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06-04-2011, 09:31 PM   #61
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T. remember that Mayo is open 24/7!!!!
Hugs to You & Gab! Your whole family!
I hope the night goes by uneventful & Gab is able to get some rest with less pain!

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Julz...Mom of 4 boys
*John (24) CD dx 12/2006 emergency bowel resec
* Wife of John dx UC 8/2008 Remicade D/C waiting for Colectomy
*Mike (22) 5/2009 emergency surgery IBS dx
*Daniel (13) CD dx 9/2010
Meds taken...Prednisone 60 mg start, ended 12/25
Flagyl (hand Neuropathy) Vancocin for C-Diff, Prilosec.
Current meds, Zantac, Probiotic
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06-05-2011, 06:27 AM   #62
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T, how you guys doing this morning? I hope things settled and you got some sleep! Were you able to speak to anyone about the meds?
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06-05-2011, 09:35 AM   #63
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Tracy,

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

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

-Karissa
06-05-2011, 11:41 PM   #64
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@Karissa....thank you so much for your kind words
And, I can't believe you were injected in your arm! OH MY !
I totally understood when the triage nurse, and then the ER nurse did not know of Cimzia, but when the doctor came in and he didn't have a clue, and I mean NO CLUE, I was a bit put off to say the least...seriously, he could have just Googled real quick or SOMETHING!

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

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

Thanks so much !
~T~
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06-06-2011, 03:12 AM   #65
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Awwww T, that is so fab that you have had a great time with your sister and her kids. And that Gabs got some time to relax and enjoy herself! YAY! She is just so deserving of every piece of normality she can get her hands on!

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

Thinking of you and much love,
Dusty. xxxxxxxx
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06-06-2011, 06:53 PM   #66
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Just a short update:
Talked to the GI nurse today and we have a 60 min appointment slot scheduled for tomorrow. Hopefully we can figure this out! She did say that it does not sound like Shingles to her because the rash is so scattered all over Gab's body; and she couldn't believe the ER doc didn't order any cultures on the blisters!
So hopefully tomorrow we will have some answers as to why Gab is feeling so yucky, AGAIN
06-06-2011, 08:24 PM   #67
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Keep us posted Tracy!
06-07-2011, 06:23 PM   #68
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What a long, long day at the Mayo today... At least we have some answers.

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

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

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

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

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

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

Last edited by Crohn's Mom; 06-07-2011 at 08:32 PM.
06-07-2011, 10:44 PM   #69
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Bloody MRSA!!! Oh poor Gabs.... It could have been their all along T, but either way, lets knock this bugger on the head!

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

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

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

Much love,
Dusty. xxxxxxxx
06-08-2011, 05:53 AM   #70
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Well at least you know now! I don't know what MRSA is but it sounds "treatable" so I'll take it! I hope it doesn't interfere with the long term prospects of Cimzia! Thinking about you guys T!!
06-08-2011, 03:35 PM   #71
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MRSA is a strain of Staphylococcus aureus (S. aureus) bacteria. S. aureus is a common type of bacteria that normally live on the skin and sometimes in the nasal passages of healthy people. MRSA refers to S. aureus strains that do not respond to some of the antibiotics used to treat staph infections.

The bacteria can cause infection when they enter the body through a cut, sore, catheter, or breathing tube. The infection can be minor and local (for example, a pimple), or more serious (involving the heart, lung, blood, or bone).

Serious staph infections are more common in people with weak immune systems. This includes patients in hospitals and long-term care facilities and those receiving kidney dialysis.
Here's a short, technical, run down of what MRSA is Dex....
basically, in people terms, it's a nasty staph infection that thinks it can out run antibiotics!
06-08-2011, 08:43 PM   #72
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I'm glad you added the disclaimer at the end T!! I'm definitely just basic people!! Whatever it is, I hope it is soon under control!!
06-08-2011, 10:04 PM   #73
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MRSA!!!! oh t - I know she'll be fine but enough is enough already!

Love u -

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06-09-2011, 11:49 AM   #74
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The lovely new dermatologist just called and confirmed that it is definitely a penicillin resistant staph infection. It was the same infection in all cultures, which is actually a good thing. So the meds she is on now will take care of it, hopefully, and then we can go from there.
Her face is actually already looking so much better after just a day on the meds, so we're just trucking along.

