 

(sniff), (sniff), now where's that bloody tissue box...:lol:

:mademyday:...BIGTIME!

Dusty. :wub:


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## Dexky

OK, that wasn't boring at all!!  I'm so happy for Gabs and you too Tracy!  Now we just got to get you and JJ straightened out!!  Hopefully, less stress over Gab's health will be just the medicine you need!  It's bound to help!


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## Welsh-bird

Fan bloody tastic! Long may it keep on keeping on...
I have everything crossed for you both xxx


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## Crohn's Mom

Awe thanks everyone ! 
I am on cloud 9 and I plan on staying there all weekend! :ylol::ylol:

Gab left to go have dinner with her Nana and Papa tonight, and she said she may even stay over for the night with them ! 
I LOVE NORMAL !! :Karl:


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## DustyKat

Oooooo, I love normal too! Maybe we can start a...The Normal Things My Kid Did Today...Club! :lol:

:mademyday: T!

Dusty. xxxxxxxx


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## Crohn's Mom

Day 3 of Cimzia and all is still positive!

I will say that Gab was extra tired the first two days; kind of in a bit of a fog off and on.  She took some extra naps and it basically took care of it though.

Today when she got out of the shower we noticed that her skin is not as inflamed as usual.  After coming off the prednisone she developed severe itching all over her body, and then a "rash" (we like to call it psoriasis...who knows tho! :ylol
Anyhow, the rash is definitely getting lighter, but more importantly the itching is getting less severe!  She was taking up to 4 Benadryl a day, plus an Allegra 24 hour Allergy pill every day.  She will continue the Allegra for a while, but yesterday she only took one Benadryl, and today none so far.

Her energy that she is displaying is nothing short of amazing to me!  Even the dark circles, that became a permanent fixture under her eyes, are beginning to lessen!

Great news so far all around ~ We have nothing negative to say about Cimzia so far!
Yippeee !!! 

I sure hope these little updates help somebody, some day, and they can ease a worried parents mind :rosette1:


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## AZMOM

T - That's ALL good news.  I'm so glad for Gab.  Three cheers for Cimzia and even a couple thrown in for her Momma.  :-D

:medal1:

Hugs,

J.


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## DustyKat

Excellent news T! May it keep on keeping on hun......forever! 

Much love, :Karl:
Dusty. xxxxxxxx


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## Dexky

I hope everything's ok T!!  You sounded down in your other thread

Please, anyone who sees this, please donate a brief post!!  All we need is fifteen more so we won't have to look at those freaky^^^^^ dancing cats anymore!!  Please!!


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## DustyKat

Hahaha, sucked in Dex. Now, if you hadn't mentioned it then the cats may never have appeared again... but now I'm not so sure! 

Dusty.


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## Crohn's Mom

Day 6 and all still seems to be going well.

Her energy has died down a bit today, even after sleeping around 12 hours last night.
Her eyes seem to be a bit darker today as well.
Also, she can't seem to get enough to eat ??
She has eaten 3 meals already today and still feels "hungry" and worn down she says.

Other than those few things, mostly all is still going great with her.  Hopefully it sticks around!  I'll be interested to see how she feels after the loading doses are done, and she's on a regular schedule.

The nurse did tell us that if we find doing both injections, once a month does not seem to "last", then we will have the option of doing 1 injection every two weeks instead.  We have a while to go before we have to decide that yet.

I have no idea if these are a "Cimzia" thing or not, but I just want to put the little things in here for others' future reference.

Hope everyone's having a fantabulous day! I am trying to keep myself busy planning Gabrielle's graduation party for this Saturday ! I can't believe it's happening....my baby is graduating ! :ywow::ywow:


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## Crohn's Mom

this post is just for Dex to bump the creepy kitty's out! :rof::rof: (even though I think they're creepy...I like them!) :rof::rof:


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## DustyKat

You seriously think numbers is going to stop me! 

I hope the hunger and fatigue are just a passing phase hun, fingers, toes and everything else crossed mate! 

Ooooo, I love a party! Frantically checking my letter box for my invitation, it hasn't arrived T! Oh well I didn't get one to Will and Kate's wedding either...boo! ahahahaha

Have a lovely evening hun....

Much love, :Karl:
Dusty. xxxxxxxx


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## DustyKat

Oh yeah T,

I put a thank you post, in the remicade thread on this forum, to all you guys for putting down your thoughts and experiences about your kids on the biologics. I truly can't thank you all enough for taking the time and effort to do it.

Lots of love, :wub:
Dusty. xxxxxxxx


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## DustyKat

Congratulations Gabs and well done!!! Have a fab day T and savour every lovely moment hun...

Loads and loads of love, hugs and good wishes,
Dusty. xxxxxxxx​
I know, I know......but it is Saturday here! :lol: Yikes, I hope the world doesn't end!


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## Crohn's Mom

That ^^^^^^^^^ is THE best post ever ! IMO :rof:

Thanks Dusty !

And hey...if you're in the area....pop on by the party you're more than welcome! Who needs royalty invites anyhow....


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## Dexky

Don't encourage her T!  She'll have all that bling on every post!!  It's distracting!!

She has promised to e-mail me if the world ends today!  I'll be sure to let you know!


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## Crohn's Mom

Well this is day number 9.

Gab has been extra fatigued the last two days but we are assuming it is because she has been very active lately in preparation for her graduation.  We agreed yesterday that she probably needs to just go ahead and sleep Monday away 

She has also developed a swollen lymph node in her neck that is painful.
I did post a separate thread questioning others on their opinions because it has made me quite nervous.  I'm sure my first thoughts are a bit over-reactive, but the bottom line is that these biologics can possibly have some very serious side effects.  In my opinion we can not be too cautious, and better safe than sorry!

I will be sure to update after I speak with her doctor about this 
Hopefully it's just a slight response to her body fighting off a little infection coming on or something.  Keep your fingers crossed please! 

By the way...Her graduation party was a huge success! 45 people showed up and Gabrielle said that is was hands down THE BEST day of her life and she thanked me  profusely ! :ylol:


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## Dexky

Congrats Gabs and proud Momma too!!  Will be thinking about you guys T with everything crossed!!


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## AZMOM

LOVE that the graduation party was great.  JUST what you all needed.  Yes I"m YELLING today.  lol lol lol

Yay for Gabs!

J.


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## DustyKat

Thinking about you T and hoping all goes well with the appointment today...:hug::hug::hug:

That is so fab about the grad party, well done Mum!!! I know it is more than thanks enough to see your baby so happy but how great is it that Gabs acknowledged all you have done so emphatically! YAY! Your a real sweetheart Gabs...:rosette2:

Much love, :Karl:
Dusty. xxxxxxxx


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## Crohn's Mom

Ay yi yi ...We all know how much fun the waiting on the return phone call is...:stinks:  
This is one of the big down falls about her doctors being over an hour away...but hey, at least I don't have to fly to Syndey right! 

Waiting....waiting...waiting....

Meanwhile I woke Gab up to see if she had any other things for me to report while I was at it, and thankfully she said no.  
Well, she mentioned her sprained ankle LOL.  She wore tall heels for her friend's graduation Friday night and twisted it.  It still hurts like the first night she said, poor baby.  
She also said Oscar woke her up at 3 a.m. being a very bad baby boy and made a mess all over everything! I'm so glad she has such a positive attitude about everything, because I think I would have a few choice words for _Oscar_ and really tell him how it is ! :lol:  My sweet girl certainly hasn't inherited her mother's sailor mouth! :rof:


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## DustyKat

Any news yet T?

Dusty...:hug:


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## Crohn's Mom

Would you believe they never returned my call today ! 
Oh of course .. we all believe it ! LOL
Argghhh...at least she already has an appointment tomorrow for her yearly physical so I will have her pediatric GP check it out.
Damn docs !


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## AZMOM

Tracy - 

AAAAAAAAAHHHHHHHHHHHHHHH!!!!!!!!!!!!  I'm pissed on your behalf.  As if you need my pissiness.  ;-)

Love you - keep us posted - 

J.


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## DustyKat

BULLS***!!! That's sucks so bad T!!! :voodoo:

Good luck with the appointment today hun, everything crossed that all is okay with your baby...:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx


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## Crohn's Mom

AAAHHHHH.....A little validation from the nurse never hurts :ybiggrin:

I was right, and the message was lost in translation some where.  The GI's nurse from Mayo just finally called me back.

I told her I felt kind of stupid for calling her over one lymph node, but that is what my understanding was that she wanted us to do.  She said do not feel stupid for one second and I did the right thing and they NEED TO KNOW these things so they can keep track.

Since Gab went to her pediatrician yesterday and he couldn't feel the node then she said she is willing to not make us come up there.  She said we can go ahead and do the injections that are scheduled for this Friday, but we have to keep a very careful eye on the spot that hurts and any other new symptoms that may arise.  If the node changes, gets bigger, more painful, etc..then she said we will probably have to stop the Cimzia. 

So, I guess I wasn't over reacting after all, and it seems it may be more serious then I even thought it was. 
Hopefully it's nothing and she can continue the Cimzia long enough to at least see what the full effect will be for her.
Here I go crossing my fingers and toes again!


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## DustyKat

I'm right there with you T! I have everything crossed, eyes included, that the lymph node was just a rogue and it will now behave itself for the duration! 

:goodluck:  Gabs!!!

Thinking of you all, :hug::hug::hug:
Dusty. xxxxxxxx


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## Dexky

T, I hope the node was just an unrelated anomaly!  I know the Cimzia has given you and Gabs much to be hopeful for!


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## Crohn's Mom

I went to get Gab's injections out so they could sit at room temperature for a bit....
She informed me that it's not time because we have to wait for the friends to come over to watch! :ytongue:

LOL I just thought that was too cute not to share!

I'm nervous about doing them ourselves; and she's inviting friends over and making me wait even longer ...hahah.:ylol2:


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## DustyKat

Hahahahaha T...Let's have a party! Way to go Gabs! :thumleft:

Much love, :Karl:
Dusty. xxxxxxxx


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## Crohn's Mom

Well it's been a little over 3 hours since the injections and Gab's starting to hit the wall of exhaustion :ywow:
I guess this will become the "norm" on injection day ? 
Also, about a half hour after the injection she started to get some major stomach cramping all around, but it went away rather quickly ~ Thankfully ! 
It did scare us both a little though :blush:

I'm glad I asked her a few days a go not to make plans for this evening just in case.

She did the injections all on her own too! After the first one was taken out we realized that she didn't finish it, so she ended up having to stick herself again to finish it up.  She's weird though and likes doing it so she thought it was quite cool that she got 3 sticks instead of 2! :biggrin:  Only her ! LOL


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## Dexky

And I whine over a flu shot!!  Good for Gabs!!


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## DustyKat

> And I whine over a flu shot!!


OMG I don't believe it! I thought you were a knight in shining armour, my world has come crashing down Dex! 

Oh well done Gabs! :medal1: I hope things have settled T and Gab is feeling better when she awakes...:hug:

Dusty. :wub:


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## Crohn's Mom

It's starting to look like we have a pattern with the injections already.
A few hours after injections comes pure exhaustion.
The next morning she is literally bouncing off the walls with energy !
Then by the evening she hits the wall again.
At least this time she is listening to her body and is relaxing and reading.
(actually, I don't think her body is giving her a choice!)

The only new thing we have noticed this time is some pretty bad bone pain...down to the bones in her fingers hurting.  Poor baby 
I gave her some T3 and a Flexeril in hopes that it calms for her tonight.
I don't know if it's the Cimzia or not, but to me it must be because all this pain wasn't there before hand, just mild.

Other than that...it's smooth sailing


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## DustyKat

Oh T, I hope all settles down for your baby and the bone pain is just a passing glitch. Gabs never ceases to amaze me hun, what a wonderful young lady and role model she is!

Loads of love and hugs...:hug:
Dusty. xxxxxxxx


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## Dexky

Are these problems listed as possible side effects?  As long as it doesn't get progressively worse, I could imagine Gabs being willing to give up a little productive time to keep her Crohns at bay.  Hang in there Mom and Gabs!


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## Crohn's Mom

Yes, Dex I believe the fatigue is a possible side affect of the Cimzia, and I have read other stories on the adult thread of just about everyone who takes it gets it for the first day or two.  So, yes I think Gab is more than willing to put up with that aspect.
The bone pain is better this morning.  She's still determined to go get her hair done and play some tennis today thinking the exercise will help...so...onward and upward girlie! 

I'm not freaking out here...but there is another lymph node this morning she said she woke up with.  It is at the base of her hairline on her neck.  The other spot isn't hurting as much now, so I am just going to watch and wait with this one as well and thinking it will just disappear as well.   There are a ton of different reasons why a lymph node can swell and she could have just picked up a little virus recently. After all, she has been around so many people and busy busy busy


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## Welsh-bird

Hi Tracy- just catching up here again.
Good to hear Gabs is feeling better today.... and tennis??? Where does that girl find the energy- please bottle some and send it to me!!
Hoping too that the gland issue resolves itself- you're baby really is one fighter!!
Hugs xx


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## DustyKat

Just a thought T and something you might like to discuss with the Dermatologist/GI...

Is the psoriasis causing the swollen lymph nodes? 

Dusty. xxx


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## Crohn's Mom

Interesting Dusty....

I'll have to look in to that, as I didn't even know that was possible :confused2:

thanks !


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## Dexky

T, I hope the node is shrinking by now!  Did she make it to the tennis court?

PS, this is the best avatar pic!  You are both FL beauties. I'm assuming you are the more tanned one!


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## Crohn's Mom

Awe shucks *blushing* thanks Dex :hug: 
I am the one with the blonder hair lol I am not tan a bit any more...the sun does not like me so I try to stay far away now ! :lol:  That picture was taken about 2 years ago at a concert Gab dragged me to; I ended up loving her music tastes though...  Kings of Leon ...I'm a big (old) fan now ! haha


Unfortunately, the lymph node is still there and no mistaking that it is palpable.  
She left early this morning to go to her aunts house (an hour away) for a shopping day, and to spend the night.  So of course she texts me after she gets there to tell me she has a "cold" today. (scratchy throat and stuffy nose), and her bones ache still.  Lovely...I guess this is a pre-trial run for August when she moves away for college and I get to sit home and worry because I can not "see" her. :lol:  She promised to let me know if she starts running fever or feels worse though 

And, no she did not make it to play tennis.  She went with her friends to get her hair done and she said it was just to hot out side to bother.  I don't blame her .. who wants to mess up a fresh "do" by playing tennis in this awful heat ! :lol:


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## Crohn's Mom

Just an update:
The lymph node is still there and palpable, and another one has popped up close to the same area.

So, I have a theory :ytongue: just a theory:
She had the CT scans done of her neck and spine about 2 weeks before she started Cimzia.  The only thing the one of her neck showed was that there were 
"several small lymph nodes in the patient's neck bilaterally most likely benign by CT criteria and not adequately characterized by this technique"
I know from her experience that lymph nodes are quite common in CD (just not sure of the medical reasons for this).
Anyhow, my theory is that the Cimzia has just brought these lymph nodes, that were already there, to the surface and that they're probably nothing to worry about, so I am just playing the watch and wait game.

Like I said, just a theory, .. so any thoughts on that ? 

Other than this issue, and the skin issues, her little cold is already gone, and she's feeling amazing and just being a busy busy girl and enjoying the hell out of her summer break!


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## Dexky

I like your theory though I wouldn't have a clue as to it's accuracy!  It sounds benign and I like anything that is benign

I think(hope) the best indicator is Gab's energy levels and general well-being!!  That sounds great!!!


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## AZMOM

I'm just THRILLED she's having a good summer. Heaven knows you all have EARNED it!!!!!


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## Crohn's Mom

Well, we have a new update :
I'm not putting this here to complain about it , just to inform about the possibilities of Cimzia.

It is 5 a.m. here and Gab and I have just returned from a visit to the local E.R.
She came in around 1 and said she felt like her skin was on fire and she was itching like mad!  So I gave her 2 benadryls and asked could I please see her back, because this is usually where the hives are.
She quickly informed me that it isn't just her back any more.  That "spot" on her butt that I thought could possibly be a fistula has dramatically changed into red blisters... and a lot of them! She also has rash and hives every where, and a few other spots with clusters of blisters. (OH how I wish this girl would learn to complain sooner !!)
I convinced her to go the ER since it is Friday evening and we can't get ahold of her doctors until Monday.
The ER doctor suspects that she has possibly re-activated her chicken pox or shingles.
He sent her home with some Atarax for the itching, and also some anti-fungal medication.  I am too worried to give her the anti-fungal though because I am not sure of the interaction since she is on Cimzia.
I am also wondering ( and here goes another one of my theories ) if the HPV vaccine she received a couple of weeks before she started Cimzia could be the culprit here.  (again...just my theory).
So, I guess we wait till Monday and see what her GI has to say, or wants to do.
Poor girl...I can't believe she let it get this bad and still didn't want to complain.  I had to beg her to go to the ER once I saw it.  ARGGGHHH.

edit:  I had to actually explain what Cimzia was to every hospital employee we came in contact with...including the doctor ! :ywow:


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## Dexky

I don't know what to say T  I just wish you and all your kiddos would get a long break from it all....like maybe a lifetime!!


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## DustyKat

Godammit T! This is so bloody unfair! :ymad:

I don't know that the HPV vaccine would be the culprit here T. It is for the wart virus not the zoster virus. I think that Cimzia has the potential to trigger the dormant chicken pox virus, causing shingles in some people. Was it an anti viral medication they gave Gabs, something like FAMVIR? 

Roll on Monday! It doesn't exactly instil faith in you when you know more than the docs! And in the meantime I hope Gabs can get some rest and relief, poor love, and Mum too!!!

Lots a love hun, :hug:
Dusty. xxxxxxxx


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## Crohn's Mom

the medication is called Acylovir 400mg ??

does anyone know if it's ok to take with Cimzia ?


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## DustyKat

Hey T,

I have looked on a couple of drug databases and I can't find Acyclovir (Zovirax) listed as a known interaction with Cimizia.

This is an extract from a Rheumatoid Arthritis website about Shingles and Cimzia. They suggest obtaining medication to treat the rash so I would imagine they are speaking about the anti virals like Acyclovir:




> Shingles
> 
> 
> Shingles can occur in individuals who have had previous chicken pox, as the virus that causes it can remain in nerve cells in a dormant state. Shingles is reported to occur more frequently in patients on anti-TNF although less so in patients on Enbrel than with Remicade or Humira. It is not yet known how frequently it occurs in Cimzia treated patients but it is assumed that there may be a small increased risk. In the event of an itchy, painful blistering rash of shingles type occurring over one area of the body you should report to your GP as soon as possible as there are medications which can help settle it down if taken early. Your rheumatologist or GP will be able to advise on whether Cimzia needs to be stopped temporarily as in the case of other infectious complications.


It's a hard one to decide on. I know it is the weekend but is the hospital where Gabs had her op where the GI is located? Do they have a colorectal ward with on call GI's? If so I would ring and ask their advice. 

Good luck and keep us posted hun!

Much love, :Karl:
Dusty. xxxxxxxx


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## MomofIBD's

Dam! Oh T. & Gab!!! I am with Dusty on this! I have seen shingles a lot because of my work. It is very very itchy & hurts too! It is not uncommon to find it in " the underware area " ! As for the med interaction call a pharmacy & talk to a pharmacist tomorrow!!! Even look on the net for the number of the maker of Cimzia call them! I will look around & see what I can find on the net!


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## MomofIBD's

Dusty you beat me to the punch! Good going! She is right they have Dr's on call! That's why the Doc's get paid big bucks! I would consider this a time you need to call the GI ASAP! Shingles is nothing to mess around with. You might even mention them bringing an infectious disease Dr. in on this! 2 minds are better than 1! They are a world of good info!


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## Crohn's Mom

Thank you so much Dusty and Mom! 

I swear my life is a bad science fiction move ! :ybatty: 

I really want to give her the med, because as you can imagine this rash is awful!  Maybe I will try and call Mayo tomorrow and see what they have to say.
To top it off she's having abdominal pain as well ... enough that I had to start giving her pain meds again 

Ahh...what are ya gonna do right...tis the life of good ole Crohn's...always keeping us on our toes ! 
:ghug::ghug: to everyone !


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## MomofIBD's

T. remember that Mayo is open 24/7!!!! 
Hugs to You & Gab! Your whole family! 
I hope the night goes by uneventful & Gab is able to get some rest with less pain!

:ghug::Karl::ghug:


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## Dexky

T, how you guys doing this morning?  I hope things settled and you got some sleep!  Were you able to speak to anyone about the meds?


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## Karissa

Tracy,

I'm so sorry about last night's episode! I really hope the Cimzia works for you guys. You are an amazing Mom. I enjoy reading your posts a lot because they remind me of my Mom during endless Crohn's crises. 

Oh, and it doesn't surprise me that the ER had no idea what Cimzia is. I tried it when it first came out, and I was the only person at my hospital taking it at the time. And, the nurse accidentally injected it in my arm when she wasn't supposed to because she had never done it before. Not fun. It's becoming more and more common though, and I've heard positive things about it, so fingers crossed!

