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10/12/2010 09:32 AM

what works?

helpgertiehelp
helpgertiehelpPosts: 8
New Member

just want to know what has worked for some of you with some i.c. relief. my research and doctors all tell me something different. especially want to know about instillations, how often, how far apart does your particular health care provider recommend? what combinations of med's in the "cocktails?" what's the next step? thanks from helpgetiehelp.......
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10/12/2010 12:17 PM
shamarie6
shamarie6  
Posts: 2805
VIP Member
I'm an Advocate

Hello & welcome to the group!

I would like to start by saying that you have found a wonderful, informative place to come to. There are many people here that can offer up advise for the trials you are facing.

Unfortunately, I can't say anything about instilations because I've never had one, but there are several ladies here that have had them & I'm sure they'll be along shortly to answer any questions you have.

One thing to remember is that all doctors have their own view & opinions on how to treat IC. Unfortunately, there are even some that don't believe in IC, as I have recently found out. The only FDA approved drug that I am aware of for the treatment of IC is Elmiron, but there are other meds that may help.

Feel free to browse around & respond to any of the discussions you'd like to. I wish I could be more help to you on this subject. It's good to have you here! Wink


10/12/2010 01:03 PM
blondee8257
blondee8257  
Posts: 1143
Group Leader
I'm an Advocate

hi helpgertiehelp and welcome to the group! i wish i could help u but ive only had one instill. i had the test, forget what its called, to see if i have ic and it was bad, bad, so he gave me an instill then.

u just have to take one day at a time w/ic, or at least thats what i do! i take tramadol for pain, hydroxyzine instead of elmiron for my bladder, and sometimes i take flexerils for spasms.

i have found that if i wear a tens unit in the afternoons i dont have spasms as bad as normally. when things get rough i always hit the tub, warm baths make me feel so much better, and i keep my heating pad handy also. i have ic, fibro, athritis, and pfd so sometimes its hard for me to tell what is hurting where!

some of the other ladies has more experience with the instills and will be along shortly to help answer ur question.

shamarie is right, all drs have different treatments...if u can find one that is ic friendly that is! hope u have found one that is willing to work w/u and give u the answers u need.

in the meantime its great to have u here and if u need anything dont hesitate to pm me or ask questions on the board...we have a great bunch here!

Post edited by: blondee8257, at: 10/12/2010 01:04 PM


10/12/2010 03:55 PM
AutumnSunset
AutumnSunset  
Posts: 1263
Senior Member

Hi Helpgertiehelp!! Just want to join the welcoming committee. I think you will find some answers and help with this group.

I have fibromyalgia and ic. I've had fibro (according my rheumatologist) since 1995, but I was not diagnosed with ic until August 09. I went through a horrible summer before I found relief from my ic. The urologist, whom I was sent to after weeks of serious bladder pain, did not "believe" in ic. He tried various meds and even did a cystoscope - just to announce that my bladder looked normal. He never mentioned the possibility of ic, although 3 other doctors who treated me for the bladder pain (before the urologist) told me they thought that I had ic. On an annual visit to my GYN I discussed the problem. He sent me to a nurse practitioner who specializes in ic. She performed a KCl test to help determine if I did have ic. (If you do have it, your bladder will burn a lot. A normal bladder will not respond in this manner. This is just one method used in conjunction with symptoms to help diagnose ic.) My KCl test was followed by an instillation.

I believe that I had 2 instills each week for about 2 months, and with each one, my pain improved. Then my NP began tapering down; in February I was released to have the PRN. Since Feb, I've only had to go back for 1 instill. Unfortunately I do not know what mixture of drugs she uses.

