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  1. #1
    ICN Member
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    Apr 2005
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    It has been a week..since my flare

    It has been a week since my flare began.. I am really getting frustrated..I was diagnosed with endo thro lap back in April. THen I had hydro in June.. He said I had a normal bladder capacity..with some bleeding. He said Possible IC and put me on Elavil 50 mgs and night.. Which I admit I was better I usually flared the week before my period each month.. I didn't this time. It was the week after.. I ate grapes..but I had ate them a couple weeks ago with no problems. I had even been drinking some soda and drinking hot choc. I had endo near my bladder.. I am just frustrated and fed up.. I am 28 yrs old and I just want to feel better.. I am scared that maybe it is getting worse.. I read some of the other peoples stories that are horrible and I think..will I get that bad? Is it going to keep getting worse.. Is there any hope. Sorry to vent.. I guess I am just feeling sorry for myself.. I know I have so much to be thankful for.. I am just frustated. Thanks for listening.

    Dee

  2. #2
    ICN Member SandyRN's Avatar
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    Charlotte, NC
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    It's always ok to vent, whenever you need to!! Don't feel bad about it!

    I'm sorry that you're going through a long flare. It's easy to get very down about it, especially when it seems to go on forever. You may want to try the IC diet, because it really does make a difference with me. I've begun to see what some of my trigger foods and drinks are, and activities that cause me to flare (like sex!)

    Most people will tell you that IC isn't progressive....I'm not a researcher, and I can only speak for myself and my own experiences. In some ways, I've gotten better over time, but there are many lingering symptoms that are more painful now then they were when I was first dx'd. Like the bladder spasms, they now take my breath away.

    Do you have a doctor who can help you and see if you have an infection?

    I hope you feel better soon. I know how hard it is to be in the middle of a flare.

    Take care, Sandy
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    Colostomy surgery due to rupture of lower large intestine (sigmoid colon) ---4\18\09--Had peritonitis, almost died after surgery as I was very sick. Learning to deal with that and get healthy enough for *possible* reconnect surgery January of 2010...if not this surgery saved my life, so I can, and will live with it....happily!

  3. #3
    Support Volunteer traceann's Avatar
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    Michigan
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    Hey Dee, yup, you rant and rave and vent all you like! That's what we're here for, lol. It can help so much sometimes to just get it out, like draining the poison!

    I too would read really bad experiences of others and just dissolve into a puddle of goo over the what-if's... it was horrible. BUT you have to remember, we are all different, just because one person had something happen to them, etc, does not mean it will happen to you! You have to remember that and hold onto it. Work only with what you have going on RIGHT NOW. Don't skip ahead to something you probably will never experience and waste energy you could be using on what's going on with you right now.

    Ugh as much as I hate to say it, your on-going troubles could be from the soda and hot chocolate...both are known bladder aggrivators. If you don't have it already, here's the link to the foods list, the good, bad and the ugly, lol.

    http://www.ic-network.com/handbook/diet.html

    And most of all, remember you will feel good again, you accomplished it before, you will accomplish it again!!!

    Hugs!!!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

  4. #4
    ICN Member
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    Apr 2005
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    219
    Thanks guys.. Knock on wood, sex has never caused a flare..and it is not painful for me.. I have drank nothing but water..and have followed the diet..still with no relief.. It doesn't feel like a bladder infection.. Who knows!!

  5. #5
    Support Volunteer traceann's Avatar
    Join Date
    Nov 2004
    Location
    Michigan
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    7,901
    Hey Dee, that's funny you should say that about sex. It never bothered me either, and I can remember when I was trying to get that huge flare under control and the thought of sex was ridiculous! We went about 2-3 months with no penetration, as I was hurting too much to even want to think about it! But I worried that "oh no, my sex life will never be the same etc.." Wondered if since I had NEVER had any real pain with sex to speak of if I now would have pain...etc. It's a horrible cycle!!! But happy to report, once flare calmed down, sex life back to normal!! LOL

    Hugs!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

  6. #6
    Registered User Oxana's Avatar
    Join Date
    Sep 2005
    Location
    San Antonio, Texas
    Posts
    273
    I agree with Tracey.

    Dee, you should be very careful about diet. Also, it could be very good to find a right treatment for you. You can add Elmiron and Vistaril to your Elavil. This combo can work wonderful for you along with the diet. You really can feel yourself pretty good soon, I mean really. Yes, we are diffrent, don't think that IC is progressive. How do you think you can feel yourself better if you are continue irritate your bladder, by soda and chocolate? Many people have remission all the time. They can eat againe many food wich were a problem in the begining. But I think we should be very careful in the remission too. I'm sorry, I can live without coffee and without another very trigger food, especially after what weare are going through. Just be more creative about food, it can be very yammy even without regular pizza.
    And it's another important thing, what some ladies ignor, we should to keep our urine not acidity at all, more neutral. We can do it with some special medicine. The bladder will heal sooner if the acid not irritate it.
    Don't worry to much, the stress is very trigger thing for bladdeer too. Try to think only about positive things. I wish you get better soon!

