New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

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JEJ
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New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Mon Oct 30, 2017 11:11 am

I'm 60 years old and have stayed away from doctors as much as I could all my life. I have had antibiotics here and there throughout my life, but NEVER 7 months of this nonsense. When the surgeon removed the blockage and "thing" hanging off my kidney, he told my husband that the operation was so long because the blockage was so large and so was the amount of infection. I can't say 100% that I have C-Diff, but for the past 6 days I've had diarrhea and stomach cramps going every fifteen minutes 24/7. I'm keeping hydrated, but feel really awful. My temperature is out of control - up and way down, I'm pale, I hurt. I can't go to the lab until they have the "kit" ready which is not for another few hours. How long will it take for them to have results after I return the kit to them?
I have been on Cipro, Cephalexen 500 mg 4 times a day, Keflex 250mg 2 times a day and cycling these for 7 months because of an ecoli infection in my kidney. I have had two stents put in and removed and surgery to remove the kidney blockage with no biopsy done. The kidney continues to be swollen and infected. Ultrasound a few days ago showed the kidney still enlarged. Doctor states that I'm in a bad cycle and just keeps prescribing antibiotics. After the ultrasound, I had an appointment with the surgeon. When he told me he was putting me on yet another 5 week regimen of antibiotics, I told him I thought he had an awful lot of faith in that Cephalexen that didn't seem to be killing the infection. He seemed put out by me saying that and just said that I'm in a bad cycle. I TOLD him about the diarrhea and how I felt and he said it's probably a stomach bug. He asked if I was still having the kidney pain and I told him I wasn't. He asked if I felt better than I did since removal of the blockage and all the infection and yes, I did. With that, he sent me on my way.
I've been keeping things EXTRA clean because I don't want my husband to catch it. I'm afraid of going out in public and infecting anyone even though I'm REALLY clean. I worry about visiting my mother in the nursing home for the same reason. How long before I'm "safe" to be around? How long will the lab results take? I feel SO horrible and my colon is screaming...the sepetic has sure been getting a workout.

amg
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby amg » Mon Oct 30, 2017 11:32 am

Hello and welcome to the forum. I'm so sorry you've had such a rough time over the past months.

Unfortunately, what you are describing sounds very consistent with c diff - and you are at higher risk of c diff disease due to all of the antibiotics for a prolonged time, as well as having had surgery.

This is something that really needs to be addressed, diagnosed and treated asap, so you don't continue to become sicker. Because you are in a complicated situation with your other infection and will need continued treatment for that, this seems like an infectious disease specialist would be a good addition to your care team. There have been patients on here who have had to receive c diff treatment concurrently with treatment for other infections.

If I were in your situation, I'd push for an ID doc ASAP. Try to get that stool sample in as soon as you can today. Maybe your husband can pick up the kit for you and take the sample back? Make sure he gets instructions on how to do it properly and if you need to keep it cold, etc.

I'm not sure which doc is managing the c diff issue for you now, but in my daughter's case, her surgeon (she had had an appendectomy which started the whole c diff thing) called an ID doc directly whom he works closely with, and the initial management was done very quickly.

Also, it is really important that you stay hydrated, given the amount of diarrhea you are having.

Please rest and hydrate and be assertive in getting the treatment you need asap

You must be exhausted with all you have been through. Please hang in there and be strong - you can beat this and hopefully will be feeling much better very soon.

EDITED TO ADD:
I agree with your concerns about going out - you really shouldn't be around others now in public when you're going so frequently and not being treated for the diarrhea yet. If it is c diff, your stool is contagious.

JEJ
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Mon Oct 30, 2017 11:51 am

