Anyone have experience with IC and UTIs?

[Library_Girl]

Hello, all! I recently found this site and have learned tons since then. You all are a wealth of information as well as a kind and supportive group.

I understand that experiences with IC as well as its treatment are extremely individualized, but I would appreciate any input you can share. I also understand that you all are not medical practitioners and will take any suggestions from fellow sufferers as just that, suggestions. Again, though, I would appreciate any input you can share.

I was diagnosed with IC about a 1 1/2 years ago, but I also experience recurrent UTIs. I was on Elmiron (200 mg 2x day), but I don't have prescription coverage right now. To further complicate matters, I don't meet the income requirements for free meds because hubby and I made too much last year, but aren't making that much now (and the Rx company requires a tax return). So, I have been off of Elmiron for about 6 months and I am really starting to feel that now. I kept two months worth in reserve just in case it got unbearable again --- which it has. I started taking 200 mg/day again yesterday. So, I guess my first question is does anyone have any experience with only 200mg/day?

I am also taking 50mg/day of Imipramine. I have been able to keep this up because it is affordable. I am also taking 100 mg of Trimethoprim after intercourse. I have also been able to keep this up.

Both my IC and UTIs manifest themselves as a constant burn accompanied by urgency and frequency. But, of course, they feel differently to me and I have only been to the doctor one time thinking I had a UTI and didn't. It was shortly thereafter that I was diagnosed with IC.

I have been doing pretty well with the UTIs. I recently had one (last month), but had not had one for about 10 months (a long time for me). I also think I know why I got this one.

Since reading this forum a few days ago, I have reconsidered some of my other practices. For instance, I have also been taking cranberry pills for years (something that it seems I should discontinue) and multivitamins (something else that it seems I should discontinue) . But, I guess my second question is, does anyone else have experience with IC and UTIs? And, if so, do you find that cranberry irritates IC more than it helps with UTI (I honestly don't know if it helps with the UTIs)? I'm just scared that the UTIs might flare up again too.

The other questions I have are:
What do you do about vitamins?

Does anyone have any experience with substituting meds for Elmiron? If so, what worked/didn't work for you?

Has anyone noticed an improvement with taking the Desert Harvest Aloe Vera along with Elmiron? How about without Elmiron?

Has anyone noticed an improvement with taking Cysto-Protek along with Elmiron? How about without Elmiron? How about with Desert Harvest Aloe Vera?

I seem to be finding conflicting opinions of Metamucil. I have been taking this for years. I have issues with constipation without it. Has anyone had IC flares with Metamucil? What about Heather's Tummy Fiber? Is that better?

On the subject of UTIs again, has anyone had any experience with or heard of Balneol Perianal Cleansing Lotion? I found it on Drugstore.com when looking at the Very Private body wash and lubricant. That reminds me, what about the Very Private body wash and lubricant. Any experiences with that?

I also have migraines and am considering starting to take Midrin for those. Any experiences with that? It's way less expensive than Imitrex. It has also been suggested that I take Topamax for migraines (not sure of price, haven't checked yet). Any experiences with that?

Thank you all in advance for any help you can provide. God bless you all!

Thanks,
Monique

[Michelle25]

:welcome:

Just wanted to say Hi and Welcome. I can't answer all of your questions, and most of them are just individual based. Meaning what works for some, doesn't work for others.

I think cranberries are good for the kidneys, and not necessarily good for the bladder - especially for IC, or UTI's.

I've tried the Instead Soft Cups. They were more of a mess than what they were worth. I had problems with them staying in, the blood would just end up pouring out of the cup (luckily I was a SAHM during this time, and didn't have the embarrassment of it at work.. ) Personally, I wouldn't recommend them.. but others seem to really like them.

Hopefully someone else will come around and can answer your other questions!

[SharonA]

Hello Monique and :welcome:to the ICN. I am so glad you found us and that we have already been helpful to you.

What do you do about vitamins?

There has been some talk about taking children's chewable vitamins. I have tried Wal Mart's brand but made the mistake of getting the ones with extra Vit C. For me, these gave me some bladder burn after a while, but I have a problem with citric acid. I have as yet to try one with a lower amount of Vit C. I keep forgetting about it when I am there.

