I wish all doctors knew about IC

[Mel53H]

Last weekend I had what I thought was a UTI. I went to Urgent Care at the hospital and of course peed in a cup. Well, since I had already had taken some AZO, they couldn't really test for sure if it was a UTI. The doctor gave me some antibiotics anyway and some pyridium. Well, the next day I was hurting so bad that the pyridium did not even help. I used heat, I used ice, I useed everything to get some releif. I finally ended up taking 2 Vicodin. Well, those did not even help either. I was desperate, so I called the medics. I know that sounds harsh, but I was going nuts!! I felt like my bladder was coming out of me!! The medics took me to the ER.

The ER doctor looked at me like I was a big baby. I told everyone that would listen that I had IC and needed some pain relief. The doctor told me that it takes a few days for the antibiotics to work. DUHHHHH! I told her that I knew that and have had several UTI's and IC. She(the doctor) acted like she did not know what I was talking about. Finally, she gave me some Percoset and sent me home with a prescription for it and a small bottle with about 5 tablets in it. It was about 2:30 AM when I left the ER , so that is why she gave me the small bottle of percoset.

I wish there was a card or something that says, "I have Interstial cystitis and if I am brought into the ER to please give whatever pain releif I need". Sort of like the bathroom card that is sold here. Your own doctor could sign it and the ER could call the doctor on the card with instructions.

These damn ER doctors don't have a clue about IC and they should have a clue. It infuriates me!! They look at you like your nuts!

Thanks for listening or reading. I needed to vent.

Mel

[ihurttoo]

I hate it you had to go thru all of that, (the pain and having to deal with ER Drs.!) I know what ya mean, they dont have a clue around here either! I did finally suceed in getting my Dr. to leave standing instructions at the hopsital for me when I am in a bad flare. Unfortunately, it isnt for decent pain meds, but it was for a rescue instill before I was able to do them for myself at home. Fortunately, that usually worked for me, but I dont know if he told them what to give me if I didnt or not.

I totally agree that ER Drs need to learn how to recognize IC and treat a bad flare effectively.

I am so sorry you were treated so callously. That is the thing that makes me the maddest of all. I mean it takes no more time to speak to a patient kindly than it does to speak rudely, and why would anyone want to be nasty to someone who is suffering?

Anyway, I am sorry you had to go thru all that. But, I hope that this flare calms down soon and that if it is an infection, that the antibiotics will kick in soon too.

Sending hugs,
Amy

[ICNDonna]

I hope you feel better very soon.

Donna

[kari1980]

I was wondering, Is there maybe some kind of standard letter that someone could type up regarding IC and what it is and how it affects us and then we could all copy and print it and each of us send it to our nearby ER's? I don't know if it's possible to do this, but I would be on board to do it. I've never gone to the ER yet, but I hate to think if I ever have to that they are going to treat me this way! It's so unfair. Let me know what you think.

Kari

[Mel53H]

Kari,

I was thinking along those lines as well. There has to be someway for the medical profession, especially ER doctors, to be at least aware of the condition. I do not like to be treated like I am a hypochondriac or even a cry baby. I want to be treated just like any other patient that has something wrong with them.

[ihurttoo]

I was wondering, Is there maybe some kind of standard letter that someone could type up regarding IC and what it is and how it affects us and then we could all copy and print it and each of us send it to our nearby ER's? I don't know if it's possible to do this, but I would be on board to do it. I've never gone to the ER yet, but I hate to think if I ever have to that they are going to treat me this way! It's so unfair. Let me know what you think.

Kari

I actually found a great article about IC on the Urology Today site last nite. It talks about it and then under "Treatments" it has all the usual stuff and then says that when we are in a flare that strong narcotics are warrented and if we are already on them, that stronger doseages need to be adminsitered during our flares. I would post the link here, but I am not a very good "linker". But, there are also lots of great articles, lectures, and transcripts on the main page of the ICN that might work.

Just thinking out loud here, but maybe if we sent something attention getting along with the letter like Minute Rice, Instant Potatoes, instant pudding, instant glue, pkgs of Instant soup, Instant oatmeal etc. and a few other inexpensive products that have the words "minute" or "instant" on them, and then say something long the lines of, "Perhaps by using these products you will find a few minutes to read the newest information about the pain caused by Interstitial Cystitis."

