Relapser, testing again, beside myself

[notheidi]

Hi all, I have been doing well for the past 2 years and haven't been on the board very frequently. In a nutshell, I got c diff from sinus infection ER visit in 2011, I was very sick almost septic, then got it again in 2015 from work in nursing home as a social worker.

And here I am again. Doctor says either small bowel diverticulitis or c diff. Smells like c diff, though not having copius D--which is actually how my 2nd case presented--atypical. I've been sick since Friday. Chills, severe fatigue, listlessness, brain fog, no chutzpah, vomited a few times, awful nausea, and painful stomach cramps. And so depressed. I just kind of feel like giving up, apathetic. Like why try?

I had gotten a bit lax about taking my daily probiotic, honestly because it makes me angry to have to think about this illness every day. I just hate it. It makes me so angry. I feel like I can't face my GI--he's going to yell at me. But I am going to have to.

Once again, today I face the usual c diff misinformation BS: primary care doctor tells me the lab test takes 1 day to come back, I say it usually takes 3, she says we get it in one. I get hopeful. I confirm with the lab and yes, it's 3 days. Doctor wants to put me on metronidazole. I tell her I've been on it before and it didn't work. She said it's the standard for c diff and insurances usually don't cover vanco. At that point, I was just tired of arguing with her.

My ins covered vanco last time and I am NOT taking metro again if this is c diff. This is my PCP; went to her because it takes forever to get into my gastro doc. I'm going to call him and let him know what's going on though, and I am NOT taking metronidazole. I'm also going to call my health insurance and see if I can get the preauth for vanco going, if one is required.

I am trying to make sure I am on whatever meds I need before the weekend because that's two more days I will have to be without meds and even one days is too much. In the past, I have gone to the ER to get the c diff test, but I haven't had a lot of D and so it was questionable to me whether I'd be able to produce for them. I was also trying to save the expense.

I also have a job interview on Monday that I'm not sure I'm going to be able to go to, which is upsetting because it's a job I've waited a year to hear back from! And it's not in the medical field, and I want to get out of the medical setting now.

If I do have cdiff, it's going to cost me at least $1,000 out of pocket because I have a high insurance deductible and I haven't met it yet.

My doctor also said by means of greeting today, "Stomach problems AGAIN, Karen?" It really upset me. It made me feel like a personal failure, like I am abnormal. I used to have another PCP who did that. In general, I really like this doctor but then there is the occasional blip like this that sucks.

You know...when you've had an illness like c diff and you've been traumatized by mistakes from medical personnel, you get kind of PTSD-ish about it. At least I do.

One thing that was really, really wonderful today is I went to Target buying sick supplies and looking ill and the cashier asked me if I was ill and said yeah stomach problems. She asked if I knew what it was and I said it might be c diff. She had also had it!!! She had been in the hospital with it about 5 years ago. She was so sympathetic and I felt so humanized, in contrast to how I felt about my doctor's visit.

If you've made it this far, bless you and thank so much for reading and caring. I hope you are all doing well.

[NanciT]

I am so sorry you are going through this, and to have a MD say that.....unbelievable. Makes me very angry. My Gi told me I may never get better, I will never forget those words. Physicians AND nurses often need training in compassion. It is often the ones who have been ill that seem to have it.

Try not to jump on this, maybe it's not CDIFF. I know the road our minds go down....and it can be so depressing but wait for your results. You sound like you have a good plan of action if it is. Think of ALL you know now....that you did not know before. We are far more educated about all of the once we have fought this battle. I know the fear, depression and everything that goes along with it. A few months ago I was in the ER really sick and I thought 100% it was CDIFF. The test was negative, I had severe gastritis and esophagitis from Iron I had to take. So, maybe it's not back.

Take good care of yourself and hopefully a negative result will come it. If it is positive, you know exactly what worked last time.

Maybe you will feel well enough for the interview on Monday and if not possibly reschedule.

Wishing you the best

NanciT

[Ril]

Karen, I am SO sorry for what you are going through. Whether or not it is c diff it is just a disgrace to be treated as you have been. Only those of us who have had c diff know how it feels. Just let that dr have this kind of illness and see how the attitude changes. I used to call my GI dr's office so frequently, even during recovery, and apologize for being a pain and was so fortunate at how they reassured me and understood.
I do not blame you for insisting upon vanco. You might even ask for Difficid. Flagyl is getting to be just ridiculous. As long as you have to satisfy a deductible Difficid would be best if approved. I would wait to hear back from the GI both about meds and asking for an emergency appointment and to be put on a cancellation list, rather than take the PCP's prescription if she won't budge.

