Relief, Fear, Anger

[Tmbrtiger]

I'm sure everyone can relate to the ups and downs of life. I've seen much more than I care to admit! I was just diagnosed with IC and in a way I'm relieved. I mean..it's not cancer! But, I don't like the whole aspect of "incurable". Plus I like my unhealthy diet (haha) and am almost mad that I am going to have to really make drastic changes in my life to ensure I don't have to suffer the extreme pain I have thus far endured. I used to be a smoker and remember how hard it was to quit (been over a year now!!) and I'm wondering if kicking the habit of coffee and soda might be just as hard, if not harder...at least to get to a point where I only indulge once in awhile. Does anyone have any suggestions that might make this easier for a hard headed person? =) I'm tending to think, however, that this heinous pain I've been in for months now might be the kick in the butt I need! I can honestly say I never thought it could be so painful to pee! UTI's of the past are nothing compared to this.
I'm realizing that I'm rambling at this point...for some reason this is ending up being a bit more emotional than I thought it would be. I mean, I'm not dying or anything, so why do I feel so crappy? Has anyone else gone through a slump because of this? I think part of it is fear of how it will affect the bulk of my life...I already pee every 5-10mins (sheesh!) and intimacy with my husband is usually somewhat painful if not just extremely uncomfortable for the most part. My career goal is field research, but if I"m in the jungle I think I might be a little hesitant to just pop a squat!
So...if anyone has suggestions for a 'newbie' in this whole IC arena, I'd much appreciate the advice I can get. I don't know anyone else with it.
I thank those of you who have gotten this far for enduring my sarcasm and rambling and thank you for your time! Have a wonderful day!!! HS

[kelly McC]

Hi and welcome,
We are here for you!!! I have to admitt diet was the hardest for me but I kept telling myself this is going to hurt my bladder and eventually that worked for me. The diet has not cured me but it has helped me.I am better today than 3 years ago or even 6 months ago. I also have other treatments so I sure all oof them are helping me together. Good luck and glad you found us...
Kelly

[ibtracy]

:) :welcome: The most important advice I can possibly give an newly diagnosed ICer is take things one day at a time and remember tomorrow is always a new day . I know it doesn't make much sense right now but it will over time.

Feel better soon.

Tracy K.

[Dixiefireball]

:hi: and :welcome: to the icn family we are so glad you found us you will find lots of support, love and care here.
sending you hugs and prayers
Rhonda

[VickiB]

Hi and welcome to the group!

It sounds like you're reacting the way most of us did to your diagnosis of IC! It is a crappy deal, any way you look at it! After dealing with IC for many years, and seeing countless doctors who insisted there was nothing wrong with me, I remember how elated I was when a doctor said "I know what's causing this." Great! Finally I can get this stopped! Then he went on to tell me there's no cure. Elation to depression in one sentence!

I do want you to know that with diet, meds, plus many tips & tricks from the wonderful people on this site, my symptoms are so much better than they used to be. Most times I feel almost normal. Looking back, I'd say 95% of the pain I'd been in was food related, so I'm a big supporter of the IC diet! Please give it a try!

Wishing you better days ahead!

Vicki

[SharonA]

Hello and sorry for the belated :welcome: ...

Most of us have felt like you are right now. Happy that we have a name for what is causing us so much pain and totally crushed when we are told that, for now, there is no cure. Now that is as good a reason to be depressed as I have ever heard. You feel like you have been hit by a ton of bricks and that nothing will ever be the same again. I am here to tell you that there is reason for hope. There is so much we can do to help ourselves.

One of the most important is to learn what foods and drinks cause you to have bladder pain. The only way we can do that is to take away the stuff that USUALLY causes people problems. Once you have done that, you can add them back, one at a time. This disease is very frustrating because we experience different symptoms. One thing may bother someone while another is not bothered by it at all. It is so worth all the feeling of depravation to learn what those triggers are for you.

There are many who have been able to find the right treatments and meds that enable them to live normal lifestyles. I am one of those. It is possible and there is life despite having IC. :)

[Sarojini]

Hi :hi: and :welcome:

You've gotten some good advice already... what you're going through is perfectly normal. I think all of us went through a slump when we were diagnosed with IC, when we knew we had something incurable, and when we realized there would be lifestyle changes involved. It's a difficult process, but one that you WILL get through-- most ICers find treatments that help them very, very much, and most of us live a nearly normal life!! :) It may take a while to find exactly what works for you, but you will find it... and Sharon is right, it's worth a little deprivation in the beginning to find what, if any, food and drink triggers you have so you can avoid them. This can make you feel a whole lot better without any pills at all!

Good luck in finding what works for you, and keep working at it... don't give up. Feel free to post here any time to find support during this time... we're all here for you :D

:grouphug:

[ICNDonna]

I don't have much to add, but would like to say :welcome: to the IC Network. I'm another ICer who, in spite of having IC for thirty years, I live a normal life. I agree that diet can be extremely important.

By the way, there are some low acid coffees available. My suggestion would be to completely avoid coffee for a few weeks at the beginning of your diet before you try them.