  7. #7
    Registered User Amyinagony's Avatar
    Join Date
    Aug 2004
    Posts
    315
    I wish you well soon too Dee. I do agree with the others about the diet, especially when you are flaring. When your bladder is flaring it's already irritated and adding the acidic stuff is buring it more. The only time I have 'a little' of what I shouldn't is when I am NOT flaring and it's in very strict moderation AND with Prelief. Stress can add to the irritation and flares. I also agree about worrying about IC getting worse. Your's may not. I pray it doesn't. Try to think positive, stay clear of the bladder irritants, and try to relax (listen to some soothing music). I know that is easier said then done when you are in pain. Please know that we don't mind you venting. It is good to get it all off your chest. Hang in there.
    Love you all,
    Amy

  8. #8
    IC Friend Kimchi's Avatar
    Join Date
    Sep 2005
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    621
    PIZZA, my worst trigger. And I love pizza. Dee, I too was diagnosed w/ IC very young as most of us were. We are here for you. I just found these wonderful ladies and I am addicted. Diet is important. You can go on the IC diet and then when you are calmed down, start pulling in the "bad" foods one by one and see if it bothers you. Food flares, for me, are easier to deal w/ then say a stress flare. I can calm myself down pretty fast from a food flare, unless it's pizza.

  9. #9
    Support Volunteer traceann's Avatar
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    Location
    Michigan
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    Oh gotta love pizza... I am addicted to me and my Hubby's favorite "neighborhood" restaurant it's like 5 min from our house (and we live in a rural area, it's so hard to explain!).

    I order it with my topping of cheese and veggies-of-choice for that day...and then no sauce on it, but in a small cup on the side. I then sometimes dip my piece in the sauce for just a bit of taste and I am controlling the amount of it that way. Doing this method with my prelief has been heaven for me. I have been doing this now for quite a while...I must say it's even good WITHOUT the sauce at all...sometimes I don't even dip, just enjoy it as is!! It's funny but even my hubby loves it this way!!! (my favorite toppings as of late are:green olives, green pepper and onion - I have discovered I can tolerate the all these veggies pretty well, and really well since they aren't in huge quantities too) Just like for my salads I used to just stick with Ranch dressing on the side, take my prelief and just dip my fork tines in the dressing (the old dieting trick) and then stab my lettuce, gives me some flavor and it's not enough of to bother my bladder!!!

    *sigh* I love food....

    Hugs!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

  10. #10
    IC Friend Kimchi's Avatar
    Join Date
    Sep 2005
    Posts
    621

    Talking

    me too. I miss all the old things I could eat like spaghetti, wine, wine, wine, oranges. Man, I would give my right arm for a sweet orange! This is awful isn't it? Reminiscing about the old days! Hehehe.

  11. #11
    ICN Member
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    What is in Ranch dressing that can hurt us?

  12. #12
    IC Friend Kimchi's Avatar
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    Might be the perservatives. I have never had it bother me. I think every one is different w/ the food flares.

  13. #13
    Support Volunteer traceann's Avatar
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    I think too it's the ingredients in the homemade like Mayo, and probably along those lines in the already prepared bottled dressings. In the beginning I wasn't taking any chances!! LOL

    Yeah, I have hated wine since I was 14 and got drunk on some really cheap wine, lol. Hadn't touched it in years upon years. Then my hubby (then still my boyfriend) convinced me (appx a year before the IC dx) that Sutter Home White Zin was really good, and I'd probably like it....I was very unsure, as even wine coolers could still make me gag...LOL. I loved it! Then we found a Shriaz we really liked, but I still liked the white zin the best...then IC came along...talk about bumming me out. I had only just gotten into wine, had big plans the for this summer to go to the annual wine & food tasting at the harbor in town and all....Nope, no can do....grrrrrrr!!!

    How cruel.....LOL Even now that I am more tolerant of foods, with all the meds I am on I am afraid to drink alcohol!! LMAO!!

    Hugs!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

  14. #14
    IC Friend Kimchi's Avatar
    Join Date
    Sep 2005
    Posts
    621
    the alcoholic in me still pushes me to drink everyonce in a while. I love white zin too. It flares me some.... not like liqour does though.

  15. #15
    Support Volunteer traceann's Avatar
    Join Date
    Nov 2004
    Location
    Michigan
    Posts
    7,901
    Honestly, I can't remember the last time I had a cocktail. Would have been Feb/Mar most likely, yikes! And then I would just have a Jim Beam on the rocks with Prelief and my big old glass of water, lol. That one drink I could make last for 3 hours!!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

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