All this is assuming it is c diff. I always went to the out pt lab of the hospital to get the test back the same day. If the lab could test the sample I'm not sure why the hospital lab could not.

Best of luck with all this and still hoping you are negative.
Rita

[georgina]

So sorry for what you are going trough , and for the way your doctor "cares" for you , just another doctor who thinks that Cdiff is just little D , and she actually needs to be reminded that Flagyl is not standard , is not even FDA approved as a treatment for Cdiff .

[beth22]

Maybe it is not c difficile. There is a GI virus going around here. We have had it at the school where I work and today I called a friend who vomited, etc. out of nowhere. She has never had c difficile. Let us know when you find out your test results. I would not take Flagyl either. I have a bottle of Dificid that I got last year and did not need to take, but I would opt for that. My insurance covered it with a $60 co-pay. I was surprised.

[notheidi]

Thank you all for your kind replies. I wanted to try to go to the hospital lab, but I just wasn't up for the fight to figure out how to get it done. Also, I haven't met my deductible yet and would likely have to deal with the awful bureacracy of my insurance company and added expense of using the hospital lab, if even possible. Even after I meet my $1,750 annual deductible, I have to pay 20%. And I have insurance through my job; it's not bought on the exchange. It's just a crappy insurance. :(

I did, however, find out my dr was wrong and vanco IS covered without preauth with my particular insurance. It has to be written for a 30 day supply, and my GI wanted me on a taper if it came back, so it's more than a 30 day supply, but I can always just fill the first 30 days of it and then get the approval going for the rest of it. If I become at risk for missing doses because of bureaucratic issues, I'm going to file another ethics complaint on my insurance company, which got them to pay attention to my appeal before on my sleep apnea machine.

Unfortunately, my pharmacy benefit doesn't cover difficid. Which is baloney. But again, I have to pay the 20% so I may be better off trying a Vanco taper.

All this is to say, as time marches on and I feel worse, I become more convinced it's c diff. My c diff-negative scares in the past lasted 3 days. It's now been 5. The fatigue is becoming more and more oppressive every day. I can barely get out of bed.

My mission is to get my diagnosis (if c diff) and meds before the weekend. Not necessarily an easy feat because my test is due back Friday, who knows what time, and who knows what time my MD leaves for the day. If I have to wait 2 more days for treatment, I am going to be livid. I will also have to fight my MD regarding putting me on vanco. I may have to have my GI call her. I put a message to my GI to please call me but haven't heard back yet. The soonest appt I can get with him is Aug 8.

I am likely also going to have to look for a new job, because if true, this would be the 2nd time I've gotten it at work, and I don't want to be in that environment anymore. Not a happy camper tonight, and not feeling radically accepting right now! Bleh.

The thing with the interview Monday is that I just don't have the mental status to prepare for it. But I haven't cancelled it yet.

[beth22]

When I would have symptoms, my GI told me to take Pepto Bismol. If it is c difficile, it won't help, but if it is IBS, it usually helped me.

[notheidi]

Beth, that is a great suggestion. Thank you.

It is amazing, I got the results today and it turned out NOT to be c diff!!! I am happy that I didn't go straight to the ER like I have done in the past when I'm having a scare.

I'm always surprised when I have symptoms like this and it's not c diff because it feels exactly like my second relapse did.

I still feel really sick though [I will try the peptol!]. PCP asked if I wanted to be on antibiotics. I requested that she consult with my GI first (I haven't been able to get ahold of him yet) so I am awaiting the outcome of that conversation.

I still feel too sick to prepare for that interview Monday but I'm still hanging in there and maybe going to try over the weekend.

[georgina]

Notheidi
So glad that the test for Cdiff was negative but sad to hear that things are not improving . Ask your doctor to do more tests to see what it's causing your symptoms.
Hope that Pepto will get you some relief.

[notheidi]

Georgina, thank you. Doc put me on low residue diet which is slowly helping! Will remember what I've learned next time the drama hits.

[notheidi]

By the way, I went on the interview and found out I got the job! :) It's part time doing academic counseling at a college.

[NanciT]

Great news!! twice !! No CDFIFF and NEW Job!!

Congrats!!

NanciT

[beth22]

Congratulations. That is good news.

[notheidi]

Thanks guys!

[georgina]

Congrats , go out and celebrate!!