My NP also prescribed Clariton (1 daily) and Pre-Lief with every meal. Pre-lief is found in the anti-acid section of most pharmacies. It is a supplement which helps remove acid from foods. I take 3-4 Pre-lief with every meal and snack. I'm not on an ic diet, but there are certain foods that I KNOW cause a flare. (Examples: grapefruit, plums, some spicy foods) I try to avoid those, but the Pre-lief allows me to eat certain foods that I might have to avoid. I've even discovered that after a meal (with includes my 3 Pre-lief), I can take another 2-3 Pre-lief if my bladder begins burning/hurting - it even helps me "after-the-fact." Wouldn't want to be without my Prelief!!

Tongue

During severe flares, the TENS unit and my heating pad help a lot. I believe that the instills helped get me through the severe ic attack last year. Now I even have some pain-free bladder days, but ic is just waiting for an opportunity to rear its ugly head!! Different things work for different people, so there are a lot of trial-and-errors before finding what works for each of us.

Sorry that you have ic, but glad that you found this group!!


10/12/2010 09:01 PM
nkier

Hi!!! Welcome to this friendly group. Unfortunately instills did not help me. I'm on SSDI because I have not found any relief. I don't want to be negative and it seems like most patients are not as bad as I am. I am not affected by food but the meds have added 45 lbs to my body. My inactivityy due to pain when I sit, stand and walk is a problem too. I am here any time you want to talk. I'm working off of a Blackberry phone so I won't be adding those neat welcome pictures. The other women did a good job. I guess the biggest thing I can say is some things help some people but not others. My frequency is down during the day but quite active during the evening. At least I can make it through a store and not have to use the bathroom at times. My pelvic floor dysfunction is a big problem for me and I am quite medicated and living my life as it is. I hope you find some relief and the other women have some ideas for you. My name is Nickie and I love to help others!!!

10/17/2010 02:11 PM
helpgertiehelp
helpgertiehelpPosts: 8
New Member

how do i know when i click on one of these discussions if you are talking to me or to someone else. all of your comments, niki (is that right?) seem to be answers to my concerns but i can't tell who you are talking to. i am very very new at this and very very green, so i need all the help i can get. helpgertiehelp

10/17/2010 04:16 PM
blondee8257
blondee8257  
Posts: 1143
Group Leader
I'm an Advocate

they r to u, lets say for instance u go to the group home..u will see all the discussions there...when u click on one u will see at the top of the page who started the discussion and as u scroll down u will be able to see who has answered that person. sometimes we get carried away with a different subject all together in midstream...i hope this helps..if not let me know and i will try and show u a different way.

10/17/2010 05:29 PM
tracy6878
tracy6878  
Posts: 575
VIP Member

hello and welcome gertie! glad to meet you, wish it wasnt for IC though...i had IC issues from about 16, but i wasnt actually diagnosed until 2008...my urologist did my cystoscopy and he did a hydrodistention and i have had this done anually ever since...i just had it done friday before last again...it never seems to do too much for me but i hope this time will be different...i take elmiron, prosed ds, hydroxizine, and zantac for my bladder and recently the dr gave me percocet for the after procedure spasms...i was given a tens but it seemed to stir my bladder up even more, but it can help with back pain...i use my heating pad ALL the time, one of the microwave kind, i even take it if i go to a friends or my inlaws...stay AWAY from alcahol, coffee, any thing with a high acid content, try to remove caffeine from your diet...a cook book i have said to try to remove all processed foods and as much red meat as you can from your daily diet...i tried following it to the letter and it helped a little but not enough to warrant a change to the foods my family enjoys and to make 2 meals instead of 1...the processed foods i stick to as i know when i only use whole foods everyones energy is higher and we just feel a bitt better and it isnt as hard for our bodies to work through...you will have to find what works for you...i cannot have the regular instills beacuse they cannot seem to make one that im not allergic to, we havent tried them since im not into the possiblity of a reaction...are there any specialists around you? i live in pa and in philidelphia there is a dr who specializes in IC and he is supposed to be a big deal...hes about 3 hours away from me so i havent been yet but my dr has reffered me to him...drs are SO important! please take some time and become your own advocate!!! it is so important that you know as much as you can and that you stand up for the care and treatment you deserve! <3 welcome gertie!!!
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