Could this be a flare? Had been in remission for years.

[heybrej]

Hi All - I hate to be back, but I am. I was diagnosed with IC when I was 19. I was actively in pain for about a year and a half (6 months before that and one year after) but since then, for the past 6 years, I've been in what I believed was remission. I would get a bladder infection as spuratic as once every 2 years, and at the most, twice a year. Each time it was fairly easily taken care of with antibiotics (it was definitely an infection each time as the cultures were positive)

Well, this April I woke up with a RAGING UTI. I was peeing chunks of blood. I did not see a doc as I am now uninsured, but I have always keep antibiotics on me "just in case" - I took the meds for about 7 days and it cleared up. Well, about 2 1/2 weeks ago I was feeling symptoms of a UTI or perhaps my IC. I bought those AZO test strips and they were negative, so I ignored the discomfort and went on. Last Wednesday morning I felt it again and took a test strip, and it was slightly positive so I started the antibiotics again. I've been taking them for 6 days and while my symptoms have MOSTLY gotten better, I'm still not feeling 100%. 4 days out, I felt 90% better, but then the followind day some pain was back again. There is still a bit of burning in my urethra, I can't hold my bladder very long (not because of urgency per say, but because my bladder starts to feel uncomfortable...if that makes sense) and after I void, both my urethra and bladder feel uncomfortable. I am still taking the antibiotic since I read that after such a bad infection (the one in April) you should stay on the meds for at least 7-10 days to really fight it.

Part of me is wondering if these two nearly back to back UTIs have somehow caused my IC to flare back up. Before my initial diagnosis, I got the first UTI of my life and then things spiraled out of control, was on antibiotics for 6 months even when the cultures were negative, and then finally saw a urologist who diagnosed and treated me (bladder installations for 12 weeks).

Any words of advice? Does this sound like a flare or if my urinary system just more prone to additional pain and discomfort due to my IC, even if it has been in "remission" for 6 years?

I haven't been on these forums in at least 5 years (so happy they are still here!!) - are there any new pain remedies that I should try besides good old Azo and warm compresses?

[ICNDonna]

It sounds very much like you need to see a physician. There's no way I could guess what's going on with you. It really isn't safe to take antibiotics without consulting a physician.


Donna

[nineteenwinters]

I know you don't have insurance but maybe you could get in at a low-cost clinic? At least then they could run a culture just in case. I understand you're using past-antibiotics to save money but using them that much unless prescribed by a doctor (who will weigh the risks) probably isn't best. They could stop working effectively.

And if it is a UTI getting them that close together would be another reason you should really see a doctor. Maybe they can put you on a different/stronger antibiotic to make sure it really kills the infection. I suspect if you do have a UTI it's never really going away, the antibiotics you're taking just make most of it go away and then it builds up again.

While there aren't usually Uros at clinics at least you could get a culture done and discuss your concerns with a professional?

I hope you get it sorted out and if it is IC go back in to remission soon!

[heybrej]

Thanks Donna and Andrea. Yes, I am getting quotes for insurance this week. Both my husband and son have coverage but I've made the sacrafice (ps- I've gotten married and had a son since the last time I posted here!) and have gone without. I know that last time I was dealing with this I was in an out of ER's, doctor's offices, and finally the urologist's office nearly weekly. No way can I pay for that out of pocket and I need to find a good enough health plan that will cover all of this without a massive out of pocket expense. Ah, joy.

From what I've read, the cultures that a clinic will do are extremely similar to the over the counter Azo test strips. This is the first time I've used them. It showed positive for white blood cells.

I'm allergic to 3 major bodies of antibiotics and I have only ever taken Macrobid or Doxycyclene (which is what I'm taking now). I hate self-treating like this, but it's what I need to do until I can procure some insurance.

[nineteenwinters]

They may do their own version of a test strip initially but a culture tells more. It has to 'grow' and then from that they can tell exactly what kind of bacteria is present not just that there is some. It can help them identify the proper antibiotics that will fight said bacteria. I think it's common for most patients who either have IC or frequent UTIs to get cultured in addition or without an additional strip test.

A urine sample is kept under conditions that allow bacteria and other organisms to grow. If few organisms grow, the test is negative. If organisms grow in numbers large enough to indicate an infection, the culture is positive. The type of organisms causing the infection are identified with a microscope or by chemical tests.


http://www.cigna.com/healthinfo/hw5973.html

Unfortunately for some IC patients test strips will always show positive for WBCs. Due to the fact that the bladder is irritated which can mimic and infection and thus your WBC increases trying to fight off the 'infection.

I hope you get better soon. Congrats on your marriage and son!

[heybrej]

Thank you, Andrea. That makes sense. If things start feeling worse again or don't feel better in about a week, I'll go in and be seen at a Med 7 type clinic. I no longer live near my old urologist, if I did, I would see about going back to him. They were amazing.

I'm such a ding-dong. So, I decided to try another one of those Azo test strips even though I'm still taking the antibiotics. I wanted to see if it could still read any white blood cells. I held the strip in my pee....and it turned bright orange! I didn't even consider the fact that I'm also taking Azo and it has the orange dye. Nice, and what a waste of a $4 test strip. haha.

