Grieving Loss Of Remission

[Shay]

This is my first post on the ICN. I did not even know it existed until I started searching the web recently in hopes of finding some information or someone who 'got it' as far as what Im experiencing. How Happy I was to find that Im not alone but equally sad that anyone else has to go through this.
Without going into my entire story and just sticking to what is going on this day, I must say Im very discouraged.
I had the extreme blessing of experiencing a period of time that I have now learned from this site was a state of remission. You must know that at the time I thought it was all over and I was cured and it was all just a bad dream. My husband and I were SOOO excited. The remission lasted a few months and I was really convinced it was all over until 3 weeks ago. OH MY STARS when it came back it came back with a vengance and made me pay for all the days off I had.
I have never had a flare this bad. The first few days I was actually passing some kind of tissue and the pain would have sent most to the hospital. I just deal with it because all I invision is going to the hospital and having them look at me like so many Dr.'s here and say 'Sorry, there is nothing we can do for you'. So I just 'deal'. Im 3 weeks into this post remission flare and nothing is working that has always worked.
To sum it all up....I went from heaven to hell at lightening speed and today Im just feeling :shake: sad about it. I think Im mourning the loss of my remission as this flare continues.
How Blessed I feel to have a place to even say that and know someone understands.

[jvr]

Hi,

I wish I could say that I don't understand, but I do:( I'm coming out of a 6 year remission. I had a cystoscopy and that has just set my IC off. I've just started Elmiron and Cystoprotek and am adding in Atarax. I'm doing the IC diet and that is helping a lot. I'm planning to be much more aggressive and proactiv this time around. There's more for me to try this time around and I've found better doctors to work with. I'm trying to stay positive. From everything I've read, most IC patients do find effective treatments. It can take time, but most of us can get there. Please don't give up and get yourself to a good doctor very soon so you can get yourself on the road to finding something to help you. Sorry again you're feeling so bad:(

Jill

[Shay]

Thanks so much Jill for the encouragement :angel:
Can you tell me what kind of Doc you are using. I have been to my GYN and my family Doc and a long time ago to a urologist. None of whom seemed very educated at all as to IC.
Im thinking I need to find someone soon that can really help me (especially before Jan. when deductibles start over:rolleyes:

[nottoc4]

I go to a UroGyn for my IC. He is wonderful. Have you been tested for a UTI?
It's possible you have one.Praying you get some relief. Jo

[kadi]

In the six and a half years I've had IC, there have been great strides in educating doctors about IC. Definitely do try to see a urologist & if you don't like the first or second one you see, try a third or fourth. It can take awhile to find a good doctor, but it's worth it.

Also, it's worth checking out if you have a bladder infection. That could account for the level of symptoms you're having.

Are you following the IC diet? That can make a huge difference in calming down IC symptoms. Here is a recently updated diet list.
http://www.ic-network.com/diet/dietcheatsheet.html

If you had significant remission before, there's a very good chance you will have it again once this flare or infection is treated.

Welcome to the ICN and I hope you find some relief soon,

[jvr]

Hi,

I agree with Kadi. There have been great strides with what some of these doctors know now. I went to a local urologist recently who offers rescue instills. That definitely wasn't offered to me the 6-8 years ago that I last saw a urologist. I also was told I had bladder problems because of anxiety. Another urologist told me I might have it and to just drink more water.:cussing: I have found a local urologist who's has a good bedside manner who seems to listen to me. I hadn't found that with all the other local urologists who I had seen several years ago. I think he still has some things to catch up on, but I've had a much better experience this go around with my doctors. This urologist is also working with an IC specialist to manage my young daughter's IC. I can't believe I found a local urologist who is open and willing to do this.:angel: My advice too, is to just keep searching until you find someone you're happy with. Ask around, look on these boards for recommendations and you will find someone to listen to you and work with. It definitely is an effort sometimes, but well worth it in the end!

