I Have Chosen Not To Participate In My Disease

[Trying2Cope]

Ok, maybe the title of my post sounds a little dillusional, but let me explain.

I have read that stress plays a big part in IC pain and flares. I realized that I was stressing...no...OBSESSING over things that might cause a flare for me, because the pain was so intense. What should I eat? What if I can never eat that again? I'm going to have this the rest of my life!

So...one day I said "enough". I still take my Elmiron. I still take my Tums after eating something spicy or acidic. However, I no longer follow the IC diet. I eat what I want. I drink what I want. The only exception is, I don't drink much soda (I used to drink several cans a day), I still drink my "toddy" style coffee and I stay away from spaghetti sauce (but I do eat regular pizza). I stopped worrying about what MIGHT cause a flare for me.

The result: I've been flare-free for well over a month. I've started to lose weight. I exercise more. For lunch today, I had chili dogs. I'm currently drinking a gin and tonic as I type this. I haven't taken pain medication in MONTHS. The only drugs I take are Elmiron and Tums, if you call that a drug.

I see my uro once every three months, and when I do, it's to get a prescription for refills of Elmiron. I have taken steps to drastically reduce the stress in my life, and I think that has made all the difference in the world in my RECOVERY.

Do I still have IC? Of course, there is no cure. If I eat something too spicy and start to feel a twinge in my bladder, I down three Tums and it goes away and I don't give it a second thought. I'm sure the Elmiron has also played a big role. If I run out of pills and go without it for a day or two, I notice a difference in how I feel.

It wasn't long ago that I was practically crippled by IC pain. I walked with a limp. I could not get an erection. I could not sit for more than 15-20 minutes at a time. I was seriously depressed.

I learned a big lesson from my mother...a woman who had the most deadly form of lung cancer. It was next to her heart, and inoperable. She had her radiation and chemo treatments. She lost her hair. Not once did I hear her get nervous, express concern or even act like the situation bothered her. She kept telling me "I'm going to get better, and that'll be the end of it." Two years later, she's cancer-free. I believe her attitude played a big part in her recovery.

I understand many of you feel a lot of pain. God knows I did. I thought I was going to be a 30 times-a-day urinating invalid. Now...I choose not to participate in the negative aspects of my disease. I don't dwell on what might cause me pain. I live my life. I may get a flare again...who knows? If I do...I'll deal with it, and I'll get better. For now...I feel like I did before this all started, with a few exceptions.

Keep a positive attitude. TELL yourself you CAN feel better. Do whatever you can to reduce the stress in your life. There IS life after IC.

[diane57]

So great that you're feeling better! And it's a really bold approach, too, to tell the diet to pretty much go take a hike. Wow! Hope you continue to feel really great and can eat whatever you want!

How long have you been on Elmiron? Have you noticed a consistent improvement with it? I've been on it about 2 months and I really think it's helping me - like you, when I had to go off it a week for some outpatient surgery, I noticed a difference after a couple of days, then I noticed an improvement a couple of days after I went back on it. It seems like this couldn't be possible, since it's supposed to take so long to work, but in my case it does seem to be true.

I agree, the stress of worrying about everything little thing we put in our mouths probably could lead to an IC flare lol. It's a Catch-22! I find I can eat lots of things sometimes and feel perfectly normal, but sometimes (like during hormonal flares, you're lucky that as a guy you don't have those to contend with) the tiniest amount of citrus or whatever can make my bladder very sulky. Ugh.

Please keep us posted how you're doing; love reading these success stories!

[mom_in_ma]

Glad to hear your feeling better! How long have you been on the Elmiron? Me doctor has mentioned that her patients have had great success with it.

[classics]

Your message has inspired me. Thanks for writing that. Sometimes I know a food/beverage is going to bother me. So is having sex. But since I have burning all the time, constantly, I've sort of come to terms that if I eat or do something that makes me worse for a while, I just deal with it. Making these kind of choices is personal. I agree that stressing over the diet is not a good idea. It probably hurts worse than the foods themself.

[emilyrose197377]

I am glad that you are starting to feel better.


Take Care
Kim

[massagedoula]

I have a random question for you...
What sort of Tums do you take? I only found artificially flavored berry or mint....are there non-flavored ones?
Also, are you sure that you have IC and not PFD or a non-diet related disorder? Because I tried the same thing that you are doing and I couldn't deal with the increased urination and pain that going off the diet caused me.

