I am new to this

[MaryinMichigan]

I was just diagnosed with IC last week, well, I think I was…no doctor
has actually said it…but I found a uro who started me on Elmiron. Thats a
start! I have been in pain for two years now. Never heard of IC.
I don't know where to begin. I bought some decaf coffee yesterday and lots
of bottled water. Doc says stop taking my vitamins and scheduled me for
6 visits to learn pelvic floor muscle excercises. I would like to learn all
that I can about IC because I know the treatment mostly depends on me
and how I take charge of this!

[ICNDonna]

:welcome: to the IC Network. You have definitely come to the right place to learn about IC. You'll want to start with the Patient Handbook at http://www.ic-network.com/handbook There's information there about diet --- I suggest you put yourself on an IC diet right now. Sometimes that significantly improves symptom. Also, you'll want to avoid all coffee, not just the caffeine, at least for a while. It's not just the caffeine that's the problem --- coffee is one of those things that has lots of acid. You might want to try Kava, the low acid instant coffee. Some of us can drink it with no problem.

Elmiron can take up to six months or more to become effective so if you don't show some improvement from the physical therapy very soon, I suggest you talk to your doctor about other treatment options until the elmiron kicks in.

My IC was diagnosed thirty years ago. It did take time to find effective treatments for me, but I have to say that I feel good most of the time. I do know where every restroom in our city is located and which ones are cleanest/nicest, etc., but I am used to that and my family is used to waiting for me outside the doors.

When reading the boards, remember that for every person posting here because they are in pain, there are literally hundreds out there with IC who are not visiting the boards because they feel good and don't need the support.

Sending warm healing thoughts,
Donna

[Jenna Crawford]

I was just diagnosed with IC also. I am only 17. My doctor informed me that he hasn't ever seen a case as bad as mine in someone as young as i am, he was amazed to see what he had seen in my surgery. This is all new to me so if you could give me some advise on how to ease the pain that would be great.

[kelly McC]

Hi and welcome,
Donna gave you great advice and the handbook has lots of useful information.Good luck with your treatment and happy holidays !!
Kelly

[jaime15]

Mary:Hi there! I take elmiron too. It has been very effective for me. But like the others said, it takes a while to feel any different. I once thought it wasn't working for me so I waited 4 days before getting my next refill. Big mistake. I had a terrible flare for days after skipping those doses. I knew then it was the rx for my IC. I hope it works for you too!

Jenna:Hi there to you too! We have quite a few teens on the message boards who are coping with IC and their high school years. I was 17 when I had my first kidney stone. And in my early 20's I was dx'ed with IC. I am 28 now. And I have one child. He is 2.

So once you guys find the right treatment, it is possible to put this IC disease on the back burner and enjoy life again.
Big hugs to you both!

:grouphug:

[SharonA]

Hello to you both and :welcome: ...So glad you found us and decided to join in. Do spend some time reading the IC Handbook. Donna has already given the link. The more you know about this condition the better it is for you. You can become a vital part of your health care team. Knowledge is power...information is the key.

Like Jaime said, there is life despite having IC. With the right treatments, it is possible to live a normal life with very few symptoms. :)

[Dixiefireball]

:hi: and :welcome: to both our new members these other wise ladies has gave you some good advice. I just wanted to add my welcome to you both.
sending you hugs and prayers
Rhonda

[traceann]

Me too, I just want to say welcome!! There is a ton of helpful info at this site and these boards, it's just amazing! I know from experience you will find some tidbit of info here that will help you in one way or another! I know I definitely have!!! I have learned so many helpful tips to help me manage all sorts of things, especially travel! I still have anxiety about it, lol, but it so much less than it used to be. I almost feel I am gaining some confidence on being to handle those sorts of things in stride!! I have my "tool-kit" approach to everything now, and it makes me feel so much more relaxed knowing I have all my available resources with me, that most times that knowledge is enough to stave off any "stress" irritations of the IC. So, keep on reading and you will come up with stuff that works for you, there is a wealth of info here to be had!!!

Take Care, Hugs and Warm Fuzzies,
Tracey :)

[Queensweater]

:welcome: Mary and Jenna!
There's not much to add since others have made excellent recommendations, but I just wanted to let you both know that the people here are a wonderful source of information and support. :grouphug:
Wishing you both (and everyone else) a happy and painfree holiday season!
Heather

[MelissaJ]

Hey and :welcome:
Jenna, I'm 23 now, but I was diagnosed with IC when I was about 14, I've probably had it longer though, so I am just going to say if you wanted to PM me and talk about teenager stuff that is related to IC and how I got through it go right ahead.

[Babs RN]

Hey Mary and Jenna,
Welcome to the ICN. These boards have been a lifesaver for me, especially when no one understands. So when you have news, questions, or just need to vent, good or bad we are here. There are all sorts of different experiences to learn and gain support from here.


