Eternal remission?

[Violin]

:hi: Hello!
I'm new around here.

I have a question to people who have had remission.
When you came back from the remission, do you come back better than before the remission or worse than before? :hmm:

I've had for about 1 month without any pain. But I didn't know if it was a remission or not...

Is there anybody had a remission which last forever? I’ve read so much about this, in three languages… They all say that IC isn't curable... Really, has nobody cured from this ever? :headbang:

Love,

Violin.

[ICNDonna]

I know of one woman who had twenty years with no symptoms before they returned (my uro told me about her), and I do know of another who felt if she passed the two year mark, she would consider herself cured. There are several people who have posted here that they have gone several years without symptoms before the IC showed it's ugly head again. To be honest, I don't actually know of anyone who has been permanently cured.

My IC was diagnosed thirty years ago in 1975 and I have had periods of six months to just under two years with only mild symptoms during all of that time. I still have to follow my IC diet full time. I'm just thankful for each and every day that I feel good and I've learned to not worry about the day the symptoms will return and I need another hydro.

My symptoms aren't as bad as at the beginning because I now know what foods and drinks I need to avoid and which treatment options work best for me. Also, I don't let the pain get awful before seeing my uro.

Donna

[Oxana]

Yes, it's not cure for IC yet. But people can have remission, it's for sure.

Now I understand that I had the symptoms of IC for years and no urologist told me about this possible dx. I use to have antibiotics which didn't help me much. One uro told me that I have very sensitive bladder and recommended take the Prelief and try to kep my urine less acidity. It was helping me a lot.
Last yer I had a problems with my stomach and gall bladder. I had a diet for almost half a year. I forgot about my bladder and all the symptoms what I had before. I even stopped take the Prelief and felt myself ABSOLUTELY well. But after gall bladder surgery I started eat all trigger food including a lot of tomato products, and after 4 month my bladder started bother me again with more tuff symptoms.

Donna is right, the diet is GREAT thing for IC symptoms. It really work!
Now I follow the IC diet full time, take Elmiron and Vistaril. It will be for one month soon. So, YES it's possible to have the remission and it can be for long time. It's depends from stage of the IC and the tritment which works for you best and of course the diet. It's very important also to keep the urine not acidity and prevent the bladder from more inflammation. The bladder can heal by itself, but it is very slow process and it's very hard because the chemicals and food all the time hit the bladder wall.

If you don't have pain, or have it not all the time, you can work out. You should do it carefully so and find what kind of work out is right for you. It can be helpful for the bladder heal too. It's good to keep blood circulation in bladder muscule.

I wish you to find the right treatment and go to remission soon.
Take care about yourself and let us now how you are doing. :grouphug:

[mom_in_ma]

Well, my first six months of IC was absolutely horrible --that was two and a half years ago and the year after that was workable but unpleasant. But now, I consider myself to be in remission most of the time. I don't take any drugs on a daily basis and feel pretty normal. In fact, I don't have to follow the IC diet that strictly. Mostly, I try to avoid soda and raw tomatoes. I think I went into remission because I learned which meds work to stop my flares and I take the meds as soon as I start to feel that burn. I realize absolutely how lucky I am and also think it's important to let people know that many of us do get to the point of feeling good quite a bit of the time. I know I needed to hear that when I desperately wrote my first few mosts.

That said, every now and then I actually get to the point where I convince myself I'm "cured" (I know, I know) and go WAY overboard. Then, it slaps me on the side of the head (and bladder!) to remind me. Like this past week...but if I admit to the cause you will all just about sh#t and ask me why I am SO INCREDIBLY stupid. So...let's just say it involved a few cans of diet soda, raw tomatoes, a cold and some Tylenol w/psuedophedrine (sp???).

Yesterday, the burning and bloating was miserable and took away all my energy. Thankfully, after a few xanax, a handful of tums, and allegra...I'm feeling good again.

So yes, my flares are significantly shorter and easier to deal with when I fall out of a remission period.

[Violin]

Thank you for replying me. :)
I haven't started with my first treatment yet, but I feel already much better just with IC diet. I haven't taken any trigger food at all since I started to follow the lists for about one month (??) I'm realizing it really works on me. No caffeine, no acid food, no hot spicy food, no soy, no soda, etc, etc.. (Only problem I see is that I always eat very little anyway, but now with IC diet, I eat less. I lost a lot of weight since I started with IC pain and now more with IC diet.) I’m taking Atarax every night for y allergy, but it's also helping me with IC. I sleep better and I'm more relaxed. I want to know what treatment is good for me and how I can take care of my bladder not to get worse with IC symptoms. In about 4 weeks, in November, my doctor will put me Cystitat, that’ll be my first treatment…

See you very soon.

I love this site. I feel at home.

[sjackso]

I had my first bout with IC 13 years ago. I had four DMSO instillations over a month and strictly followed the IC diet. Within about 6 months I was symptom free, but still followed the diet. After about two years, I was eating everything and anything I wanted. I was completely and absolutely symptom free for 11 years and ate and drank anything I wanted. In fact, IC was just a distant memory until last January, when it reappeared. I am almost symptom free again, but still following the diet closely.

