Are we ever pain free?

[Hope22]

I was diagnosed in August 2009 with IC. After four weeks of meds I started feeling better. I then went out and had a few drinks and had a flare up. Way to go! I know....
Since I am new to this I would like to know if IC ever goes into submission?
I've finally accepted my life has changed, but I'd still like to get out of my house with out being afraid. I work an 1 1/2 away from work, so I started working from my house and hardly ever get out.

Also, I have heard that vodka, rum and gin might be ok for IC patients. Has anyone tried any alcholic drink that seems to work from them? It would be nice to get out and let loose a little.

Thank you!

[sailawaygrl]

Many ICers go into remission. You will see many people on here remind you that those that are feeling well are not on the boards, they are out living their pain free lives. Since you were doing well, and obviously know what caused your pain, you just need to get back on the diet. Some of us are hard headed and take longer than others to come to terms with the fact that we can no longer have some of our beloved foods. (I speak for personal experience on that one!!) I do know that many can add back some foods after a time. Once they give their bladders time to heal, they can enjoy some favorites in moderation.

On the alcohol question, most of us take meds that make that absolutely impossible, and I am one of them. I can't answer that question.

Good luck and wishing you pain free days soon.

Sandra

[Hope22]

I totally meant remission, lol. I completely understand the theory of people living their lives which is why they are not on the boards. I was feeling better the last two weeks and stayed far away from this site, but as it gets close to my cycle and I begin to experience pain again I look for comfort here.
Thank you for your response.

[ICNDonna]

Sandra is right. Lots of people with IC don't come here unless they are in a flare. I feel good most of the time, but I remember how alone I felt before the internet was widely used --- and I stay because I think maybe I can help someone feel so not alone.

Sending warm hugs,
Donna

[nkier]

I have had daily pain since 1/8/08. I am now out of work on disability and still suffering every day with an ill, nauseating type of pain. It can debilitate me, and does each day, but I just don't know when the episode is going to hit me. It looks as though I will be walking away from my wonderful job of 10 years. It is highly stressful and I work a lot of hours. I'm not looking forward to returning to work even on a part time basis if the doctor is willing to keep me out for a while longer. I just need time to take care of myself. I then will look forward to a part time job with low stress. My quesiton is...does anyone else suffer from this type of pain as I described it. I can handle pain from a cut compared to debilitating ill type of pain. I am also wondering if I will ever get a break from this disease. I have finally accepted that my life has changed in a major way. I so miss country line dancing in an aerobic fashion. I had so much fun with that. I have gained 30 pounds from Imiprimine. I stopped the med and stopped gaining weight. I just can't loose the weight because I can't exercise much more than 15 minutes of walking at a time. I hope your day is the best it can be!!! Enjoy.

[vm]

People definitely go into remission. I've felt very good for several years now. Hang in there. :)

[kuntrygurl78]

I have very mild IC. Im not in pain most days. :smile tee

[Diamic65]

I was in remission part of the summer. I had mild IC pain but not bad. Then I september the IC pain hit me BIG TIME. Seem like I'
m in pain at least four days out of the week. My URO thinks I may have been in a mild Ic remission. But now I'm out of it. It really can get on your nerves bad. I don't sleep well anymore. As you can tell its after 1:00 am and I'm still up because of the pain. I try to hide the pain from my husband but how long will I be able to keep up the fake smile?


DIAMIC65:help:

[hehurts]

My husband was diagnosed in Apr. 2003, all the uro's he went to couldnt figure what was wrong with him. One uro even thought he was just seeking drugs. We finally found a uro who did a cystocopy (spelling?) he said it was the worst bladder he'd seen 20 yrs. D was diagnosed with hunners uclers and sever IC. He is on permanent disabilty he doesnt drive because of having to void every few minutes.

We met in 2001 he joked about having to pee so many times. The he got really bad, but we stilled got married in 2002 when his disease got really bad I started calling doctors because his pain was so unbearable he'd crawl to the bathroom and cry in pain. He would spend most the time in a hot, very hot bath to calm his bladder.

He hardly ever leaves the house, has gained about 50lbs its hard for him to exercise. He still very optimist, he plays guitar sings and songwrites his own music.

MEDs ms-contin 100 mg 3x's a day
percocet mg? 3x's a day
ambien
soma 350 mg 3x's day
lisapriol
atarax

:toilet:

[Snowden1]

Has your husband tried Elmiron or Amitriptyline? He may get some relief with bladder instillations - has he tried any of those? I know how painful this can be it difficult. It sounds like there will be new treatments coming out soon - they are working on it.
Teresa

[LolaDoggie]

I was in remission for 11 years. I was in treatment and taking daily meds, but, I was pretty much symptom free. I had some soreness and very mild pain and the odd mild flareup around my period. My flare ups were so mild I didn't miss work or miss out on social events. I still had a sex life. I ate. I drank socially. I rode on the back of our motorcycle. Right now I've been out of remission for 2.5 years and it's getting hard for me to remember those good days.

I think the best thing for you to do is to do a very detailed log. A really good log is the only way to tell if something is triggering you, and what it is that's triggering you. Then you'll know for sure if a rum and coke (or whatever your drink is) on a Saturday night is OK for you or not.

[mary124]

I have been dx with severe IC. Been told by 3 different doctors that my bladder is the worse they ever seen.
Between medications and diet I feel pretty good most times, I hold down a full time job plus on the weekends help out a friend who is disabled by cleaning,washing,etc whatever she may needs when I can (usually every other weekend).
I'm here to hopefully help others.

[lttlewun]

Loladoggie - you say you were in remission for 11 years, but during that time were in treatment and taking meds. Can you specify what treatments you had and what meds you were on please?