Thank you so much - yes, I AM exhausted which is now making me depressed, but I think it's kinda my response to being mad. As a female, when I get mad, I cry instead of violence. My abdomen is REALLY aching, but I don't want to go to the ER again. Did that initially with the kidney problem at the beginning of April and was sent home twice as they thought it was kidney stones even though none showed on the scans. When I go to the lab in a couple hours, I'm thinking of stopping at my family doctor (who is off for the week) to see if an NP can refer me to an infectious disease doctor. Other than that, I'm still waiting for the nurse from the gastro office to call me back and IF she calls, I'll ask if THEY can refer me to one. The reason I say, "if" is because it's been so long since I went to the gastro doctor, I have to start as a new patient and THAT appointment isn't until Dec. 12th. I feel like I don't have that much time.
Truly I feel like the more this is put off, the more chance there is of my intestines perforating and it getting into my blood and other organs. I feel like there's a big war going on inside of me and the infiltrators are winning. I'm worried about the kidney infection getting worse because of this garbage. You're right an infectious disease doctor should be able to help. That, and a referral for a second opinion from another kidney doctor who is NOT in my kidney doctor's group. That said, I will then HAVE to find another kidney doctor anyway because when this all first started and one of his associates sent me home, I refused the appointment they gave me because I wanted to see my FAMILY doctor. At that point, the kidney doctor sent me a certified letter stating he would no longer be my doctor. What the heck. JUST because I wanted to see my regular doctor first? I tried to get another, but they said they wouldn't treat another urologist's patient...even when I said I WASN'T a patient of his anymore. Sighhhh. I guess that means I have to go out of the area. Yet another reason this is SO disappointing/depressing.
Thank you again for your help and kind words of support.

amg
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby amg » Mon Oct 30, 2017 12:09 pm

The thing about c diff is that it can continue to worsen, and it can make you extremely ill. Going to the ER is actually something to consider, if things are going too slowly as an outpatient and if you are feeling worsening abdominal pain and getting sicker and sicker. It's better to be safe than sorry, as they say. You can get your stool tested and they can do other tests to check out your intestines as indicated by your presentation. C diff is not something you want to delay in terms of diagnosis and treatment.

Again, I'm so sorry you're going through this.

Also, we've found here on this site that depression and anxiety are extremely common with c diff, and we think a major contributor to this is the fact that our gut produces a large percentage of neurotransmitters, including serotonin. When our intestinal lining is damaged, this production is damaged. There truly is a mind-gut connection!

Please do what you need to do to get diagnosed and treated today. I'm sending good wishes and prayers for you.

Jill79
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby Jill79 » Mon Oct 30, 2017 5:43 pm

I agree that maybe another trip to the ER might be a good idea. They can probably test there, have a gastro on call and/or refer you to someone. I was told in my state (NJ) when I was in the ER that if they refer you to a specialist, they have to see you within 72 hours of your ER visit, even as a new patient. If you're feeling worse, it's worth a shot.

Feel better!

NanciT
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby NanciT » Mon Oct 30, 2017 7:10 pm

Another Welcome to the site. Please read the first thread for all new posters

With your history of surgery, infection and antibiotics, I would head to the ER. With that kind of diarrhea, you need to be checked for CDIFF, it must be ruled out. As the above posters have mentioned, it can be dangerous if it goes untreated.
I understand NOT wanting to go to the ER but your testing will be done quickly and you will have answers. If it were positive, you would also be treated. It is also possible they may get you into a GI sooner.

I know it's a hassle, but they do work and test quickly in the ER.

Let us know how you do

NanciT

JEJ
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Mon Oct 30, 2017 7:21 pm

Thank you, everyone. I DID get the "stool" sample to the lab just before they closed, but it wasn't stool. They gave me another specimen bottle in case the lab says they need something else. I DID have lots of water, a banana, small bowl of dry corn chex and two pieces of toast, but none of that has left yet, I guess. The cramps are tolerable now, so I'm going to wait. If they do get worse, or I feel worse including temperature going higher than it has or dehydration, I'll go to the ER. GI says since I haven't been there in 8 years, I have to work through the kidney doctor and family doctor. So things are happening, just hoping I don't get worse before results are in, etc. Oh yeah, the family doctor's office said that when they get the results, they know about the separate kidney infection issue, so they'll probably get me into an infectious disease doctor to address both.
Thanks again!

roy
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby roy » Tue Oct 31, 2017 7:17 am

I am probably going to regret asking but if it was not "stool" you submitted for testing what was it?!

JEJ
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Tue Oct 31, 2017 8:46 am

Haha - the "stool" was just all mucous and pus and the lab techs didn't think there was enough.