-Karissa


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## Crohn's Mom

@Karissa....thank you so much for your kind words 
And, I can't believe you were injected in your arm! OH MY ! 
I totally understood when the triage nurse, and then the ER nurse did not know of Cimzia, but when the doctor came in and he didn't have a clue, and I mean NO CLUE, I was a bit put off to say the least...seriously, he could have just Googled real quick or SOMETHING! :lol2:

We didn't call the Mayo yet.  Maybe that was a stupid idea, but she didn't want me to.  The rash hasn't spread more, and the Atarax is helping with the itching for now.  So instead we loaded up everyone (9 of us) and headed off for a fun and relaxing day at the beach! I am so impressed with Gab I tell ya....she recently bought a tank-kini because she wants to spend some time this summer on the beach.  She simply used one of the tube tops I bought her under it to hold Ozzie in place, and was perfectly comfortable laying out, reading her book and relaxing by the pool today. (despite the visible rash).  She never ceases to amaze me.
Don't get me wrong though...she really doesn't feel good at all.  I'm getting a bit discouraged about the Cimzia for the first time now.  "Something", besides the rash, is just not right.  I don't quite know how to explain it.  She's very quiet again, stomach pain, tired, etc.
I will definitely be giving her GI docs a call first thing in the morning.  The way we figured it was that even if it were her GI doc on call this weekend, what could he have done really?  So we just decided one more day wasn't going to hurt anything, and if she got worse we would just drive up there to their ER.  Glad we didn't have to. 

Hope everyone is having a fabulous weekend.  I have enjoyed my sister and her 3 little one's be here so much.  I will be a little sad to see them go on Tuesday, but life goes on.

Thanks so much !
~T~


----------



## DustyKat

Awwww T, that is so fab that you have had a great time with your sister and her kids. And that Gabs got some time to relax and enjoy herself! YAY! She is just so deserving of every piece of normality she can get her hands on! 

Oh my hun, I so hope the Cimzia isn't the reason why your mum radar is starting to ping. Everything crossed mate! 

Thinking of you and much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Just a short update:
Talked to the GI nurse today and we have a 60 min appointment slot scheduled for tomorrow.  Hopefully we can figure this out! She did say that it does not sound like Shingles to her because the rash is so scattered all over Gab's body; and she couldn't believe the ER doc didn't order any cultures on the blisters! 
So hopefully tomorrow we will have some answers as to why Gab is feeling so yucky, AGAIN


----------



## Karissa

Keep us posted Tracy!


----------



## Crohn's Mom

What a long, long day at the Mayo today...:ybatty:  At least we have some answers.

Her rash is not shingles.  It is ... MRSA !!  Ugghhhh...my poor girl 
So, we have to stop the Cimzia for a while until they have the infection under control.  They started her on doxycycline and a prescription body wash for 2 weeks, and then she will go back to be checked again.
The GI nurse couldn't figure out what was wrong so she made a few calls and got us into a dermatologist while we were there.  Thankfully she did because he was booked solid through August ! He is actually the one who diagnosed it.
Also, he had to remove her new nose ring because he said the infection is in her nose...and may have started there, but he's not positive of that.  So her one little rebellion in life was just taken away...she wasn't happy, but she agreed it was for the best.
He asked her where she got it pierced at...she told him...he asked how clean it is there...she said, oh really clean!...he then said, sweetheart, is it clean enough for a young lady who has severe Crohn's disease and is on a major immune suppressant and just had major surgery? .... she says...I guess not ?  I feel bad for her, but I did try and warn her of just this before hand and she did it anyhow.  I told her today that maybe I'll change my approach now on my attempts of letting her start to make decisions on her own! :ylol:

We also saw a physical med pain doctor for her back and legs this morning, and he has prescribed 4 weeks of physical therapy.  He also checked her B12 levels and they are great...and.....ready for this....he checked her sed rate as well and it's at 3 !! Yes !!  That is amazing in itself !!  I was so happy to see that number !! 

Oh yeah, her GI nurse also said we will revisit the lymph node issue after the infection is under control.  She said they are definitely there, but seems to think they are reactive and will clear with the infection.  So...fingers crossed there !

All in all it was a pretty good day.  I was/am a bit disappointed to say the least that she has to hold off on the Cimzia, and may not be able to take it again, but if that is what is needed then that is what we shall do.  Only time will tell I guess....

My sister is gone now so I am going to enjoy my nice quiet house this evening ! :ylol:

edit: P.S. : The dermatologist did take culture swabs from 3 different blisters even tho he is pretty sure he is right  He will call as soon as he knows for sure.


----------



## DustyKat

Bloody MRSA!!! Oh poor Gabs...:hug:. It could have been their all along T, but either way, lets knock this bugger on the head! 

WOW!!! Great blood results T! I am so happy for you and Gabs. 

Oh, I will have everything crossed right along with you on the Cimzia. 

Ahahaha, enjoy the peace and quiet hun and let us know how Gabs is travelling. 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

Well at least you know now!  I don't know what MRSA is but it sounds "treatable" so I'll take it!  I hope it doesn't interfere with the long term prospects of Cimzia!  Thinking about you guys T!!


----------



## Crohn's Mom

> MRSA is a strain of Staphylococcus aureus (S. aureus) bacteria. S. aureus is a common type of bacteria that normally live on the skin and sometimes in the nasal passages of healthy people. MRSA refers to S. aureus strains that do not respond to some of the antibiotics used to treat staph infections.
> 
> The bacteria can cause infection when they enter the body through a cut, sore, catheter, or breathing tube. The infection can be minor and local (for example, a pimple), or more serious (involving the heart, lung, blood, or bone).
> 
> Serious staph infections are more common in people with weak immune systems. This includes patients in hospitals and long-term care facilities and those receiving kidney dialysis.


Here's a short, technical, run down of what MRSA is Dex....
basically, in people terms, it's a nasty staph infection that thinks it can out run antibiotics! :rof:


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## Dexky

I'm glad you added the disclaimer at the end T!!  I'm definitely just basic people!!  Whatever it is, I hope it is soon under control!!


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## AZMOM

MRSA!!!! oh t - I know she'll be fine but enough is enough already!

Love u - 

J.


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## Crohn's Mom

The lovely new dermatologist just called and confirmed that it is definitely a penicillin resistant staph infection.  It was the same infection in all cultures, which is actually a good thing.  So the meds she is on now will take care of it, hopefully, and then we can go from there.
Her face is actually already looking so much better after just a day on the meds, so we're just trucking along.

Now if those nasty lymph nodes go away right along with the infection we should be good to go with Cimzia again in a few weeks....


I almost forgot again...When we met him the other day, I was explaining to him that she has had this intense body itch since she came off of the steroids because I didn't want "all" of the itching to be blamed on just the rash.  I'm glad he understood and listened, because he is going to continue seeing her after the infection is gone and see if he can figure it out.  And hey Dex...guess what he's checking first because he asked if she has had any previous problems with her liver ??...interesting huh....
He seems like yet another great doctor at the Mayo Clinic


----------



## DustyKat

Thanks for the update T!

Thank god for decent doctors...:worthy:. The liver and itching make perfect sense so I can see why he would start there. I am just so incredibly happy that you have found this guy and that Gabs is finding relief and feeling better...:cheers:

Much love hun, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

Interesting yes T!!  But I hope there's nothing wrong with Gab's liver!  It is time for her to get some good news for a change!!


----------



## Crohn's Mom

That's where I am leaving it ...at Interesting ! LOL...she does NOT need any other issues for sure! I'm just going to assume it's a food allergy of some sort until they prove to me otherwise


----------



## Crohn's Mom

Bring on Friday ! Gab gets to start her Cimzia again...yeah !!
And, she doesn't have to 'start over' she goes straight into once monthly !

She finished her anti-biotics for the MRSA infection today and her skin looks amazing !
I think she's finally on the right road to health and remission !


----------



## DustyKat

Excellent news T! 

Sending Gabs all the luck in the world with the recommencement of Cimzia and for good health! She so deserves it hun...

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Karissa

That's great news! Good luck!


----------



## Crohn's Mom

Could someone please push the STOP button for the roller coaster ride we live on here ! arrgghhh!

Came home from work today and was talking to Gabrielle and thinking, wow, your face looks so clear and beautiful again.  Then she says oh mom by the way....I'm pretty sure the staph infection (MRSA) is back again !  She showed me the rash and where it has just started to be "sores" again 
*This sucks* !
So what next ? I wonder what the doctor will say now ??
We have an appt at the Mayo clinic tomorrow, ironically enough, to see the dermatologist for followup.  I guess I'll have to put another call into the IBD nurse again as well.

How in the world am I going to get this girl off to college in 6 weeks ?!?!


----------



## Karissa

Oh no, I'm so sorry to hear that! Keep us posted.

-Karissa


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## DustyKat

Oh man T, I am so sorry to read this...

ARGH!....Give Gab a break already! 

Good luck with the appointment mate, I will be thinking about you all.

Loads of love, :wub:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks ladies...it's just so damn discouraging


----------



## Dexky

Oh no, sorry T!!!  Just one more trough on the roller coaster!  She's bound to level out soon!!!


----------



## Crohn's Mom

I feel so blessed to have the help of the Mayo clinic..I can't even tell you!

The dermatologist is absolutely wonderful! (and he's not afraid of Cimzia or Crohn's!) 
Yes, we were right, and the staph infection has come back.  But, he doesn't think it's caused from the Cimzia itself, but from her already immunosuppressed system.  It took me a minute to process that, but I think I understand where he is coming from.
We expressed our concerns about not wanting to have to stop the Cimzia treatments and he said oh NO WAY...it's gonna take a lot more than this for us to stop it.  Cimzia is amazing, it's doing it's job for  her, and we're not scared! LOL I just love this guys sense of humor :ylol:
He does not want to continually load her up with antibiotics (thankfully).  So the plan for right now is for her her use the prescription disinfecting body wash one week before injection, and for one week after in hopes that it will hold the sores at bay.  If this doesn't work, then he will prescribe antibiotics.

So while he's telling her this, he asks if the body wash helped the first time around.  She proceeds to tell him how she doesn't know..she never used it.  Both he and I got the wide eyed stare on our face.  I just looked at her and said what ?? Then we all kind of chuckled.  I told the doctor she still thinks she's invincible even after all the hell she's been through.
His response...
"Of course she does...she's kicking this horrible diseases ass !"
:ylol::ylol:
He said he will never forget her and after meeting her the first time he went home and told his wife and daughter all about her.
Love, love, love his attitude !! 
We are blessed 

edit: I almost forgot...As far as the chronic hives are concerned. He doesn't want to put her through any allergy testing (she's had it done twice previously), or any crazy elimination diets to try and figure it out (we've done this as well...what a pain!) so he prescribed Allegra Allergy 2x's per day, instead of once per day as most people would take, and said this will most likely keep them under control.  If not, then he will reconsider his plan of action.  Works for us! She's been through enough already...


----------



## Ian

That's great news Tracy  I read this thread back when Gab started Cimzia and came back to see how things were going - I was dissappointed to find out about these setbacks but I'm really glad she can keep taking it. I like the sound of this doctor to!

And I think it's really encouraging that it works for her because, while everyone is different and has success with different meds, I got the general impression from things I've read that Cimzia has proven to be the least successful of the biologics? I don't know, I might be totally wrong, but I think I read that the reason why it's not available here in the UK for Crohns (yet, anyway) is because it didn't initially prove to be effetive enough to outweigh the risks that it carries as a biologic. So I reckon that if Gab is responding well to it, that probably means there's a very high chance she'll respond to the other biologics too (if/when she needs them). This is just me theorizing of course, but I'd like to think this bodes well for her long-term management of the disease in the future .

So apart from the MRSA is she still feeling well? Hope you can get it all sorted before she starts college, is she excited?


----------



## Crohn's Mom

Thanks so much Ian 

I'm not quite sure on the statistics of Cimzia's success.  Her doctors at the Mayo clinic are behind it 100%, however, they did not "push" this choice on us, they left the decision on which biologic to choose completely up to us.  I in turn, left it up to Gab to decide and encouraged her to research and make an informed decision.  I personally wanted her to try Remicade first because I know a lot more about that, and I have a friend who used it with great success. (20+ years remission), and it has been around and approved a lot longer.  Gab did not want to be tied down to a chair for 2 hours every time, or did not like the idea of not seeing the actual needle with the Humira pens.  We didn't realize until after that you can get Humira in a syringe, so I am sure if she needs to switch from Cimzia at some point she will go that route.

Aside from the MRSA she is thriving!  She tends to wear herself down and ends up sleeping around 12-15 hours straight at least once a week; but that is because she is like the energizer bunny now and will not stop! :ybiggrin:
She is so excited to be going off to college I'm almost taking it personal LOL.  I keep telling her I think she's just a bit too excited to leave me...
Seriously tho, I couldn't be happier with her progress.
Is she 100% ?? NO.  But I always tell people that she is at our perception of "her healthy" now and getting better every day; whereas a _normal_ healthy person with her symptoms would most likely be whining and complaining that they "just don't feel good", or "their bones hurt", etc..daily.
She is quite impressive and between her and I...I am the only one who worries about her health.  She lives her life as if CD does not exist, and if it happens to stop her for a day, a week, or a month, she continues after as if it never happened. :thumright:


----------



## Dexky

Sounds great T!!  Hope the Dermo and the Allegra do the trick


----------



## DustyKat

Hey T,

This is so, so, so great to read!!! 

It is so fab to have a doc that you have a great rapport with and you respect and trust, it just can't get better than that! It does so much to allay your fears and trust that you are doing the right thing. I am so happy for you guys!

So, are you going to start assisting Gabs with her shower so you can be sure she is using the wash??? :ylol2: 

Sending all the love and luck in the world hun that the wash and tabs knock the bugger on the head! 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

she's actually using the soap...and it seems to be working! Slowly but surely...
and no I am not making sure of this myself...just taking her at her word Dusty! LOL


----------



## DustyKat

You sure about that? Ya not having the odd peek? :rof:

Ah, good to hear that it's working T.  

Now if only she had used it in the first place...bloody kids! Can't live with 'em and can't live without 'em! :ybiggrin:
You're not still giving her death stare when she exits the shower are you? :ylol2:

Much love mate, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

I'm really starting to believe/blame some things on Cimzia now.  Mainly bruising.  Gab has around 15-20 bruises all over her and they look just awful.  This happened mildly, yet noticeably, after her last injection and we just weren't sure.  However, there is another member here on Cimzia and is having bruising issues as well.  I just finished looking on Cimzia's website and it says it is a rare complication.  


> Advise all patients to seek immediate medical attention if they develop signs and symptoms suggestive of blood dyscrasias or infection (e.g., persistent fever, bruising, bleeding, pallor) while on CIMZIA.


Also she has a bit of an infection on her ear lobe.  Her ears are double pierced and it is next to the last piercing hole.  At first look I thought it was actually from the hole, but it's not.  It's yellow and pussy (sorry...gross :ytongue
But another sign of "infection" to me in addition to the MRSA sores elsewhere that have not spread any more, but have not healed yet either.

She has an appointment to see her GI on this Tuesday afternoon and I am going to insist that he check her bloods if he doesn't suggest it.  I think he is planning on it anyhow since this is her first follow up appt. with him since May 13th when she had her first injections.

This bruising is really bothering me for some reason ...


----------



## DustyKat

So how often is Gabs blood being drawn? 

I'm with you T, gets bloods done. Personally, this early on in a new treatment I would prefer to have been having bloods done weekly for a month and then fortnightly for a further 2 months and then monthly. 

I hope it turns out to be nothing serious T, Gabs has been through enough to last a lifetime!

Good luck with the appointment hun. I have absolutely everything crossed! 

Thinking about you all, :hug:
Dusty. xxxxxxxx


----------



## Crohn's Mom

She's only had her blood drawn once since surgery, and that was for the pain doctor, not her GI.  He only checked her B vitamin levels and her ESR, but I was happy those results were normal! :eek2:

I know that sounds bad...but her GI doc agrees to only stick  her when necessary, or if she's symptomatic, because she has a lot of scar tissue built up from all the years of poking weekly pre-surgery, and her poor veins are just done!


----------



## DustyKat

Hmmm...that makes it difficult then. 

How do you feel about it though? Is Gabs someone that shows symptoms early on or do her bloods reveal more about her than her symptoms do? 

Dusty. xxx


----------



## Crohn's Mom

It makes me nervous ! It was one of the first questions I asked the IBD nurse; does the doctor order routine blood tests ? She said no, and he doesn't find it necessary. :yrolleyes:
He has been pretty spot on with everything he has ordered, diagnosed, predicted, etc. so far; but that doesn't mean he cant be wrong.
Maybe I have too much trust in him ?? I should have learned my lesson by now...

Gab usually shows symptoms pretty early on, and her bloods seem to follow suit, so at least I have that.  That is why I will insist on bloods this time because I know her, and even though she only has a few very mild symptoms right now, she has them.  She will/is denying any problems, but like I told her yesterday, my radar is going off and it's rarely wrong :ybatty:
I don't think her symptoms are "Crohn's" related though...I think they are Cimzia related; except her dark eyes...I'm not sure what to think on that one...that's usually her CD acting up and making her more anemic.


----------



## DustyKat

Go with your gut T. I hear you about the dark circles, Matt always had those when things weren't right. With Gabs bruising you may well be spot on with her being anaemic, whether it be due to Cimzia or not. When you have her bloods done get her B12 and Iron Stores done as well. 

I don't think you have put too much trust in him T. By the same token I don't believe that routine bloods aren't necessary. We all know here how individual this disease is and as such you can't make a blanket statement that routine bloods aren't necessary. In Gabs situation it may well be the case, she has symptoms early on, n our case it would not fit. Sarah always showed symptoms that the bloods did not reflect, so yes, she would fit that statement, Matt on the other hand is entirely different. He does not show symptoms until he is very ill, the bloods have always revealed far more then he physically does. 

Thinking of you mate, :wub:
Dusty. xxxxxxxx


----------



## Dexky

Oh man, sorry T!  I know you guys have really got your hopes up for the Cimzia!  Poor girl, give her a break already!!


----------



## Crohn's Mom

Things went very well with the GI doc today..he is pleased with her progress and says if things stay this good then she will definitely be ready for her reversal surgery come December !:thumleft:  Actually, he said that he would clear her come September if it wasn't for her being in the beginning of her first semester of college.  Really stinks that she can't do it then, but like I told her, it's just an extra 2 months and its more time for the colon to be perfectly healthy for longer.

As far as the staph infection goes, he is contacting the dermatologist to have another round of anti-biotics called in before it has a chance to do any real damage.  I'm super happy about this as in the last couple of days it has spread a bit.  

As for the bruising, he is not really concerned.  She is not having any bloody noses, or bleeding problems, and they are starting to disappear again. I'm sure they will show up again after her next injection, but again, he doesn't see it as a problem, and definitely not a reason to stop the Cimzia treatments.

This doctor is so very thorough with his questions and listening, I will say it again, we are blessed to have this hospital.  And, he is so very confident in what he does and his knowledge that me and my "I will insist on bloods being drawn" attitude...shut right up and let him call the shots and do what he knows how to do.  Hopefully we don't end up regretting that decision, but I feel comfortable with it right now.

So for right now, I and Gab, are very happy that she can continue the Cimzia.
I also asked him if he had a reference for a contact doctor out where she is going to school in the fall.  He gave me a name of a good friend of his at the teaching hospital there, but at the same time said unless there's a hurricane stopping her from driving to the Mayo clinic, we don't even need to meet that doctor. LOL I guess it's made very clear to us now how important it is to have communication with the doctor who is prescribing the major immunosuppresents and not to try and screw around with any other doctors.


----------



## Dexky

That's an awesome update T!!  Long may it continue!


----------



## DustyKat

Oh T, this is so fab to read! 

Hey mate, if you have faith, trust and respect in the GI then you are streets ahead of the pack. 

Let the good times roll, they are well overdue!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

I realized today that this coming Friday it is time for the next Cimzia dose.
I don't think Gab has given CD a second thought in weeks !
The only "issues" we have noticed is this week her bones are aching again.  This just means to me that the Cimzia is doing its job with working on her arthritis issues and her body is realizing it's time for more ??

Her staph infection seems to have cleared again with the antibiotics.  It will be interesting to see if it comes back, and how quickly, after this Fridays dose. :confused2:

Everything is going so well with her health and she is just thriving !  I can't believe she is actually leaving for her first year of college in just 3 short weeks ...it's definitely bittersweet !


----------



## DustyKat

Oh T, it is so fab to read this!!! I am so happy for Gabs and for you too!!! :banana::banana::banana:

Sounds like you may well be on the right track with the aches and the Cimizia. I so hope all goes well with the next shot hun.

Apron strings mate...:wink:

:mademyday:
Dusty. xxxxxxxx


----------



## Dexky

Good stuff T!!  And Dusty, tsk, tsk, that's the pot calling the kettle black isn't it!!  We'll see how it goes when Matt is off to uni!


----------



## AZMOM

T - I'm SO glad that she has a "new normal" and is going!!!!! And love your heart......I know you'll miss her!  

J.


----------



## DustyKat

Dexky said:


> And Dusty, tsk, tsk, that's the pot calling the kettle black isn't it!!  We'll see how it goes when Matt is off to uni!


:kissgrits:


----------



## Crohn's Mom

*here we go again...*

I really liked having to scroll almost all the way to the bottom of this page to find this thread and update it...I wish I would have had to go through several pages 

Gab has been showing symptoms of not feeling so good since her last injection about 2 1/2 weeks ago.  We've tried to chuck it off as allergies, too much activity, just a "bug", etc.  Hopefully it's still one, or all of the above, but it's not looking that way unfortunately.
She's been sleeping a lot again, (almost 15 hours last night), which is almost always a sign that she's ill.  But again, we were hoping she was just a "normal" teen and not resting enough at the right times.
Then last night she came running in my room saying she needed something for her stomach right now! I asked what was wrong and she said it "feels like I have swallowed glass, it hurts really bad, and it just won't stop mom". 
So, I called her lovely IBD nurse this morning first thing to see if I'm way off, or if the Cimzia may not be working as we had hoped.
She agrees that is sounds like something is not right.  So, she emailed me a form so we can go tomorrow morning and get labs run (thankfully that saves us the hour trip up there just for lab work).  They're running a CBC, Complete Metabolic Panel, and Iron with TIBC (?).  She asked if we have any Cimzia on hand (we do) so that after the blood tests are in we can give her what they call a "rescue dose" earlier than she is scheduled. 