[sedavis]

Eleven years, what a great inspiration..I've been pretty much symptom free for 2 years and have added back most foods. I'm still not drinking coffee and only occasionally anything with tomatoes. Sue

[Violin]

:) Hello, I want to ask two of you are having so long time remission... Are you, or were you mild IC patient or severe IC patient? When you have pain, what kinds of pain are they? I consider myself mild IC because I only have pain in my urethra and bladder and my pain usually aren't so strong nor so long, my frequency is every hour during the day, at night maybe every 5 hours without sleeping pill's aids. When I have an attack, or you all call it flare, my pain is like UTI: so it's continuous and going to the bathroom each 5 minutes. Since I I got to know the IC diet, I'm following it, and I'm a lot better now. I'll be on Cystitat in 4 weeks.

[sedavis]

I had severe IC with Hunnars ulcers. My pain was mostly genital with lots of frequency and urgency. When I cheat on the idet I still do it in moderation. Sue

[mom_in_ma]

I'm not one with the years of remission (yet, at this point it's months at a time) but I can tell you that I think I have mild IC compared to the some of the others I've read about on this board. However, during my first year with IC, there is NO WAY I would have classified myself as mild!

Anyway, for me...what works is a combination of antihistamines, xanax (to stop the spasms, it's a godsend), tums, and watching my diet when needed. Most of the time I don't need the meds. But, when I feel that typical burn of a flare I take them immediately and they usually put me back into remission quickly. Knock on wood!
But, the longer I wait to take my meds the longer it takes to feel better.

[Violin]

Hello! :)
So, I'm getting the idea now... :hmm: IC pain gets worse and better, like my Atopic Dematitis which comes and goes. I've had it since I was a girl. When I'm with flu, some infection, long lack of sleep, stress, etc, whenever I'm down, it gets worse. And of course, I have some food that makes me feel worse, for example, milk... It's get worse when I'm with my enemy allergen also, like house dust, some metal, some trees, animals, etc... :rolleyes:
The question is that we have to take care of what we eat, to know what med can help us… and in general, to try not to have our self-defence down by any other causes… I guess. Also as Donna said, I’ll try not to live worrying about it the day I’m free of pain. I usually suffer from the pain when I have it and also I suffer from the idea of it coming back in any moment and don't enjoy the moment of no pain...

[mayray518]

I dont think I can be called "cured" since I depend on my meds but I have been pain free for 7 years due to elavil. I have gotten my dosage down to 5 mg. If you can find something to take the pain and pressure away I consider that a Godsend.

[Violin]

HI! :) 5mg is almost nothing, right? How nice to be 6 years without pain!! I started to have IC pain in December, 2004. Since I had Cysto and biopsy three weeks ago, I haven't got my keen urethra pain, though I had the post cysto pain for a week. I think it is due to the IC diet that I started and I started not to feel so bad psycologicaly about my health situation thanks for you all here. Rhight now, I only take Atarax 1/2 of 25 mg at night, and all the natural medicine that my naturopath sent me. Since last week, I'm almost normal like before... (I'm afraid to say that, if it comes back...) Maybe this state of without pain is called remission? I hope it continues like that... :bow:

[chrisk]

Is having a hydro what helped you? I had that done last month (Sept. 21st) and have felt better than I have in over two years. I was "officially" diagnosed last Sept., after having first read about IC and diagnosing myself after months of what was thought to be recurrent UTI's. After months of being on Elmiron and following the IC diet but still having constant daily pain I saw a different uro who wanted to do a hydro because I had not had one previously. He said it could be therapeutic as well as diagnostic. I was skeptical but agreed. Figured I had nothing to lose at that point. It was practically immediately therapeutic and I've been painfree since. I've been eating all sorts of forbidden foods & enjoying it, all the while wondering when the IC symptoms will return because everything I've read says it inevitably will.

I'm seeing a gastroenterologist next week because as my IC progressed, I developed symptoms of irritable bowel syndrome. Those symptoms have also subsided since the hydro but my uro suggested I find out for sure if what I have is IBS, and not simply assume that's what it is. Sounds logical but I'm worried about possibly needing to have a colonoscopy and that flaring the IC. Has anyone experienced that?

[songbird7]

I'm really happy for you who have long remissions and thankful for any moment I don't experience IC symptoms.
Cheers!

[Violin]

Chrisks, I had colonoscopy before my uro did Cysto/Hydro/Biopsy. Really, I can't say if the colonoscopy flared my IC or not. Because then I was continuously with uncomfortable burning sensation in my urethra and some sharp pain in the pelvic area. (I wasn't aware of the IC diet either.) I've always had constipation and since I've got IC pain, my flare-ups always made me have diarreas. So my Uro wanted to discard the possibility of IBS. The result said that I have more spams than usual, and could suspect of that possibility, but they didn't say clearly I have it. It's been more than a month since I had Cysto/Hydro/Biopsy, and in 10 days, and I haven't really had much pain. And my urine capacity is doing pretty good (200cc-400cc). I think the hydro and my diet is working very well. How long does it last ther effect of hydro? And I can't forget I've been taking many combinations of herbs that my naturopath sent me. Anyway, I'm supposed to have Cystistat treatment (4 instillations a month), I'll see my Uro to report my state of these days this week.