Is this "normal" for IC

[StephN]

Hi,

Hoping for some input. . . . . . . I found out a couple months ago I have IC. I went on the Elmiron immediately and have now been on it for a little over a month, as well as I did try Naproxen and Elavil but neither provided me with any relief in fact I was retaining urine (unable to empty my bladder on my own) so I didn't think it would be good to be on either until I got that figured out as I believe a side effect of these can be retention or unable to urinate.

I have been following the IC diet strictly for about a month. Although to be honest just in the last two weeks I have given up coffee totally. I was having just the one cup a day but was told that could make the difference between getting out of this flare and not so I have stopped that as well. I have had three installations done but they don't seem to help. Not sure how many you need to get relieve from them. Does anyone have any idea? Do they work? I find after them I cannot void on my own for about a day or two.Does anyone else experience this? I'm just trying to figure out if I should continue with them or not. It just doesn't feel like there are alot of options really to choose from and I really want to get this under control.

I am in constant pain and discomfort and have been now for well over a month. I sometimes don't know how I will manage if I don't get some relieve somehow. Any ideas? My biggest issue seems to be my full bladder feeling constantly, very heavy, full , sore, burning. I always always feel like I need to pee and usually can't. I just got a script for tylenol with codeine have tried them once and didn't do a thing.

Also is it normally to have a flare last this long if you're eating right? I'm feeling like this will never end.

Appreciate any comments.
Stephanie

[Zygala87]

Stephanie Elmiron sometimes takes months to work. I would ask my Doctor for a stronger pain med. I used percocet once per day for about a month. Now in year four I only take one maybe once a month or less. I found a muscle relaxer helped greatly as well. I am one who found relief by having a Hydrodistention. Not all people do. Maybe a sit down with your Doctor explaining how difficult a time you are going through might help. I doesn't help you to say there are better days ahead. You need some relief now. My Family Doctor seemed to be the most help for me. I hope you have one and he/she can understand. Keep us posted. We care. Hugs, Ziggy

[Skynard]

I am finding relief with the Cystoprotek and DH Aloe Vera since I have a hyper sensitivity to regular meds. I do take 1/2 Percocet as needed. I use sitz baths w/ 1/2 C Epsom salt for burning as needed, also Crisco for burning at nighttime when needed. I have had two DMSO cocktail installations which made me worse. I have had two Marcaine cocktail installations, which helped a lot but had side effects (light-headedness) but come to find out that it was not the Marcaine, but the others they put in to make up the cocktail contain preservatives. To my understanding, there are so many different types of cocktails, you just have to keep trying them until you find the right combination. I have only been diagnosed since July and I started out on a scale from 1-10....a 12. I am now between a 2-3. I was in a constant flare from May 26th to the beginning of October. It takes time to settle things down. I also have IBS which I now know flares when the IC flares. Give yourself time to make these things work. I know when I tried to do too many things at once, I had no clue as to what was hurting or helping me. I went back to basics, went on just one RX med, but added the DH Aloe and started a journal. This journal includes what I ate, how I slept, how my cycle affects me, my emotions for the day, the meds I take, etc. I take this with me to the doctor along with a list of questions already made out. I also take someone with me as a note taker and just an extra set of ears. My goal is to not allow IC/IBS to neither define or defeat me. I take one hour at a time and have lessoned my expectations of myself and those around me - which helps with my stress, which adds to all of this.

I wish you well on your journey. Feel free to PM me anytime.

P.S. on the installations...if you do them, have them use Lidocaine for the numbing of your Urethra, a non-latex pediatric cath and ask them about using Pyridium the night before.

P.S.S I was given a script for Tylenol with codeine. I could not pee at all. Seems that is a side effect of the codeine. If I take it at all, I only take one, but the pharmacist suggest that I avoid the codeine and just get the regular Tylenol gel caps, which are stronger anyway.

God Bless

[ICNDonna]

Elmiron can take six months or longer to be effective, but there are some who post here regularly who have been helped enough to be able to lead normal lives.

It can take a while to find which treatments/medications are most effective in each individual ICer, but the good news is that most of us do --- and most of us feel good most of the time.

