My Story - Opinions needed

[jess741]

Hi Girls & Boys

8 weeks ago I slept with my new partner and came down with a really bad e-coli infection (this is normal for me), this was let get out of hand by my GP's and i ended up in hospital for 5 days on IV antibiotics . I had a kidney ultrasound which came back clear but never saw a urologist as an inpatient. Since then i have had the following symptoms; urine cloudy, with bits floating in it (sorry about detail), urine stream swaps from thin and powerful to normal. My urine has blood and protein in it and generally looks awful. I have on and off kidney pain and lower back pain, my bladder feels like it is full of battery acid all the time (i mean i have had no let up for 8 weeks), I have no urgency or frequency (going 4-5 times a day), i feel better when i lie down or sit on the loo, i have no pain on passing urine or at the end. I have been on the IC diet and it has made no difference to my pain levels or anything. I went 2 weeks ago for a cystoscopy but the urologist wouldn't do it because my urine was so bad and i'm due to go again next Monday for another but urine hasn't changed. I feel like when i am on antibiotics (which i have been on and off for 8 weeks, i feel an improvement but not 100%

So what do i do as i am going crazy with pain, i go to bed early so i can take my pain killers and sleep as it is the only let up, I am a nurse and feel so useless that i can't help myself. I've lost a stone and half as i have no appetite, my family are worried about me. I have changed as a person in the last 8 weeks, i;ve gone from being strong, out-going and bubbly, to quiet, reserved, depressed.

I would welcome any opinions, do you think i have IC?
Thanks for listening to me moan, i feel people here are the only ones around that understand.
Jess x x

[Leslieann0605]

I can't really answer the ic question but I couldn't read your post and not answer at all. You poor soul! What a terrible situation to have gotten so sick.
Being in so much pain and losing so much weight is very depressing. It is very hard to hang in there. I hope you find some kind of help soon!

You said you got an E coli infection. I noticed you are from the UK so maybe you could clarify for me. I am from the US. Usually when we talk about E coli infection, it is an intestinal infection. Did you have that in addition to the bladder problems?

[jess741]

Hi Leslieann

Thanks for your reply. E-coli lives in the gut normal but can live on your outsides following a bowel movement, when having sex this can then be pushed into your urethra, thats how i got mine cultured.

Jess
x

[bubbe1]

my story, opinions needed

Hi Girls & Boys

8 weeks ago I slept with my new partner and came down with a really bad e-coli infection (this is normal for me), this was let get out of hand by my GP's and i ended up in hospital for 5 days on IV antibiotics . I had a kidney ultrasound which came back clear but never saw a urologist as an inpatient. Since then i have had the following symptoms; urine cloudy, with bits floating in it (sorry about detail), urine stream swaps from thin and powerful to normal. My urine has blood and protein in it and generally looks awful. I have on and off kidney pain and lower back pain, my bladder feels like it is full of battery acid all the time (i mean i have had no let up for 8 weeks), I have no urgency or frequency (going 4-5 times a day), i feel better when i lie down or sit on the loo, i have no pain on passing urine or at the end. I have been on the IC diet and it has made no difference to my pain levels or anything. I went 2 weeks ago for a cystoscopy but the urologist wouldn't do it because my urine was so bad and i'm due to go again next Monday for another but urine hasn't changed. I feel like when i am on antibiotics (which i have been on and off for 8 weeks, i feel an improvement but not 100%

So what do i do as i am going crazy with pain, i go to bed early so i can take my pain killers and sleep as it is the only let up, I am a nurse and feel so useless that i can't help myself. I've lost a stone and half as i have no appetite, my family are worried about me. I have changed as a person in the last 8 weeks, i;ve gone from being strong, out-going and bubbly, to quiet, reserved, depressed.

I would welcome any opinions, do you think i have IC?
Thanks for listening to me moan, i feel people here are the only ones around that understand.
Jess x x

Jess,
Just wondering, when you saw the urologist, did he/she do a urine culture for you? Could be that you have a UTI that the antibiotics didn't completely get rid of. If you're off the antibiotics now, it might be worth having your urine checked for infection.

I wouldn't want to venture a guess as to whether you have IC. The cysto. should help to answer that question. In the meantime, stay on the diet, drink water, try baking soda in water if you don't have high BP. Sometimes heat helps, or ice packs, which ever is better for you.

I hope you can get some relief, and answers.

Good luck,
Laurie

[jess741]

Hi Laurie

Because my GP just keeps changing them I haven't been able to have a culture for a while as it comes back false negative due to the antibiotics. I am stopping my antibiotics tonight for Mondays appointment. My urologist said my urine looked awful even on antibiotics and wouldn't do the cysto due to if there was bacteria he could make me really ill!!! Plus i am having the cysto under local so no chance of doing a distension so i'm not sure i will have any more answers.

Thanks for your reply

Jess x

[ICNDonna]

I think the most common organism causing UTIs is e-coli --- I may be wrong, but I know that's not unusual.

If you're in an ongoing relationship with your new partner, I suggest he also be checked to be sure he isn't a carrier.

I hope you get some answers soon. Not knowing is not fun!

Warm hugs,
Donna

[Leslieann0605]

Oh Jess , How frustrating! Do you have pain medicine? Are you able to rest at all? Has your urine improved at all in 8 weeks?

[jess741]

Hi Donna

Unfortunately i get this alot and have had re-occurant UTI's with every new patner, its like my body doesn't like them, but eventually they have just gone on there own accord. I have been taking a low dose antibiotic every night for the last 3 years which did the trick up until now. I know not fun

Leslieann

I am working as a nurse so cannot take anything in the day due to side effects, fuzzy head and sleepyness, so i can't wait to get home and take morphine and lie in bed all night. My friends are sick of me being sick, but my boyfriend is wonderful and understanding. No improvement in my urine for the 8 weeks and no answers as to why. So i am dreading taking my last antibiotic tonight incase all my uti symptoms come screaming back and i have to be off work weeing razor blades , then wait for culture and not sure how long it will be until they can culture my urine for there to be no antibiotics in my system . So blue

Thanks for replying

Jess x x

[Barbm]

I would find a new urologist. It definitely sounds like you are still infected. You didn't mention a Cat scan of your kidneys. This should be done to be sure you do not have an abnormalty of the urinary system or a kidney stone. Also, once everything is straightened out- you can get a minor dose of antibiotic- such as macrodantin 50mg - that you take after sex that greatly helps to prevent new infections.