[sleepyangel30]

I'm glad you are doing well. Stress play a role in my ic too. Since I cut out all the stress I'm doing much better thank god.

[Trying2Cope]

Wow...I wasn't anticipating all the responses. I'll try to answer all the questions.

1. I've been on Elmiron about 7-8 months.
2. I was diagnosed with IC by my uro based on my symptoms.
3. Diet DID help me, especially after I was first diagnosed. I think the reason I am able to eat whatever I want now is because the Elmiron has had time to work.
4. I eat the mint-flavored Tums. I remember when there were just "plain" Tums, but I can't seem to find those anymore. The fruit-flavored Tums has citric acid. I don't eat those. Why tempt fate?
5. I think for some people, diet makes all the difference. For others, not so much. I think I fall somewere in between...it helped at first, until the Elmiron had a chance to kick in.

Here are some of the things I ate today: hamburger with ketchup and tomatoes, fries with ketchup, nacho cheese flavored Doritos, a can of Dr. Pepper (yeah, it was a junk food day) and bacon and eggs. I actually forgot to take my Tums today. I feel fine. I usually try to eat better than this, but hey, sometimes you just need a damn burger.

This isn't for everybody, and I'm not suggesting everybody suddenly pitch their diet and eat things they KNOW will make them flare. I'm just saying this has worked for me, and I think my state of mind, along with Elmiron, has made the difference. Oh, I used to flare after eating certain foods...big time. Even now, I don't think I would eat a peanut butter and jelly sandwich. The last time I had peanut butter, I flared for days!

[ICNDonna]

Omigosh --- I'm glad you seemed to get away with all the junk you ate, but I urge other ICers not to try it!

I'm really glad you are doing so well on Elmiron.

Donna

[Trying2Cope]

I'm not recommending this for other IC'ers. I'm just saying this approach has worked for me. Sometimes I eat something and I feel a twinge of pain that says "you shouldn't have eaten that", and I'll take an antacid. I have not had a full-blown flare for a few weeks.

I have also started walking. I probably walk 2-5 miles a day. It seems to help with any pain, and I have started losing weight, which is a good thing.

I still do not eat tomato sauce or peanut butter. My family had spaghetti tonight. I had linguini and white clam sauce. Oddly enough, I seem to be able to eat raw tomatoes.

[green_the_fish]

Hi...
I'm glad you're feeling better, and it's really cool that you shared it with us. Success stories rock!
I'm kinda like you: diet didn't do so much for me. I dunno if it's because I have some other disease that isn't IC, or because of meds, but I'm trying not to freak over it anyway. I just eat whatever now, as long as it doesn't have caffeene (sp?) or alcohol. But I'm too young for alcohol anyway :lmao:
I often hear of new studies highlighting the body-mind connection, especially in regards to chronic illness. I guess that's the power you've harnessed, in your own way. I hope I can be calm and relaxed about my health someday, too. Way to chill out :)

[Trying2Cope]

Thanks. Maybe this info will help someone else. For the first time in weeks, I took an ultracet the other night because I had some pain. I think it was from a marinade my wife used on the rump roast we had that night. The next day I was fine, so it wasn't a full-fledged flare.

I recently started having an occasional diet soda. I used to drink several a day. Now, I just drink one every other day, and I make sure I drink plenty of water.

I'm trying to get to the point where I won't even have to take the Elmiron anymore. I have been looking into alternative therapies, such as aloe vera gel and glucosimine, which people take for joint pain. I have heard some people have had luck with these. The only reason I would want to ditch the Elmiron is because of the side effects I have been experiencing with it, insomnia and weight gain. I'll let you know how it goes!