Uggh....here we go again....7 days before she is due to move away to college and begin what is supposed to be a wonderful and exciting new path in life.
To say I am a bit discouraged is an understatement.
It's really hard to try and think positively right now...sorry. 
I think you all understand tho...

edit: I know I get a bit "over emotional" at times but this is how I feel right now...
She was gutted like a damn fish just a little over 4 months ago, and fitted with a surprise ileostomy...this was supposed to work!!!
 With or without Cimzia...doesn't this girl deserve longer to feel as good as she was ?!!??  This is just so fricken unfair !!...sorry..rant over!


----------



## Dexky

Yes she does deserve better T!!  And so do you!  I'm so sorry for you both but hopeful that it's just a glitch and you guys can get it sorted quickly.  You can't be over-emotional when it's your kid!!


----------



## DustyKat

Oh man T, Gabs deserves so, so much more! God this sucks so bad and I hear you mate, my heart goes out to you both, big time...:heart::heart::heart:

I hope they can get this sorted ASAP T and things settle again. I have absolutely everything crossed hun. I wish Gabs all the luck in the world with her blood tests and the rescue dose.

Thinking of you guys, always and carrying you in my heart...:Karl:
Dusty. xxxxxxxx


----------



## kimmidwife

My doctor wants to start my daughter on Cimzia, but after a little background search I found out that in girls her age it can cause a dangerous cancer. I don't know if I want to take the risk but it seems to be the only option.


----------



## Crohn's Mom

Hi Kimm 

How old is your daughter ? From my understanding, unless it has recently changed, Cimzia isn't approved yet for children under 18. My daughter was barely over 18 when she started it, so I've often wondered if that puts her at a higher risk of the more serious side effects.  

I will say though, Cimzia has been amazing for her so far.  She's had a few bumps in the road, but nothing too serious and it has definitely been worth it for her. 
Maybe it will be a great thing for your daughter too ??  I'm looking at the list of meds that have failed her so far...Has she giving Humira a chance ?  There are quite a few kids here on it and doing very well.


----------



## kimmidwife

Caitlyn is 14. We did try humira for a very short time. SHe could not tolerate the pain of the injection which hurt for hours after the shot was given. How is your daughter doing now? Is the cimzia still working for her?


----------



## Crohn's Mom

Again, and correct me if I am wrong, but I don't believe/know that Cimzia is FDA approved for children under 18.  Is your doctor aware of this ?  I assume he/she is.  Maybe they make exceptions for more severe cases, I'm not sure.
I'm sorry she could not tolerate Humira   From everything I have read (here and other places) Humira users seem to say that it is more painful than Cimzia users do.  However, my daughter with her first injections and thereafter said the injections didn't hurt one bit; but, now....the last two~three injection times have hurt her quite a bit.  I'm not trying to scare you, just inform.  She uses ice packs to numb the injection site now and she says it helps quite a bit.  I have no idea why, after 5months of injections not hurting, that on the 6th month they do.  
It's odd because the first time it actually "hurt" her we thought it was because she was too close to her ileostomy site.  So, the next time she was due she did the shot on the side of her stoma first and it didn't hurt, but the second one did.  She has come to the conclusion that it's the second injection that hurts.
There is no science behind this of course...just my daughters experience...after five months of injecting, the first one is no problem, and the second on hurts like hell.  (and trust me...she enjoys the injections and always has because she thinks they are "cool") LOL

Anyhow, I wish you the best in whatever you and your daughter decide to do.  If there are any questions you think I may be able to answer please feel free to ask here, or PM me.
Oh ya, and ...my daughter ONLY does injections in her abdomen.  She has never tried the thigh because she thinks that may be worse in her mind for whatever reason.  So...maybe that's why her's are hurting now...maybe she just needs to rotate the area she injects ?? who knows right ? :shifty-t:

Take good care


----------



## Crohn's Mom

Here we go again !

It's been just at 5 months since Gab has had to stop her Cimzia in preparation for her Surgery this past December ~ Wow ! time sure does fly.
It's now around 11 weeks post op and Gab is doing pretty well.  She has healed from her take down surgery, and is back to her College for her second semester, and still loving school. We are waiting on a call from her GI to go over blood results she had this past Friday, and if he thinks all is ok then she is cleared to start back on Cimzia ~ Finally!

I will be very nervous on the day of her first injections, mainly because she is away at school and she will be doing them alone there, with out me.  She's done them plenty on her own there before, but since she has been off of it for 5 months now, I worry about her body possibly rejecting it.  Her GI says the risk of that happening is very small, and nothing compared to it if she had been on Remicade.  I'll still be nervous LOL.
Also, I'd just like to be there and hold her hand while she does it 

So, wish her luck that Cimzia does it's thing for her once again ~ except better this time around and hopefully none of the side affects she had previously !

edit: she is starting over again by the way with the loading doses at 0, 2, 4 weeks and then once per month


----------



## Tesscorm

Sending the very best wishes to Gab that all goes well and smoothly!!!:rosette2: :heart: :rosette2:


----------



## Dexky

Good luck T and Gabs!!  Please God keep that girl going strong!!  She's gonna be somebody!!


----------



## imaboveitall

Hey Cmom, I just read the whole thread, your girl sounds like she's fairly amazing, just deals with the illness and its treatments and gets on with life.
I loved that she thinks the shots are "cool"...Violet has always liked IVs for the same reason; she thinks it's fascinating to watch.

It encourages me to read about kids going to college and living life, thanks for sharing this. 

That reminded me of a dumb thing a home health care nurse said when V was first released from hosp and on 24hr feeds, and nursing came 3x wk.

Nurse: (in front of Violet) Oh, she has Crohn's, my niece has it
Violet: how is your niece?
Nurse: she had a terrible time, almost didn't make it through college, in pain all the time, just a terrible time with it, we were so worried...
:ybatty:


----------



## DustyKat

Oh T! Wishing Gabs all the love, luck and well wishes in the world!...:goodluck:

Love always mate, :heart:
Dusty. xxxxxxxx


----------



## izzi'smom

Best of luck, gab!!!


----------



## Tesscorm

Julie - what a stupid nurse!  Its sometimes hard to understand how people can say things without realizing how they may be taken!

Emily had her tonsils out at 4 years, woke up crying, screaming, saw the IV, started yelling that she wanted it OUT!!!  I'm trying to calm her down, thinking the screaming just can't be good for her throat!, telling her that we'd remove it very, very soon...  A nurse walks by and says "Oh, I don't think you should lie to her, we need to keep it in until tomorrow!"  OH MY GOD!!!  Well, that set off another round of screaming, crying, etc.!  :lol:  Wanted to wring that nurses neck!  :lol:


----------



## Crohn's Mom

Oh boy, ooo boy ~ It's Cimzia re-start day ! 
Have I mentioned I'm nervous ?? 
Oh Yes ! I am nervous ! :ylol:

I will let everyone know how it goes when she tells me ...:ybatty:


----------



## Tesscorm

Sending lots and lots of luck!!!


----------



## DustyKat

At last!!!!!!!! YAY!!!!!!!! 

I feel the tension here T! and I don't blame ya one bit! 

Sending you both loads of love, luck and well wishes...:goodluck::goodluck::goodluck: 

Thinking of you!!
Dusty. xxxxxxxx


----------



## Crohn's Mom

I can breath !

She texted and she did her injections about a half hour ago ! She's fine ! 
The second one hurt again, just like it was doing with the last few before her surgery.
Strange! It's always the second one; the first one never bothers her a bit :faint:

I can breath ! No allergic reactions (that's what I was most afraid of...)

Ill update soon with how she's doing with it ! 
Thanks for all the luck and well wishes 
:ghug:


----------



## Dexky

That's good news T!!  Hopefully, it'll pick right back up where it left off!


----------



## kimmidwife

Yay! glad to hear it went well. Keep us posted


----------



## DustyKat

Woohoo!!! Sooooooooooooooooo happy, happy, happy!!! Long may it continue!!!

Love that girl! :heart:
Dusty. xxx


----------



## Crohn's Mom

Just wanted to give a little update 

I had my beautiful girl home with me this weekend for her 19th birthday ! Wow 19 ! Where does the time go ? :shifty-t:

Anyhow, we had an amazing time together and she looks so good ! Healthy! 
Her hair is finally growing back in from the massive hair loss back in August (we are really hoping it doesn't start falling out again) We were suspicious that it was the Cimzia that caused it, but not positive, as it happened to her once before a couple of years prior.
She has also recently started taking some gummy bear fiber supplements to help with the post op diarrhea and they are helping her a lot! It's not gone, but she has more "control" now, which is wonderful for her.
She is also beginning to notice less arthritis pain already since her injections a week ago ! :thumleft: It's not completely gone, but a great sign none the less!
She is also noticing much less fatigue ! So much energy :lol2:
And ... the best thing I see happening ... she has been introducing new foods back into her oh so bland, low residue diet, that she's basically been on for nearly 2 years ! She can eat shredded lettuce AND mushrooms ! LOL. She tried a fresh spinach salad a few days prior tho, and that was a massive NEVER AGAIN she said! She even ate tomatoes on her sandwich while we were out to lunch! (I was secretly jealous as I haven't eaten veggies in almost a year myself LOL)  I am just so happy to see the changes in her since her take down surgery ~ It's the little things in life (like veggies) that most people just take for granted, and here we are celebrating shredded lettuce ! :ylol:

So HAPPY HAPPY BIRTHDAY  to my beautiful and amazing daughter !:birthday2:
Wow! What a diference a year makes ~ This time last year we were just hoping she made it till March 21st for surgery.  We are truly blessed ! :rosette2:


----------



## Tesscorm

So happy to read your wonderful update!!!   The two of you so very much deserve only good times from now on!!!  I can just imagine how happy you are! :rosette2::rosette2:

Hope it continues forever and ever!


----------



## DustyKat

Oh boy, how fabulous!!! To say I am soooooooooooooo happy for Gabs, and you too T, would be the biggest understatement EVER!!!

And a great big Happy Birthday to your wonderful, beautiful and amazing girl!...

	
	
		
		
	


	





Much love, :heart:
Dusty. xxxxxxxx​


----------



## imaboveitall

So awesome and thanks for sharing. 
No matter how old they get the feelings are the same for us mothers ( I have a 29 and 28 y/o so I know).


----------



## Dexky

Fantastic T!!  Happy Birthday Gabs


----------



## Crohn's Mom

bump


----------



## Crohn's Mom

Gabs isn't feeling good again 

It's been going on for a few weeks consistently now, her fatigue hasn't resolved in 2 months.  She just took her latest dose of Cimzia this past Sunday and we were hoping she'd notice some improvement, but there hasn't been a bit.  She's also running low grade fevers again for the last 2 weeks off and on; however the last few days they're consistent and not breaking even with Tylenol.  Today's is 99.6, but usually they were running right at 99 or 99.2 
She has stated several times in the last couple of months that she doesn't think the cimzia is working like it used to, and now she doesn't think it's working at all.
She's also been complaining of a lot of bloating again, and keeps stating that it "feels like something is stuck".
I will admit, I am nervous and sad over this.
I have already emailed her IBD nurse this evening requesting a blood draw; I hope she responds tomorrow.

We really, REALLY NEEDED this Cimzia to not fail her .. arrgghh

:voodoo::voodoo::voodoo::voodoo::voodoo:


----------



## Tesscorm

Oh Tracy, I am so sorry that Gab isn't feeling well!  She's such a great kid and she deserves this to work!

Is it at all possible that it is still her body adjusting to the surgery and the recommencement of the Cimzia?


----------



## Crohn's Mom

I wish Tess !~ but, I don't think so.  She has been back on the Cimzia for 3 months now 

Thank you for your kind thoughts


----------



## crohnsinct

WOW!  Thanks for posting to this thread so I could read your story.  Amazing.  I am so sorry Gabs is not feeling well and will pray for her and for good test results.  Hang in there mama!


----------



## Sascot

Sorry to hear she isn't feeling great.  Hope they get it resolved soon!!!


----------



## Farmwife

Oh, sorry to hear that.
I can't offer much except hugs long distance.:hug:

Farmwife


----------



## Jenn

So sorry to hear! I think we may be in the same boat with Humira right now. Hope you get it worked it out and quickly.


----------



## DustyKat

Oh man T...:hug::hug::hug:...I am so sorry I am late to this.  

Did you hear back from the nurse? 

Has she had bloods drawn? 

Have you spoken with the surgeon? 

Argh! I am so hating this for you and for your gorgeous girl. :voodoo: 

Here for you mate. :heart:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks Dusty. 
I did not hear back from the nurse yet regarding the bloods,
But I assume it's because the results aren't in - she did her blood draw yesterday afternoon.   
When she emailed me back w the lab form she did say that after they look them over the doctor will probably want to set up an office visit and probably also set up a rescue dose of Cimzia in the mean time. 
I hate this


----------



## my little penguin

:ghug: hope they get back to you soon.


Doesn't the GI "know" mom's don't take a break even on weekends.


----------



## DustyKat

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

Dusty. xxx


----------



## dannysmom

So sorry Tracy! This stinks!!  I hope you the doctor can quickly find something to turn this around.


----------



## my little penguin

I was reading this and thought of your daughter.

Not sure if it applies in her case.
but


> There was heterogeneity between the three different anti-TNF agents studied, the investigators note, and they say infliximab, natalizumab and adalimumab appear to have the most evidence for inducing remission of active luminal Crohn's disease. "Certolizumab did not appear to be of benefit in inducing remission of Crohn's disease, which was surprising," Dr. Ford told Reuters Health.


from:
http://www.ccfa.org/reuters/updatedbiologics

:ghug: hope things workout soon for her


----------



## izzi'smom

Oh...T  :ghug:
I am so sorry Gabs treatment is failing. 
It;s such a letdown when things were going so well. Hoping you get some results back soon and can figure out a plan of action. Feel better soon, Gabs: Izz and I are rooting for ya'!!


----------



## Crohn's Mom

Thank you Angie  And Penguin for the link. 
I hate long weekends! LOL


----------



## Crohn's Mom

Just emailed her IBD nurse again ~ I am NOT a patient momma when my "baby" is not feeling good ! Long holiday weekend is over, now I want some answers ! :voodoo:


----------



## Farmwife

You go get those answers!!!!!!!!!!!!!!!!
Sorry she's not better.
I'll be thinking of you guys!:hug:

Farmwife


----------



## Sascot

Hope you get answers asap!!


----------



## Greasy Pete

I'm on my second month of cimzia, I had the same reactions to the drug, some really high energy days, where I felt like a million bucks, then some really seriously low days with exhaustion and fatigue. This month I caught a cold from one of the guys at work, and I was seriously frightened about it, since this stuff lowers the immune system. 7 days later, cold is almost gone, moving forward I'm not so nervous.  My Crohn's symptoms are really coming under control !!!!! All in all, I'm thankful for the cimzia.   Not trying to hijack your thread, just sharing my experience as it was similar to what you're seeing .  I wish you guys all the luck with it !!!!


----------



## Crohn's Mom

Thanks Pete 
I don't mind you highjacking at all.  It's good to have others who are on Cimzia to compare notes with 
This is Gab's second round with Cimzia ~ she's been on and off it for a year now (she had to take a 4 month break due to surgery).  It's not just the fatigue that is worrying us.  Also, we have noticed in regards to colds and such that she tends to get sick less than before she was on the Cimzia so that is a good thing as well.
Her problem right now, and why she thinks it's not working any longer for her, is because of the consistent fevers, bloating and pain the last 2 weeks.  Then today she came home and said straight out that she thinks she has another stricture and the beginning of a blockage  
My poor girl ~ she tries so very hard to stay so positive and never let this damned disease stop her or get to her; but I think the thought of this happening again so soon after the 2 surgeries last year is getting to her quickly.
It's breaking my heart. 
And I STILL haven't heard back from the nurse today ! Argghhhh ! 
I will be phoning her first thing in the morning if I don't hear from her by end of day today.

Pete, I am so happy for you that you are seeing a positive change. I truly hope it continues forever ~ and feel free to comment any time


----------



## Greasy Pete

That really stinks that it's not working for her. It's really hard to not let it get to you sometimes, I'm wishing you guys all the luck !


----------



## Tesscorm

I hope you get some news this morning (and that it's not bad news!!!)  Since I've been here (one year already!), Gabby has accomplished so much through so many difficulties and challenges that she so very much deserves to have this work!!

I can imagine that it's hard to remain positive when you constantly need to look beyond _one more _challenge   but, she's such a strong girl and has such a positive attitude...  I'm sure she's surprised you in the past with her strength and resilience and I'm sure she will do so again!  

Thinking of you and Gabby! :ghug:


----------



## DustyKat

Oh man T...:hug::hug::hug: 

I hope you can get answers this morning! Sending you both loads of love, luck and well wishes hun, always! 

Sarah is coming home this weekend so it will be good to eyeball her! :lol: 

Thinking of ya mate. :heart: 
Dusty. xxx


----------



## Crohn's Mom

Finally heard from the nurse today regarding Gab's blood work.  She said they look good.  Which, in essence is "good" news I guess ~ there was a part of me hoping for some sign of infection somewhere tho as an explanation. :shifty-t:
The labs were basically a CBC, CMP, and Iron + TIBC.  So, good she's not showing any anemia right now either.  But there were no tests for CRP or ESR, which bugs the crap out of me quite frankly.
Anyhow, she said that her doctor would still like to see her in his office anyhow, and wants to set up a colonoscopy since she is almost 6 months post op., (only 6 months  ), to look for disease activity. (arrghhhh).
Also, they want us to start thinking about where we think we may want to go with her next course of treatment.  I'm not sure if this means completely stopping Cimzia, or adding something to it, or what.  I'm guessing it means stopping it because all other drugs so far (except Humira and Remicade) have already failed her, so I don't see what the point would be in adding one of them to the Cimzia that's obviously failing her now as well.

Honestly, This SUCKS !
Sorry to be so negative...I'm just having a moment I guess. 
Thanks always for the support here :rosette2:


----------



## EthanPSU

I hope she gets better. I'm doing about the same, nothing seems to be working, not even Remicade. I have a colonoscopy scedualed for this next week to see where to go from here. Maybe her having another colonscopy will help them better determind where shes at and what to do from here. Anyways, I hope she gets better!


----------



## Farmwife

Well I happy the test that were done showed up good. I guess.
I know what you mean. You want a reason for the way they feel and the way they look.
Sorry not to many word or wisdom. Just thoughts of encouragement. 


Farmwife


----------



## DustyKat

Oh man T...WTF...no inflammatory markers! I would be mightily pissed too! Grrrrrrrrr. 

Do you know when she the GI? 

Thinking about you hun and sending loads go love and hugs...:hug::hug::hug:

Dusty. :heart:


----------



## DustyKat

Has EN been thrown into the mix T?


----------



## Crohn's Mom

Just got the call from the lovely Mayo Clinic and she is scheduled for a colonoscopy and office visits on the 27th.

Dusty, we haven't tried total EN before, but it has been discussed here and there.  I'm all for it, Gab is not.  It's her body.  She wins :lol: Maybe someday if she has no options (god that's terrible to say) she will try it.


----------



## Tesscorm

I hope all goes well on the 27th!!!  :Karl:  

I'd be so mad about the inflammation markers too!!! How can something so obvious to us not be obvious to them!!!  Why not test for CRP/ESR?!?:ybatty:

I know six weeks (or longer) of EN is tough to convince and takes a lot of sacrifice   (Truly, I don't think I would have the willpower...)  But would she consider just trying it for a week or so?  Just to try to get over her symptoms now??  I just recently asked Stephen's dietitien if doing it exclusively for a week or two would be enough to reduce inflammation, she said no BUT did say that a week or two would help to just alleviate symptoms...


----------



## crohnsinct

Oh T I am so sorry  I guess the silver lining is she is home for the summer and where her amazing, loving, smart mamma can take excellent care of her.  Hugs to you both and strength and clarity for the decisions ahead:ghug:


----------



## DustyKat

The 27th...Yikes T...too much time for thinking and thinking and well hell I ain't telling you anything! Seriously though, I hope it gives you answers and easy ones at that! 

Dusty. xxx


----------



## Sascot

Good luck for the 27th.  Maybe the colonoscopy will show good news - keep the positive vibes going!  Sorry the Cimzia isn't working.  Hopefully she'll feel better soon.


----------



## Tesscorm

Just wondering how Gab is doing?  Hope she's been feeling better... :ghug:


----------



## Crohn's Mom

Thanks Tess  Sorry didn't see your post sooner.  Life is crazy around my house lately lol.

Gab's colonoscopy is today :shifty:
She did her prep yesterday, but it wasn't easy.  After the 3rd glass of it things weren't "moving" and she slowed way down on drinking.  I don't think she finished until at least midnight, and even then it wasn't all of it.  She said it was enough tho, and no more was needed.  She would know! It's not like this is her first time at this rodeo ! :roy:
We realized yesterday that this is her 5th colonoscopy already, and she's only 19! :voodoo:

I'm a little more concerned now at what they may find today because of the way things were going with the prep last night.  The last time the prep wasn't "working" she had severe strictures; and we've already been thinking that may be the case for the last few weeks at least.  I hope we're so wrong !

