On my 4th round of abx for UTI...had C Diff 16 months ago

[Bobbie]

kit,
Had the test you are referring to several years ago. Ask for a sedative like Valium before having it. You will need to have someone drive you home. Unfortunately I didn't take the Valium early enough and it didn't "kick in" until after I left the hospital.

The test wasn't fun but not that bad. Because of my history of C. diff., the uro. also inserted a form of antibiotic salve to prevent another infection. He discovered I had IC (google it) and since I also had chronic UTI's, I am on a preventative dose of Macrobid (50 mg. a day). So far, so good. I am supposed to follow yet another diet but don't.

I drink lots of water.

Good luck.

[klt03301]

Ha, you guys! I specifically asked doc about sedation...no...I'm not getting anything other than a spray on topical anesthetic. I told him I needed more than that, as I'm already in pain, especially inside the bladder. He said I'd be able to tolerate it. He's very young and new to this group, and that makes me nervous. I have valium at home, and I may just take one of my own before I go. I was going by myself, but I'll have someone drive me. I drink LOTS of water...not helping.

Beth, Cindy and Bobbie: Thanks for the info! It is very helpful! I hope they can find the problem. What I wouldn't give for them to find a stone in my bladder and knock this mess out! I know about IC...had it many years ago in my early 20's. Doc says I don't have it now because they keep finding bacteria in my urine. He also said he was putting me on another abx by mouth so I won't get another UTI from procedure, but I like the idea of abx salve like you had, Bobbie. I'm going to ask for that instead. This young fella may not even know about that. He worries me. I am being transferred to Duke urologist on 10/1 b/c my healthcare will be paid for; it's not with these folks. Had to see this guy b/c I couldn't get an appt at duke before then, and I had to be seen.

I had sigmoidoscopy during c diff with nothing for pain...wasn't bad at all...maybe I can handle this ok. Urologist said if I couldn't take the pain they'd have to stop the procedure, so I'm going to have to bear it. I'm definitely taking the valium, though! Oh, Bobbie, he said I'm going on prevantative daily Macrobid. I know you've done fine on it for a while, so I'm not too worried about it. You've been an inspiration. :-)

Thanks everyone!

Karen

[beth22]

I do not tolerate pain well at all and I had the cystoscopy with whatever anesthetic they put on the probe that goes in. It really was not that bad at all. The type of cystoscopy that they do under sedation is a different kind the doctor told me where they inflate your bladder really far and kind of blow it up like a balloon. They don't do that in the office procedure one. If they see something that they need to explore more, then they do the other procedure as outpatient in a different place, not usually the doctor's office. This is what I was told at least. They can also find stones by doing x-rays. Maybe you should ask your doctor about having one before you go for this if you are worried about a stone.

[klt03301]

Ah, thanks Beth! That's a relief! Apparently I'm having the same thing you did. They've done a CT scan...no stones. I'm guessing bladder stones would have shown on CT, also? He mentioned looking for kidney stones only. All was clear. Thanks again. Now I'm not so worried. :-)

Karen

[beth22]

As far as I know stones would show on a CT scan too. My mom has had a lot of cystoscopies done and she is now 89. She never said anything about it being a terrible experience or anything. I drove myself home after, but it would be a good idea to have someone else drive you in case you are sore or especially if you take valium before as you might be sleepy. I'm sure it will be fine. They do those things every day - I didn't even know that the doctor was going to do mine. I went for an initial visit and he just said that he had to do it and did. Maybe it was better that way - I didn't have a chance to worry about it and he didn't find anything bad. I don't particularly remember much pain - just some pressure and like a stinging sensation. I talked to the Dr. the whole time and told me what he was seeing and then it was over. It doesn't take that long. The valium will relax you too.

[klt03301]

Thank you, Beth. You've helped me better understand what's going to happen next Friday and eased my worries. :-) I get my culture results back on Monday...still have symptoms but crossing my fingers!

