In emergency Friday night and doc said IC should be treated by antibotics

[lotsofgirls]

Hi all,

Long story but ended up in emerg Friday night. The emerg doc was fairly up to speed on IC, but believed that IC is confirmed by biopsy and needs long term antibiotic therapy. I just smiled and said, well, I am under the care of a urologist, I'll mention it to him.

Any thoughts?

Cath

[vm]

Um, just that he needs to study IC a bit more. lmao

I hope you are feeling OK now. Are you better than you were Friday night? kissing

[dyno]

Cath,
I hope you are feeling better too! Kim said it all and I totally agree!!!

Jolene

[YankeeCandle224]

I'm so sorry you had to go to the ER. I know how that feels lately.

What sent you there to begin with? And, how are you feeling now?

My ER docs were more worried about my Crohns then the stones or the IC, and of course had to check me for fistulas, by hand, and if you dont know what that means I'll spare you the details, but I couldnt sit for days.

ER docs know a little about a lot, and they like it that way, but, unfortunately for us, the patients, they often havent got a clue what to do for us til they talk to our docs on the phone.

Good luck and I'm glad you got to come home.

Sandy

[auntiedebbief]

I am on antibotic proactively to prevent utis and they d on't always help but this time it took several days for the flare and uti to go away. I think Kim said it right too. He needs to study more on ic. Hope you feel better soon.

[Jen_Cole]

My urologist also has put me on bactrim to prevent uti's. Long term.

[tillysav]

My Uro has me on an anti-biotic (Levaquin low dose) every three days to keep me from getting a UTI. So far, so good. I'm UTI free 4 months now :D .

[Dixiefireball]

so sorry you ended up in the er but it is nice to know someone at the hosp understand ic a little bit.
I was once on anti. for long trem use but the only thing my body did was found away around it and built up a nother type of bat. in my bladder. ggggggggrrrrrrrrrrrrrrr.
I agree with vm he needs to learn a bit more about ic.
I know that anti can help some people that gets alot of uti like i do but its not for all. grouphug

[lotsofgirls]

Thanks for all your replies. I haven't had any UTIs in ages, so I don't think antibiotics would be warranted. I had a DMSO and then went into retention and needed a foley for the weekend. UGh!

However, I am feeling alot better now, and I am going to take a break from the dmso for a few weeks.

Cath

[SheriG]

Well, one good thing did come out of your trip to the ER....The doc was at least smart enough not to tell you to start guzzling cranberry juice!! scream Hope you are feeling tons better, please keep us posted grouphug

[tigger_gal]

sorry you were in er :( hugs hope you feel better i was on 3 months of macrobid for utis :( and all i got out of it was a nasty yeast infection from hell..... any way think maybe he needs to look a little deeper into ic and he will discover that longterm anti wont help IC..
hugs brat

[mayray518]

Sounds like doc in the ER was referring to ordinary UTIs.

[rachelm]

E.R. Dr. think they know it all but in reality they are quite ignorant obout I.C. and its treatments. I had to go to the E.R. Sun. because my spasms and pain were so bad that my morphine wasn't helping. I do get UTI s frequently and I was sure that I had one. I told the dr. that I had I.C. but that in addition I felt that I had an infection which was increasing the pain. He was very patronizing and asked my "who told you you had that?" I explained that my urogyno from that hospital diagnosed me and is currently treating me for a bad flare with daily heparin/marcaine bladder instils. He seemed quite puzzled like I was a quack making it up. End result he told me I had an inf. but it was nothing that a simple antibiodic wouldn't fix. I asked about my urinalysis and I wanted to know if my lucycites or nitrites were elevated. He said yes but the main prob. was that I had huge amounts of blood. I explained that that's always there and he nodded and said oh o.k. as if I were a child. Anyway I had to beg him to call my uro and to give my a shot of morphine or something stronger than my oral pain meds. and I finally convinced him to give me a B&O suppositories. I told the nurse to explain to him that I had an infection on top of a bleeding cracked bladder. It's as if he had never heard of I.C. or the pain that comes with it. Ugh... I always take someone with me who can rationally stand up for me and insist on treatment for the pain. My fiance was able to explain that we have been dealing with this flare for 3 weeks and that I was on med. leave from work and seeing my dr. every day. The only reason I came to the E.R. was to get something more than what I had in order to get through the night until I could get back to my dr. What were you in the E.R. for? I wish that I had remembered my I.C treatment notebook. I keep my medical history as well as med. journal articles on I.C. Maybe someday more G.p and E.R dr. will be more educated about this disease. Until then we will continue educating our med. providers.

[Mimi-in-Chicagoland]

I'm not really sure what ER doctors are good for, other than trauma. Sorry that you had to go through that, lotsofgirls and rachel. I had a TIA and a stroke and the ER doctor kept saying it was my migraine medicine. I couldn't walk, my hand wouldn't work and I couldn't remember my phone number or address. Oh, yes, its my migraine medicine! These doctors kill me! I think that you should have a number to call in case you wind up in the ER...then you can get the meds you need and the doctor will be told what you need.

[lotsofgirls]

Every time I have to go to the ER I have anxiety about what kind of doctor I am going to see. One time I actually had a doctor who knew what he was doing, and he was teaching other students. Outside my curtain I heard him explain IC (properly!) and tell the students that when these patients come in they are in serious pain, treat the pain so that they are comfortable. Of course that was only once, but it did give me hope!
Cath

[rachelm]

Wow, you were fortunate that time around. I only had one nurse that had a clue about I.C. when I was inpatient for my I.C.pain and dehydration. For 4 days I kept my cell phone close to me and would call my dr. office nurse when I needed an order for something new becuase otherwise it would take 2 days. A tech had the nerve to tell me that she knew it was hard not to get what I want after I complained about my speghetti dinner and chocolate pudding. I had already discussed my diet for 20 min. with a dietician and we were dealing with a very weak stomach and my I.C. From now on I keep information for dr. and nurses with me in case I need to educate them. You have to be proactive and demand to get treatment for the pain. I hope you are feeling better!