She's still been feeling the same unfortunately; she just goes to her summer classes, studies a TON, and sleeps mostly.  She runs a low grade fever every, single day and just "doesn't feel good".  She did her dose of Cimzia again this past Friday and we were hoping for some sign that she felt just a little better after, but there's nothing positive from it any more.  About the only thing she notices from it now is pain at the injection site. :ywow:

Anyhow, will update later on after we speak with the doctor when her colonoscopy is complete.  It's gonna be a busy, and interesting day for sure!


----------



## Tesscorm

I wish she'd been feeling better these last few weeks ...  but, sending lots of wishes and luck that the scope goes well and results indicate no serious issues!!! :ghug:


----------



## Sascot

Sorry to hear she's not feeling any better.  Hope the colonoscopy goes alright!


----------



## Crohn's Mom

Thanks 

They've taken her back a few minutes ago.  Now I sit and nervously wait.
They went ahead and added the upper endoscopy today as well after speaking to her (us) and realizing how many more symptoms she has lately. ~mouth sores, esophogas sores, heart burn and regurgitation ~ I'm glad theyre doing it now, so we don't have to come back for a seperate procedure.  They also said they will probably have to do an MRE if the scopes don't show them what they're looking for.  Not sure if that will be today or not; guess we'll have to wait and see what they can visualize with the scopes.
We have an appointment after the scopes to meet with the doctor and IBD nurse to discuss which meds are next.  I guess it's already been decided that Cimzia has failed her.  The nurse seems to think that since she did she some response to Cimzia the  first time around (pre-second surgery), then there is still a good chance that she will have a good response to Humira, or Remicade.  She tossed around methotrexate and Imuran, etc as well, so not sure what Gab and I will end up deciding. 

I really had high hopes for Cimzia, and I just can't help but wonder if she didn't have to stop it for those few months, would it have continued working so well ?  I guess we'll never know...


----------



## Tesscorm

Can't imagine how disappointing this is for you and Gab! :ghug:  It's such a shame that she had to go off Cimzia for that time period but you/Gab really had no other alternative.

I hope whatever symptoms they do find are mild and can easily and quickly be brought under control with a new med.  Gab has always been such a strong young woman :queen: I'm sure she will quickly adjust to a new med and get on with her busy, busy life! 

Thinking of you both! :Karl:


----------



## jmckinley

Just wanted to stop by and say I am thinking of you both today. I hope the tests find out what is wrong and you get a new game plan.


----------



## Jenn

Definitely worth doing both scopes at the same time. Pulling for you and Gab.


----------



## DustyKat

Hey T,

I'm so, so sorry to hear that Gab's is having to deal with this all over again.  It truly breaks my heart hun so I dread to think what it is doing to you. :hug::hug::hug: 

I so hope you not only get solid answers but ones that are easy to deal with. Sending loads of love, luck and well wishes your way. :heart::heart::heart:

Dusty. :Karl:


----------



## Crohn's Mom

Well, sorry it took so long to update afterwards today ~ I needed a bit of time to process and think I guess. :shifty: (and maybe have a cocktail  )

So, I was right for the most part ... she is not in remission, and her Crohn's is back. :voodoo:
However, it is (mild). 
With the colonoscopy they found several ulcers, and (mild) inflammation in whats left of her ileum and the beginning of her colon (or..what used to be the beginning of her colon, and the part that is attached to where it used to be now).
With her upper endoscopy that was actually a bit worse.  There is (mild) inflammation in her esophagus and duodenum and stomach.  There were also several superficial ulcers throughout these areas.  However, they do not believe from a visual aspect that this is "Crohn's" just yet.  A rather large area of her stomach was quite red and inflamed.  They took several biopsies from these areas to be sure, but none from the lower areas as they "know" it is Crohn's there. 
With her stomach and esophagus being such a mess they are testing for H Pylori as well as Barrett's Esophogas because there is significant damage.  Her nurse said its "not awful", but still concerning of course, and that they are really glad that they decided to go ahead with the upper endoscopy at last minute.

So...and I'm trying to keep this "short" LOL, the new game plan is:
first thing we wait for the biopsy results which should be in by Thursday next week at latest.

If the results show H Pylori then they will start her on treatment for that and see if her symptoms resolve.
If it does not, then they want to start a 3 month taper of Entocort.  She said that she should start to see some improvement in her symptoms within 2 weeks time.  Gabrielle literally burst into tears when she heard this ~ it broke my heart.  I can't blame her after all she went through, and all of the horrible side effects she experienced with Prednisone.  The nurse tried to reassure her that there is only a 10% chance that she will experience similar side effects with the Entocort as she did with Prednisone, but in Gab's defense, she's gonna need to see it to believe it ! :voodoo:
IF the Entocort seems to be relieving her symptoms THEN they want to try doubling up the dose of Cimzia along with it ~ meaning full doses every two weeks instead of once a month (not half dose every two weeks).  That scares the S*&T out of me ! :shifty:  Like these biologics aren't scary enough with their "normal" doses , now they want to double the dose for her ? :blush:
Then after the 3 month taper, and the double Cimzia, if things still aren't right then they will definitely switch her to a new biologic.

I can see why they want to try the combo of Entocort and Cimzia before they discontinue and give up ~ I mean honestly , there aren't many choices left for Gab after this.  Her body and disease just don't seem to respond and we're running out of options so since she saw some good progress at one point with the Cimzia they're just not ready to completely give up yet.
Trust me when I tell you I asked plenty of questions because of my concern here with basically a "trial" once again ~ but really, what choice do we have ?

I just want my girl to feel better again, and for more than a couple of days.  I'm really starting to get discouraged, and a bit defeated ~ 
I'll pick myself up again for her tho I PROMISE ~ Crohn's will NOT WIN !!


----------



## DustyKat

Oh man T I just want to yell, kick and scream! This is so F*&%ing unfair! ARRRRRGGGGHHHHHHHHHHHHHHHHHH! Thank god it is mild or I don't know what I'd do! 

You are so strong and compassionate T and such a wonderful role model and advocate for Gabs that it's little wonder that she is the incredible young woman she is. Mega kudos to you both, I am deadset in awe! 

I swear to god I am hoping, wishing, praying and everything elseing that the new treatment plan works and Gabs is soon feeling the best she has ever felt! Lord knows she deserves it! 

Always in my thoughts mate, :heart:
Dusty. xxxxxxxx


----------



## Tesscorm

OMG, Tracy, I don't even know what to say...   I feel so sorry for Gab, I hate that this disease is so uncertain, so random...  like Dusty said, _so F*&%ing unfair_!!!  It's not hard to imagine how disheartening this is for her 

And, I can certainly feel your disappointment too!   You are both so strong, I know once you have a moment to regroup, you'll be on top of this and attacking full force but certainly not easy when you hit these tough times (most definitely a time for a cocktail or TWO! :redface

I will be praying that the biopsy results come back with H.Pylori and it can be treated!

Lots of love and wishes... :ghug:


----------



## Sascot

So sorry to hear about the Crohns being back so soon!!  I really hope their new plan of attack works wonders and gets her back to feeling well asap. Good luck with the wait for the biopsies, it would be good if it was h pylori and treatable!  Sad when we think that it is a good thing to have something "simple" like h pylori. All the best!


----------



## jmckinley

So sorry that her crohn's is flaring again so soon! It seems she just can't catch a break! Hugs for you both. I know you feel discouraged. Even the strongest of people (and you both are as strong as they come) need to question, kick and cuss once in a while! Get it all out there and then put on your boxing gloves and get ready to knock this out! I hope the change in treatment brings some relief.


----------



## dannysmom

Oh Tracey .. I just read this now. This totally stinks! I hope the entocort helps soon ... not sure what to think about doubling the Cimzia ... agreed scarey ... but I guess since there are not many biologic options the do not want to give up on something that worked too quickly. Am thinking of you both!!


----------



## crohnsinct

:voodoo::voodoo:Stupid Crohn's!!!! :voodoo::voodoo: So not fair.  You have both been through more than your fair share!   

I am hoping and praying that this all resolves quickly and that Gabs is feeling better super soon.


----------



## Deeann

Hi. I have been reading your posts for an hour and I feel terrible for your daughters pain but I do wonder if you have ever tried the diet route and how it worked or not.  Thanks.


----------



## AZMOM

T!!!!!!!! No!!!!!!!!!!!!!! Im stomping, screaming and praying along with Dusty. 

Waiting......please keep us posted. 

Love u - 

J.


----------



## Crohn's Mom

Its just Never ending is it...

Gab has been on the Entocort for 6 weeks now. It has helped with her fevers, and possibly a bit of the fatigue, but that is about it. 

She came to me yesterday and said she had a "tiny bubble" on her scar where her ileostomy was.  I told
Her to keep an eye on it and keep me informed. 
Well, within a few hours the tiny bubble opened into a tiny hole and began leaking.  exactly what I was afraid of...

I just put a call into her GI doc and let them know we think she has a fistula. 

I had a feeling this was coming because of all the pain she's been having in her lower abdomen lately, and feeling like "something's stuck". I wanted to be wrong - o so wrong.  

She's due to return to college for her sophomore year on the 24th. We just finished shopping for all of her new things to make her apartment cute. She's been so excited to go back. 

Can Someone please tell me
That this is an "easy" fix for my poor girl... ?
Yeah right ! I can dream :/


----------



## Farmwife

So sorry to hear the news.
I hope the whatever their is for fix will work and your girl can have a good time a college.

Farmwife


----------



## Tesscorm

Tracy, I'm so sorry Gab is continuing to have problems :ymad:  So very, very unfair!

I know almost nothing about fistulas and their treatment but I do hope that it can be treated quickly and won't impact her coming year!

Thinking of you and Gabby and sending wishes that this can be a quick fix!! :ghug:


----------



## dannysmom

The Hug button came in time!  I wish I could give you a real hug and tell you it is an easy fix! Good luck!!


----------



## crohnsinct

So sorry for all that you and Gabby are having to deal with.  I can only imagine how crazy it is all making you and will pray that you get answers and get her on her way quickly.


----------



## Sascot

Oh dear, sorry to hear about the fistula.  I hope they manage to treat it successfully asap!


----------



## Crohn's Mom

Thanks everyone ! 

Well we're crossing out fingers now and hoping we "jumped the gun" and what's happened may be a stitch abscess ? 

Wish on those stars for us ! I would love love love nothing more than to say we were wrong !


----------



## kimmidwife

Oh I just had a chance to get on the computer. I am keeping my fingers crossed for Gabs that it is nothing serious!


----------



## AZMOM

Prayers, T.


----------



## DustyKat

Oh man T, I am so, so sorry I haven't seen this till now. :hug::hug::hug: 

God damn it breaks my heart to read this, it is so bloody unfair. How can I ever forget what Gabs has been through and then look to my own, the bloody similarities and then the not so subtle differences. Wishing, hoping and praying more than anything that Gabs was in the same place as Sarah and Matt. 

Remember when you once wrote that you didn't want to tell me about Gabs surgery because Matt was still waiting for his? You know I never minded and I know you don't mind when I write of Sarah's and Matt's successes but you also know what I am talking about ay? The feelings of despair and sadness you have for someone that has a kindred link with you. 

I am here T anytime, just say the word. 

I am surely wishing with all my might that this is something that is easily treated and healed T. Gabs deserves a break and so much more and I am also wishing more than anything that the start of her sophomore year comes freely and easily. 

Lots of love, :heart: 
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks everyone ! :ghug:
I so appreciate the support 

It seems that it just may have been an old stitch that came to surface.  The "sore" is just about fully healed now.  I think it's taking a bit longer than "normal" due to her being on Cimzia and Entocort ~ but it IS healing none the less 

She is still experiencing tenderness about a half inch below the scar, but nothing severe.  I think we/she just may have to reserve herself to the fact that she may never be in full "remission"? :yrolleyes:  It seems to be a case that we have to weigh the good against the "bad".  
She really wants to switch to Humira, and that is her choice, however, I tend to agree with her doctors that we need to let Cimzia "work" as long as we possibly can since there's not much room left to "play" with other meds.  It's hard to explain my reasoning...maybe you all can just read my mind! :lol2:

We did move Gab into her first apartment yesterday! Her classes for her sophomore year start on Monday and she is more determined than ever! This "fistula" scare really got her attention and she thought she was either going to have to drop out of college or make a drastic change in her career path! :ybatty: She was so relieved when she found out that it was probably just a stitch (and momma too!) 
I aint too proud to admit I have NO problem being wrong in this instance!! :ylol:

DustyKat,


> Remember when you once wrote that you didn't want to tell me about Gabs surgery because Matt was still waiting for his? You know I never minded and I know you don't mind when I write of Sarah's and Matt's successes but you also know what I am talking about ay? The feelings of despair and sadness you have for someone that has a kindred link with you.


Thank you ! :ghug::ghug: I know you know


----------



## crohnsinct

Wow awesome news T!  I am so glad Gabs didn't have to delay her sophmore year. 

I totally get what you are saying about the meds and hope that Gaby understands as well.


----------



## Sascot

That's great news that things are healing!  Hope she has a great time in her apartment. Good luck with whatever treatment she ends up on.


----------



## DustyKat

Thanks for the update T! I am sooooooooooo ecstatic that the wound is caused by an old suture and nothing more serious, phew! Sucks that it had to happen in the first place but you know what I mean! 

I can read your mind T! :lol: I know exactly what you are saying mate and why. :hug: 

I am so happy and excited for Gabs T, she truly deserves to have her dreams, hopes and wishes come true. 

Onwards and Upwards!
Dusty. xxx


----------



## dannysmom

Yeah!!! Good news about the stitch. Hope her second year goes smoothly and she has fun!


----------



## Crohn's Mom

I just wanted to live in my bubble and be wrong ! :voodoo:

I took Gabrielle to the ER at the Mayo Clinic yesterday. We tried to get in with her GI doc, but they were overbooked, so we decided on the ER instead.  At least with the ER there, they have all of her previous medical history at their finger tips.

That "sore" on her scar, that looked like it may be healing while she was on Entocort, never went away fully. That bubble I was trying to live in had me convinced (sorta) that because of being on Cimzia that she just takes longer to heal, and add in steroids, then even longer.  Humph  ~ bubble bursted ! 
She indeed has a fistula that has surfaced. We saw it on ultrasound.  There's only so "deep" the ultrasound can see, so what we saw so far the fistula is at least 6 cm +.
Also...there is another "sore" coming to the surface on the opposite side of the scar...
 yep..you guessed it...ANOTHER fistula ! :voodoo:  That one was harder to "see" but definitely a fistula coming to the surface. 

We were lucky enough to have the surgical team come down to the ER and evaluate her.  One of the surgeons from the team was awesome and took a lot of time trying to explain things to us.  She wanted to start her on Entocort again, or give her a hefty dose of IV steroids, but since they were in touch via phone with her GI, the GI said no and we all agreed.  We have an appointment to meet with the GI team on Tuesday afternoon to discuss what the next step is...surgery, change in meds, both ? I am willing to bet that the first step will be an MRE to determine the extent of the damage done.  Its like the surgeon said after the ultrasound ( which was only done on maybe a 3x3 inch area around her scar), this is just a small window into the big picture of what is actually happening inside of her (again). :voodoo:

They were considering admitting her until Tuesday, but since Gab is in college they understood that she needed to get some things taken care of over the weekend.  They did start her on a prescription of Cipro for just in case there's infection brewing as well. Which we know now there is due to the blood results.

There has also been recent concern about her liver function.  Gab has thought a few times that her whites of her eyes were a bit yellow, and she "looked more tan" without being in the sun.  Last week they ran a LFT and said it was "normal".  Then last night they ran it again, and although its not horrible, some of her liver enzymes are indeed raising and "high".

So yeah...here I am again ready to crawl under a rock and feel sorry for myself and my girl.  Of course, neither of us has it in us to do that...but hey..I sure do feel like it.  My poor baby just can't catch a break.  Why is HER disease so damn aggressive and MEAN ! :voodoo::voodoo:  (sorry..little whiny  )

We will get through this.....right ??


----------



## AZMOM

Tracy - Im pissed for you and for Gab!!!! I could think of a few other words but Id have to kick mysel off the forum. 

Praying!!!!!!!!

J.


----------



## upsetmom

:hang:...You will get through this.


----------



## DustyKat

Oh T, I am dead set howling!  

I feel your pain and heartache so acutely and hate with a passion what you are both going through. To say it sucks is an understatement, I just can't find the words to describe how I am feeling about Gabs, about you and about this F*&^ing disease! How can I not look to my two and think that it could be a heart beat away for them but even more how did they get the outcome they have and not Gabs! I hate it! But this isn't about me! 

God I hope the appointment on Tuesday goes as well as it possibly can. I will be wishing, hoping and praying so hard that is does mate. :heart: 

Thinking of you buddy, aways have, always will...:hug: 

Dusty. xxx


----------



## Farmwife

Thinking of you both!

This will just be another battle she will WIN!
 How could she not? 
:heart:She's her mother's daughter.:heart:


----------



## Catherine

From reading your posts I know you and Gabs are strong and will get post this set back.

Hoping all the necessary testing can be done quickly, so you know what you are dealng with.

Thinking of you both.


----------



## Sascot

Oh no!  Sorry your bubble had to burst.  I have no experience with these issues, but I just wanted to send my best wishes and hope that whatever they choose to do, she will get better super quick for you!  Good luck with all the tests and decisions coming up.


----------



## Crohn's Mom

btw : If anyone gets in the predicament of questioning whether or not they have an Enterocutaneous fistula I have pictures of Gab's I can show you in private message.  There are a few of them from the beginning when we thought it was "just" a suture, to now when one of them began draining and the other is about to come through. 
We've been debating and wondering and questioning for 3 months now, so If I can save someone else a little time, and worry, I will be happy to do it. 

Thanks everyone for your kind words of support ~ it means so much !


----------



## AZMOM

Send me the pics sometime. I'd rather have that in my head than wonder. Love you both!!! Tell that tough girl Claire says she'll be ok . 

J.


----------



## Tesscorm

Tracy, I was so sad to read your update!  I've often wondered how Gabby was doing and had hoped that no update meant she was doing well! 

I don't really know what's involved in healing a fistula but I am HOPING, PRAYING that it can be taken care of quickly.  I will be thinking of you on Tuesday and am hoping you get a firm action plan to take care of both the fistulas and to get her crohns under control!

You and Gabby are both so strong and inspirational but it's certainly not fair that the battles continue to come!  You both deserve a break from this! :ghug: :ghug:


----------



## Crohn's Mom

Anyone ever just sit and stare at a wall ( literally ) and feel like they just can't breath...just can't move, just can't hear or see one more test result, just can't absorb one more ounce of "education", just can't ??...

and then...well reality bites you in the arse and you just keep on keeping on...


----------



## AZMOM

YES!!!!!!!!  I get it, sweetie. 

J.


----------



## DustyKat

The wall??? I rock in the corner! I'm catatonic! :lol:  

Nah, seriously, I so get it T...:hug: I'm sure over the years I have missed great swathes of conversation and life going on around me! I feel more stuffed, with feeling and thoughts, than I do after Christmas dinner! 

But ya babies are ya babies, always have been and always will be, so you soldier on...:hug: 

:hang: T! Thinking of you mate. :heart: 

Dusty. xxx


----------



## Livilou

Hi T!  I am so sorry to hear that your daughter's disease is flaring again...I'm right there with you..just sucks! And I know that feeling of staring and not being able to breathe, pretty much spent the weekend doing that. Seems like our kids just can't catch a break.
I get so exhausted (mentally) sometimes, constantly worried and waiting for the other shoe to drop, and most other people just don't understand how difficult this could be. For me, trying to manage 2 teens with CD and not let my non-IBD 12 year old get lost in the shuffle, is quite a challenge sometimes. I am on this forum everyday and it just breaks my heart reading about everyone's struggles..I pray everyday for every child and all of their parents and caretakers that there will be a cure for this dreadful disease, or at least some safer treatments with less side effects for our precious children. My husband will find me crying alot and will say "are you on that forum again". But even though I get emotional sometimes, you all  bring me such comfort and peace knowing that my family is not alone in this..and you understand what we are going through.
T, I will keep praying for your girl, I hope this gets resolved quickly...so sorry.   Kim


----------



## AZMOM

Sweet T (that's a southern fried compliment ) - 

What's the latest??????

J.


----------



## Crohn's Mom

@ J ~ I like that ! 

Nothing new to report really; Gab is the same right now.  She is on her way here from school right now ( 2 hour drive), then we have a little over an hour trip to Mayo for our appointment this afternoon.  Of course, I, mom, would have loved nothing more for Gab to have just stayed here since Friday and let me spoil her rotten while she lay in bed eating bon bon's and demanding service ( like the old days LOL) ~ but nooo she's way too driven and won't let even being sick stop her from what she needs to do.  That's ok tho..she's never been one to just lie down and take it, so I wouldn't want to see that now! 

Will fill you in later this evening after we return.
Boy am I nervous !! 

~T~


----------



## Tesscorm

Sending lots and lots of good wishes for today's apptmt!  I really, really hope they have a great plan waiting for you! :ghug:


----------



## Farmwife

I hope the appointment goes well!


----------



## pcbgirl227

I was just reading over some of the thread, not finished it yet. I, too, am on Cimzia and was a patient of Dr. Cangemi at the Mayo Clinic in Jax. I had a fistula and beginning blockage at the time I was placed on Cimzia that Remicadee did not fix. In my case, Cimzia did. That was almost 2 1/2 years ago. It was the same with me that I had to explain to everyone, including my new GI in GA., what Cimzia is and how it is taken. I have not had any issues with Cimzia so far except when it starts to wear off at the end of the month. Then I start feeling worn down and joints start to ache really bad. Once I give myself my next injection (I alternate between stomach and thigh each mth) then I feel like I have the flu for about two days. After that I feel wonderful until the end of the month again. Also, sometimes I have soreness in my thighs. They are alot harder to take then in the stomach. I am hoping it holds up as Humira is my next alternative since Remicadee failed. I do wish her the best of luck and hope she is able to keep on it since it so convenient to just do your shots at home instead of at a faculity. 

