Worried about Gab's surgery !

[Crohn's Mom]

worried about Gab's surgery !

I received a call from the nurse at Gab's surgeons office this evening.
First, she called last week to tell me that all surgeries have been set back one day due to some insurance thing...who knows. Her surgery is now scheduled for December 13th (Tuesday.) I asked her when she called what pre-op we would need to do,and when; and also I asked about Gab being on Cimzia and how would this affect the surgery, if at all? She said she will ask and call me back.
Then today when she called back, she proceeds to tell me that the surgeon was not aware that Gab is currently being treated with Cimzia and that changes things a bit (not the date tho). He wants her to stop the treatment 2 months before the surgery! 2 months ?? really ?? She also said that pre-op will need to be started a few days sooner than planned because of it, and she needs a colonoscopy as well. He also wants her to make an appt. with her GI for a check-up for clearance before then.
I am really concerned about stopping the Cimzia. When I asked the nurse if this was safe, because as far as I know she will start to build up antibodies to it and this may ruin her chances of starting again post-op, she just said she doesn't know and to call her GI tomorrow to discuss it.
I feel like we're about to run into a brick wall here...ugghh.

Is 2 months long enough to start to build antibodies against the treatment? Or does it take longer? I am assuming that she probably won't be able to restart it for at least 4 weeks post op, so that is really 3 months without it.

I'm also really concerned that 2 months is too long for her to go with no treatment for her Crohn's and she is at a great risk for it returning, and ruining her chances for the reversal surgery...or worse, her chances of getting back to college in time to start her second semester.
Yikes...I have had a massive migraine for 10 days now and this stress is not helping it one little bit !

I posted this in the surgery forum, but I decided to post here too because I miss my fellow parents ! :hug: I hope you're all doing well !
Sorry I haven't been around the forum much lately to support others...my life has just decided to jump on a roller coaster and I can't seem to find the exit!

 

[Dexky]

Sorry T!! I don't know anything about Cimzia but I hope it all works out for Gab's best!

All this stress and a migraine...how is your quest going??

 

[Crohn's Mom]

Day 5 Dex !!
It's hard...but, I'm not giving up !!

 

[DustyKat]

Whoa T...that's a lot to take on board...:hug:...and I hear you loud and clear about your concerns at ceasing treatment.

I don't really know anything Cimzia mate but I have read that it can take up to ?6 months to clear your system. If that is the case I don't see why you need to discontinue 2 months out, I mean I can in the sense of perhaps having less residual effect in your body but I still think it is an excessive period of time. On the other hand it may mean the residual effect in your system is a good thing, does it prevent the build up of antibodies? I don't know.

To be honest I would have thought informing the surgeon mean't either just that or maybe ceasing a week before and that's about it.

I agree with contacting the GI, no offence to the surgeon but I would think the GI would have a better understanding of the possible consequences of Cimzia and surgery than the surgeon would.

Ah mate, I'm thinking of you and Gabs and wishing you nothing but the very, very best. :heart:

Loads of love, :kiss:
Dusty. xxxxxxxx

P.S. Continued love and luck in your own quest for the holy grail...:wink:

 

[tiloah]

They wanted me to stop Humira as soon as we decided to do surgery... and this was right after they were trying to get approval to double the dose. Talk about mixed messages. I had a nasty abscess and they wanted my immune system to be as strong as possible I think. It was the same with the Prednisone, but that was a little tougher to stop taking.

I'm afraid I can't answer to the antibodies. The surgeon probably wouldn't know the answer to that as well as a GI would.

I'm sorry to hear about your migraine. It must be so awful to be going through this. I hope you feel better and are able to de-stress a bit. Take some time for yourself and do something soothing. Your daughter seems like a really strong person and I am sure she is going to do great.

 

[AZMOM]

T - talk to GI for sure. This isn't at all the same but years ago Claire was on Enbrel (TNF blocker) and needed a hernia repair. We never stopped it. Again I know it isn't the same but at the time, the surgeon left it up to her Rheumatologist.

Keep us posted!!!!! Big hug!

J.

