Call for positive, hope filled stories

[vm]

From time to time I get private messages from people who have been reading the boards and then log off worried and scared. Because most who come to the boards are looking for information about treatments, IC in general and so on, there tend to be more posts here from folks who are still battling this disease in the trenches and looking for support from others. Folks who have had a bad outcome with a particular treatment. Folks who've had the bad side effects from a medication.

What tends to happen, is that when ICers feel better they no longer need the support or information from the boards here and tend to go out, live life, and resume old activities. So, there are fewer posts from folks saying, "Hey, I'm doing awesome now. Feel so much better and am back to a lot of my old activities, etc."

I know when I was new to the ICN I was SOOOO grateful to find other people who were dealing with the same thing I was. I was no longer alone - I had people to talk to who I could relate to and who knew just what I was talking about. It made me feel better. I loved that there was SO much information at my fingertips so I could learn all there was to know about this disease and its treatment so I could best help my doctors help me.

BUT..... I remember logging on and cruising through messages and getting scared. I would read about others who were feeling like I was or folks who had it worse and I would begin to think, "No one gets better. I will always feel like this," and so on. Then I would be in tears.

So, I got another PM asking for hope - and stories of hope. I told this person I would start a thread to ask for stories from some of you out there who feel like you are in a good place right now.

This is not to make people who are struggling right now feel bad or feel like they shouldn't share what they are going through on the boards. I would HATE it if anyone felt that way b/c I know I needed to be able to be REAL here at the ICN about how I felt and my fears and worries. We need to be free to share the nitty gritty of this disease and the pain it can cause. This thread is only to spotlight some positive outcomes for a bit for anyone who feels like they have lost hope.

So PLEASE, if you are feeling good tell us about it here, OK? You'll be helping others by doing so.

[SharonA]

When I began my IC story in August of 2001, I thought I would never feel good again. I thought my life was over and that I would always be in pain. I had every day pain that would begin around noon and progress thoughout the afternoon until I was in dire pain in the evening. I would go to bed in pain, but wake up in the morning feeling pretty much normal. Then, much like the movie Goundhog Day, I would once again begin feeling worse as the day wore on...day in, day out.

This continued until December 13, 2001 when I found a doctor who understood what I was going through and knew about IC. She wrote a prescription for Amitriptyline (Elavil) 10mg. I had it filled on my way home from her office and began taking it that evening. I went to bed that night in pain and woke up as usual...not in pain. The amazing thing is that by bedtime, I was not in that dire kind of pain that I had known for months. Oh, I still knew that my bladder hurt, but nothing like before.

I started feeling better and better as my doctor gradually took me up to 50mg. Then she began lowering the amount until I found that 25mg did the trick for me. I have been taking that amount since April 2003.

I still have an occasional flare, but nothing like the every day pain I had in the beginning. When I do flare, it is a burning sensation in the bladder that usually goes away after awhile or when I urinate.

I have learned that there are certain foods that I can live without...like oranges, orange juice and lemonade. All of which I absolutely love. I can have a few bites of an orange or a sip or two of juice once in a while. But I have learned that there isn't an orange out there that is worth taking a risk that I will feel that kind of pain, again.

Most of the time, I feel pretty good. I go about my life doing the things I want to do when I want to do them. I can go out to dinner, I can go to movies, I can go shopping, I can spend time with my friends and my husband or the hundreds of other things other people do. Yes, I am always aware that I have IC, but IC doesn't have me.

[SandyRN]

vm, thanks for posting this thread. I think it's wonderful to read about the success stories and walk away from the board knowing that while people are still struggling, there really IS hope out there for all of us.

