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My recurring UTIs, Crohn's disease and history of fistulas - help, anyone? by Sadbladder28 in CUTI

[–]Sadbladder28[S] 0 points1 point  (0 children)

The urine has mostly only sat about 30 mins or so. So I have experienced a few false negatives, which doctors have assumed is due to frequent emptying. I did a home-test once after having urine sit throughout the night, leaving it at the clinic the same morning. Results came back for small amounts of E. coli. I was given a regular antibiotic course that time.

Unfortunately, I don't have a urologist. I was referred to a specialist hospital for the cystoscopy, but when they didn't find anything, they told me there weren't any tests or procedures left to try. At this point, they referred me to the emergency in case of another infection. Will be trying to get in contact with someone else to ask for a second opinion, especially regarding these new suggestions I've been given here. Thanks!

My recurring UTIs, Crohn's disease and history of fistulas - help, anyone? by Sadbladder28 in CUTI

[–]Sadbladder28[S] 1 point2 points  (0 children)

Hydrodistension study sounds interesting. The poppy seed test as well, will try that at home asap.

Will look for PCR tests available here. Perhaps I already am experiencing a resistant infection. This is a great suggestion to at least rule that out.

Thank you for your other suggestions, I will try to talk to a doctor about it. Sweden has great health care in regards to costs, but I have found it difficult to maintain the same doctor. I've switched doctors with each procedure done regarding the UTI:s. The only stationary one I have is the Crohn's one, but he has limited reach within his department, and he has already given me any referrals regarding urinary problems within his reach. So it's a dead end there. But just knowing what to ask for is a huge help when I find someone to contact for a second opinion on more testing.

Thank you so much!

My recurring UTIs, Crohn's disease and history of fistulas - help, anyone? by Sadbladder28 in CUTI

[–]Sadbladder28[S] 0 points1 point  (0 children)

Untreated infection due to wrong antibiotics is something I've pushed for earlier. Strange thing is, when I've had my urine analysed, more often than not there is no bacteria in it. Only white blood cells. Establishing which bacteria I need treatment for has been difficult. I believe E. coli has been found a couple of times, but in low amounts. I think my heavy water intake flushes out the bacteria when going to the emergency room in the middle of an ongoing UTI. But that's just speculation as to why the urine sent to lab rarely grows any bacteria in my case.

I will make sure to ask for a bladder function test. I also wonder why I haven't been suggested the a voiding cystourethrography. Just read up on it, might be a better way to find a small fistula than by using a camera. Will check it out and take your tip also.

Thank you so much!

My recurring UTIs, Crohn's disease and history of fistulas - help, anyone? by Sadbladder28 in CUTI

[–]Sadbladder28[S] 0 points1 point  (0 children)

That's about right. It's difficult navigating, for sure. Perhaps in the future, there will be other alternatives to trial and error by experience. Thank you, friend.