Hi...
I'm glad you're feeling better, and it's really cool that you shared it with us. Success stories rock!
I'm kinda like you: diet didn't do so much for me. I dunno if it's because I have some other disease that isn't IC, or because of meds, but I'm trying not to freak over it anyway. I just eat whatever now, as long as it doesn't have caffeene (sp?) or alcohol. But I'm too young for alcohol anyway :lmao:
I often hear of new studies highlighting the body-mind connection, especially in regards to chronic illness. I guess that's the power you've harnessed, in your own way. I hope I can be calm and relaxed about my health someday, too. Way to chill out :)

[MelissaJ]

I agree about not stressing out too much over what to eat. for the most part I don't worry about what I am eating with a few exceptions (i.e. tomato sauce, oranges, lemons, and caffeine) other than that I go for the gusto. But I also don't eat junk food very often and am a lacto/ovo (eggs and dairy) vegetarian so that eliminates all meat. I think the biggest problem, like you said is obsession. I know there are things I shouldn't eat but if someone invites me for dinner I'm not going to force them to give me a lsit of all the ingredients in their planned menu before I agree to come. I just ask about the few that I know are no-nos.

[mayray518]

Glad you are doing better. Elavil ended up saving me. I think stress plays a role also, but it was impossible for me not to be stressed out after I got IC. No one believed me, I lost my job (and I was sole support), I lost my condo, etc. so how can you not be stressed out over that. The one thing IC has taught me is I dont sweat the small stuff anymore. A lady ran into my car the other day and I was a little annoyed but my girlfriend who was with me said "How can you be so calm over that." I told her "Once you go through IC everything is trivial." Years ago I would have moaned and groaned over a car accident. It made me a stronger person.

[Regina06]

TRYING TO COPE

WOW I DID THE SAME THING AND IT WORKED OVER 2 MONTHS AGO.

I eat whatever I want and nothing bothers me and don't need any pain pills.

[auntienance]

Hello there! Let me first congratulate you for your positive influences. I am still in denial about my IC. I have grown up with UTI's my whole life . . . and most of them were "true" UTI's. I still can't believe I have a chronic condition with no cure. I was finally sent to a Urologist in 2000? I really can't remember. All I know is after having an cystoscopy, etc., I was told yes, I had IC.

When it comes to relationships, I am just afraid of how to approach telling a gentleman about having IC . . . and what their reaction will be to such an unknown disease and their response about having sex.

After reading your profile, this may help others get a different perspective . . . my grandmother also had lung cancer and emphysema. She was not a candidate for surgery and elected to have only radiation therapy. Because of her positive attitude, my grandmother lived 3 YEARS before dying from the disease. Statistics show most lung cancers patients do not live after 1 year with the disease. She had a different approach to her terminal illness; in her mind, she thought of ladies on white horses marching through her body to help fight her disease. I guess she would be a good example of how to survive for such an extended period of time while
beating the odds for a terminal illness. She did succumb to the disease; however, I know IC is not terminal. I guess its important to use whatever copying strategies work for each individual.

I guess your email helped me too. Having IC can be a real pain (no pun intended); stressful, etc.; however, knowing there are far worse illnesses and diseases out there without the aid of antibiotics or medications is quite something else. THANK YOU!!!

[Dixiefireball]

:hi: auntienance and :welcome: to the ICN. it may help you if you take a look at the ic diet and the ICN handbook at www.ic-network.com/handbook sending you hugs and prayers
Rhonda

[auntienance]

Rhonda:

Thank you so much. I really have been stable on my regimen. I am currently taking Elmiron and Ditropan XL. The combination of the two medications together seem to be working OK. I know everyone is different and reacts differently to medications.

[jeanann2]

WOW me too Tryingtocope!!!! I decided I was not going to have this thing...and well it works 80% of the time. I do drink lots of water and eat a good healthy diet. I have very little stress in my life. When I do happen to get some stress like mom broke her hip and came to live with me and daughter came home the same time to have a baby...yup after that was all over FLARE big time....

The flare happened mainly because when I am under stress I eat the wrong things ie sugar and diet cola.....I dont drink them any more use to drink 4-6 a day...now its water water water oh and coffee with no prie lief.....however I have felt lately a slight beginning of a flare and I nip it right in the bud...I start the DMSO treatments...take prelief and get on here to remind myself of what works.....I am far from an invalid and when I first got this thing in December of 2000 I was devastated. It took a while to get it under control but like you I decided I was NOT going to let it rule my life. I also suffer from fibro and I hurt ALL The time but I work out and live mostly a very active life. I am going to hurt and I know this so i can hurt being active and living or I can hurt sitting alone at home and so I made the decision to live. IT has taken a while to get to this place and to learn about these illnesses and how to manage them. This site has been a saving grace it gave me sooo many wonderful ideas....