Hugs, Sandy

[meme]

About a year and a half ago, I was at the end of my rope. I was very discouraged with life itself. My relationships were suffering b/c not only did I have IC, making it difficult to do the things I used to, I was withdrawling from everyone around me and just wallowing in self pity. I actually got to the point where I was just ready for all of this to be over. At the pushing of my husband I went back to see yet another urologist (I'd seen two and a gyno and had been suffering for about 9yrs). At first it seemed like nothing was going to help. She had me try all the drugs that you hear about on tv, and they all kept making it worse. She did two surgeries on me to no avail, I thought I'd never get better. I remember crying in her office thinking that this was how life was going to be forever.
Then, last September, I went to see her again, I was at the end of my rope. By this time my husband and I were considering marriage counseling to try to keep us together, and I myself needed the counseling to keep from falling apart. My uro had me on Elmiron, I'd been on it since June, and had seen a little improvement. I told her about the anxiety and problems I was having and she decided that I should go on Elavil.
That's when my life began to turn around. Within two weeks, I was seeing noticable improvements. Then it just kept getting better. By January of this year I was able to go on a cruise, something I'd only dreamed of (it took a 14hr car ride to get there! Impossible before), and I felt normal again. I ate what I wanted on the ship, and since I've been home, I've been doing much better. Some days I can ALMOST forget I have IC, and best of all, I have my light back, you know that aura that makes us all unique. It's so wonderful.
I still have to watch it, I've been cheating on the diet and today, after spaghetti last night (I know, I know..but I just had to try it) I am experiencing a little more frequency than normal, but still way better than before. I have hope now, that some day I will be better for good. That this will go away.

[vm]

Thank you all so much for posting your stories. I know it will help many out there who feel lost and hopeless.

[vivig14]

there's hope

check out my posting of a positive story under pelvic floor therapies heading below.

[BAM23]

I woke up one morning with the signs of a UTI after a night of drinking lots of diet coke (never touch the stuff again). I went to the doctor asap and found there was no bacterria, so was sent home. Returned two days later saying I had to have a UTI, tested again and still no bacteria but gave me antibiotics and a referral to the URO. Finally found a guy who would take me in one week. Went in and he told me that he thought I had a lower infection or he thought maybe IC but he doubted it b/c I had only had 1 week of symptoms. Put me on antibiotics and told me to see after a month...couldn't make it a month and called called his office and told them I didn't feel better. He scheduled me for the cysto/distention one month (the day I called for 2 days later) after symptoms started and found classic IC. Started me on elmiron. Now 2 months later, I am very close to normal again and only getting better with time. Its like I can feel the elmiron working with each dose. I go to the bathroom 7-8 times a day, go to movies, swim in a pool, have no side effects, take long car rides, and go to dinner. I thought I was never going to have a normal life, But I am doing very well and only hope to get better and better.

I truly believe that IC can be effectively and quickly treated if treated quickly. I wonder what a study would show if all the participants with IC only had symptoms for a month or two. Why wait 6 months to diagnose if time will only damage more?? Just try to stay as positive as possible. Your mind can be worse than the bladder sometimes.

[meme]

That's a good thought. I do wonder if caught right away if it would help to heal any faster and better. You would think so, since IC symptoms get worse with the irritation and ulcers in the bladder, so if you fixed them right away and know what you're dealing with and what to avoid, then you could probably save yourself a lot of pain. Hopefully in the near future drs will get more familiar with IC and start diagnoising it sooner!

[BAM23]

Briza...good thing you got rid of the stressor, so glad for you!

[rjyoon]

It's hard to sum up all the treatments I've tried over the years, but I think it's pretty much everything except instillations. I use several different medications, OTC Prelief, avoiding certain foods, changed habits & Interstim, and I think they each help a bit. I don't lead a "normal" life for many reasons, but I can pass as normal sometimes, which I consider to be an accomplishment. I divorced my first husband, who didn't get the "in sickness & in health" part of the marriage vows, and have found a wonderful second husband. He proposed to me in between Interstim surgeries, when I had wires hanging out & no idea of whether it was going to work or not.

While my life may not be wonderful every day, it's not like IC overshadows everything. It's just one of many irritations in my life -- my boss is another. I've learned to be a total pain in the butt to my doctors (who sometimes don't want to listen to what my body is saying), and I've learned to keep meticulous records. While I'm not in the medical profession, I've learned a lot about it so I can understand my treatments, condition & options. Life with IC is quite liveable. Don't give up hope.

