Question about Bad UTI and IC

[aleet7]

Over the last 4 days I've been seeing more and more blood in my urine. I called my doc to find that he's on vacation. I told his nurse what's been going on and she told me to go to Urgent Care that instant! She said that blood in urine is not typical of IC. Anyway I went to urgent care. They said that they saw blood and white blood cells in my urine so that wrote me a script for Cipro and Pyridium. Anyway I get a call today saying that they got their labs back and I need a stronger antibiotic! To be very honest I only thought that I was having a flare and didn't realize that I had a UTI( my first since cysto/hydro). Is is typical to have UTI's with IC? Oh and by the way the Urgent care doc didn't know what IC was! She also asked what meds does docs treat IC with? Do any of you run into docs that know nothing about IC?

Thanks,
Teela

[vm]

I used to get UTIs with IC allllll the time. It can definitely happen. And it makes it very hard to distinguish when it's a UTI or just a plain old flare.

Most of the urgent care doctors and nurses I saw had no idea what IC was - but now and then I run across one who does. I see it as an opportunity to educate. I had one guy ask all about my meds and said he was going to research it a little on his lunch hour.

[aleet7]

Wow, that is a great chance to educate. I was glad that the doc didn't act like she knew all about IC when she didn't. Maybe this will give her a chance to research IC. Also now that I know that some of us still get UTI's with IC then maybe I'll not wait as long to go to the doc instead of thinking everything that hurts is a flare. Thanks for sharing that with me!!!!

Best Wishes,
Teela

[vm]

Once upon a time I read that some ICers are actually a little more prone to UTIs b/c our bladder lining is so inflamed/damaged. I'd never be able to find it again, but I think it was in a guest lecture transcript here on the site.

Some ICers don't get UTIs at all, but many of us do! Just makes it that much more "fun" to know how to treat a flare-up when we have one..... :bonk:

[aleet7]

Mothergoose,
I know exactly what you are saying. I absolutely could not tell that I had a UTI because I always feel achey. I started seeing blood so I called my doc. Yesterday the doc called back with my labs and said that I needed a stronger antibiotic. At first they put me on Cipro and changed it to Keflex. Anyhow it's weird not being able to tell if you have a UTI because we think it might be a flare coming on. By the way, how did you find out that you have a neurogenic bladder? Was that discovered with a cystoscopy?

Teela

[aleet7]

Kim,
I read the same thing some where about IC patients and UTI's. The Urgent care doc asked me if IC patients were serceptible to UTI's and I told her maybe( I've only known that I have IC for a month now so I know very little about it). I pray that this is not a regular thing for me. I feel really out of it(tired) even though I don't feel much different than normal with this UTI. And to make matters worst my period came early so I have that to deal with too.

Teela

[ICNDonna]

It's been a long time since I've had a UTI, but I know it's sometimes hard to tell the difference between a UTI and a flare --- so it's always a good idea to check it out, especially if there's visible blood.

When it's obvious that there is an infection, most doctors will go ahead with a wide spectrum antibiotic, like Cipro, pending culture results. Sometimes a change needs to be made when the culture has been completed.

Donna

[Miss.Anthropy]

Hmm...I had the exact same experience on Sunday. I have recurrent, resistant UTI's (15 or so in the last 18 months). I hadn't gotten one in 3 months after having weekly instills for 6 weeks. I have antibiotics, but since the infection is always resistant to something I decided it would be best to go into urgent care and have my urine cultured and get something for the pain. When I finally saw the doctor I explained that I have IC and that I am in a tremendous amount of pain because the UTI makes the already daily pain even worse and he kind of just nodded and said he'd give me some Vicodin. I'm convinced he didn't even know what it was. In fact, my urologist doesn't even seem to know a lot about it. Kinda scary.