Oh, I meant to mention if she does not have the money or ins. to completely pay for the Cimzia then they do have Cimpay. It pays up to $500 per mth and you can also get additional help if you need more.


----------



## Crohn's Mom

Thank you so much pcbgirl227 for taking the time to read my thread and giving your input! 
It's nice to hear from someone else who is taking Cimzia, as there really aren't many here.
Gab has now been on Cimzia for a year and a half.  Unfortunately, it's not working for her.
They have tried doing the injections one shot every two weeks, as opposed to once a month as well.  They have also tried adding a three month Entocort taper, which helped some, but maybe it was too short?  Back in June they were also considering adding Methotrexate along with the Cimzia, but haven't tried that yet.  Gab is ready to be done with Cimzia, and move on to trying Humira, and at this point, I can't blame her one bit.  Personally, I would like her to give Remicade a try because from what I have researched it is the best at healing fistulas.  However, Gab has never been an easy case to keep, or even get her into remission to keep her there.  
We don't have much hope that any medication/treatment, will heal her fistualas at this point.  We are thinking she will probably have surgery again to remove them, and then change her treatment plan, again.

thanks for the info on the Cimpay  We have used it and it's wonderful..we haven't payed a dime for her Cimzia yet as they picked up our co-pay ( which thanks to awesome insurance is only $35 !)

Gab and I both just love Dr. Cangemi, and his nurse Donna.  They are so caring and usually on the ball.

I sincerely hope the Cimzia continues to serve you well !  How you explain your experience with it sounds very similar to how it was for Gab back in the beginning 

Thanks again !


----------



## upsetmom

Good luck with the appointment.


----------



## Crohn's Mom

Gabs appointment was ok for the most part.  They went over her list of symptoms and discussed options.
First order was an MREnterography ~we're just waiting on them to get insurance approval, and then they will call with the appointment.
They also ordered the Promethus blood tests to be done to see how/if her body can metabolize 6mp, Imuran or Methotrexate.  She had this same test done when she was 16 but it was done by her other doctor, so they wanted to do it again just to be sure.  Part of the possible plan is to combine one of those with Cimzia.  Gab is NOT happy.  However, I told her they just don't know what is going on until they see on the MRE.

They did say that there is a possibility that the fistulas are superficial suture tracks, (i highly doubt it ~ we saw them ourselves) and that is why we went over the combo of Cimzia and another immunosuppresant medication.  She said that the combo therapy is much safer than doubling a biologic when it comes to the increased risk of cancer.  Gabrielle is determined to tell them that she will not stay on Cimzia tho, but will switch to a Humira combo.  She even discussed the possibility of Remicade with me as well, which she used to be set against.  So we shall see when the MRE is done.

They also extended her prescription of Cipro out a few more weeks just to be safe.  They also wanted to put her on Flagyl but after we discussed that Gab hates that med so much because of it making her arm and fingers tingly, than they put it on her meds allergy list. (finally!).  She is also restarting 3mg Entocort indefinitely for now in hopes that she can get some relief until this is all figured out.

So anyhow...we wait and hope that the meds she is on gives her a little relief in the mean time so that she can get through these last few weeks of the semester and not fail her final exams :yfrown: 

Have I mentioned lately that I HATE Crohn's Disease ?!?!


----------



## Tesscorm

I'm glad you have a plan of sorts!  I hope you can get the testing done soon so you can move on with treatment.

Just curious, why is Gab set on stopping the Cimzia?  Is it just because it hasn't been working and she wants to move on with something that will?  I could certainly understand that!

Hoping with you that she can feel better and finish off her semester well! :ghug:


----------



## Sascot

Doesn't sound like you're much further forward than you were before the appointment.  I suppose they can't decide until the MRE.  Hope they manage to come up with a treatment that everybody is "happy" with.


----------



## Crohn's Mom

Tesscorm , yes, she has been insisting for quite some time that cimzia just isn't working for her.. I keep trying to give her positive reasons as to why it is, but you know what...it's her body and she knows better than all of us right ? and it seems now with everything that is happening while she is on it, she may just be right ! LOL


----------



## Tesscorm

Yes, after so many years and all she has been through, I'm sure she is very in tune with what's happening inside! 

It's tough when we do so much research and try to anticipate every possibility, and I'm not saying we're always right but, we just want to make the best decision we can for them.  But, as I'm starting to find with Stephen, the decisions are their's to make...  we can only give them the best advice we have to offer and support (and then start researching whatever it is they decide! :study::shifty::study! 

:ghug:


----------



## AZMOM

T - it sounds like the best of a yucky stupid crohns is awful situation to me.    Please tell Gab that one of my fav fav fav docs said sometimes 2+2=5 and that's probably what they are hoping by adding the methotrexate.  I know she feels like the Cimzia is failing.  Did the docs give a reason why they don't want her do that transition to Humira?  She could still do the metho.  Then again, if you switch both, you don't know where to attribute the success.

I'm rambling.......

Love you both - big fat southern fried hug - 

J.


----------



## DustyKat

> Have I mentioned lately that I HATE Crohn's Disease ?!?!


No. :lol: 

Seriously though T. :hug: 

I hope the MRE is soon so you all have a clearer idea of what path you may be heading down. Gabs sounds and is such an amazing and controlled young woman, someone who goes in with their eyes wide open and in full knowledge of what she wants and needs. Kudos to her T and to you for helping in that process! :thumleft: 

Good luck! 

Dusty. xxx


----------



## Crohn's Mom

Geez - like this poor girl of mine isn't going through enough at the moment - now she has an upper respiratory infection on top of it ! Arrgggghh ! 

Just venting


----------



## DustyKat

Oh no T! Poor Gabs.  

This is all so unfair and sucky. You are both on my thoughts mate and I am sending loads and loads and loads of love and healing thoughts your way...:hug::heart::hug::heart::hug:

Dusty. xxx


----------



## Crohn's Mom

Gab talked to her nurse at the ibd clinic
Today and she was told to hold off on her injection (due today) until she no longer has fever.
I agree of course, however, she runs fever now that her Crohn's I'd back -
So I wonder how she is supposed to know when the fever is an "inflammation" fever, or fever due to infection. 
I guess if it becomes too much of a wonder, she could always request a blood draw again?


----------



## DustyKat

I agree with you about the fevers T and to retest if need be. :hug: 

TBH hun, while I have no issue with the reasoning behind the delay in giving the injection I think to expect Gabs to decide when the time is right is putting a lot of responsibility in her hands. I don't mean to imply that Gab isn't capable, because she is an exceptional young lady!, but it's like you say...what is 'fever' and what is CD fever? 

Thinking of you. :heart:

Dusty. xxx


----------



## Sascot

Hope she gets rid of the respiratory infection soon!  Our poor kids have enough to deal with without "normal bugs"!


----------



## crohnsinct

Oh my gosh T!  I am just getting caught up with Gabby's situation.  I am so so sorry about all that is going on.  I had to keep reminding myself to breathe as I was reading and if I felt that way I could only imagine how the two of you have been feeling.  I hope the MRE is soon and that she can be on her way with her treatment plan and kick major butt on her exams and enjoy the holidays.


----------



## Farmwife

I hope she's feeling better soon.
Hugs to you both!:hug:


----------



## Crohn's Mom

Thank everyone  

And yes , Crohnsinct, I have to remind myself to breath daily honestly. :/ 

She's a little over two hours away at school - I text her daily just to say hi and whatnot but can not help myself to ask about her health for the day. Lately I find myself holding my breath, and just hoping for an "I feel a little better today mom" response 
It's just not happening. 
There's only so much I can say to "friends and family" because they just don't "get it" (as much as some of them try ) they just don't. 
They see her, or her recent pictures, and think right away - she can't be that bad- or she LOOKS sooo good. I wish they understood. 
But then again, a part of me is glad they don't because if they did, it may mean that they do "get it" because they experience it. Does that make sense? 
It's why I don't get upset with people who don't understand and think maybe I/we are exaggerating. 
I know my (baby) girl tho - and I know it doesn't matter how "pretty" she is- or how much she smiles through the pain ... Things are bad again, and just getting worse as the days pass. 
All day every day I sit and wait for that "come get me mom" phone call. 
Of course I smile, and remind myself to be positive- but the truth that I know, is there- and I dread what lies ahead for her. 
Honestly , it's the reason I don't post so much anymore - If I'm feeling too down, and negative, even here - I try to keep it to myself as to not bring anyone else down with me - even tho I KNOW you all understand. 

Thanks again - I'm done whining for the moment lol. 
(Humor! It's all we have right! :hug


----------



## dannysmom

Oh T ... I wish I could press HUG many more times! Do not worry about bringing anyone here down .... it is what this forum is for.


----------



## Catherine

T, think of your family.


----------



## DustyKat

Oh man T...:hug::hug::hug::hug::hug::hug:...How many times could I have written that exact same thing. And boy oh boy does it make sense hun. :ghug: 

You know, I have looked at pictures of Gab lately and thought that she looks well and happy and then I think about this invisible disease that takes so much away from our kids. The outward appearances that make people just brush it aside like it is a passing cold. 

I too am past the anger and upset with those that don't know and understand but I still feel frustrated and disappointed at times and it can be very lonely and isolating. I know what you are saying about not wanting to pull people into your feelings and emotions but we are here for T. If you want to stay away because you need to then that is fine but if you do need to gather those around you that understand then we are here. It won't pull us down hun, it will just make us tighter and stronger. :heart: 

You are both in my thoughts T and if there is anything you need just say the word.  

Love ya mate! :kiss:

Dusty. xxx


----------



## upsetmom

Thinking of you...:hug:


----------



## Tesscorm

Tracy, my heart breaks for you and Gabby.  We can all understand the nagging worries and the fear that is always lurking. 

Please, please don't ever worry that you are bringing anyone here down...  we're all here to help, support and hold one another steady!  We truly are the only ones who can understand.  But, I also understand that, sometimes, when you are overwhelmed, you somtimes need to 'regroup' your thoughts and emotions on your own.  As I said re Stephen a few days ago, I truly felt that I needed to 'hide in my cave and lick my wounds' a bit before I could deal with plans, treatments, thoughts, etc.  

You are in my thoughts and I'm sending lots of love and hugs your way!!! :ghug:  :ghug:  :ghug:  :ghug:


----------



## AZMOM

Just thinking of you and that sweet girl. You got a date for the MRE yet?

J.


----------



## Crohn's Mom

Thanks J  

MRE is on the 6th ... Way too far away, but whatcha gonna do right ? :/ 

Much love and patience


----------



## Sascot

The waiting is awful! Been waiting 7 weeks for my daughter's MRI - nearly there!


----------



## Crohn's Mom

Gab's coming home tomorrow for a couple of days - oh I am soooo thankful to be able to lay my eyes on her and see for myself just how she is holding up!  
Thanksgiving blessings !


----------



## DustyKat

Woohoo T! :banana::banana::banana:

Nothing better than eyeballing the kinder! Have a fab fun time with her T. :hug:

Dusty. xxx


----------



## my little penguin

Glad she is coming home.
Go spoil her and "beef " her up  .
I can only imagine having them away when they are sick.


----------



## Farmwife

Yes, yes, yes!:rosette1:

Plump her up like an American turkey at Thanksgiving time!:thumright:


----------



## Crohn's Mom

What a wonderful three days we had with Gab ! Such a blessing to be around her ~ It will never get old !

She "looks" great 
Of course, she's not feeling great, but with the smile that girl presents to the world, you'd never know it.
She has lost nearly 10 pounds since I last saw her 2 weeks ago ~ I do not like that one little bit.  She says she's never hungry anymore, and when she is she only eats a couple of bites and she is full.
Her upper respiratory infection is better, but her cough is lingering still.
She went ahead and did her Cimzia injection a few days ago.  I was concerned that she should wait a bit longer, but she made her own decision to do it.
She said the fever had been gone for 2 days when she did it.
Now she is running fever again the last 24+ hours :/

Her final exams are coming up very soon,so I am sure the stress of that will not exactly make her feel better.  Hopefully tho, she will be able to get some much needed rest over the semester break.

In short, she is holding up pretty well (considering).
I can't wait for her to get the MRE on the 6th ... maybe then my imagination of what may be lingering inside of her will be calmed a bit ?  
I can dream right ! LOL


----------



## DustyKat

Oh T...:hug:...I am both so happy for you and sad at the same time. I can so imagine what you are feeling right now. 

UGH! Exam times! You know how I feel about Sarah and exams! It sucks.  

Roll on the 6th and solid answers, either way T. :hug: My imagination is a bitch at times like this. 

Dusty. :Karl:


----------



## my little penguin

Hugs...
So hard to watch and wonder .

Sending quick calm vibes until the 6th


----------



## Crohn's Mom

Any one wanna help me be OCD and decipher some lab results ? LOL

Albumin 5  (3.5-5)
Bilirubin 0.4 (0.1-1.1)
Protein Total Serum 8.5 (6.3-7.9)
AST 50 (8-43)
ALP 98 (52-144)
Total Carbon Dioxide 28 (22-27)
WBC 11.1 (3.5-10.5)
Hematocrit 43.6 (34.9-44.5)
Hemoglobin 14.8 (12.0-15.5)
Platelet 286 (150-450)
Potassium 4 (3.6-5.2)
Creatinine 0.6 (0.6-1.1)

Gabs still not feeling well.
Fevers daily between 99.5-100
Her GI has switched her from Cipro to Augumenten.
They have asked that she get a chest xray tomorrow.
Her MRE is on Thursday, but I am just trying to brainstorm and see if ...oh I don't know...it's just what I do when she's sick ; makes me feel better I guess.
:shifty:


----------



## my little penguin

I am OCD like that too. Which is why I hang out here.:wink:
I will look after kiddos are asleep.


----------



## AZMOM

Well at a glance her H&H is good which is good!  Those liver enzymes are worth repeating but not enough to warrant a freak out. . Elevated WBC consistent with being sick. No CRP or ESR?

I'd be anxious for the MRE too. Do me (your neurotic online friend) a favor and have Gabs track the fevers in comparison to Cimzia injection dates. Im quite certain there's nothing there. I just remember when Claire got into a weird fever pattern after her Enbrel injections. After that weird reaction I wished I had made more of a ruckus at the time. 

She's a tough cookie like her mama!  Try to stay out of the Unversity of Google until you get MRE results to look at with those labs. 

Ginormous southern-fried hug,

J.


----------



## Crohn's Mom

I've asked her over and over to track the fevers, and symptoms ~ No go!
College student trying her best to live in denial... need I say more ? :lol:

I don't do the google thing much honestly ~ 
I just wanna see if there may be something "we're" missing ya know ?
Brainstorming kinda thing 

I agree that the bloods need to be checked again soon. (those were from 11/22)
I'm hoping when she goes to the Universities clinic tomorrow that they will take it upon themselves to order bloods in addition to the GI's request for the chest xray.

It's the liver enzymes that are concerning me ~ I know they're not raised by much ~ but I don't like that they're raised at all again.  I just don't understand why her liver enzymes do this sometimes.  ( they have gotten extremely high in the past with really no explanation either) :confused2:

:Karl: thanks J


----------



## Crohn's Mom

OH...by the way...
Umm...and don't yell at me LOL...
Her GI doesn't order routine ESR or CRP :eek2:


----------



## izzi'smom

Sorry that Gab's not feeling well...
and I worry too when things are "slightly" elevated,...it's our job. 
No yelling, but I tell them what to order 
I didn't like the kidney function labs so I researched it and made them order some additional ones. They had to call around to see how to order it and what to draw lol. 
We rarely have ESR drawn either, but we get CRP monthly. 
Anyhoo, feel better soon, Gab!!


----------



## AZMOM

T!!!!!!!!!!


----------



## my little penguin

:ymad: really-
 I know for DS they are useless for the most part but........:ybatty:
make sure she asks for those at the unit. clinic :eek2:


----------



## Tesscorm

Sorry she's still not feeling well :ghug: but totally understand the brainstorming thing!  As much as I try, I just cannot wait until 'appointments' to get answers :ybatty:  It also helps me feel that I'm being proactive 

FWIW, Stephens enzymes have been slightly raised almost always (don't have numbers with me but, just a bit over normal). Then in July, they doubled!  I questioned his ped GI and he said they were worth watching but not high enough to be overly concerned.  Since then, they've dropped to normal (or just slightly above). 

A couple of things...  His GI did say that sometimes EN can cause slightly elevated liver enzymes - does Gabby use nutritional shakes as a supplement sometimes?  Also, Dusty mentioned that exercise can affect liver numbers - sure enough, I found a study that identified elevated liver enzymes after recent weightlifting exercises (which Stephen had recently started).  Coincidentally, at the same time, David wrote a post that mentioned something about a mineral in wheat germ (forget which ) that can help reduce liver enzymes - I also added some of this to Stephens diet. 

:ghug:


----------



## Crohn's Mom

Thanks Tess 

No she doesn't use EN supplements as a rule.  Yes, she does use them in the last week or so, I finally talked her into it. But she has just agreed to using Boost because she is having a hard time "digesting food" as she puts it ~ too much pain with food. :yrolleyes: So, that wouldn't have affected those blood results. 

And exercise...ummm..I want to say NO; however, again just this last week she has started using the treadmill she said to try and lesson her stress and lack of concentration.  That is literally just the last week tho ~ before that, I don't think she's exercised since her senior year ( 2 years ago) when she was on the tennis team.

I will try and find that post by David ~ 

Thanks Tess ! :ghug:


----------



## Tesscorm

Mineral is choline. Just looked it up too...  Thought I should probably know why I keep reminding Stephen to sprinkle it on his food!  :lol:  you'll find some info on the wiki. By the way, I just put some in a spice jar and leave it out on the counter (easy to sprinkle on cereal), have also put in muffins and homemade meatballs and homemade hamburgers.


----------



## Sascot

Someone should tell these almost grown up kids to stop stressing moms out!  Don't they know their lives would be so much easier if they just let the moms decide everything and get them organised :ybiggrin:
What no ESR/CRP?  How strange - over here, that's all they seem to do, it's getting them to do anything else I have a problem with :lol:
Hope the chest x-ray and MRE go well this week and they get to the bottom of the fevers.  Sorry you're having to worry so much.


----------



## Catherine

Esr/crp our gi doesnot order them often either.  They were done last time last time as second opinion,wanted them.


----------



## Crohn's Mom

I think the last time they ran a CRP on Gab was feb. I think what they do is look at the other routine bloods for signs of inflammation ? I asked when we first switched if that would be part of routine bloods and they said no. It's been a long time tho - so I can't remember their exact reasoning. 
I know they will check if we asked them to tho.


----------



## dannysmom

I am thinking with the high protein (most likely due to inflammation) it would be wise to order CRP and ESR again.  Our GIs in NY order them as part of their normal IBD work up. I wish she felt better!


----------



## Crohn's Mom

Waiting ... Waiting ... Waiting ... 
It's gonna be a long day I think  

A little good news tho - Her chest X-ray was clear


----------



## DustyKat

Oh T...:hug::hug::hug: 

So fab to hear the chest X-Ray is clear!  

Now, sending you both loads and loads and loads of love and luck that everything else is fab! Well maybe not everything, she can have just one middling thing that is easily treated to explain away why she is feeling the way she is! You know what I mean! :hug: 

Thinking of you guys, always. :heart:
Dusty. xxx


----------



## Farmwife

That's great about the one test.
Here's hoping the other's come back just as good.


----------



## Crohn's Mom

You know what's really cool - I can go online and read the radiologist report myself and not drive myself batty waiting on them to call me - I can just go batty trying to interpret them myself LOL. 

Oh the things I can think of to amuse myself while I sit here waiting ....


----------



## DustyKat

Keep it clean T and your mind on the job! :lol:


----------



## Crohn's Mom

That's just no fun !!


----------



## DustyKat

You're not supposed to be having fun! You're supposed to be rocking in the corner plucking your eyelashes out one by one! But then again if pain is your thing...hmmmmmm. :lol:


----------



## Crohn's Mom

We're home ! 
Actually we've been home for a couple of hours but I had to decompress from the day for a bit LOL.

I love how much Gab and I end up laughing and cracking jokes about her disease all day! We're a strange pair ~ but we're fun! 

Hopefully I'll know something tomorrow...patience is a virtue...right ??


----------



## AZMOM

Patience is overrated!!!!!!


----------



## DustyKat

Oh T AKA Patience...hmmmm I think that name suits you! , sooooooooooooooo fab to hear all went well. :hug: 

The relationship you have with Gabs makes my heart sing! 

Good luck withe the results! 

Dusty. xxx


----------



## Sascot

I used to have patience, it is running out fast!  Hope you don't have to wait much longer.  There's nothing like a good laugh.  Andrew and I have the same sense of humour, so we usually end up doubled over laughing.


----------



## Crohn's Mom

Question:

I know several things can cause "night sweats".
Gab has been waking from sleep (naps, and nights) basically drenched in sweat for maybe 3-4 days now.
This used to happen to her all the time pre-first surgery.
I'd like a reminder, or fresh ideas, or whatever (opinions) as to what may be causing them this time ?

