scared

[coco1234]

I have just been diagnosed with IC (Nov. 10 2005) and have been sent to a pain doc, he has me on duragesic and vicodin for breakthrough pain and I am scared to put the patch on, after reading the leaftlet it scared me to death, the pain is horrible though and im just wondering if anyone can tell me more about this patch Thanks

[ICLori]

I don't know from personal experience, but I have read accounts of other IC'ers who have been helped greatly by the patch. Sometimes the side effects turn out to be something they don't tolerate well, and they switch medications, but sometimes you get lucky and get the right pain medicine on the first try. It's true that you might have some icky side effects, especially at first, but what a wonderful thing to be free of pain!

Hope you feel better soon,
Blessings, Lori

[coco1234]

Thank you! I am feeling so alone and depressed right now its nice to know others are going through the same thing. My doc first had me on morphine and the side effects were bad so I will give this patch a try... somethings got to work! Thanks again!

[ICNDonna]

There are many treatment options for IC available. Not everyone with IC needs pain medications full time. Have you tried other options, such as the IC diet? Sometimes something as simple as the IC diet can make a huge difference. You'll find diet information in the Patient Handbook at http://www.ic-network.com/handbook

I hope you begin feeling better soon.

Donna

[coco1234]

My doctor hasnt told me anything about changing my diet, thank you so much, im willing to try anything and everything!! :)

[Janie Miranda]

coco,
has your doctor put you on any other oral medications like Elmiron, hydroxyzine, elavil? These drugs along with diet changes have helped a lot of people.

[SusieQ045]

i personally was on the patch....only one problem i was allergic to the adhesive. it helped the pain but it made me itch horribly, its like trading one problem for another. but everyone is different. good luck if you have any more questions feel free to contact me...ill try to help

[coco1234]

nope, the only meds he has put me on are narcotics, I think I need to do a lot more reasearch before I accept that I HAVE to be on these drugs, I kinda want that to be the last resort, but I am so hurting...I have this constant pain and get really bad flare ups...I know there has to be other things to try and Im willing to try everything!!! Thanks so much for all your support!

[traceann]

Hey coco1234 and :welcome: As Donna said the diet can be a HUGE help, I know when I was first diagnosed, it was my biggest tool in helping me get my bladder to calm down. It's rather boring and restrictive at first, but lessening the pain made it very worth it! ;) But, once you have gotten your bladder calmed down, you start adding more foods back in - it does get better. I found I could eat way more things than I thought I would be able to! What I did was a build a diet for myself soley out of the "usuall ok" list, and stuck to it as long as it took for my bladder to feel better - for me it was about 3-4 weeks. Then I started adding in things one at a time back into my diet, allowing about 2-3 days in between additions. If I had an increase in symptoms, it went on my no-no list to be retried at a later date, if it failed again - it went on permanent no-no list. ;)

Here's a link right to the IC Diet foods list:

http://www.ic-network.com/handbook/diet.html

Hope this helps a little!!

Hugs,
:)

[coco1234]

Thank you, im trying out the new diet and crossing my fingers!!!

[coco1234]

Been trying new diet and to my surprise it is helping a bit! Still havent put on the duragesic patch (still to scared) but am taking the vicodin 3-4 times a day. I am having such a hard time sleeping, it seems the minute I actually fall asleep im up again to the bathroom, does this ever get better???? I absolutely love this site, I have read so much that helps!!! Thank You! :)

[Cheries]

I am on the Duragesic and I personally like it much better than the vicodan. I had way fewer side effects with the Duragesic and less break-through pain. I would also look into other options before pain management, or with it if possible. Unfortunately I did not respond to other treatments. If you have just been diagnosed, what about some of the other things people here have tried? Is your doctor up on the latest treatments?

[coco1234]

My doc. dx me and than sent me straight to the pain doc. I have another appt in Feb. and he wants to do some sort of surgery where they stretch your bladder... sorry I dont know the exact name for it. I have had so many surgeries (total hysterectomy is just one) and he thinks this has been the problem all along, I did have endo, but the pain still remained after my surgery. Thanx on your info on the patch, I think im going to try it, it would be nice to not have the break through pain, im just always so scared of strong opiates...but it does sound the route to go! Thanx Cheries!
Have a Happy Holiday!