Warm hugs,
Donna

[StephN]

Thanks for the comments. It does seem to help to hear others experiences and realize that a flare can last for months but there is hope that it will go away. I think my big problem is I feel overwhelmed with what to try next and then I get depressed because it feels like it is never going to get better and of course the constant discomfort doesn't help. I am thinking I need a better pain killer just to help get thru things till it gets better (because it will!). And perhaps the codeine is affecting my ability to pee although the instillations always do that as well. Not sure why.

[irfran]

Hopefully, the Elmiron will kick in soon for you.

I did notice you tried Naproxen which is a anti-inflammatory. Many of us don't do well when taking anti-inflammatories. I took Celebrex and it made my bladder spasm.........was running to the potty every ten minutes.

I have had good luck with Cystoprotek....it kicked in the third month I was on it. I still watch my diet and am okay with an occasional bad food. I just try to not eat two bad things in one day. That is just looking for trouble for me.

[Iris]

Hi there, do not give up hope, I know it took three months to even find out what was wrong with me, finally after the hydro/cysto and a torn bladder I was told I had IC. I tried Elmiron and it did not work for me and several antidepressants which did not work. Finally by trying different combinations my Nurse Practitioner I had at the time and I got the winning combination for me, I am on Effexor, and Elavil and Ambien at night and Ultram for pain. So far it has worked very well for me and I use Thermacare heating pads if needed. I was diagnosed in 2002 and so far so good. Hope you can find the right combination that will work for you, I know how hard it can be and painful. The IC network was the one thing that helped me so much when I was first diagnosed and though I do not come to the forum as much as I did at the beginning, my heart and my thanks go out to Jill for starting such an incredible and caring support group. Hang in there my friend, Iris.:flower::hi:

[StephN]

I seem to be hearing lots of positive things about cystoprotek. I'm thinking that may be worth trying although I am in Canada so I think it will be something I may have to order online. We don't seem to have access to alot of the stuff.
I guess I'm just very confused as I seem to be having so many issues at once. For example my bladder is full all the time or I should say feels full. I'm not even sure anymore when I actualy really do have to go to the bathroom although sometimes it gets so bad so I try and can't and literally 5 mins later I try and go. Often I can't go at all and have to use a catheter. It just seems like more than one issue just with that alone. Then there is the stabbing like pain that seems to come and go without and rhyme or reason.
A pain killer would be great to just take away some of this discomfort but that is not going to fix the problem. I feel right now as if I'm just burning my tires so to speak. I haven't tired anything new and just don't know what would be the best to try. I would think you can only try one thing at a time and then you have to give it a fair shot so you're looking at a lot of time just spent on one thing that may not even work.
The Elmiron is the only thing I am still on and I'm starting to wonder is there anyway the Elmiron could make my symptoms worse by chance? Has anyone had a bad experience with it or mostly that it just works or doesn't? Instillations I am currently doing but things definitely get worse for a few days after but I keep plugging away at it. . . .hopeful, well sorta.
I found out that certain things do bother me as Naproxen did and the tylenol with codeinne I believe did as well.

[Hope22]

I know exactly how you are feeling, I think we all do. I was diagnosed with IC in August 2009 and I was lost. I have seen four urologist whom have adjusted my meds each time. Is there any chance you may actually have a UTI? I know IC mimics UTIs so it is hard to tell, but you could at least have your doctor check. Never let your doctor tell you, "You have to wait till the meds kick in" Go see another doctor if they do that. One did that to me when I had a lot of burning and pressure. So I looked up another Urologist and he prescribed Neurontin and that totally fixed my nerve problem that is related to IC. I have a lot of uretha discomfort. It's annoying but you get use to it and manage. Mine has calmed down a lot and sometimes is completely gone. I can tell you that stress, for me, has a huge impact on my IC. You will get better. It is depressing, it brought me pretty low, but after I cried all I could I got stronger. Oh, one urologist told me when I felt like I could not urinate to sit in a warm bath. I use to have to do that and it would help. I'm currently on Elimron, Neurontin and Hydro (something) PM me and I'll get the name of it for you if you need it. I'm also on Lexapro for my anxiety but I was on that years before I got diagnosed with IC. I use to take Elavil and oxybuton which slowed my urine. Since I've been off of it my urine is like normal. Please fill free to PM me. I am new to this too but we can all help each other. May we all go into remission!