Thanks again! :-)

Karen

[klt03301]

I was told today that for the first time in 2 months, I had no bacterial growth in my urine culture! I cried. :-) After so many antibiotics, I have been worried, and know c diff can still hit me. Now I'm wondering if I should still go ahead with the cytoscopy scheduled Friday? I still have a little discomfort, but feeling much better! Doc said it was probably irritation from all the UTIs. I don't want another UTI and possible abx from the procedure, but am curious as to why I couldn't clear them. I had this same dilemma after c-diff...do I have a colonoscopy (still so sick during recovery and pain at right lower abdomen), or wait it out and see what happens? I decided against the colonoscopy and in time, was fine. Has anyone had cytospcopy without getting UTI or having to take abx for it? I know Bobbie's doc used antibiotic salve, but don't know if I'm having the same procedure she did. Thanks for any replies! Keeping my fingers crossed no more UTIs for a long time!!!!

Karen

Karen

[beth22]

They usually give AB for 3 days, otherwise you run the risk of getting more bacteria in there. If it were me, I'd have it done to see if there is anything to show why you had all those infections. If you do it with 3 days of AB it is better than getting another UTI and having to take the AB for longer. It's not something that needs to be done all the time, but you do want to rule out any growths in the lining of the bladder or other abnormalities.

I would not have had the colonoscopy either, but that requires sedation and I don't like anesthesia. Had it done for stool transfer, but I still don't like the idea.

I would talk to your doctor and see if he feels it is really necessary or if you can wait and see.

[carrie]

Hey Karen,
So happy to hear you are bacteria free! Tough call about the tests. I guess it's back to waying out all those pros and cons and the crazy talk that goes on in our heads after enduring c-diff. Can they put you on the antibiotics that you have tolerated the last month? Just stay away from those real nasty offenders. I swear the blueberries every day have helped me. I was so scared after the hysterectomy as I heard as many as 50% get a UTI after the procedure. I drank and drank and drank and I made them take the catheter out soon after I woke up from the procedure. I had to pee almost every hour for 36 hours but I'm glad I made that decision. If you have the test just make sure you drink, drink, drink after to try and clear your urinary tract. Let us know what you decide, I know making that type of decision is difficult.

[klt03301]

Thanks, everyone. I drank and drank...water and pure cranberry juice; even vinegar water...it didn't help for the longest time. Nothing I did seemed to work, but I took Roy's advice and am still on the D Mannose and probiotic for urinary tract health, which I will continue to take for a very long time. I still drink pure cranberry juice...have not tried blueberry...maybe I can find that in pure form. I eat lots of blueberries. Something finally worked, and I don't believe it was the abx that knocked it out in the end...I took Macrobid twice and Augmentin twice; the last Augmentin dose was even weaker than the first.

Anyway, I see my ID doc at 12:00 Friday, then I'm scheduled for cystoscopy at 3:00 that day with urologist. I'm asking my ID doc's advice; I know he's concerned with me taking all these abx. I tolerated even Augmentin well, so far, but I'm really pushing it with all of these, you know? I'm not out of the woods with C Diff. I'm with you, Roy; I want to avoid it. I hate to cancel an appt with a doc on the same day it's scheduled, but I'm going to take my ID doc's advice. If he says hold off, I'm going to. Feels so good to be almost back to myself...still have some bladder tenderness. Will let you guys know, and Carrie...I'm so glad things have turned out this well for you!!!!

Karen

[carrie]

Hey karen,
I'm curious to know if you went for the tests and what were the reults. I'm also curious if they ever tested your urine for ESBL. I'm asuuming so but I was just working with a resident who has this and I was helping the family understand what it is. I pulled off a fact sheet that indicates it is often a problem after taking antibiotics. I'll just quote what the fact sheet reads
"spread is made easier if the bacteria normally present in the gut are killed by taking antibiotics. Use of some newer antibiotics appears to predispose patients to infection with ESBL-producing bacteria which may explain why this has become an issue now."
"It is possible that the ESBL-producing bacteria are acquired months or even years before they cause infection. Thet live harmlessy in the gut until the patient becomes ill or requires antibiotics.".
"ESBL-producing strains may be present for months or even years. Use of antibiotics probably does not help; antibiotics can treat infections but do not necessarily eliminate the bacteria from the body especially if there are some in the gut".

