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Cimzia/6mp Question?

mugsymagoos

mugsymagoos

Hello!

My daughter has crohn's and a temp illeostomy due to a perforated colon last year. She is now seeing Dr. Cangemi up at the Mayo Clinic in Jacksonville, and we are still waiting for the illeostomy to be reversed. She has not had any type of re-section or anything, just the illeostomy to let the colon heal after it was perforated. (The Mayo clinic did not do this by the way....it was a doctor down over here in Tampa where we live). Anyway, Dr. Cangemi started Kayla on Cimzia and 6mp together a while back. Went for a colonoscopy about 2 months ago to see how everything looked as we are still waiting for the reversal surgery. He said it had looked like there was still some inflammation and thought it could be intermittent colitis which can happen when you have an illeostomy. He wanted her to do these short chain fatty acid enemas two times a day and then see him for another colonoscopy in 8 weeks which will actually be next Tuesday the 26th.

This past week, she has been tired, not eating, low grade fever and vomiting. I thought it was due to starting the 6mp again (she was off it for like 5-6 days due to us waiting for a new script as we were late getting her bloodwork done). They told us to stop the 6mp and get another blood draw which we tried to do yesterday but she was too dehydrated so they could not get any blood.

We were planning on going back today and then last night she said the anal abscess she had is back and her butt was hurting. It is def there and is getting black an blue. Put a call into the on call doc at Mayo who really didn't know anything about Kayla, so I am going to call Dr. Cangemi today.

My question is since she has the temp illeostomy, is it normal to get an abscess (fistula) in the anal area like that? Does that mean that the Cimzia and 6mp are not working??

Thanks for any info!
 
Jmrogers4

Jmrogers4

Sorry I don't know about illeostomy and abscess but it certainly sounds like they are not controlling the disease.

The scopes will certainly tell you if that is the case.

Hope you get answers soon
 
Sascot

Sascot

Not sure about the Cimzia, but our GI is hoping the 6mp will stop my son getting another anal abscess/fistula.
When my son got his abscess it was incredibly painful - he was put onto Flagyl and Cipro which did get the infection under control a bit, but ended up having to have it drained. I would make sure you get some antibiotics asap so it doesn't get to that stage.
Hope you get hold of the doctor soon.
 
mugsymagoos

mugsymagoos

They started her cipro and flagyl but the problem is they both make her feel so sick! She has not wanted to eat since Monday as it is!! She just throws up and is gonna get dehydrated!
 
Crohn's Mom

Crohn's Mom

Moderator
Hi Mugsy :)

Do you have Donna's email address ? If not I can send it to you PM if you like.
She is so much quicker to respond, and much easier access sometimes (even tho she's super busy herself!) Or you could try calling and talking to Jackie, she relays the messages very quickly to Donna or Dr. C.

I don't have any advice re the abscess unfortunately.
Gab, my daughter, is also on Cimzia and 6mp as well; although she has just re-started the6mp last week, so it's too soon to know if it's going to help.

Gab also had the diversion colitis when she had her ileostomy and Dr. C was considering starting her on the meds to treat it before she could have her reversal. However, Dr. Landmann, her surgeon, wasn't concerned about it and did her reversal anyhow and the disuse colitis went away.

If I can help you with anything besides email addys, (lol I feel useless !) please let me know :hug:

I hope Kayla feels better quickly !
Oh, and Gab is feeling pretty nauseous the last few days since starting the 6mp ~ I do wonder if it's connected.
 
mugsymagoos

mugsymagoos

Hey Tracy!

Yes! I would love Donna's Email addy! I did speak with her yesterday and then called Jackie when Kayla was so sick from the antibiotics, and she said Donna said to try and cut the pills in half to give a little at a time throughout the day! Does Donna check email on weekends also? We stopped the 6mp for now until we can get more bloodwork, but they will prob do a draw Tues when she is at Mayo because she was too dehydrated the other day. It's like just when things start looking up, something else happens like this fistula! We are doing the sitz baths, but it is totally open now...ugh....Donna was gonna try and get Dr. Landmann to see her also when she is there next week. Will she ever get this reversal done?? It is almost a year now! Thank you sooo much for your response...I love that our girls see the same doctor! Where did you say Gab is going to college? Kayla is supposed to go away to school in August also...talk about nerve wracking!!!!
 
mugsymagoos

mugsymagoos

Oh and I found Zofran in our cabinet full of her meds...She had to take it last summer also. So I gave her that and then a half pill of Cipro and half of the Flagyl and see how she does!
 
DustyKat

DustyKat

Super Moderator
I am so sorry to hear about your girl mugsymagoos, bless her and you too! :ghug:

I can't add to what has been said but would like to welcome you to forum. :) It is so fab that T has touched base with you!

Good luck and I hope your daughter soon finds lasting relief. :heart:

Dusty. xxx
 
Crohn's Mom

Crohn's Mom

Moderator
Hi Mugsy, sorry, I am on vacation, so I am slow to respond :)

Gab is at USF in Tampa.
I am going to pm you the email address now !

And yes, she will get it ! :)
 
Brian'sMom

Brian'sMom

Location
Midwest
Tracy, When Brian was on azathioprine they said it could cause nausea and for us to give it at night. Just thought I'd mention that...when does your daughter take her 6mp?

Mugsy, Welcome to the forum :) Lots of info here! My son had an abscess. He went on flagyl and cipro. He had tendon pain so they stopped the cipro after a day or so. Continued on the flagyl and it really helped with his pain fast. Abscess went away quickly. We also did lots of bath soaking.
 
mugsymagoos

mugsymagoos

Well Kayla saw Dr. Cangemi today at the Mayo clinic for a follow up colonoscopy after being on the Cimzia/6mp combo. He said her colon looks a little bit worse than it did the last time. This is obviously bad news as it means the drug combo is not working. He is now petitioning our insurance for them to cover another drug called Stelara. If anyone has experience or news with this, please share! I am researching all other alternatives too, including stem stell, immune system replacement and Dr. Cangemi is open to everything if we can save her colon. Dr. Landmann looked at the fistula and they are not too concerned with it at this point, as it is draining. I am so upset, but Dr. Cangemi said he will try everything and anything he can which gives me some hope still. We cant reverse the temp illeostomy obviously until we can get her colon better. Here is that article on the immune system replacement if anyone is interested....

http://news.yahoo.com/researchers-plan-cure-crohns-disease-immune-system-204400398.html

Thanks for listening....

Therese
 
Sascot

Sascot

Sorry to hear her colon is worse. I hope the insurance will let you try the Stelara. Hope it works well if it goes ahead!
 
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