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


I almost forgot again...When we met him the other day, I was explaining to him that she has had this intense body itch since she came off of the steroids because I didn't want "all" of the itching to be blamed on just the rash. I'm glad he understood and listened, because he is going to continue seeing her after the infection is gone and see if he can figure it out. And hey Dex...guess what he's checking first because he asked if she has had any previous problems with her liver ??...interesting huh....
He seems like yet another great doctor at the Mayo Clinic
06-09-2011, 06:22 PM   #75
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Thanks for the update T!

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

Much love hun,
Dusty. xxxxxxxx
06-09-2011, 06:32 PM   #76
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Interesting yes T!! But I hope there's nothing wrong with Gab's liver! It is time for her to get some good news for a change!!
06-09-2011, 06:37 PM   #77
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That's where I am leaving it ...at Interesting ! LOL...she does NOT need any other issues for sure! I'm just going to assume it's a food allergy of some sort until they prove to me otherwise
06-22-2011, 02:50 PM   #78
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Bring on Friday ! Gab gets to start her Cimzia again...yeah !!
And, she doesn't have to 'start over' she goes straight into once monthly !

She finished her anti-biotics for the MRSA infection today and her skin looks amazing !
I think she's finally on the right road to health and remission !
06-23-2011, 05:32 AM   #79
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Excellent news T!

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



Much love,
Dusty. xxxxxxxx
06-23-2011, 09:26 AM   #80
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That's great news! Good luck!
06-30-2011, 02:06 PM   #81
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Could someone please push the STOP button for the roller coaster ride we live on here ! arrgghhh!

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

How in the world am I going to get this girl off to college in 6 weeks ?!?!
06-30-2011, 02:50 PM   #82
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Oh no, I'm so sorry to hear that! Keep us posted.

-Karissa
06-30-2011, 08:53 PM   #83
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Oh man T, I am so sorry to read this...

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

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

Loads of love,
Dusty. xxxxxxxx
06-30-2011, 09:17 PM   #84
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Thanks ladies...it's just so damn discouraging
06-30-2011, 09:53 PM   #85
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Oh no, sorry T!!! Just one more trough on the roller coaster! She's bound to level out soon!!!
07-02-2011, 11:52 AM   #86
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I feel so blessed to have the help of the Mayo clinic..I can't even tell you!

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

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

He said he will never forget her and after meeting her the first time he went home and told his wife and daughter all about her.
Love, love, love his attitude !!
We are blessed

edit: I almost forgot...As far as the chronic hives are concerned. He doesn't want to put her through any allergy testing (she's had it done twice previously), or any crazy elimination diets to try and figure it out (we've done this as well...what a pain!) so he prescribed Allegra Allergy 2x's per day, instead of once per day as most people would take, and said this will most likely keep them under control. If not, then he will reconsider his plan of action. Works for us! She's been through enough already...
07-02-2011, 12:33 PM   #87
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That's great news Tracy I read this thread back when Gab started Cimzia and came back to see how things were going - I was dissappointed to find out about these setbacks but I'm really glad she can keep taking it. I like the sound of this doctor to!

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

So apart from the MRSA is she still feeling well? Hope you can get it all sorted before she starts college, is she excited?
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Dx Ulcerative Colitis Oct 2005 (age 19)
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Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

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Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
07-02-2011, 01:52 PM   #88
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Thanks so much Ian

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

Aside from the MRSA she is thriving! She tends to wear herself down and ends up sleeping around 12-15 hours straight at least once a week; but that is because she is like the energizer bunny now and will not stop!
She is so excited to be going off to college I'm almost taking it personal LOL. I keep telling her I think she's just a bit too excited to leave me...
Seriously tho, I couldn't be happier with her progress.
Is she 100% ?? NO. But I always tell people that she is at our perception of "her healthy" now and getting better every day; whereas a normal healthy person with her symptoms would most likely be whining and complaining that they "just don't feel good", or "their bones hurt", etc..daily.
She is quite impressive and between her and I...I am the only one who worries about her health. She lives her life as if CD does not exist, and if it happens to stop her for a day, a week, or a month, she continues after as if it never happened.
07-02-2011, 02:00 PM   #89
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Sounds great T!! Hope the Dermo and the Allegra do the trick
07-02-2011, 08:11 PM   #90
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Hey T,

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

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

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

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

Much love,
Dusty. xxxxxxxx
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