For the record: She is on Entocort (3 mg 3 times per day), Augmentin (500 mg twice per day) Tylenol (prn) Cimzia (200 mg subcutaneously, every two weeks) Calcium (not sure on dosage right now ~ twice per day) Omeprazole (40 mg twice per day) B12 (1000 mg once per day) 

Recent Upper Respiratory Infection (chest xray clear), however, she says her throat wont heal (clearing it/slight irritative cough) 

No ~ I don't have results of MRE yet.  My thinking is possible abscess again ?


----------



## crohnsinct

Ugh sorry the only thing I have to offer is prednisone did that to O.


----------



## DustyKat

Hey T...:hug: 

Not sure T but night sweats were a pattern for Matt at times when he had his abscess but then...even though he was stable he was flaring so it may have been down to that as well. 

Thinking of you guys, now and always. :heart: 
Dusty. xxx


----------



## izzi'smom

Tell them to get you some darn results. Stat lol!
I am no help on the night sweats. 
Hoping that the results bring good news and you can have a peaceful new year...<3


----------



## Tesscorm

Stephen did not have an abscess but he did have night sweats prediagnosis. :ghug:


----------



## izzi'smom

It's Monday...hoping they call with some results. Any relief from the night sweats yet?


----------



## Crohn's Mom

I have them - but they have confused me so I'm waiting on the doctors opinion


----------



## izzi'smom

...been there for sure...UGH!  Good luck!


----------



## Sascot

Hope the doctor explains all soon!  I seem to remember Andrew feeling very hot at times, although never felt hot to touch.  He also had night sweats and had to change his pyjamas when he had his abscess.


----------



## crohnsinct

Well gosh now that I think of it..night sweats were in hospital and right after so maybe they had to do more with disease than the prednisone.  I just always linked it to prednisone because when she stopped pred they stopped but duh...whe she stopped pred she was better.  Dork!


----------



## my little penguin

night sweats here for Ds.
Once the remicade starts to wear off- night sweats start.....


----------



## my little penguin

:rof:OHH and my non -ibder also has night sweats- that is just his thing including sweaty feet:stinks:


----------



## AZMOM

Like MLP the "healthy" one is the night sweater here. 

J.


----------



## Crohn's Mom

And they called ! 
Well, the nurse did and she still needs to talk to the doctor for a "final" call, but she's wicked smart so I can't see that it will be much different after he goes over the report.



> No abscess or fistula. A small, enhancing anterior abdominal wall tract, several centimeters to the right of the midline, extends from the abdominal wall muscle to the skin surface.


NO Abscess 
The "fistulas" that were there on ultrasound ~ well, one is "gone" I guess, and the other they think is a sinus since it is not connecting to any organs, intestines, etc.  It is extending from the abdominal wall to the skin. 
I personally saw an old suture on ultrasound, so I'm comfortable with it being called a sinus now that we have the MRE.



> Several small nodular foci of increased enhancement near the anastomosis may be polyps


.

This part of the MRE she said is consistent with where they found her disease had returned back in June when she had her scopes.  She's pretty positive that the doctor will want to scope her again and take biopsies ~ but again, waiting on doc.

We also discussed the combo treatment again (SONIC trial) and they want to start her on 6MP or Imuran soon.  
I am not comfortable with this and I did let her know.
My understanding of 6MP is that there's no grey area with these, they either work or they don't.  6mp did not work for Gab one little bit and she was on it for a little over a year.
I asked about Methotrexate instead and she said that yes, it could work, but their concern with that is the risk, all be it a very small risk, of liver scarring when used in combo.
Also, their biggest concern is that she is a female of child bearing age and Mtx can cause problems in this area.  (momma's gotta research here!)

:ybatty::ybatty:


----------



## Tesscorm

No abscess, no fistula!!  :banana:  

So, she will stay on Cimzia?  Is Cimzia helping 'some'?  And the new med is to increase Cimzia's effectiveness??   If yes to all of the above :redface:, would EN be a consideration at all?   This is similar to the choices Crohnsinct's daughter was given...  GI wanted to add another med to her remicade, instead they did EN and it seemed to do the job...  Of course, everyone's situation is different so it may not be an appropriate option for Gab???

But, am glad about the abscess and fistula news!!!!  :ghug:


----------



## Crohn's Mom

Yes to staying on Cimzia (for now) - and yes to combining meds to increase the effectiveness. 

I have spoken with Gab in depth on considering EN as an option but she just won't consider it  

I don't want them adding any addition meds until they can give a more definitive answer as to what those "possible polyps" are tho - scares me - but then again - I'm finding more and more its not always my call now that she's so involved In her own treatment. Great on one hand - but killing my control freak nature on the other !


----------



## Tesscorm

OMG, I so understand...  I had my first taste of Stephen taking 'control' at his last apptmt - the GI, for some reason, went on and on and on about how you can't live without a small bowel and how Stephen's CD is located in the small bowel and that remicade or humira would treat that, otherwise we were risking that he'd lose his small bowel (it was a bizarre conversation because he then agreed to go with LDN if that what we wanted???) but, when we left, Stephen was so freaked out, he was ready to start the remicade that day!  We stopped for dinner and I managed to calm him down over pizza  but, if he'd continued to insist that he wanted remicade, at his age, I'm not sure that I could just ignore his wishes...   Definitely not an easy transition for us control freaks!  :yfaint:

I hope you can get the answers you need re the polyps...  a level of comfort with the meds decision would be so welcome! :ghug:


----------



## crohnsinct

Aw T, I am sorry she won't consider the EN, I know you spoke with that other doc and she thought it would be a good option and you were hoping. 

Totally get the control freak thing.  I will need to be  medicated when O starts making her own decisions.  

Good luck to you and Gabs in making your next decision.


----------



## katiesue1506

> We also discussed the combo treatment again (SONIC trial) and they want to start her on 6MP or Imuran soon.
> I am not comfortable with this and I did let her know.
> My understanding of 6MP is that there's no grey area with these, they either work or they don't. 6mp did not work for Gab one little bit and she was on it for a little over a year.
> I asked about Methotrexate instead and she said that yes, it could work, but their concern with that is the risk, all be it a very small risk, of liver scarring when used in combo.
> Also, their biggest concern is that she is a female of child bearing age and Mtx can cause problems in this area. (momma's gotta research here!)


I wanted to let you know that when I did Imuran alone, it didn't do much, however Imuran plus Humira lasted me a couple of years. Then Imuran stated to mess with liver enzymes and we cut it back from 200mg to 50mg with 25mg of Allopurinol. That gave me another 6 months. 

It was explained that the biologics do most of the work while the Imuran keeps your body from "learning" the biologic. That way you "fail" the drug a lot less quickly.

They have also not put me on MTX because I'm a woman of childbearing age. I don't really ever want children and neither does my husband but they still kinda refuse to prescribe it to me.


----------



## imaboveitall

Hey CrohnsMom, I am catching up on threads, and just read in here.

Nothing to contribute but understanding, both on the control aspect and fear of drugs aspect, and pain of knowing their normal lives are not really normal and won't ever be :frown:

As to night sweats, Violet had them for the two months before dx when she was really really sick. That was one of the reasons I feared lymphoma and got a hem/onc consult even before GI.
According to the hem/onc who is who sent us to The Saint, night sweats farily common with Crohn's.


I am scared to combine drugs, but The Sant wants to from the jump. MTX and Remicade.


----------



## DustyKat

Now T...if you need any tips about passing health control to your child just ask. :wink: I am doing so well with Matt but I still can't work out why I have this overwhelming desire to rock in the corner plucking out my non existent eyelashes! :lol:!!!

What does Gabs think about the combining of meds? 



> The use of immunomodulatory agents other than azathioprine or 6-mercaptopurine must be carefully considered in each individual case.
> Methotrexate (MTX) should never be used in patients actively planning to become pregnant. Based on data from animal experiments, there is a high risk of chromosomal damage, increased occurrence of birth defects and pregnancy complications (miscarriage, premature birth). In fact, MTX, at high doses, can be used to induce abortion. For this reason, we recommend discontinuing therapy with MTX in both men and women three to six months prior to planned conception. If therapy with MTX is absolutely necessary, patients must use a reliable method of contraception.
> 
> With respect to the use of cyclosporine A and tacrolimus, there are a series of case reports in patients undergoing organ transplantation and with inflammatory bowel diseases that describe normal pregnancies free of complications and no increased rate of birth defects during use of these drugs. The existing data, however, are by no means adequate to support a general recommendation for starting or continuing these medications during pregnancy. Use of these agents must be carefully considered in conjunction with both parents and an experienced specialist based on the patient’s prior disease course and the latest scientific knowledge.
> 
> http://www.drfalkpharma.de/uploads/tx_tocfpshoperw/S82e_12-1-09.pdf


My personal view when it comes to the prescribing of drugs such as Methotrexate is that although the issue with with female patients isn't a constant one they err to a cautionary path.  Although the patient may well insist that there is no chance of becoming pregnant there may be a risk, no matter how small, of pregnancy full stop. 

Dusty. xxx


----------



## Crohn's Mom

Thanks everyone 
And thank you Katiesue1506 for sharing that with me ~ it does help ease my mind a bit.
Dusty, I don't think I have any eyelashes left either ! LOL

Well, I just got off the phone with the IBD nurse and I do feel so much better ! (well, sorta :ywow: )
My mind was starting to wander into dark places, and that's never good! Gab's was too, so hopefully after she gets off the phone with her nurse, her mind will be a bit eased as well  

Her doctor wants to start her on Imuran right away.  Her prometheus test she did weeks ago came back normal, so they are able to start her on the full dose from the beginning; that will be 125 mg.  After reading Dusty's info on the Mtx, and doing some research myself, I understand them wanting to wait on that until they have no other options.  He was leaning more towards 6mp but agrees that we will try Imuran instead since the 6mp alone previously did nothing.  I of course asked about a pre-blood test to check her liver enzymes because last month her AST was raised a bit.  She said most likely it was raised due to Crohn's inflammation.
So She will have a pre-blood test before she starts taking it, then she will have one every two weeks for the first 3 times, and then commence to monthly bloods. 
At least one good thing with the combo therapy is we can keep an eye on her bloods 

As for the 


> Several small nodular foci of increased enhancement near the anastomosis may be polyps


(that would be what sent my mind to dark places..)
The doc said that this is actually "normal" when the disease comes back at the surgical site of previous resection, and is probably "pseudo-polyps" which are actually inflammation consistent with Crohn's.
They are not going to scope her just yet ~ they want to wait and see what the new combo of meds does or doesn't do for her first, and then probably scope her in a few months.

So she will stay on the Entorcort as well and finish out her 3 month taper since it will take 8-12 weeks for the Imuran to kick in.  Although, she did say that in combo it has a tendency to start working faster.  I really hope this is the case, because by the time I got to this point in this update, Gab has texted and she is NOT happy with the idea of feeling so badly for 8 + more weeks 
I wish there were something I could do to ease her mind ~ it's breaking my heart 

Oh ya, one last thing ~ doc said he's pretty positive that the MRE is correct and the "fistula " is actually a sinus.


----------



## my little penguin

Hugs ...
Sounds like a good plan.
Glad she had the blood work and hope the Imuran works quickly.
Not liking the fact that if a drug didn't work alone it is not an option for combo-
Doesn't leave DS much left


----------



## Crohn's Mom

> Immunogenicity of the 3 FDA approved anti-TNF-α agents (IFX, ADA, and CTZ) is different.13 *It is very important to emphasize that the remission rates for ADA + AZA or CTZ + AZA cannot be assumed to be the same as seen with IFX + AZA in the Sonic Trial! Likewise, safety for ADA + AZA or CTZ + AZA cannot be assumed to be the same as seen with IFX + AZA in the Sonic Trial!*
> 
> Unfortunately, the Sonic Trial does not address the question, “is there an exit strategy?" It is very important to determine if combo IFX + AZA treatment can be “stepped-down” to just IFX or AZA after 1-2 years of "deep remission" with endoscopic confirmed mucosal healing.
> 
> Conclusions:
> 
> Crohn’s disease is an incredibly devastating and debilitating disorder. The Sonic trial results are specific for IFX + AZA and should not be empirically applied to ADA + AZA or CTZ + AZA. More work needs to be done to develop a stratified treatment strategy, that will balance risks of combination IFX + AZA therapy with benefits of disease suppression.





Trying to search for info on the SONIC trial; specifically Cimzia + AZA; not finding a lot ~ I'm guessing that the bold print is why ?? 
MLP ~ do you know where I can find research on CTZ + AZA ??  :ybatty:

edit: and this SONIC trial was based on all "naive" patients :thumbdown:


----------



## my little penguin

Do key word search in google scholar first
Then go from there.


----------



## Crohn's Mom

We'll I can probably search for days, but with this particular trial I won't find anything cause it was based solely on Remicade + Aza/6mp. :yrolleyes:


----------



## my little penguin

Not sonic trial but search Aza and cimzia then you can see if there were any smaller trials


----------



## DustyKat

Thanks for the update T...:hug: 

So good to hear that the nurse was able to allay your concerns somewhat T. Still enough to take on board though. 

I'll be honest mate, I know I have said this before but I am still in two minds about the previous use of the 6MP. I know it didn't help Gab last time but I still wonder if her disease was beyond what 6MP could deal with at that time. 

I don't know, I am probably way off the mark with it. 

In Matt's case I don't think the Imuran helped all that much but perhaps it did help to keep him stabilised, it certainly didn't reverse or heal the complications. He had 2 fistula's and abscesses and if anything I think the antibiotics and IV Hydrocortisone did as much good as anything until surgery. 

Thinking about you guys and wishing nothing but the very best of love, luck and well wishes. :heart: 

Dusty. xxx


----------



## izzi'smom

Thinking of you, and wishing that it was easier for you, hon! :ghug:
but yay for pseudo polyps and sinuses!

Wishing she is feeling better quickly...:heart:


----------



## Crohn's Mom

Guess what - I have my girlie home ! For a whole week ! 
Momma's happy 

She started her Imuran today ... Crossing my fingers that it works and she doesn't get any awful side affects !


----------



## Tesscorm

I can see you doing the HAPPY dance! :banana: :banana:  enjoy every minute with her! :thumright:

Shhh... No negatives thoughts re imuran!!! All will go well!  :Karl:


----------



## Crohn's Mom

Awe thanks Tess ! :hug:

Honestly, the only side effect I am really thinking of is hair loss.
She seems to have a history of losing a lot of hair with new meds, and her hair has finally grown back in and looks so gorgeous again! I'd hate to see her lose it again ya know.
But you're right ~ positive thoughts only from here on out !!


----------



## AZMOM

Well T if it helps at all...... Methotrexate did positively ZERO for Claire's JRA. Ironically, now it seems to be doing the trick (along with the rest of our cocktail). 

Sometimes 2+2 CAN = 5. 

Big hug!!!

J.


----------



## my little penguin

sending lots of good med vibes her way....


----------



## Dexky

T, I'm sorry to see Gabs is still going through so much.  Glad she's still got that awesome sense of humor though.  I know it lightens your load immensely  Merry Christmas!!


----------



## DustyKat

Yay for home T!!!! Sooooo happy for Gab that she will get spoilt and sooooo happy for you that you get to eyeball her for a whole week!  

Imuran! Well I know that cause of your other thread. :wink: Just takes me forever to catch up...:yfaint:...must be the fecking dementia, I just keep answering the same posts over and over and over! God I hope it does the trick for her mate, I am wishing so hard I reckon I am fit to burst! 

Sending loads and loads and loads of love and luck that nothing but good comes your way! :goodluck: 

Onwards and Upwards!
Dusty. xxx


----------



## Crohn's Mom

We had a successful Christmas morning  

Barely got Gab to wake up and join us for gift opening - she's very happy with her new iPad - and now she's been back in bed the whole day. Poor girl is feeling awful today  
I don't get it ...


----------



## Farmwife

Sorry to hear about Gabs.:hug:
 Grace is still ill but happy to have her Cinderalla doll to sleep with. Strange Christmas that's for sure! Still try to enjoy it!


----------



## DustyKat

Oh no T...:ghug::ghug::ghug:...I can well imagine how heartbreaking this is for you.  

I hope more than anything that Gab is soon able to get on top of things again, bless her. :heart: Seeing your child sleeping all the time is bad enough but at this time of year...well it just makes it all the worse. 

Thinking of you guys and sending loads of love and healing thoughts your way. :heart:
Dusty. xxx


----------



## Catherine

Merry Christmas.  Hopefully Gab will shortly be on the improve.


----------



## Dexky

Sorry T, hope she gets better soon.


----------



## Tesscorm

T, so sorry Gabbie wasn't feeling well yesterday :ghug:  :ghug:  Hoping today's a better day for her!


----------



## Sascot

Glad she liked her iPad. Hope she starts to feel better soon. We are starting 6mp in January


----------



## Crohn's Mom

Good luck with the 6mp Sascot ! 

Thanks everyone for the well wishes  
She's not feeling any better, but she's doing "ok". She seems to think she may be getting the flu, or having some sort of allergy issue - sure hope it's not the Imuran :/


----------



## DustyKat

Oh T...:ghug:...I hope it's not the Imuran too.  

How is Gab now? Any sign that she be right about flu/allergy? 

Thinking of you both. :heart:
Dusty. xxx


----------



## Crohn's Mom

Thanks Dusty !
I just got home from work and she had slept all day  
We're gonna take her out to eat, and she's gotta go back to her apartment for the weekend because of work. I tried to talk her into calling in, but nope. 
She called her GI office today but didnt get a call back. Hopefully it's a cold and ANOTHER round of antibiotics will knock it out. 
This poor kid needs a break already!


----------



## DustyKat

Oh man T, she surely does...:hug: 

I hope they get back to her soon. She is one strong and inspiring young lady but she is well overdue for Lady Luck to pay a visit. 

Dusty. :heart:


----------



## Crohn's Mom

So she now has a very large lymph node in her armpit. It's kind of tender (thankfully?)
This IS because of possible infection/flu/cold right ?? 

Still no return call from the GI's office, and her GP is on vacation until the 7th, and the schools clinic is closed as well for the holidays ~ ugh !


----------



## my little penguin

Is there an oncall Gi since its evening????
DS had a pea size sore lymph node in his arm pit earlier this year- I freaked 
Ped checked it and declared him just fine - he didn't even have a cold then but had one earlier so ......
Hugs


----------



## Clash

C had a swollen lymphnode after starting remicade but it was located under his chin, I freaked too, MLP) but GI said it was fine. C later tells me, oh that lymph node swells when my allergies act up all the time...oh good to know now son since you've had allergies your whole life!! Hugs!


----------



## AZMOM

Im following along and praying for Gabs.  Keep us posted. And YES that lymph node WILL be because she's been sick. Think how much better you'll feel when the doc agrees. 

Love you - 

J.


----------



## DustyKat

WorryKat here T! Worry, worry, worry...remember that! :lol: 

If Sarah or Matt had a swollen lymph node I would be freaking too BUT in view of what she has been going through lately I would just console myself with rocking in the corner and NO not plucking my eyelashes out BUT chanting, this is normal, this is normal and all the while doing funny little gestures with my hands to ward off the evil spirits! 

I'm sure all will be well T but I will say a chant for you just the same! Good luck mate, sending loads of love and healing thoughts your way! 

Dusty. xxx


----------



## Dexky

Thinking about you and Gabs, T!  I'm sure it's nothing


----------



## Farmwife

I hope it turns out to be nothing!
Hugs to you both and HAPPY NEW YEAR!


----------



## Crohn's Mom

Her "cold/flu" symptoms seem better today - to me at least  
She came back home last night and showed me the lymph node this morning, and it is indeed very large. However she also has one in her neck on the same side (left) - which leads me to believe it is due to whatever cold/virus is making her sick this past week. 
We'll still inform the GI of course when they are back in the office, and keep a close eye on it - better safe than sorry


----------



## DustyKat

It surely is T...:hug:...Good luck and gentle squishy hugs coming your way. :heart: 

Dusty. xxx


----------



## Clash

Dusty, I was chanting in the corner too...poor family of mine they weather on while I do my freak out dance in the corner!!! Then C goes and tells the doc "Oh yeah it always swells when my allergies act up.":facepalm: Gee thanks C, could've told me that before I took my last valium to get me through

Crohn's Mom, I do remember our GI saying that he tends to see more swelling of the lymph nodes with viruses and such with his kids on biologics/immunosuppressants. He may have said that to save my sanity but it worked, well on what little I have left anyway:tinfoil:!! Glad to hear she is doing a little better. There is a right nasty bug going on around here right now and I'm praying it doesn't find our address!


----------



## izzi'smom

Somehow I missed the updates  on your post...hoping that she continues to feel better and that the lymph nodes are gone in no time! :ghug:


----------



## Sascot

Hope she is feeling better now.  More than likely a virus/bug of some description if she has enlarged lymph nodes.  Happens to me every now and again - doctor never seems concerned.


----------



## jessica22

Great!!


----------



## DustyKat

How is Gab going T?

Loads of love and healing thoughts heading across the pond, :heart:
Dusty. xxx


----------



## Crohn's Mom

Ok, this whole "letting my kid take over their own health" thing is  really not good for a control freak natured mother ! :lol: Dustykat, do you have any eyebrows left ? I'm gonna start on my toenails next ! :rof:

Anyhow, Gab just updated me (she has been back to school for a week).
She said the lymph node has gone down (yeah!), and no fevers lately.
She says she's still extremely tired all the time tho.
Also, she said the fistula/sinus tract (whatever it is! ) is now opening back up again !! ARGGh ! She has called her IBD nurse and spoken with her today, and she (the nurse) is supposed to talk to her doctor AND her surgeon :eek2: and call her back.
She also said that if it starts leaking again than they will want to do a dye test to see where it is leading. :voodoo:

I've been trying to give her "space" and not ask questions regarding her health every single day.  So I have waited a whole week. (longest week of my life! LOL) and this is the update I got today.
I am so proud of her that she has made the phone calls needed on her own, and didn't procrastinate tho ~ and I didn't know about it until AFTER she took care of it ! I have to say tho ~ this is much harder than I thought it would be! :rof::rof:


----------



## my little penguin

You are much stronger than I am right now.
Hopefully I get to your place in the gulp next ten years...