[aleet7]

Hmm...I had the exact same experience on Sunday. I have recurrent, resistant UTI's (15 or so in the last 18 months). I hadn't gotten one in 3 months after having weekly instills for 6 weeks. I have antibiotics, but since the infection is always resistant to something I decided it would be best to go into urgent care and have my urine cultured and get something for the pain. When I finally saw the doctor I explained that I have IC and that I am in a tremendous amount of pain because the UTI makes the already daily pain even worse and he kind of just nodded and said he'd give me some Vicodin. I'm convinced he didn't even know what it was. In fact, my urologist doesn't even seem to know a lot about it. Kinda scary.

It's a lot scary to me! I went out of town and was in a horrible flare. My family kept saying go to a doc here and I was very reluctant because I've run into docs who know very little to nothing about IC! I never thought about the UTI being resistant! I still see blood even a week after taking the antibiotics!

[karen10]

There was some recent research that found that 18-36% of women had a connection between frequent UTI's and IC. They're not sure of the connection yet. It's definitely true for me. About 5 years ago I had my first UTI and after that had one about every 3-4 months. Four years later I was diagnosed with IC and my daily symptoms started.

A lot of people, including those in the medical field are still very unaware of IC. So it's so important that as IC patients we all raise awareness whenever we can!!

[aleet7]

There was some recent research that found that 18-36% of women had a connection between frequent UTI's and IC. They're not sure of the connection yet. It's definitely true for me. About 5 years ago I had my first UTI and after that had one about every 3-4 months. Four years later I was diagnosed with IC and my daily symptoms started.

A lot of people, including those in the medical field are still very unaware of IC. So it's so important that as IC patients we all raise awareness whenever we can!!

So true! So many are in the dark about IC including some in the medical field! I do worry about travelling with IC because I fear going to a doc out of town that may not know about IC. Today my uro said that he didn't think there was a connection between UTI's and IC, it's either one or the other(according to him). He did think that hormones may play a role with IC though. I wish we had more facts to go on!

Teela

[nottoc4]

I'm one that has had frequent UTI's and then got IC. Hormones have nothing to do with my case of CI...I'm 66 years old and just diagnosed in June of this year. CVS drugstore sells several brands of test strips over the counter for testing urine for UTI. They measure nitrates and blood in urine. I think I'm going to get a box and have on hand. If the test strip indicates nitrates or blood I will take a trip to the Doctor. If it doesn't, I would just assume it's IC causing the symptoms. I just had the last of 9 bladder instillations yesterday and don't go back to see the Dr. until the end of October. I take Elmiron 3 times a day and have plenty of Pyridium on hand for flare ups. The Dr. told me if things go down hill I can call him and get a few "touch Ups" of bladder instillations.

[aleet7]

I'm one that has had frequent UTI's and then got IC. Hormones have nothing to do with my case of CI...I'm 66 years old and just diagnosed in June of this year. CVS drugstore sells several brands of test strips over the counter for testing urine for UTI. They measure nitrates and blood in urine. I think I'm going to get a box and have on hand. If the test strip indicates nitrates or blood I will take a trip to the Doctor. If it doesn't, I would just assume it's IC causing the symptoms. I just had the last of 9 bladder instillations yesterday and don't go back to see the Dr. until the end of October. I take Elmiron 3 times a day and have plenty of Pyridium on hand for flare ups. The Dr. told me if things go down hill I can call him and get a few "touch Ups" of bladder instillations.

I have to know if the instills are as painful to you as they are to me? I just had an Elmiron instill 2 hours ago and I am more miserable than when I went to the doc! I've been in the bath tub since I got home and my urethra and bladder are on fire!!!! If that is how I have to feel I never want another one!!!! My doc told me to buy Uristat OTC instead of writing a script for Pyridium and would not give me any pain meds and wouldn't refer me to a pain clinic!!!! I'm really upset right now that I feel so bad with no help form my doc!!!!! Also my dad died yesterday and i have to go out of town in two days with no pain meds while in a flare!!!!!(sorry for the rant).