But, I guess my second question is, does anyone else have experience with IC and UTIs?

I tend to get UTIs with sex so I also take a low dose antibiotic after.

And, if so, do you find that cranberry irritates IC more than it helps with UTI ?

Cranberry anything can be too acidic for many of us. I am able to eat a few dried cranberries in a salad without problems but pay attention to how many. I have not had cranberry juice since I first experienced IC symptoms so I have no idea if it would help with the infections. I have never taken the tablets.

I wish I could be more help to you. Hopefully, others will come by and answer more of your questions.

:):):)

[Library_Girl]

I was so hopeful that I would receive some great advice here . . . perhaps folks are just busy with the holidays.

Monique

[jen74]

I also was getting UTI's. I am allergic to most all antibitoics so what I do is, I make sure I take D'mannose every 4 hours every day, and I drink a herbal tea that has uva-ursi in it along with some other herbs. Most importantly though, I make sure I shower EVERY time I have a bowel movement. This is where the UTI's are coming from. It sucks to be a women because our anatomy is not is a good place( our anal area being so close to the vagina). You have to clean the anal area very well with a lot of soap after using the bathroom, as this is one of the biggest UTI culprits, or at least that is what they say as well as having intercourse. I also do not have sex anymore, I just cant take the chance of getting a UTI since I cannot take antibiotics. Also, be careful with taking antibiotics, even small doses as a preventative, you could become immune to them and they wont work anymore for you, or worse you could become allergic to them. That is what happened to me. My allergist said that if you take a antibiotic to frequently even in a low dose, your body will eventually build up antibodies to it and you will develop an allergy to that particular antibitoic.
Jen

[karen10]

Hi Monique,
I use the desert harvest aloe, and yes have found relief with that, mostly for the urgency and frequency, not so much the pain yet. I have also started cystoprotek and have heard many good things about it, but haven't been on it long enough to say whether it's making a difference or not. But from all that I've read, cystoprotek success rates have been higher than Elmiron. However, they don't have a side by side comparison, so it's hard to tell. For pain, just doing the bladder instillations is helping me (1-2x a week). I have also read (including in Jill's story) that cranberry is typically a no-no for IC'ers, and I would assume this is true for the pill form as well. I don't remember how cranberry is helpful for UTI's, but maybe there is another similar supplement you can use that is safe (for eg if it's the bioflavnoids, then you can use quercetin instead). I have used Heather's tummy fiber, and it's excellent, no problems. She also recommends, and I use this now, Benefiber. But I imagine if you have a wheat allergy, it could always be a problem. That's as many questions I can answer! I wish you well! :smile tee

[Claredale]

First of all, I am glad that you found us. I dealt with IC a long time and mainly got most of my info from ICA for many years and was fortunate to have great doctors, but I was so excited when I found this site. It is nice to actually talk and get advice from my friends on here. I have taken several treatment ideas to my doctor that I have printed off from this site.

I have only had one UTI in the almost 20 years of IC, so I won't be any help in your questions regarding UTIs. I mainly use sensitive soaps since I also have Eczema, but the times I have used scented body gels, I haven't had any issues either. I have only taken antibiotics after various IC treatments and surgeries. Elmiron didn't work for me at all. After several different treatmeents and med combos and I had the interstim in 2002, I am living a pretty normal life. I still have issues with pain, but nothing like before my interstim. The interstim decreased my freq/urg from every 15 to 20 minutes to about every hour which in turn took alot of irritation off my bladder which luckily in turn decreased my pain level. Now I can go several hours without needing to find a bathroom.

Regarding the cranberry pills. I am not diet sensitive. Citrus bothers me, but from time to time I do indulge in a tangerine, but if I had cranberry in any shape or form, I would feel pain almost immediately. I have tried children's vitamins at times and did okay, but my doctor said that if I eat healthy enough that I really don't need vitamins. I do take iron everyday since I am anemic and take Fish Oil, Zinc, Magnesium and Flaxseed Oil capsules to help with the side effect of hairloss due to Elmiron. I recently tried Ester C just because I thought it might help with cold season coming on, but after a couple of days, I was having spasms, so I stopped using it.

I hope I helped with some of your questions.

Tracey

[Library_Girl]

Thanks, ladies!