----------



## DustyKat

No eyelashes, no eyebrows, no fingernails, no toenails...starting on Mr Kat's eyelashes now. :biggrin: 

Well hush my puppies and prune my magnolia's! You have both done an excellent job! Gab is such a wonderful, intelligent and amazing young woman T but she has to get that from somewhere and since the apple never falls far from the tree it isn't hard to see where she gets it from. Well done Mum and daughter. 

Thinking of you both and hoping that all goes well for Gab. :heart: 
Dusty. xxx


----------



## Tesscorm

Lots of hugs going your way...  hope you hear 'it's nothing' very, very soon!!!!

And, with you re letting them start to take control and taking a step back...  I'm trying but am grasping that 'control' like a lifeline!  :lol:


----------



## Sascot

Sounds like she is being very organised and looking after herself well!  Don't know how you do it!  Dreading the day Andrew takes over - what if he makes a decision I don't agree with :ywow: :ylol2:.


----------



## Crohn's Mom

Ughh....I can't believe this (well, maybe I can :yfrown: )

Gab is sick and on antibiotics (z-pack) AGAIN !!
She went to the clinic today and she has a sinus infection they say.
Whoever she saw insisted she get a flu shot today as well.
Now, she says she feels worse this evening and her fever is rising !
"I feel HORRIBLE" were her exact words...

I've told her she needs to call her IBD nurse tomorrow morning and inform her.
This is absolutely ridiculous ~
and before I express how I feel about this with a bunch of not so nice verbiage, I will leave off here...utahere:

:voodoo::voodoo::voodoo::voodoo::voodoo:


----------



## Tesscorm

(((((ghug))))   Lots and lots of hugs to you and Gab!!!  Poor thing, she soooo deserves a break!!!

I hope she gets over this quickly!  :ghug:


----------



## Sascot

Oh no, what a shame.  There seems to be alot of horrible flu-like bugs this year.  I find it strange that they made her have a flu shot while she was actually sick.  Hope the antibiotics work quickly!


----------



## DustyKat

Oh T, poor Gab...:ghug:...she needs a break already!  

And you too Mum...:ghug:...I know you are feeling her pain as your own. 

In my thoughts, always. :heart: 
Dusty. xxx


----------



## Crohn's Mom

Gab says the sinus infection is getting better - however she still feels terrible.  

She is scheduled for a surgical consult on March 4th ( the day after her 20th birthday - go figure) 

How is it that none of these meds are working for her ?? 
I just can't wrap my head around it


----------



## Tesscorm

I'm so sad that she's still having all these tough times...  crohns and otherwise!  It really is so unfair that she just hasn't gotten a break! :ymad:

I know everyone's different but...  my aunt had a horrible time when she was first diagnosed (over 10 years ago), they tried lots of meds, her GI sent her to other GIs because he'd run out of ideas, etc.  She lost tons of weight and couldn't eat anything, etc.  It took a year or so to get her crohns under control but since then, she really has been fine!  I don't know all that she's tried (unfortunately, there's a bit of a language barrier...have to count on my mom to get details :yfaint but she eventually tried remicade, it put her into remission, she stopped remicade (don't know why) and has since been on imuran and low doses of cortisone (not sure why 'cortisone'???).  But she has truly, truly been fine for years now!!!  She watches what she eats but is not on a strict diet, she regularly eats out at restaurants, travels all the time, etc. and looks and feels good!

Gabby WILL find her miracle treatment!!!  You and Gabby are both so strong (and I'm sorry you've needed to be)!!...  just try to be strong a little more... :ghug:  :ghug:

Sending lots of wishes that things will turn around! :ghug:


----------



## Crohn's Mom

She's getting worse 

She called and said she just cant stay awake.  She said she got plenty of sleep last night and woke up today feeling like she hasn't slept in a week.  Drank an energy drink (bad i know), went to class and kept dosing off and can't concentrate.  Went to the  next class and same thing, and she's feeling really nauseous, so she left and went home to nap.  Woke up feeling the same, and drank a 5 hour energy drink (uggh !) and it still didn't help any.
She said if she's doing anything that requires her to move than she starts sweating like she's working out.
She is also feeling somewhat short of breath.

Her words were "Mom, somethings really wrong with me".
She also said, "if someone were to know what it feels like for their body to be slowly shutting down, I think this is what it feels like"


I put a call into her GI doctor for her because she asked me to do it.
Hopefully he will call back today.

Personally, I wish they would admit her and figure out what is wrong with her...Crohn's or otherwise.  My instincts are screaming that something is very, very wrong.
However, my over achieving, stubborn daughter says she can't possibly even go for even an appointment to be seen until Monday, and only Monday.
:ybatty::ybatty::ybatty:

I understand her dedication to her education and responsibilities but I can't seem to impress upon her how extremely important it is for her to realize that her health comes FIRST ! 
This is killing me.  I'm so scared something terrible is going to happen and she will be so much worse off 

I'm sorry...this is a vent I guess and I feel so out of control with this situation.


edit: oh, and she's really pale, her skins breaking out and she has lots of bruises all over she said


----------



## Farmwife

In my thoughts T.

HUGS TO YOU BOTH!


----------



## Sascot

Oh no!  I can understand you being so worried.  I really hope the GI calls you back soon and gets her into hospital to get checked out.  What a shame, she is trying soo hard to get on with her studies.  Hopefully the sooner they can find out what's wrong the sooner she can get something to get her better.  Sending lots of hugs!


----------



## Crohn's Mom

Brainstorming...but could this be a reaction to the Imuran ??


----------



## Tesscorm

I wish I could give you a hug and really be there...  I can imagine your worry!!!  Is there any way you can go stay with her for the weekend or visit for the day?

Sorry, no idea re the imuran??? 

What are her iron levels like?  With mine being so low lately, I really felt it with any physical exertion, ie. when away, we had to climb 65 steps (I know the number as it had something to do with the tour ), by the time I got to the top, I seriously thought I was risking having a heart attack - my heart was racing, I was sweating and could not catch my breath!  Same thing has happened a few times lately whenever I had to walk up a hill, walk up two or three flights (unless I went really slowly).  GP said it was all due to my low iron levels.  

It may not ONLY be her iron but, if she is anemic, it could be contributing to her symptoms.

:ghug:  :ghug:


----------



## Crohn's Mom

Fevers are creeping up ~ 99.3 

she also just admitted to a lot of pain in her lower right side and has been using Icy Hot for the past 3 days ( I had NO idea) to try and ease the pain...

ARRGGHHH...
I told her I'm about to come there and drag her back myself ! LOL
I have to find something to be positive about ...

She's CALLED me twice today ~ she NEVER calls me ...

Tess....YES, I do believe she has probably become anemic again ~ I am hoping to get an answer from that from her GI tomorrow since she just had her bloods drawn the other day. thank you


----------



## jmckinley

So sorry Gabi is feeling so bad. I can't imagine the stress of her being sick and not being there. I will probably experience it soon enough and I know my instinct would be the same. Pack and run! Totally off the wall and maybe unrelated, could she have mono?

I hope you get her admitted or something so she is recovering soon!

HUGS!!!


----------



## Crohn's Mom

JM, thank you..

funny thing (and please don't take this the wrong way...) I was explaining it all to my husband tonight and his response was " Could she have Mono?".
well...my response was..."Don't you ever mention the word Mono again with Gabrielle to me in the same sentence!" LOL

The reason for this is that is exactly how Gab's diagnosis started.  Of course there is no way you could know this, but my hubby..oh ya, he knew ! LOL.
I spent 8 months "doctor hopping" and fighting them all, while they were telling me that she had "chronic mono" and nothing else was wrong.  So...even tho you couldn't have known...that word Mono sends chills down my spine 

So...long story short...no it's not mono 
I can definitely see how her symptoms could lead one to believe that is the case tho !!


----------



## DustyKat

Oh T! :hug::hug::hug::hug::hug:

As Tess has said, shortness of breath is a sign of anaemia. The sweating may link in with the fevers.  

Okay, me being the queen of make your kids independent...not! Go to her T, you need to see her and you may need to take some control. I am in no way saying that Gab can't handle this but sometimes when you're ill it's nice if someone else comes along and takes charge. You know you need take the step to get yourself seen but you just can't do it but someone you love and respect does it for you and you follow along, know what I mean? 

Also you know what our IBD kids are like. They are strong and independent and never want to be a bother. She is ringing you T but probably doesn't want to say to come to her. Just ring and tell her you are coming, it will never be a wrong decision. 

In my thoughts hun. :heart:
Dusty. xxx


----------



## Dexky

I tend to agree with Dusty.  Until you can hold her hand and look her in the eye, you're not going to be able to concentrate on anything else!  Thoughts and prayers T!


----------



## Crohn's Mom

I think you all are right - I will try and go see her this weekend  
We were scheduled to meet half way for lunch Monday and I took the day off work to spend with her, but I don't think this mommas nerves can wait that long lol. 

Still no call back from the GI


----------



## dannysmom

Hugs T! I'm with Dusty & Dex ... go to her.  Somethings off and hopefully they will draw bloods ASAP.


----------



## katiesue1506

I was the exact same way when I was super anemic in college. I would wake up for class, go (muster through walking up the stairs and to/from class), come back and sleep til my next class. I was literally sleeping 16 hours a day or more and still tired.

My levels at that point were 8.8. 

It could also be worth a liver enzyme test to check on the Imuran thing. How long has she been on it at this point? I would say it could either be a reaction (if shes been on it for 1-6 months (the activation time of Imuran)) or it could just be that her body isn't metabolizing it correctly. I was on Imuran for years until I stopped producing the correct levels of the good Imuran and was producing more bad Imuran. They used Allopurinol to trick my body into correctly metabolizing it.

Here's my post from a long time ago that explains the whole Imuran deal: 





			
				 katiesue1506 on 2-9-11 said:
			
		

> The liver processes the Imuran in to one of two things: 6MMP and 6TG. Now some people metabolize it entirely into 6MMP-- this is what causes Alkaline Phosphate levels to rise in the blood and causes most people to be taken off for too high liver counts. Some people metabolize it entirely into 6TG and 6TG is what is good for fighting Crohn's, but it also lowers the white cells in the body (which is okay if they are being monitored and are at a decent level). 6TG is what controls the T-cells in the body. Most people metabolize Imuran into a mix of both.
> 
> This is why you have to get blood tests so often on the drug. Depending on how your body metabolizes it, you may have different symptoms. I'm currently producing wayyy too much 6MMP on Imuran, and not enough 6TG. A way to fix this is to "trick" the liver into producing mostly 6TG through a secondary medication known as Allopurinol.


----------



## Crohn's Mom

Thank you Katiesue ! your insight is always so helpful 

The GI doc just called and he agrees with me that he needs to see her asap ~ so seeing as how its the weekend it will most likely be Monday.
He also said that they haven't received any of her blood results since she has started Imuran !! That frightens me ! So shes gonna have to call the lab where she had them done and have them faxed immediately !

Somehow, knowing that he agrees with me that her symptoms can't be put off ( and the only things I told him about was the extreme fatigue, sweating, and pain) , calms me a bit.  I wish she was being seen today, but as long as she can stay stable I will be ok with waiting till Monday.  I am however going to talk to her (she's sleeping and not answering my call) and pretty much demand/beg her to come home for the weekend so that I can keep an eye on her and assess her myself.


----------



## Crohn's Mom

Results have been faxed and she's going to come home tomorrow ! 

ahhh....I can take a little breath !


----------



## Farmwife

Your baby's coming home!!!!! Ya!!!!!


----------



## AZMOM

T!!!!!!!! I was behind. 

Glad you're getting that girl HOME. 

I'll be praying and waiting to hear......


Send her a hug from Claire. 

J.


----------



## Tesscorm

I'm so glad she's coming home!!!!   :ghug:  :ghug:


----------



## Clash

Glad she is coming home!!!:ghug::dance::ghug:


----------



## my little penguin

:hug: Glad she is coming home
Please have her read the warnings about 5-hour energy- A real DANGER for even kids without other issues.:eek2:



> The dispute over 5-Hour Energy’s claim also comes as regulatory review of the high-caffeine drinks is increasing. The Food and Drug Administration recently disclosed that it had received reports over the last four years citing the possible role of 5-Hour Energy in 13 deaths. The mention of a product in an F.D.A. report does not mean it caused a death or injury. Living Essentials says it knows of no problems related to its products.
> 
> The issue surrounding the company’s “no crash” claim dates to 2007, when National Advertising Division began reviewing all of 5-Hour Energy’s marketing claims. That same year, the company conducted a clinical trial of the energy shot that compared it to Red Bull and Monster Energy.
> 
> At the time, Living Essentials was already using the “No crash later” claim. An article on Wednesday in The New York Times reported that the study had shown that 24 percent of those who used 5-Hour Energy suffered a “moderately severe” crash hours after consuming it. The study reported higher crash rates for Red Bull and Monster Energy


from:

http://www.nytimes.com/2013/01/03/business/5-hour-energys-no-crash-later-claim-is-disputed.html?_r=0




> The federal government and the New York Attorney General's office are investigating after the Food and Drug Administration received claims that the drink 5-Hour Energy may have led to 13 deaths and 33 hospitalizations over the past four years.


from:
http://abcnews.go.com/Health/hour-energy-drinks-cited-13-deaths/story?id=17725137


----------



## Crohn's Mom

Thank you MLP !
I sent her the link in an email ~ I can't stand that she drinks those, or monsters, or any of the kind ...however, I do understand why she does unfortunately.
I am consistently complaining to her about those drinks, so I am sure the new email will be nothing new to her from me ! LOL


----------



## jmckinley

:yfaint::yfaint::yfaint:

So sorry! I had no idea of your history with that "M" word! I only mentioned it because I had it in college. I was treated several times at the infirmary for colds/bugs, but never got better. I just slept for weeks until my Mom came and got me and took me home and to my Dr. It just sounded so familiar.

I am SO glad she is coming home ...and going to the Dr. Mom's intuition is right!

Hugs! Hope you get some answers soon.


----------



## DustyKat

It is sooooooooooooo good to hear Gab is coming home.  What a relief for you T.  

I so hope all goes well with the appointment mate and you get some solid answers. Sending loads of love and healing thoughts your way! :ghug: 

Dusty. :heart:


----------



## Sascot

Thank goodness she's coming home.  Probably feels like she's needing a bit of looking after just now!  Hope she stays stable over the weekend.  Good luck with the appointment on Monday.


----------



## Tesscorm

Good luck at today's apptmt!!! :ghug:  :ghug:  :ghug:


----------



## Crohn's Mom

Thanks Tess 

There was a misunderstanding I guess and so we didn't get to go in yesterday :/
Her doctor called and apologized and promised to get her in this week to see him.
So, his secretary called already this morning and looks like we will be heading there tomorrow afternoon; just waiting on confirmation.

I was too mad to update yesterday lol; I've found it's better sometimes to hold my tongue if I can :ylol:

Doctor did finally get her last 2 blood draw reports tho, and said everything looked good ~ including her iron levels.
Last one was done 2 weeks ago, so that could be different now as far as possible anemia causing her issues, but we shall see i guess.
He said even tho her bloods look good, he's no fool and realizes that she is on two major immune suppressive meds and whatever is going on with her needs to be checked out asap.


----------



## S mom

Good luck tomorrow.  It must be good to have her at home - I think it must be so hard to deal with everything when you can't actually see her for yourself.  My son will be going off to university in Sept. and that's what I fear the most - having him not feeling well and not being there to see him in person and assess for myself ('cause I will always imagine the worst!).  Thinking of you...


----------



## Dexky

Good luck tomorrow T!


----------



## Tesscorm

How frustrating! :voodoo:  but am glad she's seeing him tomorrow!  I'm hoping she's feeling a bit better now that she's home with you and being properly spoiled! :thumright:


----------



## Sascot

Good luck with appointment.  Hope she is feeling a bit better!


----------



## Crohn's Mom

I'm glad we went ~ what a truly caring doctor she has 

In short (because momma's tired), he ordered a bunch of blood tests, chest X-ray , urine test, and stool tests.
We had them all done before we left the building ! 
I guess it's one positive to having CD huh ? Stool tests done on demand ! LOL

Seriously tho, that's one of her "newer" symptoms is constant bathroom trips, so we were able to get the stool tests done before we left there.  Saved me another hour and a half trip, thankfully.

Doc said he's going to get this taken care of because quite frankly she deserves to feel healthy, and she's been through enough, too much.  Bout made me cry when he said that because you could feel that he meant it. 

So now we wait..
Except..I already can see her blood results online 

Here are some "low" levels ; and in my mind even tho they were "fine" 2 weeks ago, are pointing to anemia now.  Of course I will wait for the other tests to come back , and have the doctors take on it ! 

Ferritin 6  (normal range 11-307)
MCH 32.8 (normal range 33.1 - 34.4)
CRP 1.1 (norm range 0.0-8.0) (not too bad ~ but a little inflammation none the less )

there were many other tests run but these were the ones that caught my eye.

We shall see I guess ~ 
She is staying the night tonight due to being exhausted, so I am happy to have her home with me


----------



## Clash

I know you are glad to have her home with you. I hope she gets to feeling better soon. Sendings hugs and support your way!


----------



## Catherine

Ferritin is also a marker of inflammation.  Sarah had one reading of 80 a month prior to dx when the gi told her levels were actually close to zero.


----------



## Sascot

The doc does sound good, so nice when they seem to actually be trying to help.  Hope the tests come back soon so they can move forward with a plan to make her feel better!


----------



## Tesscorm

Hope you get the results quickly!!  Is she beginning to feel any better? :ghug:


----------



## DustyKat

Hey T...:hug::hug::hug: 

It so damned good to hear that the appointment went well and that Gab has such a caring and insightful doctor. It really must help ease your mind when she is away from the nest.  

Do you have any other results yet? 

Thinking of you both, always. :heart: 
Dusty. xxx


----------



## jessica22

My mom can definitly relate to what you have gone through.I was diagnosed with crohns at the age of 6 and I know it can be tough watching your child go through so much..I just wanted to commend you for being such a good mother.Until this day my mom has never missed an appointment and im 22 and in college lol.I hope everything works out


----------



## Farmwife

Oh jessica22, your so sweet. It's words from children (adult now) with IBD, that gives hope to us parents!

HUGS


----------



## jessica22

That makes me feel so great and coming from someone who had strokes,seizures and bloodclots all before the age of 13 there is light at the end of the tunnel and i'm so glad that I can help encourage others


----------



## Tesscorm

How is Gabby?  I hope she's on the road  to feeling better!! :hug:


----------



## Sascot

Also wondering how things are.  Hopefully settled down :biggrin:


----------



## Crohn's Mom

sorry I haven't updated...I just don't have much positive to say, so I have held off.

Gab is not getting any better ~ slowly worse.
She has been on antibiotics twice again, just in the last few weeks.
They did blood work again and her white blood counts are high now.
She also has two golf ball sized lymph nodes in her neck, one on each side, they don't want to go away.
The pain in her lower right side is intensifying as well.
And now, to top it off, she says she is getting very dizzy lately and has once blacked out for a few seconds when she turned her head to quickly.  Also, her thoughts are VERY scattered and her short term memory is horrible. 
She called me the other day after she went to the school clinic because she couldn't remember where she parked and we talked on the phone for 20 mins. while she looked for it.  

I had started another thread on Imuran and allergic reactions because we weren't sure if she was having one or not.  
She went off of it for about a week, and then tried to resume it, (per doctors orders) and she is definitely become allergic.  Her throat started to itch badly, and her face, and her chest was feeling heavy within hours after taking it.

Just don't know where she's going to go from here at this point.
We have several appointments on the 4th to see her surgeon, her GI, and her GI nurse.

Oh and the lovely ulcers have returned in her mouth and she said she feels like they're in her throat as well...:ack:


----------



## Tesscorm

Gosh, Tracy, I'm so sorry to hear that Gab isn't doing better!  

I would imagine the dizziness and memory issues are related to deficiencies (ie iron deficiency can cause mental 'fuzziness'), I know I've asked this before (but, age brings about it's own 'fuzziness' ), would she now consider EN supplementation (or, even better, a few weeks of exclusive EN)?  Won't take away all her issues but may help with some???

I'm not sure about this but are imuran and methotrexate interchangeable?  I know there are slight differences in how they work/what they do, perhaps she could tolerate metho better??

I'm thinking of you...  it's got to be so hard and frustrating to not see her get better yet!  Lots of prayers for you and Gab that the apptmt on the 4th can bring some treatment plans!! :ghug:  :ghug:  :ghug:


----------



## upsetmom

:hug:...I'm so sorry to hear this.


----------



## Catherine

Also sorry to hear.  Low B12 can also cause memory problems.


----------



## my little penguin

Hugs
Second the Mtx -- not sure did she try that one.
DS had a bad experience with it but other have been good.
Hope the docs can come up with a good plan.


----------



## Dexky

I'm sorry things aren't going well for Gabs, T!!  She's been through so much.  Has she done scopes since the stoma takedown or any other imaging?


----------



## dannysmom

Hugs T! Sorry Gabby is not doing well! I sure hope there is a new plan in place come the 4th.


