Cimzia Newbie !

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

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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?

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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.

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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???

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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:

How'd it go today T??

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:

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.

Thinking of you both T...:ghug:

Dusty. :heart:

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

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

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:

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.

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

: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:

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:

my little penguin said:

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

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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!

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

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!

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

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

^^^Funny, me too!

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:

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))

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.

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

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

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:

hope 6-mp does the trick for her.

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

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.

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

Awwwwwww, like father like son. :lol2:

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

J.

Maybe she could call Acra too!!

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

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)

Home sweet home!

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

Dusty. :heart:

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 !

Why are they injecting in her toosh? I was told thighs and stomach only.

NG the "tooshie" shots were antibiotics a little over a week ago for her strep infection

Hope the docs can figure something out for her-maybe MTX this time???


Sorry the strep came back

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:

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!

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:

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

Hope remicade is your dream drug for a very long time

I hope remicade is the answer and puts her into a nice long remission!

Please Remi!!! Be the one!!!

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

Remicade has done it for O! Hoping it does it for Gabs!

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!

:dusty::wine::dance::wine::dusty: Amazing news!!!!!

Woo Hoo
So glad the miracle drug is working!!
WE loved Remi...

WOWSA! That is amazing. I have heard it is great for peri anal issues! Fingers crossed things get better and better!

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!

AWESOME NEWS!!! So glad to hear she had such improvement today!!

That is amazing!!! I am doing a happy dance for you guys! :dance: :dance: :dance:

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

That's great news T!! Maybe they could let Austin and Gabs be Remi mates!

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:

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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

How is Gab doing T?

Dusty. xxx

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.