[lotsofgirls]

Hi Rachelm,
Yes, my retention has passed so I am back to my normal IC state eek . The same hosptial does DMSO out of day med and all the nurses there are trained on IC. It is such a relief to have medical care where they talk our language. I hate emerg visits because you never know what to expect. I am hoping my pain clinic will do a plan and send it to emerg so I don't have to sing and dance to get the emerg doctors to understand IC and its problems!!! lmao I had that one good doc, but there are some there that are out to lunch!! banghead banghead

Cath

[Joyaur]

Each time I have gone to the ER for a regular bladder infection ,Doctors have given me antibotics. All it did was make the IC worse. At least for me it did for me..
what can I take for a regular bladder infection now??

[MakinIT]

I know there is a movement in treating IC that has your urine cultured way beyond the normal culture and then they recommend various Antibiotic treatments based on those culture results. May have been a bit of a piece of info that doctor had but not complete enough and the studies haven't really shown this, as far as I've seen. I don't know for sure or checked it out lately.

Toodles.....

Tracey

[kelly McC]

It is so sad that our ER doctors and nurses are not educated about IC. I went to the hospital this Monday and the ER doctor said he knew little about it and the only thing he did know was its painful and uncurable. He tried to give me several pain meds all I had to say NO I am allergic to them. My husband finally yelled at the nurse and said why aren't you giving her what shes asking for. She knows what she can have. She came back within 5 minutes with my pain shot. She said the doctor did not know what to give me cause he didnot how to treat it ? He came back and later and said he wanted to help but didnot know how and said find a good specialist to help you. He said unfornately I think well see alot more of you (I was like I hope not ):( I had to go to three doctors and this same hospital to get urised!!! They never heard of it???? I was like is this a bad joke... But finally my OBGYN looked it up and said you are correct and wrote me the script. :banghead: hopefully someday they will all be educated and I hope find a cure !!(I PRAY)

[MakinIT]

This is why I refuse to go the ER even though I contemplated it on very painful nights. I've found myself educating many medical people and have taken to printing out journal pages, written by docs and lay people, to take with me to help explain. Especially the pain part because that is what really is the most important to me when I am in crisis.

Tracey

[ljl765]

I found out accidentally that antibiotics made my IC feel better, years ago...and was involved in an antibiotic study..and so my Uro gave me Erythromycine (sp?) 500mg 2 times a day, but I got a rash, after several months.... She then changed me to 500mg of Tetracycine 2 times a day, and now I see the same thing has started to happen. and they stopped working. I have never has a single UTI in my life. The other Uro, in her office says this is "excessive" but has not questioned her partner..neither did I.. but I trust my Uro and it did seem to help symptoms for a long while, but in the end I get a rash after a few months on all these antibiotics..anyone know of some that help the IC, that don't give one a rash after a few months and stop working? Thanks

[Katrina]

I am on constant antibiotic therapy....to keep them working you need to alternate between more than one and another. Rash is usually an allergic reaction and I can't predict what you would be allergic to. For different reasons I am alternating between Cipro and Flagyl. I have never heard of anyone else using Flagyl for the bladder so it probably isn't your best choice. None the less I have taken theese forever it seems and no rash.

I know there have been posts in the pass about what antibiotic treatment people are on....maybe a search will help you get your answer.

Good luck.
Best Wishes,

[MakinIT]

I'm glad I don't get UTI's although my hubby and were intimate (after a year) last week and I'm flaring like crazy. I prob. gave myself one...errr..he gave me one:D I see the pain clinic doc tomorrow so I will ask if I can checked for a UTI. I see my uro in a week. For those of you with recurrent UTI's on top of IC I can't blame you for always being on anti-biotics. I'm allergic to nearly everything so it's tough when I need one.

Tracey

[yvette]

Dr. Fuzzy has been a long time name when it comes to "Long Term Anitibiotic Therapy for Interstitial Cystitis". He may even be mentioned here somewhere on this website, he has been for a long time at some point.

Anyways, some people have tried it with great results and others with disastrous results. I looked into it and decided it wasn't for me. But that's not to say it couldn't work for someone else with their case of IC. So your ER doc wasn't completely off the mark with his suggestion.

[ljl765]

I just wanted to be clear, I have never had a UTI in my entire life. The antibiotics are for treating the IC.. I had noticed once with a sore throat.. that on them the IC felt better, mentioned this to my URO..and then did the Antibiotic study..using many antibiotics, except Penicilin (allergic).. but never took them for UTI.. The rashes appear after many months of use, with the same one, and no one has given me (MD's) any reason why this occurs. I get terrible red, raw skin rashes, that bleed at times and are hard to heal, itch like crazy until I stop taking them..... after months on the same one, and they stop working after a few months..I then stop taking them for a while until I see her and get another one..and hope for the best. Initially they work great at helping IC pain and flares!! Thanks ljl

[Katrina]

I understood you.....antibiotic long term therapy are used to treat other things than infections. It comes with problems.....luckily rash wasn't one of mine.....but I can always tell when the antibiotic isn't working well anymore. That is why we alternate.

Feel free to contact me if you want to discuss this anymore.