[crkshnks79]

I seem to be hearing lots of positive things about cystoprotek. I'm thinking that may be worth trying although I am in Canada so I think it will be something I may have to order online. We don't seem to have access to alot of the stuff.
I guess I'm just very confused as I seem to be having so many issues at once. For example my bladder is full all the time or I should say feels full. I'm not even sure anymore when I actualy really do have to go to the bathroom although sometimes it gets so bad so I try and can't and literally 5 mins later I try and go. Often I can't go at all and have to use a catheter. It just seems like more than one issue just with that alone. Then there is the stabbing like pain that seems to come and go without and rhyme or reason.
A pain killer would be great to just take away some of this discomfort but that is not going to fix the problem. I feel right now as if I'm just burning my tires so to speak. I haven't tired anything new and just don't know what would be the best to try. I would think you can only try one thing at a time and then you have to give it a fair shot so you're looking at a lot of time just spent on one thing that may not even work.
The Elmiron is the only thing I am still on and I'm starting to wonder is there anyway the Elmiron could make my symptoms worse by chance? Has anyone had a bad experience with it or mostly that it just works or doesn't? Instillations I am currently doing but things definitely get worse for a few days after but I keep plugging away at it. . . .hopeful, well sorta.
I found out that certain things do bother me as Naproxen did and the tylenol with codeinne I believe did as well.

Hi there ! I have never tried cystoprek , but I have tried Urelle and that helped me alot when combined w percocet( narcotic pain med) ! And what your experiencing is retention , when you feel like you have to go and cant ! Thats is such a horrible feeling , at least you do have a catheter to use on your self , so you dont have to go to the hospital everytime you have to pee ! With a lot of IC'ers pain meds are some of the main meds that give us back our quality of life . No they will not " fix things" nothing will , but they do help you get thru the horrible pain ... I have heard of a few cases where people had retention problems because of the Elmiron , the only advice I can think to tell you is to talk to your doctor , some doctors will tell you that some things are " impossible " but thats NOT TRUE , I have a decent amount of experience when it comes to have weird side effects to meds when my doc have told me " oh that doesnt happen w this med " or " thats impossible " . Every patient is different and therefore so are the side effects that come w medications and treatments . The instills made me flare for the first few days after I had them done , I knwo a couple people that that has happened too . In the end instills did not work for me , sometimes that just dont help some people , you may be one of them . Usually you'll see an improvement in your symptoms within 4 to 6 weeks of starting them . I can take meds like naproxen or motrin , they made me flare and retain , tylenol I can take w no problem but codeine does make me nauseous and makes me burn and retain , so it couldve been the codeine and not the tylenol ? I understand your feeling like your "spinning your tires " , so many of us feel like that , and its even we have been diagnosed for many years , this is such a tough disease because there is no guarantee , just trial and error ] . Hang in there , you'll find your combo , it might take time which sucks ! I would ask your doctor about a stronger pain med to take as needed and also about the cystoprek or urelle and hopefully they will prescribe them for you and you'll have some relief !!! Take care sweetie !
Lauren

[StephN]

Lauren,
Thanks for the words of encouragement. As well as your comments about the instillations. I was debating about wether I should stop them or keep trying. I have only had two. I think I should give them a fair shot since you mention it could take up to 4-6 weeks. My uro I think really isn't to familiar with IC as she said I should feel instantly better with them. Actually I feel a lot worse for two days after but by the third day a little better. A pain killer I'm realizing is a definite must although again my uro thinks I will become addicted or spacey all day so she isn't very keen on it but I will just have to stand firm on this as what I'm getting from people with IC this is a common problem. Urelle not sure what this is but I will research a bit before my uro appointment this week. . . .
I am glad for this site as I am unable to find a self help group around here and I truly believe that who better to help someone with IC then another person with it.