Warm hugs,
Donna

[stacey79]

Hey, there and welcome! :welcome: You've gotten some very good advice here. I'm not sure there is much I can add. :)

Just know that you aren't alone. I have had bladder problems my entire life. I had a major flare for a couple of years around age 13 then felt better until a few years ago at age 23. Now I'm 25 and still dealing with it. Even with that history, it took me a while to really come to grips with the fact that I have IC and that it's something I'm going to have to deal with. It's hard to accept. Even with the diagnosis almost two years ago, I'm still just now at the point of trying the elimination diet. I thought I knew everything that bothered me, so I didn't go too crazy with the diet when I was diagnosed. However, a few weeks ago I started by eliminating everything on the bad list and have been amazed at how well I feel already. Though it's hard, I would encourage you to experiment with the diet.

Also, be sure to talk with your doctor and read everything you can. There are so many treatments available through oral medicine, instilled medicine, etc. Even though IC is incurable, it is treatable and those treatments allow many of us to live relatively normal lives! Hang in there! :grouphug: :grouphug: :grouphug: :grouphug:

[traceann]

Hey there! Just adding my belated welcome to the rest of the timely ones, LOL. I know exactly how you feel, I had researched this before I got my "official" diagnosis, I was certain it was what I had. I was sooo happy to finally have the doc agree with me and start me on treatment (elmiron in additiont to the ditropan I was already on), but then I got home and cried. That was a thursday, I cried off and on all the way to sunday. A couple times in there I wanted to break things, good thing I didn't -- I am too broke to replace them, LOL!!! I even had mini-panic attacks, that was freaky, never had one of them before, and don't care to experience it again!

But already, through all the wisdom of these boards, most days I feel pretty darn normal with only a few minor urtethra spasms here and there,a nd a bladder that wants to flare sometimes, but I learned sometimes I can stop it in it tracks. Nothing I can't deal with (confidence is a great tool too, it seems to help me mentally), I have my little arsenal of tools that usually work!! Here's what I have learned and use when I have to: (all this in addition to the diet, your are right, pain is a great motivator to make one not eat the owie things!! Otherwise, my resolve would crumble, how fair is that to a person who has a HUGE cookbook collection, cooks as a hobby and is addicted to the Food Network!!! ACK!)

Thermacare heat patches (great for sleep or travel!)
My heating pad, I love my heating pad, currently trying to come up with a name for it, lol
Frozen water bottles/cold pack when urethra wants cold (picky little bugger sometimes!)
Pain/Voiding diary (I log EVERYTHING! times, scale of pain, foods, meds, home remedies etc)
Uristat/AZO Standard (OTC pyridium, makes you pee orange, and can stain udies, I had at one point thought of going out and buying all orange underwear...ugh)
800mg OTC Motrin for pain the others don't help with (I did check with my doc on dosing that stuff too, even though it's an otc, can't hurt to be safe! And I do have on Rx pain killer, Ultram, in case the Motrin doesn't cut it, but so far so good, haven't had to break into that)

Uh, I think that's about it! And believe me, all of these help me at one point or another, its just a guessing game as to which the body wants at any given time, lol.

Well, again, my hello turned into an essay (I have been doing that alot lately, sorry everybody!), but I feel so strongly that knowledge is power and this is the place to get it!!!!!

Hugs,
Tracey

[Tmbrtiger]

Knowledge is power, Tracey...I believe that whole-heartedly!! I do thank you all for your support! I am seeing things quite differently now and have very high hopes! Thank you again!!

Lots of hugs and many wishes for pain free urination! ;)

Heather

[VickiB]

lol Tracey,....that orange undies idea is actually a pretty good one! I think I'll look for some, though I may not be successful until Halloween comes around. Probably be orange with black bats or goblins!

[Sherry5]

I know how you feel. I have pretty much known I have had IC for about a month now, but today I got my Potassium test. It hurt like hell and I have not stopped crying since. I thought I had come to terms with it, but apparently not. I think I am having a breakdown. I would rather have cancer. I know that sounds horrible, but with cancer, you get treated and if you live through it and your pretty muche done. Also, with cancer you don't get the "your just lazy and sensitive" judgement from your family. No one ridicules a cancer patient and says it's all in their head. Sorry, hopefully some of this ranting is coming from the P.M.S. Good luck!

[Sherry5]

By the way, my doctor says there is nothing at all that I can take for the pain, all pain medications will make IC worse. What kind of pain medication works? I need to know so I can demand he give me some for my cruise;)

[dalander97]

Sherry I am pretty much a newbie myself. I knew in my heart I had IC for years but didn't want to face up to the hydo. The constant trips to the bathroom and pressure was a way of life but when the pain kicked in that was the last straw for my already overwelmed and stressed life. Glad I did because now I have the validation I needed. But any doctor that says that any pain med will make it worse is just telling you right from the start not to bother him for any pain meds. Certainly OTC meds can and do help. There are many mentioned on this site that work for many people. Also I love the heating pad I ordered from the ICN shop. With it's triangle shape it fits so nicely I am lulled to sleep with it. Maybe your doc. is refering to the urinary retention that some pain meds are said to have but that doesn't happen to everyone and I am sure a more experienced poster can tell you but I think I read something like 3 percent are effected by this side effect. Either way, any doc. that gives you a diagnosis of a chronic painful condition that has no cure and then tells you that medications that are extremely effective in relieving that pain make the condition worse I would question. I have been extremely lucky I think that my uro. was willing to refer me to pain management. At first I kind of felt abandoned by him that he wouldn't prescribe the medication but now I realize that for me this is the best option to have two doctors helping me. Of course we all have circumstances that lead to choices and treatment options but your doc. should be open to all treatment options you want to explore and that should include effective pain control.
Debbie