JEJ
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Tue Oct 31, 2017 6:37 pm

Just got the test results tonight - yup, positive for C-Dif. Guess the first sample worked. I thought it would, but the techs there didn't because it was a small amount. My thought was that just looking they should be able to tell because it LOOKED like it was ONLY infection. The doctor wasn't there anymore when they called, so the nurse wasn't sure about me continuing with the Cephalexen for the kidney ecoli infection....sooo, I was told to continue that along with the drug for the C-Dif AND to get back on the probiotics that I put myself on earlier. Sighhhhh...to say I am ticked off is an understatement. I STILL don't know why the "thing" hanging from my kidney AND whatever the large blockage was attached to my kidney wasn't biopsied. I had asked that kidney doctor about probiotics a couple months ago and he acted like he knew nothing about them (maybe he doesn't) and said I didn't need to take any. I told him about the diarrhea, etc. several days ago and he never thought of C-Dif...got a little touchy when I told him I thought he had an awful lot of faith in these antibiotics that are not doing a thing for me and put me on yet ANOTHER 5 week regimen. I'm just glad I was smart enough to have ALREADY been keeping the toilet, etc. clean so no one else caught this AND to have researched enough to find and diagnose myself. It just shouldn't be that way.
Ok, done ranting. Sorry about that.

amg
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby amg » Wed Nov 01, 2017 12:09 am

No need to apologize for ranting! That's one of the reasons for this site. We are here to support you. Rant away. :)

Have you started your c diff medication? I hope you respond quickly and well to it.

JEJ
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Sat Nov 04, 2017 8:38 pm

I have made it. It's now Saturday night and color has returned. I'm not "going" nearly as much - probably only about 15 times in a 24 hour time span for two days now. Whew!! I am actually getting about 2 to 3 hours of sleep at a time. Now that I have my brains back, I'll call the doctor's office Monday to talk to them about a second opinion kidney doctor OUT of the area. I am supposed to have another urine specimen next week to see how that infection is, but the ultrasound DOES show enlarged/swollen kidney and supposedly infection. It will be SO nice to get back to being me someday!

BTW, I thought it was just me, but have been told by a few friends that they agree - it SOUNDS like my kidney doctor has basically dismissed my problem as if he has nothing to do with it and like I'm just being paranoid. The more I told my friends about what has happened with his care for the past 7 months, the more angry THEY were with him. So I guess it's NOT just me. This last time when I had gone for the ultrasound, blood test and specimen, my specimen disappeared so I had to do another when I was at his office for the results of all those tests. THEN it turned out that the new specimen was not cultured, but he put me on Cephalexen for 5 weeks anyway - even though he didn't KNOW whether I still had ecoli or not. This other lab did do a culture this week and says there is no bacteria. The kidney doctor said those labs don't do the tests right. Sigh. Who am I supposed to believe? THIS is just one of the reasons I want a second opinion from another kidney doctor out of the area. If the culture comes back this week showing bacteria, I also want that infectious disease doctor.

Now, I started taking the C-Dif medicine on Tuesday night. How long before the C-Dif is REALLY gone and why won't they be doing another stool sample a week or so AFTER the C-Dif medicine is done?

NanciT
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby NanciT » Sat Nov 04, 2017 8:48 pm

It's difficult to know how long it will take to be rid of CDIFF, everyone is different. What are you taking for it?
I would get an ID doctor and ALSO another Kidney doctor. This issue about the wrong cultures being done? I would need to see those lab results. If you have an active kidney infection that needs to be addressed and treated.
Hopefully you will see your symptoms improve even more the next few days.
Generally they do not retest for CDIFF if symptoms improve

Hope you feel better soon!
NanciT

JEJ
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby JEJ » Sat Nov 04, 2017 9:04 pm

Metronidazole twice a day for 10 days.

Oh, and what I meant about the kidney doctor dismissing my problem - I mean he's dismissing the C-Dif thing as if I'm being paranoid. The GI office told me the kidney doctor and family doctor should work on the C-Dif and ecoli. The family doctor tried, but the kidney doctor said they should take care of it. Yeah, another kidney doctor. This is what I was told by the kidney doctor -
"If they are concerned with the antibiotic use, they should be able to refer you to infectious diseases for the current infection(s) that you have."
Kinda sounds like he's mad at us for being "concerned", ya know? In other words, HE'S not going to refer me.

amg
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Re: New here - C-Diff because of 7 months of antibiotics because of kidney blockage and infection

Postby amg » Sat Nov 04, 2017 9:22 pm

Well, they picked the c diff antibiotic for you that's not even FDA approved for c diff, and which has the highest c diff recurrence rate after treatment, and which targets more of your good flora (and your intestinal flora has already been damaged by all of those other antibiotic courses). And it has unpleasant side effects for many people. I hope you tolerate it well. It helped my daughter to eat food with each dose. Too bad they didn't give you Dificid which more closely targets c diff and spares your good flora (which you need to keep c diff away!), and which has the lowest rate of recurrence.

Also - weird - I've heard of Flagyl being given 4x per day or 3x per day but not twice a day.


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