[ICLori]

I developed IC immediately following a UTI (after the UTI cleared up, I still had the same symptoms) and I had a hard time because I did not respond to the usual medicines for IC.

The vast majority of IC'ers (I believe over 80%?) will respond beautifully to Elavil, Atarax, Elmiron and diet changes. They will be so much better that they just about forget they even have IC. And while some of the meds might cause side effects, especially the first couple of weeks, most people adjust well to the medications and say they don't even have any side effects after awhile. Those IC patients who do great, never even come here to the boards. Or they just come here before they are actually diagnosed, to ask about what to expect with the tests and with the medicines. Then they get better and they go away and we never hear from them again.

An unlucky few of us (me) have very complicated cases (no reason to believe you will be one of the unlucky ones) and we don't respond well to the typical medicines. In my case, they increased my bladder pain and symptoms rather than decreasing them. So I had to try less typical medications, one after another, until I found one that put me into remission. For me, my miracle drug has been Cyclosporine-A. CyA is a risky drug, however; and my kidneys did not react well to the medicine. So I am now on a lowered dose of the CyA, and my kidneys are recovering, and we hope my kidneys will return to what they were before I started taking CyA. Anyway, I still like CyA, because it gave me a remission. Even now, on the lowered dose, I am free of pain nearly all the time. I just got a little pain around my period, was all, and that's not so bad. I just take an Ultram when I'm uncomfortable, and the pain goes right away. No big deal.

Anyway, not sure if my story counts as a horror story or a hope-filled story, but I wanted to say: You will almost certainly get much better with the standard IC drugs. You will feel like your old self again and be free of symptoms. And you might have a few side effects at first, but these will almost certainly go away in time. And even if you are one of the very unlucky few, like me, who do not respond to the usual meds and treatments, there is still hope. You just have to keep plugging away, trying new things, until you find your miracle.

Blessings,
Lori

[jjt001]

I've had IC symptoms since I was pregnant with my 3 and a half year old son. About a year ago at this time they got really bad, I was voiding 30-40 times per day and was in terrible pain. I remember when I was looking through the drugstore for a bathroom in so much pain I could hardly walk that I thought "this is not normal" (took me a while to figure that out, didn't it? I think it was the fact that I actually went into Long's Drugs backroom and up some scary stairs to the restroom that made me realize I was desperate! LOL).

I saw my PCP who gave me a course of antibiotics, said "this is not normal" and introduced the idea of IC. I knew one friend who got IC when she was about 15, and she is a tough, tough girl who ended up in so much pain somtimes that she couldn't even move, and I thought "Oh No!". Thanks to this message board I went to an IC-savvy urologist (luckily I live close to Stanford) who diagnosed me by symptoms on my second visit. I did a 12 week trial for amitryptiline (Elavil) and got steadily worse -- I was in pain all day every day with very little relief for five months. I think I had two or three good days. Pain pills did nothing (except that the Vicodin did make me not care so much about being in pain!). I felt like I couldn't go and do anything with my family and was so worried that I'd always be a sick Mom to my son.

Then, on October 16 of last year, I started amitryptiline for real. I remember the date because it is my anniversary. I had obviously been on the placebo during the trial, because at 25 mg I was pain-free in a couple of days. The pain came back so I went up to 50mg, and eventually 75. For the last three weeks or so, I have been almost pain free! (and my urgency and frequency have declined with the pain -- I still go a little more than most people, but can hold it for 2-3 hours). As I'm sure many of you have experienced, you almost forget how bad the pain was when you start feeling good (thank heavens!). I still have to watch my diet triggers (for me, citrus, spicy foods and soy), but it's a small price to pay for the way I feel! I am SO grateful that Elavil did work for me. I actually FEEL the absence of pain, if you know what I mean!

I am a happy camper, and although the Elavil does make it hard to wake up in the morning, I'm happy to sleep an extra hour a day if it means the hours I am awake are so much better!