Just more reason to stay away from those high offenders, it obviously causing more issue than c-diff.
I found this information to be very interesting, I'll just keep drinking and drinking and drinking more water to keep flushed!
Let us know what you decided about the test.
Carrie

[klt03301]

Hi Carrie,

I've never heard of ESBL, and if anyone found it, they never told me. I'm going to call my ID doc tomorrow. I didn't have the cystocopy b/c he didn't feel I needed an invasive procedure at this time. My last urine sample didn't grow a bacteria, and there were no white blood cells in the urinalysis. I left another urine sample with him and should be hearing from him tomorrow with the results.

Here's what he told me and it blew my mind. I don't even know what to think. Still having very mild symptoms, BTW, that come and go, but doing MUCH better.

He said that I did not need abx for the last three UTIs, because I didn't have one. He said I only had one, back in July. He looks at the urinalysis and if he sees white cells, he sends it for culture, because it will grow a bacteria and tell him what antibiotic is sensitive to it. He said I had no white blood cells in the other 3 UAs, therefore, he would not have treated me for them, even though they grew a bacteria. He said they grew a bacteria because they shed from the skin, and if mishandled or left out long enough, they will always grow a bacteria. ?? He asked me if the abx were helpful, and I told him they were not. I posted earlier that I don't believe the abx cleared this up. He also asked if my symptoms came and went or were constant. That was the weird thing...it came and went. Anytime I've had a UTI in the past, I hurt constantly and the pain only got worse, and always improved w/in 24 hours of abx. He said I could be having simple urethritis (irritation) from first UTI, or it could be a number of things. He says if I still have symptoms, he will send me for further testing with a Duke uro-gyn. He was very concerned that I'd taken 3 rounds of abx he felt were unnecessary. He asked if I would like for him to take over my care. I said "yes!" Now, this doctor knows what he's talking about, but I'm totally confused about the bacteria, etc. All I know is I feel better, but not 100%, but not unwell enough to go for further tests. I just looked over the copies of the test results he gave me and see nothing about ESBL. He got them from my docs and they'd never given me copies. There were no malignant cells, thank goodness.

If what he's saying is correct, I took 3 rounds of abx for nothing, putting myself at further risk of C-Diff, and abx resistance. Two of those were Augmentin. I asked how long it will take before I'm out of the woods of getting C-Diff from the abx. He said I could get it at any time, but usually it will start while on them or within 2-3 weeks after stopping. He also said I didn't even have to take abx to get it again, but it certainly increases the risk. So, I'm just lving my life, Carrie, and enjoying each day. I have finally been able to get back on my bike w/o irritation, and I'm still going to the gym. I eat a healthy, varied diet, usually a salad every night, take my probiotics, etc. I won't live in fear of getting it again. I just won't. It paralyzed me the first time and I'm not going to let it do it to me again. I'm MAD!

Oh, the one food I have not eaten at all since C-Diff is beef. I never liked it to begin with.

I would really love to hear from others, especially Bobbie, about this culture question regarding bacterial growth. I'm just confused. I want to thank you for the ESBL question. I googled it and no one's ever told me I had it. It's certainly a question I'll ask him tomorrow! Wish me luck that my UA was clean!!!!

Karen

[beth22]

Wow, Karen, I'd be mad at the doctor too. Taking AB when you didn't need to with your history of c diff is not the thing to do. I do remember years ago after I had a UTI I also felt the symptoms were not gone and the urologist told me that it was just irritation from the UTI which takes a while to go away and it did. That doctor also said that to get a specimen when you need to know for sure about the bacteria, you have to do it with a catheter for it to be sterile. I remember the nurse putting in this rubbery thing and getting the urine out that way and then taking it out. Maybe because it doesn't get contaminated with other fluids that way. I don't know. It didn't hurt, but it wasn't pleasant either. Hopefully, this is the last of this for you and you can go on with your life now.

[klt03301]

My urinalysis and culture are clean for the second time! No blood for the first time in 2 months. Yay! Now, if I can keep from getting C Diff again. Crossing my fingers!

Karen