Saw another doctor.

[Dees1977]

I went to another uro..just to see what he would say. I was diagnosed with possible IC after hydro/cysto on June 1st. I felt really uncomfortable with this 2nd uro. It has only been a week since I had the hydro and he wants to start instillations on Monday..and do it 3 times a week for 2 weeks then 2 times a week for 11 weeks. I am not sure what to do. I have felt worse since the cysto/hydro..they checked my urine and it showed high infection. He told me that it couldnt be since I was on a low dose of macrodantin and said it was a fluke. What do you think? I am so confused he also told me I will be doing things to you that are not on the books and you willh have to sign a waiver to ok them. He was sorta creepy. What should I do?

[Janie Miranda]

Yeesh. If your gut feeling wasn't good about this doctor then don't go back to him. Every time I've went against my intuition on things like this I've regretted it. I also find it odd that he would think you didn't have an infection when the test showed that you did. IMHO If you have an infection it really needs to be treated with either a different antibiotic or a higher dose of the one you are on now - you don't want the infection to get worse! Maybe it is time for a third opinion and ASAP - or at least go back to your original URO and get that infection checked out!

[dyno]

Hi, his statment...he also told me I will be doing things to you that are not on the books and you willh have to sign a waiver to ok them. He was sorta creepy. What should I do?

That would be enough for me to ask more questions and maybe look elsewhere. I also believe a culture should be done to check for an infection.

My gut tells me to go very cautiously with this one.

[Dees1977]

Is it possible to get a UTI after the cysto/hydro even tho I was put on low dose macrodantin?

[dyno]

Yes, it is very possible. You need to have your urine cultured to make sure if you do have an infection it is being treated with the right antibiotic.

[Dees1977]

Well I just called my first uro and told him that I feel like I have a UTI..he put me on Levaquin. On the results yesterday my wbc was 90..They said it should be 1-2 but it was the IC there was no way it was a UTI. Maybe the macrodantine was working for me.. WHO KNOWS.. Thanks guys for listening. HUGS

[dyno]

Dee, the one thing I have learned it is so important with IC to have the urine cultured. There is so much antibiotic resistance going on that getting that culture assures you that you have the right antibiotic.

I hope you are feeling better soon.

[Dees1977]

How do you get a culture? Do they have to send it off? Thanks

[Shelka]

HI Dee,

I'm sorry you're having to deal with the uro-runaround on top of everything else. I had the same problem initially, I saw 3 uro's and they ALL said different things so it was very very frustrating.

The last thing you probably feel like doing is seeing yet another dr but maybe if you do a bit of looking you can find someone close to you who you feel more confident with (by the way, this website lists physicians who specialize in IC so you might want to have a look).

Finally, the last thing you wrote about him being creepy is NOT a good sign. EVEN if he is a competent doctor it's really important that you feel confident and have as good a relationship as possible with your uro -- this can go a looong way in coping better with IC. I would suggest that you try and find someone you feel more comfortable with if that's possible. In the meanwhile, do you have another dr (family doctor?) who you can go to to discuss this with? Maybe you can put off the treatement for another week or so until you get another opinion?

take care of yourself, I know how hard & scary it can all be in the beginning.Shelley

ps - I just received your email so I'll be replying shortly

[dyno]

Dee, I took something from the ICN Handbook about urine cultures.

ANTIBIOTICS TO TREAT BLADDER INFECTIONS
Some IC patients began their bladder troubles by having a severe bladder infection. (Research has established that a given percentage of IC patients do have a history of childhood bladder problems.) Others may have had several recurrent bladder infections. Still others may have developed an infection after a stay in the hospital or after undergoing some medical tests (i.e. procedures which involve urethral catheterization).
Doctors usually treat bladder infections in IC patients as they do bladder infections in other patients-- that is, they culture the urine and prescribe antibiotics.

IC patients typically get infections with the same organisms and use the same antibiotics as other patients. Cipro, Septra, Macrodantin and Keflex are some antibiotics that are commonly used to treat urinary tract infections. But because IC bladders are very sensitive, many patients have intense pain before there are enough bacteria to grow to significant levels in lab tests.

It is frustrating and often painful to have to wait to see the doctor, to repeat cultures, or to get antibiotics. Often times, your doctor may provide an antibiotic prior to the culture results. However, some of the very early theories of the cause of IC blamed the overuse of antibiotics. Whether that is true remains to be established, however we do know that the casual use of antibiotics can lead to the development of resistant strains of bacteria.

Try to wait until you have firm culture results before using antibiotics.. particularly antibiotic sensitivity results. Indiscriminate use of antibiotics can have long term effects and until you know what the bacteria is sensitive to, you can't really know if the antibiotic you are taking will be truly effective. Given the fact that most IC patients have been prescribed antibiotics in the past, it can be tempting to self-administer without getting culture results. Please reconsider this potentially dangerous practice.

If you have a fever, contact your doctor immediately, particularly if your fever spikes over 100 degrees. This may be a sign of an infection progressing to the kidneys. For pain relief, try using self help techniques like soaking in a tub, using a heat or cold pack, etc. You can also use oral medications such as PYRIDIUM & URISTAT.

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I hope this helps you understand a little better.

[vm]

I was on Cipro for 3 days after my cysto w/ hydro to prevent infection ---- and I still got one. It' is absolutely possible to still develop a UTI. Different antibiotics are effective against different strains of bacteria. The Macrodantin might not have been effective against whatever strain you are infected with.

If you have a bad gut feeling about this guy - run the other direction and thank your gut for saving you....

[ICNDonna]

My first reaction would be to go back to the first doctor unless there is some particular reason you don't feel comfortable with him. It's absolutely possible to be on antibiotics and pick up an infection. That's the reason culture and sensitivity tests are done. Leviquin is a broad spectrum antibiotic, which simply means there are many different bacteria it will control.

Donna