I dont know...it is probobly corny, but I was just thinking that it might make the letters (or information packets) stand out. I was also thinking that a gift basket with that stuff in it would be big, and a definate attn getter and a conversation starter. I mean, everyone that walked past it would want to know why someone would send someone that stuff!

Or maybe we could get a graphic designer to design a photo of a rat that has chewed out it's bladder to attach to the story that Dr. Brookoff wrote about the rat they injected with something to give it IC. The rat proceeded to try to chew out it's own bladder. Then, maybe we could say something like "Was your patient the rat in pain today, or were you the rat that wouldnt treat the pain?"

Whatever it is, we need to keep our target in mind and that due to the nature of their jobs (and personalities), they like things succinct. (That rules me out for writing anything! LOL!) If we want them to read it, it needs to be concise and direct. If we want to give them detailed info, I think it needs to be separate from the cover letter, and that the cover letter needs to contain the key points we want to get across...IC is a painful condition that can be as painful as anything else they see in the course of a day and it deserves the same treatment....pain meds.

Another thought, under all the Regions there are of the boards here, we could do a state by state list of the ERs and have people in each city volunteer to send (or deliver) the letter and/or information packets to their local ERs. Then, have them post when it was completed. That way, if someone hasnt covered an ER yet, it would be easy to identify it and someone else could get that one.

It would also be great to get a count from Human Resources at each hospital to find out the number of Drs. and nurses ahead of time so that each one gets a copy/packet. I mean it wouldnt do much good to just the unit secretary open the letter and toss it in the garbage! And though it might help even if one Dr. or nurse read it, it would be a whole lot better for all of them to read it. After all, I doubt that even if one read it, he/she would take the time (in a busy ER) to educate the other staff members about what he/she just read. Nor do I think they would take the time to make the copies and distribute them. That's why I think Human Resources (or the Administrator, or whoever) needs to be involved so that we can get the contact names and send the correspondance addressed personally to each individual.

Maybe the patient advocate at the local hopsital would be a good contact person who could put us in touch with the correct people to help.

Also, we need to contact whoever is in charge of coordinating the continuing education classes at the hosptials and send a pack to that person, stressing how IC is freq misdiagnosed and how pain meds are appropriate for IC flares.

I am sure that with as many members as we have here, someone can think of something better. But, you are right...we definately need to move on this. Far too many of us have had similar ER experiances. We need to have the ER educated before we arrive in pain!

[LeeAnn]

http://www.ichelp.org/painissues/ICAndPainPartOne.html

There is a great article on the ichelp.org site. I don't know if the above lind will work but go to ichelp.org, then to "pain issues", then to "IC and Pain: Part One in a Four Part Series."

It explains how terrible IC feels and discusses pain tx options such as percocet, vicodin, morphine, etc. This might be a good article to print off and take with you.

I feel your frustration! A couple years ago I had angioplasty (where they thread this thing up an artery starting in your groin and they put a stint into an artery near my kidney). And I was only 26 at the time! Lol. Anyway, when I went into the hospital I knew I would have to lay in a bed completely flat for 6 hours so I wouldn't bleed out. I had a LOT of anxiety about not having the freedom to jump up and go potty. So when I went to the PACU (post anesthesia care unit) I told the RN, look I have this thing called IC it causes a lot of bladder pain and sometimes I gotta go every 15 minutes, I know you're busy....but please help me.

I was SO MAD b/c she totally ignored me and treated me like I was a big baby.

Luckily for me my husband is an RN at the same hospital but he works in the ICU. I called him from my bed and he came down immediately and helped me with the bed pan so I could go.

If something like this happened today I would just pee the bed. There is no reason I should have to suffer like that. I know that sounds gross but I'd rather do that than lay there in agony.

But in the future I am going to walk in armed with information and if they ignore me I'll probably be more assertive than I was the last time.

[kari1980]

You have some great ideas Amy, I love the rat idea! I'm sure between all of us putting our heads together we can come up with something to try and help solve this problem. I agree with you that we should reach out to the individual doctors rather then just send the letter to the ER hoping that it gets to the appropriate people. I don't know who is in "charge" of the ICN and these boards but maybe they could give us their input on how to handle this?
Thanks,
Kari

[littlemyrn]

I think printing that post by Dr. Brookoff regarding the pain, and taking it with you is a great idea. I don't know if they would listen or even read, but it is worth a try. I know I was in a terrible flare last week and I thought about going to er to get something for pain in an iv, but, after reading so many post able the drs. in er, I thought why???That is a shame that we are reduced to suffer because the doctors are not taught enough about IC. I am thinking of contact the Chief of Staff at our local hospital, which I believe is a URO, to discuss with him about educating the ER doctors on IC. Printing out the ichelp.org pain info, and such. Maybe if all of us would do that at the local area, that would help. Being logical, not a pain day, and being an educated patient, maybe they would listen. I know my URO in nashville has 200 IC patients, and someone from her office is always on call, but she is the IC person, so who knows what I would get if she wasn't the one on call, plus her hospital is 35 min. away, and my local er is 10 min. ?????We are smart and I know we can all put our heads together to make a stand.