[auntienance]

I was so glad you responded. I like ALL of the foods you are not supposed to have while you have IC. I LOVE Italian Food!!!!!, Yes, I am Italian, but I don't do much cooking. Do you find there are some foods that are worse for you. I feel like my FLARE ups are so unpredictable. I can't always figure out what might have caused it! Is there anything they can do for your fibro? Are you talking about fibromyalga? . . . .Take Care

[icuspeak]

I am glad that my doctor gave me info about web sites to go to for info and support. I am going nuts with worry about every aspect of this disease. My husband tells me to chill out but it`s hard to do. I have urgency and pain all the time but it gets sooooooo much worse during and after sex. I have to use bladder sedatives for days afterwards
Maybe if I changed my attitude about things like a lot of people have I will do better.

[jeanann2]

hello,
yes i am talking about fibro.....I exersise and strech, yoga and yoga pilates....like I said the things I do is stay away from diet cola, and I drink tons of water a day over 100 ounces...water is good to flush thru the badder and rid it of the acid build up. Any way I hope this helps you :)

Jean Ann

[mayray518]

Just be glad there are many strong women out there like Jill and all of us who have written our stories and made this disease be known. If we "forgot about it and stopped talking about it" as I have been told to do by some people who dont have it then there would be no websites or articles in magazines or no women who suffer from IC to turn to. There are the doers and the ones that want everyone else to do for them. Thank God we are the doers.

[PamIvanicki]

I'm AMAZED at how much better I have felt since I stopped stressing over every little thing. This disease has a HUGE psychological component to it Like my first uro said, the worry, fear and stress are often worse than the symptoms themselves. Boy was he right. :bonk:

[Stephanie2004]

I'm doing much better too, now that the medicine has had some time to work. Also, starting a new job helped me relax about my bladder (my classroom is next to the staff restroom), but I'm still following the diet just in case. I thought that giving up all those foods didn't bother me anymore, but the other night I suddenly reverted to having a "food" dream. (Used to dream about chocolate constantly when I first started the diet.) I dreamt I was in a candy store, tempted to try goodies I knew I shouldn't. Then the shop keeper (in my dream) said that if I ate the right candy, I could be cured. All I ever get now are a few twinges, so I feel like I'm as good as cured, except for the candy/spicy cravings. (The treat I wanted most in my dream was crystalized ginger.) If I someday decide to branch out a bit from the diet, I'll try it during summer vacation.

[fnylady65]

It is so helpful to hear all your stories. I have been on elimiron for 3 months and I have been sticking to the diet pretty well..it is nice to hear that some people are able to eat lots of different things and not hurt. I am so afraid to eat anything different because I am worried about pain. Thanks for your encouragement.

[doexpect3]

I did it my way. after 5 months of bleeding I found
a herb that stop my bleed after 3 day of taking it.

I had fibroids really bad but I did it my way I used
herbal extract to shrink them they are all gone. I will keep them gone.

[Trying2Cope]

Hello all. It has been awhile since I've added anything to this thread, mainly because I've been feeling fine. I did try the aloe vera juice, but it did not work for me. I also bought some colostrum capsules, because I read there might be an immune system component to IC. I haven't really tried that yet.

I did suffer a setback fairly recently, but not because of food or anything. I even attended a reunion where there was MUCH smoking and drinking, and I still felt fine afterward.

No, the setback came when my Elmiron refill got screwed up by my insurance company. I was not able to get my refill, and I went a week without the Elmiron. That week proved just how much that drug has helped me and how large a part it has played in my recovery. I reverted back to my flares and had to go back on pain medication. I'm still fighting to get back where I was.

I have started working out and lifting weights again. The weights don't bother me, but for some reason situps and crunches do. I guess that puts too much pressure on my bladder. I just grit my teeth and work through it. I have managed to lose some of the weight I gained after I started taking Elmiron.

Still fighting the frequent insomnia. My uro said he doesn't think that it's caused by the Elmiron, but I disagree.

So, for now, I guess my advice is STICK TO YOUR MEDS, get some exercise and try not to get too stressed out. I'm still feeling much better than when I was first diagnosed. I'll get over this hurdle, too.