13 weeks between remicade treatments...worried

[awmom]

As a quick update, 4 weeks after Nico had his resection, he came back positive for c-diff. He was given two weeks of flagyl and told not to take his remicade infusion until after he tested again. I moved his remi infusion two weeks up and was scheduled to take it today if he came back free of c-diff. I have been calling the nurse since yesterday to find out the results and they have not called back...so I had to cancel his remi appointment!!! Now he will have to take it next week which will be tough because he has a bunch of AP exams and he usually feels poorly several days after the infusion. I feel like I should have let him take the infusion since he is feeling well and I assume that if the test had come back positive that they would have called me. So basically I am mad at myself!!!!!

It will be 13 weeks since his last treatment and I am so worried that he will have built antibodies to it since he cannot take 6-mp, or that he will have some sort of reaction so close to his exams. I just needed to vent a bit sigh...worry, worry, worry.

 

[Clash]

((hugs))

 

[Tesscorm]

:ghug: Hope the c-diff comes back negative and he has no problems next week!!!

 

[Johnnysmom]

Don't be mad at yourself. You had no choice but to cancel.

I would call his GI and tell them your concerns about him missing this treatment and the risk of developing antibodies. I know we all assume they are on top of things but sometimes things get missed. And you will feel better once you have talked to them.

I hope everything still works out okay. (((((hugs))))))

 

[awmom]

Thanks for the hugs and words.....this has occupied my mind the entire day, and I know it doesn't help to stew in worry. I called the GI office again and they did not return the call...again. So I will keep his remi appointment next week even if they don't call back....and then we will hope for the best, maybe consider adding methotrexate to the mix (this was recommended by our second opinion doc in Boston a while back). Thanks again.

 

[Mehita]

If he's not feeling well can he get his exams moved? That might take a little stress and pressure off.

 

[ChampsMom]

^ That's a great idea Mehita!

 

[awmom]

Thanks Mehita and ChampsMom, the thing is he feels quite well. We just need to get him back on the remi as a maintenance before he starts building antibodies. I was just supposed to wait on his remi until i got his results to see if he was done with the c-diff (samples were sent Monday, so I know they must have the results back), but they never called me back. I am assuming all came back normal since they did not call. The methotrexate is to increase the probability of the remi working for a longer time. Thanks again.

 

[crohnsinct]

awmom: I seem to remember poking around the Remi area on the forum and seeing this exact concern discussed. There were many people who had to postpone their infusions due to surgeries, illnesses etc and they went a lot longer with no problems. I hope that is encouraging news and that all goes well for your son.

So frustrating when docs offices don't call. They should rush you in for Remi at their first chance since it was their fault you had to cancel anyway.

Also hoping tests all come back negative!

 

[awmom]

Gosh crohnsinct, you HAVE just made me feel a lot better! I made his remi appointment for Tuesday and am planning on taking him even if they don't call with the results since he gets his infusions in a different clinic. I think that he is done with the c-diff because he is feeling fairly well in the tummy department and it has been ten days since he stopped the Flagyl. I will call the GI office and let them know that this is what I am planning unless I hear from them to do otherwise. Tanks so much again!

 

[Brian'sMom]

I don't mean to hijack your thread...but since you're waiting for negative c diff results I've had a question for some time on this issue. My son had positive c diff test Dec 2012. They never tested him again. He no longer had Diarrhea and was feeling fine so they said lab won't test normal looking stool. It has to be Diarrhea. Is that true? I've been questioning our GI lately. A few strange comments from her like this one. I asked several times why we never tested and got a 'negative' result. They were confident he no longer had c diff without the test.

 

[Mehita]

We just did a c diff test on Friday and they told me it had to be runny. No problem with that! Maybe they didn't run a second test because you need runny stools and his weren't anymore??

 

[Brian'sMom]

We just did a c diff test on Friday and they told me it had to be runny. No problem with that! Maybe they didn't run a second test because you need runny stools and his weren't anymore??

Yes, that's what they said. I wanted to make sure that's what everyone is told.

 

[awmom]

N tested positive for c-diff and it was NOT a runny specimen. Quite the contrary! Second one wasn't runny either (no results on that yet), but no one ever mentioned anything to me about consistency. I think I read somewhere that some doctors prefer to go on the basis of symptoms rather than labs and thus minimize antibiotic use if the body is handling the problem itself....I think I read it on a c-diff forum. If Brian is feeling fine I think I would not worry. I'm giving Nico florastore as that is supposed to keep cdiff in check. Mehita, I hope the results come back negative!

