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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:
 
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.
 
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.
 
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 ! :)
 
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.
 
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:
 
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...
 
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
 
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
 
@ 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~
 
Sending lots and lots of good wishes for today's apptmt! I really, really hope they have a great plan waiting for you! :ghug:
 
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.
 
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 !
 
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 ?!?!
 
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:
 
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.
 
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
 
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:
 
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.
 
Have I mentioned lately that I HATE Crohn's Disease ?!?!
Click to expand...

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
 
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 😩😩
 
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
 
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?
 
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
 
Hope she gets rid of the respiratory infection soon! Our poor kids have enough to deal with without "normal bugs"!
 
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.
 
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:)
 
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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.
 
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
 
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:
 
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 !
 
Woohoo T! :banana::banana::banana:

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

Dusty. xxx
 
Glad she is coming home.
Go spoil her and "beef " her up .
I can only imagine having them away when they are sick.
 
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
 
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:
 
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:
 
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.
 
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
 
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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!!
 
: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:
 
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:
 
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:
 
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. :)
 
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.
 
Esr/crp our gi doesnot order them often either. They were done last time last time as second opinion,wanted them.
 
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. :)
 
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!
 
Waiting ... Waiting ... Waiting ...
It's gonna be a long day I think :p

A little good news tho - Her chest X-ray was clear :)
 
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
 
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 .... :p
 
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 ?? :p
 
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
 
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.
 
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 ?
 
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
 
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
 
Stephen did not have an abscess but he did have night sweats prediagnosis. :ghug:
 
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.
 
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!
 
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.
Click to expand...

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
Click to expand...
.

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:
 
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:
 
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 ! 😖
 
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:
 
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.
 
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!)
Click to expand...

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.
 
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.
 
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
Click to expand...

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
 
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
Click to expand...

(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.
 
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 :(
 
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.
Click to expand...




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:
 
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:
 
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
 

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