[nineteenwinters]

Haha! Ooops. Oddly, the ones that my clinic used could still be accurate even when I was on AZO and had orange urine. I need to get some of those.

[Sand]

IC flare

I beleive for me my IC started to really flare after a really bad bladder infection. What you are describing to me does sound like IC but I agree with Donna, that you should see a doctor. Best of luck. I pray that mine will go into a complete remission.

[heybrej]

I'm going to stop the antibiotics after tonight. That would put me at 7 full days, I'm praying it was enough to kill everything off. If I get one again, I'll suck it up and pay to be seen and have a culture done.

I'm still having a bit of irritation. It's mild and livable, but annoying. However, Azo really helps, which is odd for me because in the past (when my IC was flaring really badly many years ago) Azo/Pyridium didn't really help at all. I'm going to try and not take any Azo today just so I can see how I'm really feeling. This morning I can already feel that my bladder is sensitive. TMI, but it's always a bit more sensitive after I go #2, probably from the pushing. It doesn't hurt when I void at all, just the sensitivity afterwards that is lingering.

PS- Why is insurance so darn expensive? I carried my own plan for a while with zero deducitible, no co-insurance and a low copay. That same plan is now $100 more per month. I just can't do it. I am self employed and my husband is a full time student, so we don't have employers to help out. Yay.

[DaniMSC]

oh dear, this sounds like exactly the scenario which brought me out of a wonderful 5-year remission. I had a bladder infection in sept. a year ago, but I was traveling in a foreign country and there was no way I could find a doctor, so I took the anti-biotics i had with me and it cleared up. Then two months later, I had a bladder infection that tested positive (but no culture was done). That one sort of cleared up with ABs, but not really, so a week later I went back. I tested negative. I still didn't feel better a week after that, I got another test and it came back positive for infection, so I got more ABs. From that point on, I never really felt ok again and I have been in a terrible flare for 8months. Sorry thats probably a horrible thing to tell you but its the reality for me.

You should definitely see a doctor, and I am praying for you that it tests as a UTI so you can take some antibiotics and clear it up! Make sure you tell the physician your IC history. I really feel like UTI tests don't work if you've recently been on anti-biotics, even though you still might have bacteria that weren't killed off.

THe only other advice I'd give you is what I really wish I had done last winter when I was dealing with the UTIs- I should have admitted to myself that I was vulnerable for an IC flare but instead I was in denial!!! I should have immediately cut out all bladder irritants in my diet until I was feeling %100 again, but instead I kept drinking tons of coffee (i relied on it to stay awake at my job, but still not worth it!).

Good luck sweetie and I hope the ABs take care of all your current trouble!!!

[Sand]

Thanks Dani. That is pretty much how I came out of my remission a year and a half ago. It's taken a year and a half, but I think overall things are getting much better for me now that I know what I can and cannot eat (I stick to the IC diet) and Atarax has been a real help. Still that flare scared me because it was different then most and previously I haven't had much trouble holding my pee. So I have to admit things might be changing or worsening in the sense that when I get a flare it can be really bad. I've had very little trouble since that flare a week and a half ago and I think it was because of some chinese food I had. Silly me, I should know better. The Prelief wasn't enough for it. I did test for an infection but it was negative.

Here's hoping I can continue having more good days than bad.

[heybrej]

Dani, yikes, that does sound exactly like me I'm sorry that we are both going through this. Damnit, IC really does suck. That's all there is to it.

I'm feeling......okay. Not normal, but I'm able to function and I've been fighting to keep control of my anxiety. Because I KNOW what IC is and how bad it can be, I am so much more fearful now than when I was first diagnosed. I worry that I'm looking at another year and a half of pain, or worse yet, that I will never go back into remission. I've started back on the IC diet. Today was my first day without caffeine. I have a terrible headache and I had to take a nap. I can't tell if my bladder feels better today because of it or not. I've also stocked up on the trusty Trader Joes blueberry juice

My insurance policy was sent to underwriting. Hopefully it will be approved so that I can see a urologist. I also found out that I can see a MD on my community college campus (I'm a part time student) for free and they can diagnose a UTI and provide me to antibiotics for just $10. I am very excited about this! That takes a ton of stress off me since my insurance policy has a fairly high deductible and I don't want to pay each time I need a basic UTI screening.

My symptoms are different this go-around. So far my actual bladder pain is very mild and I can only feel it once or twice a day. My main irritation is right near the outside of my urethra, yet it doesn't hurt when I void. I had been getting some bladder and urethra spasms but I haven't had those in two days *knock on wood* - I also find that when I'm able to keep my mind off of it, I don't feel anything for a few hours at a time. It's mostly when I'm in the car or at home that I pay attention to it and it starts to bother me.

Also, I feel COMPLETELY fine first thing in the morning. I wake up, and I feel great until after the first time I void, and then that feeling slowly starts to creep back. It's definitely worse at night. Last go-around, it was constant and steady discomfort, so I don't know why it's different this itme. I wonder why it feels better after I wake up in the morning?

I think I am going to see the campus doc on Wednesday and see if they can do a detailed UTI test.