Hugs and :welcome: ,
Barb

[Katrina]

:hi:Mary and :welcome::hi:Jenna and :welcome: Jenna....so sorry you are so bad so young :grouphug:

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.

http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies It can get you started on a life with IC

I welcome you both to ICN and encourage you to ask us with questions you may have. :kiss:

[MaryinMichigan]

Thank you for all your good thoughts and wishes. Mornings are always so bad for me!
I can feel the pain in my lower back and groin area even before I get out of my bed.
My pain started two years ago when I was 43. I had been diagnosed a year before that
with numerous allergies, both food and environmental. I made changes in my diet then,
and put protective covers on my mattresses and pillows and went weekly for 3
different allergy shots. My GI problems improved immensely. Then WAMMO. I had this
unexplained pain-like I was just kicked by a horse! I thought it was a UTI-but that was negative.
Now, two years later, and many, many tests and doctor visits, I have gotten to this desperate place in my life…dependent on narcotic pain relievers-just to get through
my day!

[traceann]

I can relate to morning pain, last month before I was on all my various meds (elmiron & vistaril, ditropan too, but had been on that for a couple of months before the other two) I would wake up with an inkling of pain, and before 9:30 am I was in pain, full blown. I'd take pain meds and wait for them to work. Couldn't even stand up to get myself ready for work, (thank goodness I have really flexible hours!)

I have been in a slight panic dreading the ovulation week and then the wait until my period started...but ovulation week has been here, now I am on the wait for my period... and there has been a huge difference in my symptoms, I don't want to jinx myself, lol, but I am feeling a bit hopeful that it won't be on the grand pain scale it was last month...that was rough (that is my yardstick I am using to measure, if I can get through the two worst trigger-times, I feel I can do anything!). I didn't have any Rx pain meds, so I was gobbling Tylenol like it was candy just to get through the day without going insane from the pain. When I made travel plans for the holidays (lots of hours on the road! eek!) I was starting to get really nervous, cause looking at the calender, my period would be due any time around Christmas, and I remember last month...but like I said, I am feeling more and more hopeful. I know they say the elmiron takes 3-6 months to see improvement, so I credit the diet (I am sticking to it really strictly until the holidays are over, then beginning the adding things back in to test them), the ditropan and the Vistaril (hydroxyzine), it's been amazing the improvement.

So, all that long-winded-ness said, (sorry about that ;) ) just wanted to tell you from another Michigander keep your chin up and read all you can. There are ways, I just wish we could all find them instantly, no trial and error (I hate the error part!!) I too just a month ago, could not imagine how I was possibly going to live my life the way I was feeling, just functioning was too overwhelming for me. I think hopefully I have found some remedies that work for me, and I am so grateful for that. You will too. :)

Hugs and Warm Fuzzies (especially after the snow-dump we got last night...I hate shoveling...)
Tracey :)

[MaryinMichigan]

Traceann,
What is ditropan and what is vistaril? I have heard of them, not sure
what they do. I am taking Vicoprofen (ibuprofen and vicodin mix) for my pain-
of course I need more and more now to feel them working. I need to find
a pain reliever that works for me that is not a narcotic. I hate how my head
feels when taking just vicodin. tylenol and motrin and even tylenol 3 does not
work for me. My periods have also been tremendous pain-I have missed work
because I get so weak and cannot stand up straight!!!

[traceann]

I can so relate, like having periods aren't bad enough, let's add in horrific bladder pain on top, yippee!
Ditropan is antispasmodic, that is supposed to reduce the spasms affecting your bladder (causing frequency, urgency), and for me it works on my urethra. It does dry the heck right out of me though, not only my mouth (ick) but my skin as well, but I am willing to put up with that, vs. the spasm-y feelings I get, cause they are annoying and hurt as well, lol!

The Vistaril is hydroxyzine, an antihistamine. My doc told me it can help the elmiron work better, apparently current theory is that it's nasty histamines (maybe,lol) that attack your bladder walls, and this calms them down so the elmiron can do it's coating thing. Plus, it's a mild relaxant, and has sedative properties, so it helps me sleep. I only take 25mg's at bedtime. At first I felt groggy in the mornings, but that has gone away now. And it's cheap, for a 3 month supply it only cost me about 20 bucks, (no ins) so I figured it can't hurt and it helps with my allergies too boot. lol. I know there are some good articles on this site, one in particular with a doc in one of the "Q&A with an MD" section of the site. That's what prompted me to ask my doc for it. I hope this link works, lol, not very adept at this stuff yet of posting links.. http://www.ic-network.com/guestlectures/parsonstranscript.html

Well, there, I gave it a go, and if it doesn't work I am sooooo sorry!!!

Hugs,
Tracey :)

[Queensweater]

Mary: I couldn't find ant pain killers that worked for me either. Tylenol has never worked on me, but Advil helps (it's an anti-inflammatory), so I take that for a few days before my periods and it alleviates a lot of "extra" pain and cramps. Doctors tried me on Naproxen, Toradol, Percocet, but nothing worked. Finally, I asked my doctor about Neurontin. In response, he suggested Amitriptyline since he was more familiar with it. It has been my wonder drug! Not every day is a good day, but I have been able to return to an almost normal life again. Maybe that is something you and your doctor could look into trying for you.
Good luck! :)