 

[Tesscorm]

Wow, seems it can't ever just drizzle! Always has to be a downpour!! :ymad:

I can't believe the GI wouldn't have anticipated this situation??? :ywow: Maybe I've missed something but wasn't it her GI who put her on the Cimzia and was involved or recommended the initial surgery? I can't believe she is the only person who has ever been in this situation, the GI must have known this would be an issue come the second surgery??? She/he have some sort of protocol/contingency plan as to how to proceed under these circumstances??? :confused2:

I really hope that once you speak with the GI, you'll be reassured that there is some sort of 'plan' in place (even if its just that two-three months isn't enough time for antibodies to build) and that its just the surgeon's nurse who wasn't aware of it!!!

Wishing for the best (and that you feel better too!) :ghug:

 

[Crohn's Mom]

Thanks everyone!
I put a call in to the Dr. this morning but he won't be back in the office until Monday, so I left it for the nurse as well.
Funny, even the lady I spoke to leaving the message was surprised that they want Gab to go 2 months with no treatment !
So, I wait.
I will update as soon as I find out what is going on.
I am used to the surgeon and the GI disagreeing on how to treat Gabs' CD tho because after her first surgery in March the surgeon said she only needs to be treated with 6mp, however the GI doc disagreed and that is why she is on Cimzia. I don't think the surgeon realizes how aggressive gab's CD is. I guess this is why they have a "team" of doctors there so it's not all one person's/doctors decision.
I'm sure it will all work out, they have done an amazing job so far

 

[ThanksP]

It takes 70 days for Cimzia to leave the system according to the manufacturer. So maybe at 60 days she'd still be ok. I also wonder if she'd have to do the loading doses again as well. Good luck to you, I hope you get all the questions answered.

 

[tiloah]

Is her surgeon a general surgeon or someone who works specifically on the GI tract? I think surgeons kind of have this perception that they cut the problem out and it's fixed (think gallbladder, appendix, etc.) and also they don't really see the patient in follow-up until it's time for another operation, so they probably have the impression until the patient shows up again that the problem is fixed. Am I making any sense?

I think a GI would be more familiar with the medications and the situation. My surgeon told me she thought I might be one of the lucky ones who never needs treatment again after my surgery, but I think that's an overly optimistic (and possibly unrealistic) way of looking at it.

This is my long winded way of saying I would definitely trust the GI's advice over the surgeon's. Though it may be different if the surgeon works specifically with GI diseases.

 

[Crohn's Mom]

Is her surgeon a general surgeon or someone who works specifically on the GI tract?

He is both actually (Colorectal and General); but yes..he is the type that basically thought that he cut out her disease and presto she's healed ! LOL. He's a great surgeon, but from the second he said all she needs is 6mp now, I knew I better run towards the GI

 

[tiloah]

He is both actually (Colorectal and General); but yes..he is the type that basically thought that he cut out her disease and presto she's healed ! LOL. He's a great surgeon, but from the second he said all she needs is 6mp now, I knew I better run towards the GI

Haha! Yes, I felt the same way with what my surgeon said.

 

[Crohn's Mom]

Ok well that was a quick response ! Gab's GI nurse just called me back
As far as my concern with building up antibodies to the Cimizia she said it's not an issue or problem. The way she explained it is that Remicade is the big one that you have to worry about with going off and on and becoming resistant. Humira is next in line, and then Cimzia really isn't a problem. (or something to that effect...sorry my lovely migraine is interfering with my brain function lol)

Her biggest concern, and mine as well, is Gab going without any treatment for 2 months. She said that this particular surgeon is adamant about the 2 month time frame when it comes to Cimiza and surgery, but hopefully between her and the GI doctor they can talk to him and come to some kind of an agreement...maybe just 6 weeks, or even 4..we're not sure. If he won't agree to that then the next plan is to try and get 2 more treatments in @ 21/2 - 3 week intervals before December 13th. Gab just took her injections last night, so the nurse is going to map it out a little better and see if we can manage to do that. It will still leave her @ 8 weeks no treatment, but she will have an extra dose in her system. I also asked about the possibility of using 6mp for 4-6 weeks in place of the Cimzia, then only having to possibly stop all treatment at 4 weeks instead of 8. She said she will also consider that when talking with the GI.

Holy Cow I hope that made sense...it does in my scrambled head anyhow! :ywow: I think I'm going to finally cave and hit the narcotics for my migraine...I deserve it after 11 flipping days !! :ylol2:

 

[DustyKat]

Just my two cents worth...

The surgeon should always defer to the GI regarding the actual treatment for the CD. To me it doesn't matter how often a surgeon deals with IBD they are not the primary caregiver when it comes to ongoing treatment and although they are good at cutting they do not deal with IBD and it's daily consequences as a matter of course.