Mary124 - your case is severe and you still manage to feel pretty good?! That is so great to hear. What meds are you on and how long have you had IC?

[LolaDoggie]

My treatment was biweekly heparin instillations and an oral drug called URISPAS. That's what was working great for me for those 11 years.

[judy45]

I took have basically been in pain since Jan 08. with a short "remission" over the summer of 08 (about 6-8 weeks) since sept 08 I have been in constant pain, not a single pain free day, I rarely sleep more than three hours even with ambien. I too have gained 30 lbs, but because my body has been under so much physical stress for so long that my cortisol levels are through the roof! I physically CANNOT lose weight. 5 days a week of excercising and I obviously can't eat much (I follow the diet religiously although it has NEVER helped me) I have now been on Elmiron for about 8 or so months and the pain has decreased a bit but is not gone. I am praying for more improvement of the next few months. This disease has robbed me of everything, yet I am determined to conquer it, I don't really feel I have a choice. I cannot live this miserable existence for the rest of my life, so I just keep trying and trying the next thing and hoping for improvement. Best of luck to you.

[Diamic65]

I'm just getting over H1N1 flu. Its funny that the whole time my bladder did not bother me all that much. It will be my luck it will hit me very SOON:bonk:
I feel like its around the corner peeking at me and waiting to hit me. I know that sounds funny but.. thats what I'm thinking.

DIAMIC65:bow:

[123456]

Yes, Mary124, how do you do it? I am newly diagnosed and only 2 weeks into meds.

[mary124]

Lttlewun and 123456:

I was dx with IC in 1992 (but probably had it for much longer than that, as I know it took almost 5 years to get diagnosis with this.
I take Elmiron, Urecholine, pain medication when needed, diet. I also take Elavil but it wasn't originally prescribed for IC, it was for migraines along with some other medicine.
I have always worked this one job I have worked with the STate of Texas for almost 25 years (different positions)- I like to be busy and I just don't like to sit still.
Besides my IC I have IBS (which is pretty much in control) and migraine headaches (thankfully I don't get these too often). I have had a heart valve replaced in 2003, just recently, I have had a mass in my left breast removed and now on Tamoxifen for the standard 5 years). I have also raised 2 kids who are now in their 20's. I figure if I can keep working for the next 3 years than I can retire with the State with full benefits. (so here is keeping my fingers crossed).
I also can't forget to mentioned that my husband of 27 years has been my support person and also the people here at the office (most of them know my health history as we all have been here in one office or another for too many years); which I think is very important to have people who you can lean on which I think is important. Hope this answers what you wanted.

[kuni_bob]

I have been in remission for a couple years here or there since I started having symptoms ~9 years ago, and (not to jinx it) think I'm there again right now. I mean, I still need my meds and have to watch my diet still (foods that destroy me don't ever stop), but I can push it with my "sometimes" foods. I had curry this week (very spicy) with no pain! Woo!

As contrast: at my worst, my IC was in moderate-bordering-on-severe category. My first urologist had me in his "urgent" category for a bit. I can happily say that my bladder, even when it's being a jerk, has never been as bad as when I was first diagnosed. So there is hope!

Part of it has been learning my body, which is an ongoing process. For the first couple years, for example, I ate a lot of foods that flare me HORRIBLY without realizing it. I was completely in denial about tomatoes. Whoops. Each month I find myself learning something new about my body. I've learned what each type of irritation means (there is the "this will turn into a flare if I don't make my urine more basic" irritation, or "you are dehydrated and will flare if you don't douse it" irritation, or the "you are inflamed and need some antihistamines" irritation.) I've also learned that when a flare is coming on, it's best for me to drop EVERYTHING and take a day to bombard it with every soothing thing I have. This usually nips it in the bud. If I try too hard to push through, I will end up being out for days with a horrible flare. Better to lose one day than many, even if it's inconvenient!

I have found that my bladder like Jagermeister best of any alcohol I've tried. I go into a night of drinkin *planning* to flare, and so I make sure I have a day to recover afterwards, and count on being a bit useless for a few days. Because it's such a hassle, I very, very rarely do it anymore. :)

Sorry for the rambles...I hope this helps! Just know that many of us were once in severe pain and have found that we are able to live totally normal lives with very little pain.

OH! And one last thing: IC is not a fun thing, but every cloud has a silver lining. For example, I was in a career I didn't like and with a man who wasn't right for me. Because of IC, I had to leave my career and my man left me. But because I was always bed-ridden, I rediscovered my love of art. That eventually led me to the career of my dreams...which led me to the man I'm going to marry. I am 10000x happier now than I was pre-IC, and as much as a pain as IC is, I don't think I'd change how my life turned out. I am living every moment for myself now. :)

Good luck!

[Donnaj]

Today I am mostly pain free but my situation is slightly different than IC. Mine is caused by a thin bladder lining that gets infection and then inflammation of the bladder walls seen on cystoscopy. Instead of having a normal UTI where symtoms leave after a couple of days, my symptoms last anywhere from one week to 3 months. I have bladder spasms, feels like I am peeing out glass, constant bladder pressure and urge. No retention or incontinence. All I know it is miserable when it happens. The pressure and feeling like I always have to go is most annoying to me. Things that work for me is watching my diet of both drink and food, a heating pad between my thighs at night. For some reason it relaxes my bladder muscles from the heat cuts diown on pressure. My Urised is a must, Neurotin and tofranil help too.
50 to 100 mg of nitrobid seem to help my bladder heal up. These are things that work for me for my irritated bladder syndrome. I also sleep with a long nightgown and no underwear. It may sound weird but it helps me from getting as many infections. I guess each one of us has a uinque set of symptoms and bladder problems. I hope they find a cure
for everybody's IC soon.