Actually, I'm scared.: Just obtained... - The Simon Foundat...

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Actually, I'm scared.

rettalee55 profile image
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Just obtained lab records on urine culture. Enterobacter cloacae complex >100,000 CFU/ML Gram Negative Rod Isolated. Problem started immediately after L5/S1 anterior back fusion done in 2015 with diarrhea. I just assumed due to spinal nerve damage. I have also had constant back pain, and arthritis getting worse all the time. As time progressed, I went from zero UTI, to minimum of 3 bad episodes a week now, with constant ab cramping and diarrhea. Also vaginal irritation. I also had, in 2010, a bladder and rectal sling, which I assumed was breaking down inside causing the problem, or maybe the back surgeon "dislodged" my slings causing something going on.

If I got it by "unsanitary" means, it is hard to believe. I, of all people, won't eat a piece of fruit without washing it first, I won't eat any meat without thorough cooking. I am so particular about my bathroom hygiene it is sometime laughable.

The doctor who ordered the urine culture won't get back with me when I call although I know the hospital who took my urine sample faxed it twice, and I even had to pick up my lab results myself to take to the specialist. Anyway, I finally managed to get an appointment with a urologist for next Wednesday. I can't wait to tell her, when she asks me about antibiotics, how the previous doctor and/or her staff won't comply with anything. Anyway, here is a prime example of why I shouldn't research online about things after reading up on this particular bacteria.

Has anyone else had any experience with this particular infection, and if so any information to impart? I am really scared now and so hope, that if I got something in 2015, that I did not wait too long to get care for this, and that this infection did not do any type of permanent damage.

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incon1982 profile image
incon1982Administrator

I tried to find out more about Enterobacter cloacae complex on PubMed, but what I found wasn't easy to understand or helpful. I am hoping the urologist you will see on Wednesday will be helpful, and I am wondering if you may perhaps need to also see a specialist who knows a lot more about this complex.

I am sure everyone here is wanting to know more about this as well, so please do let us know what you learn about Enterobacter cloacae complex and how it is treated. And we will all be thinking of you, too!!

rettalee55 profile image
rettalee55 in reply to incon1982

Thank you very much for your reply. I will indeed write a message here to let you know about what I find out Wednesday on this bacteria. Surely this urologist will have some information to help me. I know one thing, I am really tired of this burning and urgency I have to put up with, no matter how many cranberry capsules I take, water I drink, pro-biotics I take.

rettalee55 profile image
rettalee55 in reply to rettalee55

Hey incon1982, Well, I saw the urologist this morning, and am following up as promised. I am even more upset and angry than ever before. I learned so far from just a physical exam that my trans-vaginal mesh is coming through my vagina. At the moment it is purely speculative, but when I have UTI symptoms along with bacteria, it shows up after I have been physical, (lots of standing, walking, squatting, bending). As of this morning, (which was quite early) my urine was clear. Since the erosion is showing up vaginally, I have no way of knowing the extent of damage I have rectally since I also have the stomach cramps, diarrhea, leakage, there as well. I thought getting a female urologist was a great move on my part thinking she may be more sympathetic to another female. You see, I brought my husband with me to help with questions. (I have a tendency to forget things when I get nervous). She wanted to narrow exactly what "bothered" me the most. Really? Out of which problem, constant UTI's or dying from fecal poisoning? Also, she brought up that I might have to have the mesh "trimmed". (Trimmed? - Outside or inside the vagina?) While examining me, she turned her head toward my husband and asks him if it bothered him to have intercourse with me. (So who cares if my vagina is torn up, and painful, as long as the husband can do his thing ---) She could not schedule any imaging until the 20 of April, and also is sending me over to a guy for a colonoscopy in the mean time. I already have diarrhea, and I am supposed to prep for that test to be done. The very idea of having a rod shoved everywhere with the idea of tears already in my rectum is so scary to me! I am not concerned with any cancer issues because I did a ColoGuard kit prior to Christmas which turned out fine.

So that is my results. I just might have to get a second opinion now. Where or just who I can go to and/or trust though, I really don't know.

Every time through the years, when I had any surgery, it was merely to have a halfway normal life. I am starting to think that is impossible since everything I do always turns out badly. So sorry for the boo, hoo's here. It is just how I feel right now.

Thanks in advance for reading and listening to me.

rettalee55 profile image
rettalee55 in reply to rettalee55

This is rettalee55 again. If anyone wants an update, well, here it is. About 6 weeks ago, I had the eroded mesh vaginally removed under anesthesia, (of course). I was hoping the uro/gyn surgeon could remove 100% of it, but judging by reading the op records, he got to an area where he nicked a blood vessel, had to stop some major bleeding, and quit, at the point where he was able to remove anterior and posterior mesh and posterior anchors, but had to leave the anterior anchors in place. Apparently the mesh had gotten twisted and misplaced to where it was no longer holding up anything inside so I have not noticed any change urine or rectal, except for no more infections. Such a relief!

incon1982 profile image
incon1982Administrator

I hope this note finds you doing better. Hope you are on a medication that is helping and that there is positive progress.

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