can someone please help me?

[marrgot]

I am new to this site. I spent the afternoon reading many of your letters and my heart goes out to all of you because I too am suffering with IC> The pain is controlling my life. Without getting too lenghthy I have also had years of abdominal surgeries/;lapaproscopies/kidney stone/hernia/etc..ending in scar tissue and now the newest diag.IC. What the ......are these dr's doing to us? Is anyone else out there at their wits end with the medical professionals? And what about this elmiron? I've been on it for 7 months, no relief, and amitryptaline 25 mgs, because 50 caused inflammation in my feet, etc..can't sleep, hard time just getting thru the day. Thank G-D my general prac. has given my oxycontin for the pain, and now I'm afraid Ill become addicted to pain meds. What's weird is that urologist doens't want to try any of the distillations, or flushings etc...any advice from anyone what step I should take next? Thanks for listening to me.
Marrgot

[dbdab]

Hi Marrgot,
:welcome: I am definetely starting to feel like I'm on an endless merry go round of doctors forever. I have been in and out of the doctor so much since april of 2004 when I was diagnosed with IC that I panic anytime some other ailment strikes and I have to go to yet another doctor and possibly take more medications. I do feel that Elmiron has helped me somewhat (I've been on it for about 9 months), but I worry about taking all these medications and what they are doing to me physically and emotionally while I get my IC under control. I don't want a life sentence of taking medications every day for the rest of my life and I get very depressed when it seems like that's my only option. My urologist has tried many treatments with me and I've had minor improvement. I too have trouble just getting through the day. I think the lack of restorative sleep is so bad. I need a sleeping pill, an antihistamine and some nights Pyridium just to get 4-5 hours of non-consecutive sleep. I gave up amitryptaline as well because I was gaining weight so fast that I was buying new clothes every 2 months. If I were you, I would find a new urologist, who's willing to try other treatments because everyone is different and what doesn't work for someone else just might work for you, so I think it's worth to try everything you can. Sorry to go on and on, but just thought it would help to know that you're not alone in how you frustrated you feel.

[SusieQ045]

i to just wanted to say :welcome:
i think that anyone that has had an IC flare or even has Ic at all knows how you feel. i took so many different med's for different things its unreal. but dont let it get you down. sometimes we need to take medication to make us feel better or even to feel a little bit "normal". i just like most people here have seen so many doctors that are quacks or just have no idea what they are talking about. its normal to be frustrated and feel like this is a life sentence. but it isnt. granted i to feel that way but you have found the best place on the web with people to talk to that know how you feel and are always there when you need to talk. sorry to ramble.

[karen10300]

I think maybe you need to find a new doctor who knows more about IC and is willing to try other treatments. Many of us have done the doctor search to find a doctor who has knowledge of IC and will work with us to find a treatment that may help us. As for the pain meds., be thankful that you have a doctor who will prescribe you medicine for your pain because there are many IC'ers whose doctors won't. My uro wouldn't prescribe any pain meds. for me and I ended up having to go to a pain management clinic to get some relief from my IC pain. They say if your body really needs the pain meds that you don't become addicted. In time you may build up a tolerance to whatever pain meds you take and they may not work as well over time and you may need to switch to a different pain med or have to increase your dosage. When I first got my pain meds. I was having to take them every 4 hrs. as prescribed. Now that my IC has settled down quite a bit, there are actually days when I don't take any pain meds.. So it is important to find a doctor who will try and find a treatment that will help your IC.

[Sarojini]

I think we all get sick of doctors!! :grouphug: Many of us have different ailments other than IC, so it seems we are always bouncing from one appointment to another.

However, the others are right. You may want to try and find another doctor who specializes in, or at least knows more about, IC treatment. That way, your treatment options won't be so limited.

Elmiron is a good drug, but may not work for everyone -- they generally say that it takes 3-6 months to begin working and up to a year to give full benefit, but if you feel it is not helping you, then perhaps it's time to pursue other avenues with your new doctor when you find one.

As for the pain medication question, please don't think of yourself as an addict. At this point in your disease, you need these medications to help you function -- you are not using them to escape real life. While you may become physically dependent on the OxyContin, it doesn't mean you are an addict. After all, a diabetic takes insulin to help function, and you wouldn't say that he/she is addicted to it! Your doctor will help you come off the medication when you and he/she feel that it's time, -- for example, if you find instillation therapy works for you -- so you should be okay. :grouphug:

[ICNDonna]

:welcome: to the IC Network. I don't have a lot to add other than to encourage you to see another urologist for a second opinion. And if you haven't found the Patient Handbook, the link is at the top of this page. I do think it would be a good idea for you to read the information there --- you will be far better informed. And I also think the diet is a good idea. That's something you can begin immediately and it does help most of us.

Warm healing thoughts,
Donna