Teela

[karen10]

My two cents: :) Honestly I have found that with all the research that I've done, I often know more than the average doc (primary care) on IC. I offer counseling services for patients with IC in partnership with my IC doc and nurse, and they often come to me for info on the latest news! When first diagnosed, I took 4 months off work and spent that time researching IC. As a patient, it's so important to be empowered and to do your OWN research. Docs are just human beings like you and I. They don't know everything in every area. It's just too much info! So, you can help them out with things you learn. Bottom line is no one knows all the answers to what IC is, what causes it, etc. Mine was only ever connected to UTI's. There were no hormone changes, no surgeries, no other medical problems what so ever.

[nottoc4]

Of the 9 instills I had done only one affected me like you are feeling now. It felt like someone stuck a hot poker up my urethra..I could hardly walk and just layed on my bed and cried for 3 hours. I did drink an 8oz. glass of water with a teaspoon of baking soda in it and also took a Pyridium. After about 4 hours it eased off and then I had 3 glorious days of no pain. When I told the Dr. about it the next time I went for an instill he said sometimes that happens!!Try the baking soda and if you have no pyridium get AZO over the counter at the drugstore. Hope you get to feeling better and so sorry about your Dad.:pray:

[vm]

If the test strip indicates nitrates or blood I will take a trip to the Doctor. If it doesn't, I would just assume it's IC causing the symptoms.

I've used those strips in the past - they are very handy. :) Just keep in mind that they do miss infections sometimes. I had two fullblown UTIs that the strips completely missed.

[aleet7]

Karen,
have you found that stress plays a role in flares? My uro is not convinced of that! He asked if I was following the diet. I told him yes. He asked if I were taking Elmiron religiously. I told him yes. He then said that there is absolutely NO reason for me to be in a flare! I explained that my dad passed away the day before and that I spent two weeks running back and forth to the hospital. Also the day my dad had a stroke my daughter(3 years old) was diagnosed with nerve deafness in both ears, oh and I have an autistic child! I've been so stressed out and I'm sure that stess is what's causing my most recent flare.
Best wishes,
Teela

[karen10]

Yes, 100x YES!!! I have heard that from SO many people I've talked to and counseled!! My doc also has id'ed two personalities, type A and more delicate, passive, not assertive enough type people as ones having IC. The first brings their own stress to the table (I'm one of those!) and the other aren't assertive enough in their lives to manage stress well. They end up being the caregivers or absorb everyone else's stuff and don't take care of themselves. So depending on which type, I work differently with them. I've also heard that confirmed from other experts. IC and all auto immune conditions are proven to be exacerbated by stress. With conditions like this, it's so important that we do our research and talk to lots of people. So far the docs don't agree on this. And for good reason, they don't know what causes it, there are such a variety of symptoms, and different people respond to different things!

So sorry to hear about all the stress you're dealing with. Make sure you learn how to take good care of yourself! We might think we know what this means, but make SURE you check it out and then do it!! As I said, I create much of my own stress, but I'm learning to be less type A and learning how to manage my stress too. I also work with high risk families and children so I'm on call 24/7, but I learn to take breaks, refer to other team members, etc.

And keep trying different things, snake oil even :)--if it works and isn't bad for you (but do your research thoroughly and always check with a medical professional).

[jen74]

I am one who does not manage my stress well I believe. Just having a debilitating condition like IC is stress as it is. I know I use to see a phsycologist who did visual imaging with me for my pain, though this was for my digestive disorder and the severe throat burning I had. It did help to relax me, but as far as pain, it never helped that.
I agree though, stress makes everything worse. The question is, how do you relieve stress when it is caused by severe pain that does not go away no matter what you do?

Jen

[nottoc4]

I can't connect my symptoms to stress. So many UTI's and antibiotics is what I think started mine.

[aleet7]

Karen,
thank you for the confirmation! My gastro told me to learn how to manage my stress or suffer! Besides the IC I have esophagitis and esophageal ulcers! My doc told me to make some changes in my life or else see him regularly! That statement was very clear to me. knowing how much stress can affect health is enough reason to learn how to cope with things instead of internalizing everything!
Best Wishes,
Teela