Need Pain Treatment Advice

[newicer]

Hi,
I just went thru a terrible bout of IC pain maybe caused by a UTI - still waiting to find out for sure....the pain was so horrible I literally thought I was going to die. I mean I think it's the worst pain I've felt since being diagnosed in Oct. 2006. So I wanted to ask about pain and treatment. My only current treatment plan is Elavil 20mgs. at night and weekly home Elmiron instillations. I seem to last 7 -8 days on the average before I "feel" I need to do another installation. I follow a pretty good diet...watching everything I eat to make sure it is IC friendly. I also take prelief before each meal just in case.

My question is I have been doing weekly Elmiron home installations since April. I have good days and bad. I think I've improved, but is improvement supposed to be no pain and only doing installations when necessary or am I facing a lifetime of once a week installations. I have brought this question up to my Dr. before and he says....well, let's wait and see how you do. I don't have frequency or urgency like I do chronic pain. Should I talk to my Dr. about a new treatment plan. He hasn't mentioned hydrodistention? whatever that is....just let's see how you do.

After feeling so sick recently it has really thrown me off. Thought I could manage this condition, but truthfully, working makes me so tired and I feel like I've lost a huge part of my life.

Any advice would be very much appreciate.

Thank you.

Joanne

[mlasorsa]

Joanne,
I am so sorry to hear that you are not feeling well. It is good that you are being checked for a urine infection.
I do the home bladder installation treatments daily (since having the cysto with hydrodistension done in March) with Elmiron, cytotech, sodium bicarbonate and lidocaine. The treatments have been a life saver! Originally ordered twice daily installations and also by mouth once a day (the Elmiron and cytotech). I just couldn't handle all of it and chose, without the doctors o.k. (I don't recommend anyone change their doctors orders without talking to them first!) to change it to once daily treatments. I hold the medication 1 hour(which is the time the original script ordered!) , void, and then sit for 1 hour after voiding. I have only had 2 short flares since starting the treatments.
You may get enough relief from the 6 weekly treatments with the Elmiron. We all respond different. Just be honest with the MD and try your best to stay on the IC diet. It will also help.
Having IC is very hard to deal with. Staying positive and take information to your doctor (they are also new to this!) It is a good way to handle the struggles. I am always looking for new things and this site is the best resource for IC!
Anyway, wanted to say "Hi". Best of luck to you!! Stay strong!! Mary

[dverba]

i take hydrocodone 10-325 5 aday, hydroxyzine hcl 25 mg 2 at bed, lyrica 75mg three times dail.
that all keeps me functioning but never symptom free. for some people the problems that come with ic can take years so resolve. trial and error is what my dr says.

[SharonA]

From what you said in your post about the Elmiron instills, it really hasn't been that long since you began using them. I know that if you take it orally, it can take from 6 to 12 months to feel the full effect of the med. I don't do instills, so I don't really know how long it is for the instills. It sounds like your doctor seems to think it will take longer than it has been since you began.

This is a quote taken from http://www.ic-network.com/treatments/ under the "Bladder Instillations" section. You can also find information about Elmiron and other instills there.


Hydrodistention

Because some patients noted an improvement in symptoms after the bladder distention done to diagnose IC, the procedure is often thought of as a treatment in itself. Bladder distention involves filling the bladder with water (while the patient is under general anesthesia) and letting it expand to a degree that is too painful to achieve while the patient is awake. Researchers are not sure why distention helps, but some believe that the procedure may increase bladder capacity and interfere with the pain signals transmitted by nerves in the bladder.

La Rock et al. (4) report that 20% of patients experience short term symptomatic relief of three months or less. Almost all IC patients experience a significant, temporary worsening of pain, urgency and frequency for a few days after the distention. Your doctor can prescribe pain medication to help you through this. After the post-distention pain wears off, some patients find their symptoms gradually return to pre-distention levels but experience no real improvement. For others, the symptoms continue to improve and stabilize at a more comfortable level than pre-distention.

The degree of improvement and length of time this improvement lasts can vary widely among individuals-- days to months. It is also impossible to predict who will and who will not respond. Because this involves the risks of general anesthesia, the merits and drawbacks should be carefully evaluated and discussed with your doctor.



It might be helpful for you to read the Patient Handbook. There is a lot of information included in it. You can find the link in my signature below. :)

[newicer]

I just wanted to say thanks to those of you who replied. Your advice, support and information is what helps me to keep going.

Thanks again!

Joanne