[PenguinK]

coco, Welcome to the forums. :grouphug: They were my main guide when I was diagnose in Nov. 04. I still feel like a "newbie" to this disease some days, but I have learned a lot by researching here and on the books in the ICN shop.

The diet helped the most, but I was also put on Elmiron, heparin instillations, and Hydroxazine. I am curently on Lyrica for the pain. It was originally prescribed for shingles and diabetic pain, but doctors are now seeing it as a tool to control the pain of IC.
It took roughly 6 weeks to get my system used to the medication, but the side effects weren't that bad. I was a little foggy and tired, but the pain went away within 2 weeks of starting Lyrica. After the 6 weeks, I increased to 50mg 3 times daily and the side effects are much less. I notice them less if I take it with food.
I would ask your doctor about this, and other therapies and keep surfing the ic-network.

Good luck and God Bless,
KK

[coco1234]

Hi! My doctor was saying something about putting me on Elmiron, I have heard alot about it and I am looking forward to trying it! I nave a question for anyone out there, my moods have been horrible, im ultra sencitive and snappy with everyone, could that be a side effect of the vicodin?? I am so emotional... I just wish this would go away, I thank you all for your support, I dont feel as alone anymore!

[JaniceB]

Coco
My first drug for IC was amitriptyline (elavil), and I found relief from pain (which was pretty severe) on the 4th day of taking it at just 10mg. I now take 25mg and have been doing well. You asked about having to get up to go at night - the amitriptyline really curbed that for me, I can usually sleep through the night. I added hydroxyzine (antihistamine) 3 weeks ago and have had more improvement using that with the amitriptyline. I also recently started Elmiron but since that can take a long time to work I havent noticed much yet with that. I'm wondering if your dr knows alot of IC patients are helped with these drugs.

I recently finished a study about IC at a univeristy hospital in IC research and these 3 drugs are the most common regimen they recommend for people to try first. My dr is very, very hestitant to prescribe anything narcotic but she was very agreeable to putting me on these 3 medications.
Janice

[VickiB]

I was diagnosed 22 months ago. My Uro prescribed Elmiron, amitriptyline, and hydroxyzine. I was in a lot of pain back then, and unfortunately, he's one of those who will not prescribe pain medication for IC. Luckily, the most dramatic improvement for me came from simply following the IC diet in the handbook on this site. (Tracey posted a direct link to it) Now, between the meds and diet, I'm rarely in any pain anymore.

You'd mentioned having your bladder stretched. A hydrodistension is one form of treatment that many have found significant relief with, and I'm sure you'll hear from some of those who've chosen that route.

I do hope you get to feeling better soon!

Vicki

[celine]

Yes, it could be the Vicodin. But your emotions are really trying to handle alot right now, just being diagnosed and all. I am on methadone and the patch. Just 25/every 72/hours. This helps alot. A little naseau at first with the patch but that passed in a day or so. My doc tried me on the 50/every 72 hours of the patch but I couldnt handle it.Way to strong for me. Personaly this works for me.Plus the elmitron,hydroxine,and amtriptline. Best of luck Coco1234

[traceann]

Coco, I found for me it wasn't any meds that made me snappy and crabby, lol. It was from the stress of just trying to get feeling better, dealing with a new disease, etc. But I was never on any pain killers other than OTC Tylenol, so not sure, but like celine said, it could very well be...then I think it could be a combo of everything! ;)

Hugs!

[hoping4acure]

Coco,

:welcome:

You have already gotten some great advise.

I found that with me it was the not knowing. I think that goes with just about everybody. I was so overwhelmed and I was just scared to death.

I found a wonderful URO and she helped me through it all and helped me right into remission. This web site helped also.

The IC diet was HUGE for me. If you have not already read the IC patient handbook and IC diet below please do...it is full of information.
Stay strong (your mind is VERY powerful), think POSSITIVE and do a ton of research on your own. Remember....what is right for one person, may not be right for the next. It is all trial and error.

Good luck, see you around the boards and I am confident that you will find what is right for you.

:grouphug:

Louann