In many ways we were fortunate when Matt was in hospital because the colorectal surgeon always consulted with the Crohns specialist when it came to his actual CD related medication requirements.

I understand that the surgeon is very competent but he needs to get down off his high horse, put his pride in his pocket and listen to people that deal with CD every...single... day...of their lives, that being you and the GI.

Dusty. xxx

 

[Dexky]

T, I don't think 4-6 weeks of 6mp will help. It's supposed to take 3-6 months to reach effective levels.

Narcotics on the other hand...feel better T

 

[Crohn's Mom]

You're absolutely right Dex ! I didn't even think of that and Gab was on 6mp for over a year...duh!

 

[DustyKat]

Haha, I figured you had done the calculations and worked out if you started her next week she would just about snig in 3 months before her op! :yfaint:

Dusty. xxx

 

[Crohn's Mom]

Ok, we finally came to an agreement and we have an answer for pre-surgery.
Gab will essentially take the doses that she would be missing, sooner.
So..she took her last injections on the 16th of September, now she will take the next set early on the 7th of October, and then early again on the 28th of October, and then nothing until the surgery on the 13 of December.
The theory is that she will have enough Cimzia built up in her system to "hold her over" until the surgery is done.
Yes, I am scared, nervous, and freaking out ! However, I am ok with this plan because we really don't have a choice and this plan seemed most appropriate.

It will be interesting to me because Gab is not feeling well lately and has stated that she doesn't think the Cimzia is working for her anymore, so I am wondering if taking the injections early will boost her a bit. If not, and she truly doesn't think Cimzia is working, then she will probably request to switch to Humira after the surgery.

I feel like I live on a never ending roller coaster ! :lol: I'm quite sure you all can relate !

 

[Tesscorm]

Good luck! Maybe it will all work for the best in that the extra boost of Cimzia will get all under control (before and after surgery)! :rosette2:

 

[Ashley1]

Ashley

 

[Dexky]

I hope it works out for her T! I know you are bound to be having serious doubts if she says she isn't feeling well! Hang in there mom

 

[AZMOM]

T I'm thinking of you both. I think this damn rollercoaster is making both of us nauseous. .

It just has to work for Gab - it has to.

Love, J

 

[DustyKat]

Oh man T, I so hope that all goes well for Gabs in the lead up to her op and the meds plan is successful...:hug:

I can well imagine what you are feeling and thinking mate. Godammit, Gabs deserves a break and now!

Much love, :heart:
Dusty. xxxxxxxx

 

[DustyKat]

Hey T,

How is Gabs going mate?

I have been thinking about you guys a lot lately because I know full well that we could easily have been facing reversal surgery ourselves come December. :hug:

Much love, :heart:
Dusty. xxxxxxxx

 

[Crohn's Mom]

Thanks for asking Dusty

I spoke to her the other day and she said that taking the Cimzia one week early seems to have done wonders for her !
Then when I spoke to her yesterday she thinks she has picked up a bug that's going around with the kids at school, but she said it's not too bad for her. By the evening she felt better. So I think she has a lot of ups n downs with how she feels from day to day.

I get to lay my own eyes on her today because she's coming home to see me ! Yes, me! hehee I even asked if she has other plans with friends when she comes and she said nope...just to see you mom! She has requested lasagna for dinner LOL. And I have to make an extra pan of it so she can take it back to school and have it with the roomies ahha. I'm happy to do it!

She says she's going to insist that after surgery she does the Cimzia on a similar schedule of "early" because that is what seems to work for her. So we shall see what the doctor has to say about that I guess...LOL. She's stepping up tho! Gotta love her

 

[DustyKat]

Woohoo! So fab to hear that Gabs is feeling on top of things again! Long may it last! :thumleft:

A visit!!!!!!!!!!!!!!!!!!!!!! anda:anda:anda:
Let the spoiling commence! So happy, happy, happy for you!!!!!!!!!!!!!!!!!!

Dusty. :heart:

 

[izzi'smom]

So excited for you that she is coming home...and love that she is taking charge...go girl! Enjoy your visit!

 

[Dexky]

I get to lay my own eyes on her today because she's coming home to see me ! Yes, me! hehee I even asked if she has other plans with friends when she comes and she said nope...just to see you mom!

Better get out your checkbook T!!! Happy visiting Mom!!!