Cimzia Newbie !

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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 !
 
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
 
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!
 
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.
 
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!
 
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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!!
 
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
 
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.
 
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.
 
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?
 
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 :)
 
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 :)
 
Sending the very best wishes to Gab that all goes well and smoothly!!!:rosette2: :heart: :rosette2:
 
Good luck T and Gabs!! Please God keep that girl going strong!! She's gonna be somebody:)!!
 
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:
 
Oh T! Wishing Gabs all the love, luck and well wishes in the world!...:goodluck:

Love always mate, :heart:
Dusty. xxxxxxxx
 
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:
 
Oh boy, ooo boy ~ It's Cimzia re-start day !
Have I mentioned I'm nervous ?? :eek:
Oh Yes ! I am nervous ! :ylol:

I will let everyone know how it goes when she tells me ...:ybatty:
 
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
 
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:
 
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:
 
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!
 
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!...
happy-birthday-smiley.gif


Much love, :heart:
Dusty. xxxxxxxx​
 
So awesome and thanks for sharing. :eek:
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).
 
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:
 
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?
 
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 :)
 
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!
 
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.
 
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
 
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 :(
 
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
 
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.
Click to expand...

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

:ghug: hope things workout soon for her
 
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'!!
 
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:
 
You go get those answers!!!!!!!!!!!!!!!!:)
Sorry she's not better.:(
I'll be thinking of you guys!:hug:

Farmwife
 
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 !!!!
 
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 :)
 
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 !
 
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:
 
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
 
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:
 
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!
 
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
 
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:
 
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.
 
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...
 
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:
 
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
 
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.
 
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!
:)
 
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:
 
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...
 
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:
 
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.
 
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:
 
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 :D )

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

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

Love u -

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

Thank you ! :ghug::ghug: I know you know :)
 
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.
 
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.
 
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
 
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 :eek: )

We will get through this.....right ??
 
Oh T, I am dead set howling! :cry:

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
 

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