----------



## Sascot

So sorry to hear she is not doing very well.  I hope they manage to come up with a good plan next week - glad you don't have to wait much longer.


----------



## DustyKat

Oh man T...:hug::hug::hug: 

I am so gutted to hear that Gab is going through all this.  You are both in my thoughts as always hun. 

Loads of love, :heart:
Dusty. xxx


----------



## AZMOM

T.


----------



## Crohn's Mom

> Also sorry to hear. Low B12 can also cause memory problems


She takes 1000mg B12 a day ~ I wonder if it's enough ?




> I'm sorry things aren't going well for Gabs, T!! She's been through so much. Has she done scopes since the stoma takedown or any other imaging?


Thanks Dex. She had scopes last June that showed her CD was back (mildly) at the resection site. She had an MRE in December that basically showed the same thing. 



> Hugs
> Second the Mtx -- not sure did she try that one.


She hasn't tried Mtx because she is of child bearing age so they wanted to try the Imuran first.  Maybe that will be the next plan?



> I would imagine the dizziness and memory issues are related to deficiencies (ie iron deficiency can cause mental 'fuzziness'), I know I've asked this before (but, age brings about it's own 'fuzziness' ), would she now consider EN supplementation (or, even better, a few weeks of exclusive EN)? Won't take away all her issues but may help with some???


She has started an Iron supplement, but maybe it's not working yet ? She sent me a picture via text the other day of her eyes ~ they're so dark underneath they're almost black  
As far as EN, that's a no.  However, she has started cooking every night for herself, and shopping mostly at the whole foods store and she said that she is seeing some results ; at least with her stools finally being formed. 

I am so hoping for some kind of answers and solution tomorrow when we meet with the surgeon.  Maybe a fresh set of eyes will "see" something that makes sense ?? At the very least we'll know if she's facing surgery again for the fistulas.  (they have opened up again now that she has been tapering the Entocort).

Thanks everyone for the hugs and well wishes ! :hug:


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## Dexky

How'd it go today T??


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## Tesscorm

Lots of hugs and luck for tomorrow's appointment; will be thinking of you!  I hope you come out with some answers and a solid treatment plan!!!

Please update when you can! :ghug: :ghug:


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## CarolinAlaska

I'm so sorry Gab is doing so poorly.  I'm saying a prayer right now for her.  I know when Jaedyn was at her worst, she had seizures and learning problems.  It had a lot to do with nutritional deficiencies, I believe.


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## DustyKat

Thinking of you both T...:ghug: 

Dusty. :heart:


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## Clash

:ghug: Just wanted to send hugs and support :ghug:


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## Tesscorm

Thinking of you!!!  Hope apptmt went well yesterday! :ghug: :ghug:


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## Crohn's Mom

Thanks everyone ~ and sorry !
I'm so far behind on everyone's updates, and obviously my own! It's been a busy week with the kids birthdays and appointments, and work, and....yada yada :lol:

Anyhow, the appointment with the NP went well.  They ordered some more blood tests to make sure the last infection was better, and to check her iron levels again.  Infection is cleared, but she is still very anemic.  When she was asked if she's taking her Iron supplements as she's supposed to, the answer was "sort of" :ack:
So the nurse told her if she doesn't get her iron under control and take her pills than she will be driving there for infusions ! :lol: I think that got Gab's attention, so hopefully she will be better in remembering them. 

Since she is allergic to the Imuran, they are wanting to try 6mp again.  They think she may just be allergic to the "Aza" part of it, and not the 6mp, since she took it pre-first surgery.  So, she is going to start that this week and see how it goes.  If that doesn't work out, than I suppose we will have to discuss Methotrexate ?

The appointment with the surgeon was a joke ! Arggh ! We waited 4 hours in between appointments to see him , and then he was called out for an emergency surgery!  They had us see one of his residents, who quite frankly, was an IDIOT ! 
He honestly looked at Gab and asked her why she was there, and if she'd ever had surgery, and did she just stop by to say hi !! 
We were sooo mad, to put it mildly.
Her fistulas are closed up at the surface right now, so he couldn't see the problem.  I showed him pictures from just a few weeks  ago, and what they looked like, but he didn't "get it".  So, it was a worthless appointment.
Gab thinks that the Imuran was helping to heal the fistulas, so hopefully the 6mp will work, and do the same.  If they open up again, then we will just call and schedule another surgical consult, and hopefully the actual surgeon will be there ! :lol:

I am hoping that if Gab gets herself disciplined with her medications and supplements than the majority of her symptoms will ease.  
She also admitted to not being very good at taking her Omeprazole either.

Gotta love her, but geez, I sit here trying to figure out how to help her, or why she's not getting better, and find out that she's barely taking her meds ! It's enough to drive a momma batty ! :lol:


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## AZMOM

T - You are a great Mom with a mixed bag of news.  And you're giving the rest of us a great preview of when the Crohn's Chicks leave the nest!!!!!!!!!!

Praying 6MP will do well for Gab and that she'll TAKE HER MEDS........  Love her heart.........

PS I despise stupid resident/attending/fellows.  :voodoo:

J.


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## my little penguin

Does she have a cell phone??
Suri could yell at her
Lots of apps with pill reminders
Pillboxie is what we use
Add a pillbox
Get up , meds , brush teeth then wait to eat 
For evening - meds teeth then bed 

Easier to remember that way.

Hope that helps
Sorry about the surgery consult


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## Tesscorm

:ymad: :ymad: at the surgeon consult!!!  Not only a waste of time but you weren't able to get opinions from him! :voodoo:  Hopefully, the 6mp will work and you won't need another consult! 

Glad the infection's gone! :banana:  And, hopefully, she will remember to take her supplements!  :ybatty:  Ugghh, these teens/young adults ARE enough to drive parents crazy!!!  I've been told a dozen times...  'as kids get older, it doesn't get easier, it just changes!'  Sooooo true! :lol:

I so hope that with the infection cleared up and Gabby getting on top of her meds will get her turning the corner to feeling much, much better!!! :thumleft:    :thumright:


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## Sascot

How frustrating waiting round for the surgeon for nothing!  Had a day like that today myself! :voodoo:
Hope the 6mp helps.  Good idea to set an alarm on her phone to take her meds.  My son's iPod beeps at him every day :lol:


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## Dexky

my little penguin said:


> Does she have a cell phone??
> Suri could yell at her


College kids!!!  Suri might remind her on time, but the odds of her being any where near her pills when she gets the reminder are slim!  Maybe Suri could remind her to put her pills in her purse too

Hope 6mp does the trick T!


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## Clash

Crohnsmom...ughhh on the surgeon!!! We use phone app, pillbox and reward system for now since C is still at home. He is usually good about taking them, I hope it lasts when he goes to college.

I am so thankful it isn't my college age daughter with CD, she forgets everything...I mean everything and what she doesn't forget she loses. She was a victim of identity fraud last year, her id info was stolen(best the cops can figure) off an application to a college she applied to, along with a number of other students. So I'm trying to get all the notification stuff turned in to appropriate agencies and ask her to make a copy of her ss card, birth certificate and licence. She doesn't have them!!! She's not sure where they are at but she does have her passport! Well whoopee...if you want to skip the country your in business kiddo, but if you want to prove you exist your screwed!!! Ughhh


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## S mom

So scary, my son leaves home for university this coming September - so hard to let go even with just the regular day to day stuff - let alone all this other Crohns crap too!


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## DustyKat

How are things going T? :well: 

That whole surgical thing sucks big time...Grrrrrrrrrrrrr. 

How did Gab go remembering the Cimzia? 

I know with Sarah the only way I ever got her to remember her meds was to have them in a dosette and sitting next to the tap on the bathroom vanity! She couldn't miss them that way when she was brushing her teeth.

Thinking of you both. :heart: 

Dusty. xxx


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## Sascot

Funny, I was just wondering how things were going as well!


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## Tesscorm

^^^Funny, me too!


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## Crohn's Mom

Just a little update (sorry I have been so busy lately and when I do come on here I try and concentrate on supporting the others  )

Gab is sick AGAIN ! I am on vacation out of state right now and she called me yesterday and said she is so sick, and feels like she has strep throat X's 10! poor baby 
She made an appointment with the clinic at school, but missed it because she had to go get a new tire and her wheel fixed and it took much longer than expected.  Hopefully she can get in today because she really sounds awful.  
I just can't believe how many upper respiratory/sinus/throat infections she is getting these past few months. 
Mugsymagoos , did your girl get a lot of infections in the 7 months she has been on Cimzia?  

By the way, Gab _used_ to be VERY organized with her meds (when she lived with me LOL) It just seems the busier she gets with school, work, and volunteering at the VA hospital, and school clubs, the less she remembers her meds.  I think after the first surgery and "all" she had to take was her Cimzia once a month for quite a long time, than the good habits were broken; then as time goes on she is back up to taking something like 15 ? pills a day between vitamins and meds and it's hard.  I have suggested setting her iphone to remind  her and so has her nurse, but she doesn't like that idea. :ybatty:
Hopefully she's getting better these past couple of weeks tho. 
Thanks for all the suggestions ! :heart:


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## Clash

My non-IBD daughter is the same with any kind of meds. If all is flowing well at school and it is a slow semester then any illness she gets will be quashed quickly because she'll be on top of meds but this semester has been really busy and I have found a bottle of unfinished antibiotics for an upper respiratory infection she had a the beginning of the semester. I swear that child will have built up a resistance to every antibiotic known to man if she doesn't stop with the "Oh I felt better so..." Ughh!

So sorry to hear Gabs is fighting another illness! I hope she is able to get into the clinic and get it seen about today! I hope you enjoy your vacay, I know it can be hard when you are worrying about her! ((HUGS))


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## Crohn's Mom

OH and by the way ~ one of her fistulas started opening up again about a week after stopping the Imuran ! We haven't called to make another surgical consult yet because were hoping that if she's ok taking the 6mp it will take care of it.


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## mugsymagoos

Hey T....

Sorry Gab is feeling sick.  I am in the same boat with Kayla, but now she is feeling really sick because of the Cipro and Flagyl they put her on because of the fistula.  While on the Cimzia/6mp combo, I would not say she got TOO sick with colds, sore throats etc... a little bit here and there.  Last week she was vomiting and had NO appetite at all.  Now that she will be starting Stelara, I dont know what type of side effects this new drug will have.   I have to read up on it some more, but something has to start working!!!!  So frustrating!  I am also looking into the stem sell transplant also...(Dr. C is not opposed to looking into this if Stelara does not work).  I feel like I spend most of my days researching and researching.... something has to work!

Therese


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## Dexky

I'm sure that news put a damper on your spring break T!  When are you guys heading home?


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## Tesscorm

Aw, I'm so sorry she's not well and, like Dexky said, not the sort of news you want to hear when you're away on a much deserved break! 

I hope the 6mp can heal up the fistula.  How long do you think it would take before you/Gabby would begin to see some improvement?

I hope she does get to the doctor!  Hopefully, they can help her get rid of the infection so that it doesn't worsen any more!

Too bad she doesn't like the phone prompt for her meds.  As you know, I find it hard to remember my own supplements!   But, I've done exactly that...  set up a calendar reminder to prompt me to take the iron supplement.  It does help!

Lots of hugs!!! :ghug:


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## my little penguin

hope 6-mp does the trick for her.


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## DustyKat

Oh no T... Poor Gab and you! :ghug: 

I hope she gets in to see the doc and they can sort something for her. :heart: 

As to the meds...well with all my rabbiting on about handing the reigns to Matt and blah, blah, bah...dosette all ready and rearing to go, blah, blah, blah...I still have to remind him to take his meds! ugh! :lol: 

Thinking of you guys!

Dusty. xxx


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## AZMOM

T - you shoulda just dropped her off on the way north. EJ and Claire will make her take her meds. . I bet they could be WAY more persistent than the I phone! Right Dex? 



J.


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## Dexky

I don't know J…EJ takes a fair bit of reminding lately!!


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## DustyKat

Awwwwwww, like father like son. :lol2:


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## AZMOM

T - Looks like we'll just have Dusty call her. 

J.


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## Dexky

Maybe she could call Acra too!!


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## DustyKat

Ooooooo, I could be like a hired gun! :lol:


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## Crohn's Mom

Y'all crack me up! LOL 

I'm 3 hours away from being home thank gawd! 
Just thought I'd update and tell ya's that gab finally made it to the clinic and ended up getting two injections for antibiotics and some meds for home too. She said she's already feeling a little better today - whew ! 
I'm wishing I got that shot at this point - I'm pretty sure I've probably got the same thing she does now. Good thing I had the hubby fly up to meet me and drive JJ and I home from our vaca ! (I'm a bit spoiled sometimes lol)


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## DustyKat

Home sweet home!  

I hope Gab is starting to feel better T??? :ghug: 

Dusty. :heart:


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## Crohn's Mom

So guess what....

Gab did her Cimzia injection this past Wednesday, and the fricken Strep infection came right back with a vengeance ! Arrggh...So, she's now on yet another antibiotic.  They wanted to give her another shot, but her poor tooshie was still very sore from the last two.  
They ran bloods and they're not looking so good either.
WBC 12.1 (which is expected with infection of course)
Platelets 406 (140-400)
Neutrophils 9.22 (1.50-7.80)
Monocytes 1.05 (0.20-0.95)

Im wondering if those are high due to the strep infection, or if its Crohn's inflammation coming back ?? 

Also...she's definitely allergic to the 6mp as well ! Go figure 
She's waiting on the doc or nurse to call her back to see what their thoughts are on the next step...
Poor kid just can't catch a break.

She has been VERY good about taking her meds lately tho ! I think she's really sick and tired of being sick so much so she's trying !


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## nogutsnoglory

Why are they injecting in her toosh? I was told thighs and stomach only.


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## Crohn's Mom

NG the "tooshie" shots were antibiotics a little over a week ago for her strep infection


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## my little penguin

Hope the docs can figure something out for her-maybe MTX this time???


Sorry the strep came back


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## DustyKat

Oh man T...:hug:...my heart breaks for you both.  

I think it would be difficult to say at this point what is causing the increased results. Infection would definitely be a factor, I would like to rule out Crohn's but couldn't say with any degree of certainty that isn't playing a part.  

Dusty. :heart:


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## CarolinAlaska

Sorry to hear about the strep.  Jae gets recurrent strep infections too .  She got one right after she got the NG tube put in and had to have the shots too, but she asked for her legs instead of her bottom (she's a skinny little thing) and they abliged her.  We feel for your daughter struggling with this so!


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## Tesscorm

Tracy, so sorry that hear that Gabs is still fighting to feel well!  ugghh :ymad:

I hope she's able to get rid of this strep once and for all!!!

Maybe try to suggest EEN to her again :ack:  I know she hasn't been receptive to the idea in the past but...  just maybe she'll consider it now.  When remi wasn't doing enough for Crohnsinct's daugher, adding a round of EEN (while continued remicade) got her over the hump and she's now doing well on only remicade.

Thinking of you both... :ghug:


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## Crohn's Mom

Wow ~ I didn't realize how long it had been since I updated this thread ! :eek2:

Anyhow, I'm about to end it now ~
Cimzia has definitely failed her.

She had a colonoscopy on June 26th and we received the results from her return visit to her GI doc, on July 11th.
Basically...

*Ulcer and staple noted at anastomosis
*Multiple ulcers in terminal ileum
*Few apthous ulcers in the transverse colon

We also saw the pictures of said ulcers, and they are not pretty and rather large :voodoo:

Sooo....Long story short, Cimzia is no longer and the GI doc recommended Remicade immediately. ( I was very impressed that she started it within SIX days ! )

She had her first infusion today; It was relatively uneventful and went as well as can be expected.  
I have high hopes that Remicade will be the right treatment for her, as I refuse to give up hope ! :wub:

We were really hopeful for the Cimzia, but alas, it is no more.
I hope it continues to do well for those that it is helping right now, but our new motto is GOOOOO REMICADE ! :dance::dance: :lol:







this is her getting her first Remicade infusion today


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## my little penguin

Hope remicade is your dream drug for a very long time


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## kimmidwife

I hope remicade is the answer and puts her into a nice long remission!


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## Dexky

Please Remi!!!  Be the one!!!


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## DustyKat

R-E-M-I-C-A-D-E GOOOOOOOOO REMICADE! :dusty::dusty::dusty:

Wishin', hopin', prayin' and everthingin' that this is Gab's miracle drug T!  

Love the pic! Goddamn she is trooper T, bless her. :heart: 

Dusty. xxx


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## crohnsinct

Remicade has done it for O!  Hoping it does it for Gabs!


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## Crohn's Mom

Don't have time to start a new thread for Her Remicade journey right this minute but I do have time to tell you all that this stuff truly is her Liquid Gold!! 
She feels amazing today!!! 
She worked her full work day- stayed energized and still feels good after work! 
And .... This one is blowing my mind.... The two "fistula" openings  on her scar are already healing ! The difference in the way they looked yesterday and now today is unbelievable ! 

I am soooooo happy about this right now I could scream !! 
Goooo Remicade - keep it up for my special girl!


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## Tesscorm

:dusty::wine::dance::wine::dusty:   Amazing news!!!!!


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## my little penguin

Woo Hoo
So glad the miracle drug is working!!
 WE loved Remi...


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## crohnsinct

WOWSA!  That is amazing.  I have heard it is great for peri anal issues!  Fingers crossed things get better and better!


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## Crohn's Mom

I tell ya - I had high hopes for this to work quickly but I seriously didn't expect ANY results to be seen today ! 
I thought maybe a couple weeks ? 
Wowza!


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## Clash

AWESOME NEWS!!! So glad to hear she had such improvement today!!


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## kimmidwife

That is amazing!!! I am doing a happy dance for you guys! :dance: :dance: :dance:


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## DustyKat

I AM SO HAPPY FOR YOU BOTH T!!! 











So long coming and so well deserved! May this a lifetime for your precious girl. :Karl: 

Dusty. xxx


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## Dexky

That's great news T!!  Maybe they could let Austin and Gabs be Remi mates!


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## Superhuman

Crohn's Mom said:


> So today was the day Gab started Cimzia !
> 
> I was so nervous about it, and she was so excited.  I can understand her excitement; it's a hopeful window into a new, healthy life !
> I just didn't want to have to give her the injections; I always feel like I'm the one who has to play (bad guy).
> Well, she completely surprised me and the nurse....She did it on her own the first time! WOW ! The nurse helped her to guide the first one in and make sure she was doing it correctly.  Then she did the second one all on her own with no problems.
> 
> For those of you that don't know, Cimzia is taken once a month, with 2 injections.   Gab chose to do them in her stomach (which also surprised us!) instead of the thigh; but you can do them either way, or one in each.  It is the patients choice.
> 
> Today was her first dose of the "loading doses".  She takes the 2nd round in two weeks, and the 3rd two weeks after that, then once a month.
> So far there are no ill side affects and she feels just fine except she is quite tired now so she is napping for a bit.
> Oh, and she said the injection didn't hurt a bit ! We warmed the syringes to room temperature for around 10 mins before administering.  And, she didn't use a cold pack or anything on her injection site before hand.
> 
> I thought I would start this under a new thread for the parents of children who may be considering taking this, or are taking this.  Maybe we can help each other !
> I know I probably should have posted under the "treatments" thread, but I also know most of the parents come here for their advice and support.
> 
> I suggested to Gab that she keep a daily journal for a while of any side effects, feelings, symptoms, etc. So that possibly she can help others who are considering Cimzia since it is so new to Crohn's ( I believe it's only been 2 years since it's been started for treatment of Crohn's)
> 
> Anyhow, It's a great day so far here at our home !  Fingers crossed that this will be her wonder drug and she can begin a normal healthy teenage life ! :hug::hug:
> 
> 
> p.s. I had no idea which "icon" to use for this thread :lol: I hate the word "drugs" but it seemed about as fitting as I could find in the choices :lol:


Hello there,
I too am a mom of a Crohn's kid. I would like to offer an out dated blog that I worked on for a while to offer any advice that I have. Taylor was diagnosed when she was 2 with Cronh's and Colitis. She now at 16 has a long list of diseases. The meds cause severe issues that are very hard to fix. Taylor has had a complete colectomy and several other surgeries. She has been drug free, and flare free for 3 years. She does suffer from seizures due to remicade. I remember feeling nervous about every new drug that she took and Taylor too feeling excited for a new start. Your gut instinct is right. Taylor is a raw-vegan now that juices daily and this has changed her life. We manage her seizures with molasses if you can believe it. In the process of a long list of medications for many years, Taylor has these conditions. Epilepsy, Psuedo Tumor Cerebri, (spinal fluid back-up) Osteopenia w/degernative disk disease in lower lumbar and Von Willebrands Disease. (severe bleeding disorder) I blame these harmful chemicals that I allowed Taylor to be treated with. Which would only relieve her symptoms for a period of time and then stop. We would then have to try something new. Supplements and organic rich nutrient food is how she got her life back. Yoga and meditation also kept her in a healthy mind set which is so important. Of course asking a teenager to eat healthy and do yoga is not easy, but if she wants her life to be "normal," it sure is an incredible way to start. How are you? Are you taking care of yourself? I hope you check out my blog and reply. Taylor may be able to help your daughter feel like she is not alone. 

Blessings, 
Regina 

Capple House Blog


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## DustyKat

How is Gab doing T? 

Dusty. xxx


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## Crohn's Mom

She's doing pretty well thank you! 
She's not as "high energy" as she was, but that's understandable. She works 40 hours a week right now in the same restaurant as I do, so I know she works hard! LOL 
Still having pain in the usual, LRQ but she's managing very well.  
We're both looking forward to the 31st for her next infusion.


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