Jill

[mom_in_ma]

Sadly, I understand. I've been in and out of remissions a handful of times....lasting from months to two years. The latest one was nearly three months and I came out of it a few weeks ago. You would think that I would learn not to get excited about remissions and completely dejected about coming out of them. But, it's human nature. When we are pain free...we forget that we were ever in pain. When we are in pain....we forget that we were ever out of pain.

[vm]

But, it's human nature. When we are pain free...we forget that we were ever in pain. When we are in pain....we forget that we were ever out of pain.

That is SO true, isn't it? :(

I do have to remind myself when I am in pain that it will pass - that has been my pattern. It can be so hard to believe it, though. I have to take that risk of believing b/c the hopelessness makes the pain even worse for me - but sometimes that feels like such a BIG risk.

I hope these remissions come back for you. Hang in there - most people do get back to feeling better. They really, really do. :kissing:

[VickiB]

Yes, that is so true!

My IC has been like a roller coaster ride symptom-wise. It's really hard on the emotions isn't it? When it's good I tend to forget. When it's bad I have a habit of feeling sorry for myself and seeing everything through dark glasses. "Just deal" doesn't quite get it! But, I know that's the hard truth of it, and I also know that it will pass.

You were in remission before so I bet you can get there again! I hope it happens soon for you!

Vicki

[Shay]

Thankyou all so much for your responses. I wish I had found this site a long time ago. I even had doubts when I found it figuring that everyone may be tired of hearing the same old stories and would not really be truly interested....I was wrong and Im happy about that:smile tee I wanted to share something VERY interesting that happened Friday at my Doc appt..
I was in such a bad flare for 3 weeks. I last went to a Uro in 2004 and pretty much left his office after many many tests with him saying 'There is no cure, Good luck with that'. So ever since then I have just dealt with it. Well this flare was so painful and I was having new symptons that I decided to just go to my family Doc. I live in a small town and there are no uro/gyn and my choices are limited anyway due to my insurance. I have never discussed my IC with my family Doc but since I joined the ICN I went in there very informed and ready to try and get some real help. He gave me a urine test and this flare had led into infection. He was just about to hand me a pres. like it was a run of the mill UTI and I stopped him and said....
'Doc,Long Story Short' ....then I gave him dates and treatments that I had in 04 and what I was doing now to manage and what I had tried. I mentioned Elmiron and he said he was not familiar with that drug and only knew the basic of IC and he went and got his laptop and I took him to this site and showed him the latest research,etc. It was very interesting that I was teaching him and then had to pay him (LOL). I kind of admired the fact that he was not too proud to say he didnt know and was willing to research it. The next step is that I go back in 2 weeks when the infection is clear and he said we would make a plan. Its exciting that someone is listening but to be totally honest, I dread the process of trying one thing after the other. Im a hippie by nature and I dont like drugs at all and its all just so overwhelming. I know you girls understand and I thankyou for listening to my rambling. Hopefully soon I will be able to help someone else.
Have a Great Week!!:angel:
Shay

[Natalie41]

Hi, Shay. I am sorry that your remission ended. I am glad you found this site. It has helped me a lot. I hope you have a better urologist this time. Good luck with your treatment.

Take Care

[vm]

What a COOL doctor! Love hearing stories like that. :)

[Katrina]

:welcome: to the ICN...many of us wish we found the ICN sooner.
you were symptom free once post diagnosis and I think that means it can happen again.
As someone who has flared many times while in remission the fact that you have a UTI says to mean...don't count yourself out of remission yet...just that it is on pause for a bit. You have an infection and both the bacteria and the dammage it can do are things to recover from...it is the second that is hard since there is no time that can be sure of with that part but your not alone so you will win.

The fight might be hard but you seem strongly prepared for the journey...may full relief be soon! :grouphug:

[Shay]

Thankyou so much to all my new 'sisters' :grouphug:

[maryla]

Shay,

Just wanted to say welcome/ I'm so happy that you found a dr willing to work with you. And happy it's a uti. after all.

hugs and blessings