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For those of you that have had IC for a while, does it seem to be a progressive disease? Meaning do your flares get worse the longer you have IC?
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Actually, it's usually just the opposite. I do much better than I did during the time just before and after I was diagnosed 32 years ago. I think it's largely because I have found which foods and drinks are a problem and which treatment options work best for me.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool -
Yes, me too! I feel so much better now than I did my first few years with IC. Once I found my treatment combination that works for me (see below my name) & what foods/activities bother me, I can manage it much better.
I work full time without problems, attend church most weekends, hike, exercise, travel modestly, wear jeans - none of which I could do the first year I was sick. Things are almost normal now...
Sending a hug & letting you know there are better days ahead.Kadi
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
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I agree with Donna. I feel much better then when I was dx. Information is key in learning how to find YOUR triggers. KathiOne Day At A Time
KathiComment
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Basically I have no problems that I can't handle now. So even though I will have this forever that is not something that worries me. My urogynecologist thinks my IC will not progress futher becuase I was diagnosed early and I responded to treatment. All I had to do was learn what to look for and not let it get ahead of me.TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
I post to encourage and offer total support for rescue instillations.
Find me on facebook: L. Clark Thomas
LouannComment
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I Agree
I agree with the others that I am much better than I was 8 yrs ago! I found out what foods, drinks ect that send me over the edge like Donna said. That seems overwhelming at first but it is doable. I also discovered what therapies helped me which was a long journey and one I thought was never gonna get any easier, but by the grace of God, these boards help and my persistence, I can get a small reprive every now and again. With my instills, I don't flare as often and they are not USUALLY as painful!! Every once in a while I get a flare that reminds me of the old days and that makes me so very thankful for what good days I am given now. I have other issues but that is a whole different post. When I start flaring and stay really bad day after day again, I schedule a hydrodistention. I know those don' t help for everyone, but they do for me and I am very grateful for those also.
thaks
leeshelComment
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I actually seem to be getting worse as time goes on. I have been following the IC diet, have taken atarax, pyridium, tried elmiron but had to many side effects, and am on lyrica now and finsihed my second intillation Friday and am still in alot of pain.
Alot of women do seem to get better as time goes on it seems though. I have no idea why I am not getting better and just getting worse. I guess everyone is different with this disease and how it effects us.
JenComment
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For Jen: I know how difficult it can be when you are just beginning treatments, but please give the instillations a little more time before you give it up. I know it took me months to feel better at first. And when I started instillations they were painful for the first few before I could see they were helping. Hang in there --- it will get better.
Sending warm hugs,
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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Hi Donna.
Thank you for the reply. I wont give up on the instills yet. I just dont get how I feel sooo much worse. I talked to my urogyne this morning,I had her paged becasue I thought maybe I had an infection. I told her about my installation Friday and told her that when I got home after 2 hours and was only able to pee out 6 ounces, but when my hubby cathed out the rest, he got out 15 and half more ounces. She said that I probably over extended my bladder and maybe that is why I have more pain. She said from now on, not to drink anything to much before and after the instill.
She told me take a couple macrobid antibiotics today just in case of infection, though she said she did not think I could have one since I took a macrobid before the instill. Still she said she thinks I am sensitive to the instills. I mean I just hate the fact that I cant pee out the stuff and have to cath it out. It makes me think that is not normal and my body is reacting to it.
Thanks again for replying Donna, I appreciate it. Hope you are having a good day. It is raining here in Chicago.
JenComment
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Wait a little longer
Hi Jen,
Donna is right and you need to wait just a little bit longer. It sometimes takes longer for some of us that others. I sure hope they start to help you soon. It is a hard job for any therapy or instill to repair those potholes in our bladders.
thanks
leeshelComment
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I love "Meggie" what a sweet dog. How old is she? And Jen, I agree with Donna and Leeshel!
Katheryn
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I am one the crazy odd ones. My IC has progressed and gotten worse over time. However, my life has continued to go on despite some of my physical challenges and some social things than have gone down as well. Welcome to the jungle.
Hugs,
Barb
(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
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Babs,
You also sound like a strong one. I am so sorry your symptoms have gotten worse. I have had bad flares that remind me of the old days when i first got this illness, but I do go into remissions....I hope you do...some. I wonder if there have been studies on the percentage who do in fact, get worse.
KatherynComment
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