 

[my little penguin]

No runny stool here either.
Just blood
His test was negative.

 

[awmom]

Oh boy, now I'm kinda freaking out because they FINALLY called from the GI's office asking "Um yes, i had a message that you are looking for something about a stool sample????" Apparently they never got the results. The PROBLEM is that N has a remicade appointment early tomorrow which I decided to keep thinking that since they hadn't called, it meant that all was well, plus N is feeling well and BMs seem normal. So now I'm worried that when they are able to locate the results, they will be positive. The GI gets upset easily and gives us the cold treatment (we actually have only seen him about 6 times, including 2 colonoscopies and he was sullen at 3 of the visits), and now he will REALLY have a reason to be mad!!!

I can't cancel the remi appointment because it is first thing in the morning and I would have had to have cancelled today. AGGHHHHH!!!! I don't know what to do!!

 

[Brian'sMom]

C diff makes you feel really sick. And lots and lots of trips to the bathroom with gassy/crampy Diarrhea. My son even vomited. I think you'd know if he still had it. Plus your son took the 2 weeks of Flagyl. Is he having formed stools? Do you see your GI/infusion/labs at the same place? The infusion nurses could call the lab where the test was being done. There should be record of it where someone could check. Maybe your lab is like mine...they won't do the c diff test if the stool is formed.

 

[awmom]

I also am thinking that he is over it....the thing is that he never felt really sick. Had the runs only twice with a lot of blood, and other than that, some mucus which he had never had before and I assumed was from the surgery. Now his stools are formed, he does not think he has blood but today said that sometimes his bm is reddish/orange, and sometimes has mucus. But he feels fine and his appetite is really good. His GI is in a different city from the clinic where he has the labs and infusions...two different clinics altogether. But like you said, there must be a record, so I am going to go to the lab early and see if they can tell me the results. If they are negative I can keep his remi appointment. My problem will be what to do if it is positive. I dont want to do something that will pose a danger to him, but on the other hand, putting his remi off for two more weeks really scares me. I wonder how dangerous it is to have remi with c-diff. Thanks Brian's Mom for talking this out with me!

 

[awmom]

Brian's Mom, was Brian taking an immune suppressant when he had c-diff? How was that handled? And what antibiotic?

 

[CarolinAlaska]

AWMOM, I'm sorry your GI staff isn't running this down for you, especially after so many days! Ugh! I don't know if the lab staff are allowed to give you the results, but maybe if you explain how critical it is that you get the result right then they'll allow it...

 

[Brian'sMom]

Brian's Mom, was Brian taking an immune suppressant when he had c-diff? How was that handled? And what antibiotic?

GI changed him to weekly Humira in mid August. By fall He was sick with stomach virus, next month-influenza, next-skin staph infection (on his private area ?!), then c diff. GI then moved his Humira out to every 10 days. He had to move Humira days when he had fever. After flu they had him postpone Humira 4 days. It was just too much for him I guess.

The antibiotic for the c diff we used was Flagyl. Tamiflu for the influenza. And nothing for the stomach virus. An antibiotic ointment for the staph

 

[awmom]

Thanks Carolin, you were right. They would not give me the info so I am waiting for them to call me back! Yikes, and his remi appointment is in an hour!! Wow Brian's mom, it sounds like Brian went through an awful lot at once....it must have been so hard to go,through so much all together! I hope he is doing ok now!

 

[Tesscorm]

Just sending hugs, Awmom!!!

It's so frustrating, annoying and frightening when doctors leave us without information and we have to make these decisions!! I don't know if it's being too busy, not enough staff, or what but I think it's so careless and irresponsible!

i wish I had some advice for you... I hope you heard results were negative and Nico was able to go ahead with the remicade!! :ghug:

 

[awmom]

YAY!!! I finally heard from the nurse.....c-diff test was negative and we proceeded with his remicade treatment (they had to work us in later and nurses were a little out of sorts with us since it was no fault of theirs) and we can relax for a couple of months (I hope!)!!! The doc had not seen the results but I decided to go ahead and do it. It appears that the reason the nurse didn't call me back last week is that she did not know how to access the information (which was there since last Wednesday)and assumed it wasn't there, but never bothered to return my calls to even say THAT. Having said that, I do understand that sometimes they must be overwhelmed and busy, but it is anxiety producing nevertheless!! Thanks Tesscorm and fellow moms/dads for helping me navigate this little episode. I really don't know what I would do without you!!!