New member & hopeful to meet friends!

[Kortney]

Hello All,
I am a new member to ICN as of today. I was so relieved to read some of the threads. Reading about other's who are experiencing the same symptoms I am makes me feel like I am not alone in my battle with I.C. I am a 24yr old fire sprinkler engineer. My Fiance proposed to me on Christmas 2009, we are planning our wedding for Oct. 2011. This should be the most happiest time of my life with my career and personal life going so well. However, it is a time of flare ups, frustration, depression, sleepless nights, and constant un-bearable pain. I don't leave the house much at all, except for to go to work of course. Sometimes even sitting at work for 8 hours can be unbearable. I feel like everyone thinks all I do is complain about my pain, and that I'm weak. They do not understand what kind of a battle I am fighting. I'm lucky to have my Fiance and my Mother they have been very supportive. I was diagnosed about 1 year ago with I.C. & IBS, but have been a sufferer for as long as I can remember. Doctors treated me for ORB, I knew something else was wrong. I kept seeing doctor after doctor, finally was referred to a specialist. I'm now on my 2nd Urologist whom diagnosed me with I.C. after doing a microscopy cystoscopy. Current treatment is: Elmiron 100mg, Detrol LA 4mg, Nortriptyline 50mg, Lorazepam 1mg, Colace, & Percocet (low dose). I have an appt. tomorrow with urologist to discuss further treatment options. I am still having severe pain, my medications are not giving me any relief. Even with the pain meds, my I.C. pain overcomes the pain medication. He wants to talk about doing a bladder "cocktail". Has anyone gotten relief from this? Also, bladder distention (sp?)? I am very open to any medication suggestions to bring up at my appt. tomorrow. I'd like to hear what has worked for other's with I.C.
Thank you for listening!
Sincerely,
Kortney

[kuntrygurl78]

I dont have any med suggestions, but I do want to say hi and welcome!:welcome:

Have you tried the diet?

[sailawaygrl]

Hey Kortney and Welcome,

Sorry you had to join us, but you are in the right place.

I saw that you were asking about what is helping others. First, are you following the IC diet? If not that can be very helpful in getting your bladder to calm down. If you just keep eating and drinking the wrong foods the meds can't help. You can find the diet from the ICN homepage. Also, are you only taking 100 mg of Elmiron a day? The makers suggest that we take 300mg a day, and some, like myself even take 400mg daily. Not sure how long you have been taking it, but it can take as long as 6 months to a year to show improvements. Some see improvement in weeks though, so don't let the deter you. It took me a year or more to see results but I really do see them now. If the bladder cocktail is a rescue instill (containing things like marcaine, or lidocaine, and heparin and maybe sodium bicarb) they can be very helpful. Especially when you are in a lot of pain. Just be sure to ask for a small catheter and if possible a numbing solution for your urethra. If you are in pain at the time, it will most likely hurt when they insert the catheter but the meds will help to numb and coat your bladder to give it a chance to heal and you some relief for a period of time.

The only other things I can recommend are trying heat or ice on your stomach over your bladder or in between your legs at your crotch. When I first got IC, I would come home everyday and take one of those microwave heating tubes and lay on my side with that between my legs. That is the only position that gave me some bit of comfort. I kept telling them to put the microwave next to my bed to make it easier!! I do know the pain you are going through.

Maybe you could talk to your Dr about a different pain med if percocet isn't working for you. I took lortab and that took the edge off the pain for me. Everyone responds differently to meds, so what works for one may not work for another. Also many take elavil which is similar to nortriptyline, or maybe you just need a different dosage. You didn't say how long you had been taking these meds. Just be sure to give them time to work. Some people don't like to try more than one med at a time, so they can tell which one's are helping them. In the beginning for me, my attitude was give me whatever is going to help!!

I wish you the best. Do some research on this site about treatments (not just the discussion boards) and also look on the ICA website, it has a lot of great info too.

Sandra

[NancyB]

Hi Kortney and Welcome.

I read some of Lee Read's posts about her Treatment Regimen for IC Relief and thought you might want the information. Her original regimen was the following:

"... I instilled 8cc of 2% Lidocaine, 4cc Sterile water, 3cc Sodium Bicarbinate mixed with 1 Elmirion capsule. I did this 3 times a day for for 3 months then 2 times a day for 3 months then 1 once a day for 6 months total 1 year. I haven't taken anything since July and feel great. I had a real bad case of IC according to DR Parsons 50+ urinations a day, Hunners ulcers, lots of pain."

Dr. Parsons is a noted IC urologist at the University of California San Diego.

Hope this information is helpful to you.

NancyB:)

[Kortney]

Wow thank you so much to all of you for your encouraging words and informational suggestions for relief. To clarify I am taking 3 doses of Elmiron a day equaling 300 mg sorry about the confusion. I have been taking it for about A year now. For the first 3 months I threw up every time I took it. Now I no longer get sick, even if I don't get much relief from it I'm still afraid to stop taking it. Today I have an appt with my urologist to discuss my next treatment options, bladder instillation, distention, and/or physical therapy. Also changing my pain meds and anti-depressant. Thank you again for all your warm words of support, it is greatly appreciated and means more than you know to know that you all know how I am feeling!

[VickiB]

If you just keep eating and drinking the wrong foods the meds can't help.
What Sandra said here proved true in my case. I took Elmiron for two years (100mg 3X a day) and watched my diet at the same time. My symptoms quieted dramatically. But even after 2 years on this med, if I dared eat or drink the wrong thing I'd be back in a world of pain. Finally I gave up on the Elmiron after realizing diet is far more critical to my staying pain free.

Here's a link to the IC diet in case you want to try it:
http://www.ic-network.com/diet/2009icdietlist.pdf

I know what you mean, others seldom understand what a battle you're fighting with IC. It's one of those things that's difficult for people to imagine, made worse because we appear to be perfectly fine on the outside. You'll find lots of support at this site with the emotional aspects of dealing with IC!

:welcome: to the group!
Vicki

[Snowden1]

Nancy,
Do you still follow the diet strictly?

Some people are alos having good luck with the herprin, lidocaine, and sodium bicarb instil. Maybe some will post to let you (Kortney) know how they are doing.

[Kortney]

Yes, I am trying to follow the diet strictly. However, I'm coming to find out that my flare ups are more stress induced. I'm considering yoga to reduce stress and stretch out my tight pelvic muscles. Has anyone found yoga helpful?
Thank you for the ICA referral. I actually found them about 6 months ago, they have been very informative as well.
I start my instillations next week. Once a week for 6 weeks straight.
Here's my "bladder cocktail", i'm very nervous this will be my first instil. I'd really appreciate feedback. Last time I was catherderized I had a 3 week flare up. MISERABLE!!
*Bupivacaine
*Dimenthyl Sulfoxide
*Heparin (Porcine)
*Hydrocortisone
*Sodium Bicarb
NancyB & Snowden-Very similar to what you recommended?? Thank you for the info!
Vicki-Thank you for the link, some things on their as a "bad" food I had no idea! I will watch more closely! I'm glad to hear Elmiron helped you. Even more glad to hear that I.C. diet helped trimendously! It is good to know there may be a light at the end of my tunnel! :)
Thank you very much again for the warm welcome!
Glad to of met you all!