[kari1980]

I agree with you Leann, we have to start becoming more assertive about our care and needs. I know when your younger it's much harder being assertive and your embarrassed, that's how I always felt, but now that I'm older I have no qualms about being assertive. I finally realize now that no one is going to care more about me then ME, and that I have to be my own advocate and sometimes that's really hard but we have no choice.

LIttlemyrn, I think that's a good idea going to your local hospital and speaking to the Chief of Staff. I would commend you for doing that. I don't feel confident enough yet to tackle that one on one, but would definitely be on board to sending information to the ER if we could come up with a good plan of action, you know? We definitely have lots of really intelligent people on these boards and I'm sure somehow we could come up with a great plan. I don't know what that is exactly, but would definitely be willing to help out anyway I can. I would love to get the word out to these hospitals and doctors, especially about being more compassionate towards us. I'm going to make an appt with my doctor and bring him the article Leann linked me to about pain management, because last time I called him for pain meds he didn't give it to me, and see how that goes. Maybe if it goes well it will give me more confidence to tackle the ER doctors!! Thanks for everyone's input here.

Wishing all of you a pain free day.

Kari- OH and Happy Easter!!

[jen74]

I am sorry you has to deal with that experience. I will NEVER go to the ER unless I am dying. They are only good for life threatening emergencies it seems. You have to remember, the ER docs are usually only interns you see. They will usually have one head doctor on the floor in the ER that all the interns go to if they need help.

Also, I find it better if you have someone with you like your husband or a family member. For some odd reason, then you are treated more decent and not like a hypochondriac. It is sad, but a true fact that women are usually always treated like lunatics when we complain of pain. The reason is, lets face it, men dont usually experience half the pain that we do in life( meaning they have never given birth or went through labor), so the normal healthy guy has no clue as to what real pain is, other than the minor things. Also, it is a known fact that women will tolerate alot more pain before running for help, and maybe this is because we have a higher tolerance for pain as it is.
If you are lucky and get a women doctor on call in the ER, sometimes it is better, but not always. I really think it should be made a reqiurement that all doctors have to have a good bedside manner as this is a very important part of being a good doctor. Also, if you go to the ER and the doctor does not have a clue on what IC is, then he or she needs to get on the computer and look it up.
Again, I am sorry you went through all that. I hope you are feeling better.
Jen

[kadi]

This is a really frustrating issue. One time I was at my local urologist's office for an instillation & he came in with tears in his eyes, apologizing for my long wait. I asked him what was wrong & he told me that he'd been on the phone, trying to advocate for his patient who had IC & was in the ER & that the ER doctor wouldn't listen to HIM.

[ihurttoo]

This is a really frustrating issue. One time I was at my local urologist's office for an instillation & he came in with tears in his eyes, apologizing for my long wait. I asked him what was wrong & he told me that he'd been on the phone, trying to advocate for his patient who had IC & was in the ER & that the ER doctor wouldn't listen to HIM.

That is a horrifying thought! I mean, if they wont listen to another Dr, (a URO at that!), then who would get their attn?!! But, it is comforting to know that at least one Uro out there gets it.

[kari1980]

Gosh Kadi, that's a really scarey thought that if the ER doctor wouldn't even listen to another Dr., aUro at that, then what chance do we have getting them to listen!! Well we still can't give up, we have to find a way...

Kari

[lnseagraves]

IC name change

Sometimes when hear of these horror stories I wonder if it WOULD be better to officially call IC "Painful bladder syndrome" or something. In my experience, doctors sometimes just hear the word "cystitis" and seem to ignore the "interstitial" and then treat me like an overreacting UTI patient when thats not at all when I'm referring to. Lately, I've started saying "painful bladder syndrome" instead and I've gotten a lot more sympathetic looks etc. than I ever did saying "interstitial cystitis".... just a thought.