What would you do?

[pottywoman]

I pretty much have decided not to do another pee test when I go to my uro next week. The one done this week said my potassium was up high and he said it could be nothing or it means my kidneys are starting to fail. He wants to do another pee test to check and if it is the same then something about peeing in a bottle for 24 hours. I really don't want to do any of it. Plus I would rather not know if there was something wrong. I went through to much for the bladder and not up to going through it for something else. Can't do any of the tests or things without everyone knowing too. It wasn't worth going through what I did for the bladder. Figured my life ended 8 years ago and the IC is never getting better (pain only keeps getting worse) and that will be with me forever. So, by weighing it all out I figured the best thing would be to ignore the last pee test and whatever happens ,happens. I have not kids or husband either.

[emilyrose197377]

I word have your uro take thes tests to find out what is happenning with your kidneys. I know how you feel my kidneys are damaged and my uro is running tests on me on the 16th. You are in my thoughts and prayers.

[pottywoman]

Sorry to hear that emilyrose. Is it from the IC? Did it happen all of a sudden or did you have systoms? I just really don't have it in me to "fight" anymore. I get this tired feeling when I think about it. Hard to explain and I'm probably :loco: in the head.

[emilyrose197377]

they are not sure but it is from all of my infections and the backing urine going in my kidneys and damaging them . they think I am still retaining urine. I will know more after I see my uro less than 2 wks so they can find out what is going on with my kidneys.please do all you can to find out with your kidneys and so they dr. can treat it .dylasis is not fun. If you need to talk I am here. Hope you feel better soon.

:grouphug:

[ICNDonna]

I absolutely encourage you to find out what's causing you to spill potassium. Are you taking diuretics? Even herbal ones? Licorice supplements? I know that diuretics can deplete the body's potassium levels and a deficiency in this area can be serious.

IMHO, it could be foolish to not find out when solving this problem could be one of the easiest ones you've had to deal with.

Sending encouraging hugs,
Donna

[SharonA]

Please, please, please don't give up on yourself. Have the test. Find out what is happening.

Hugs...

[pottywoman]

The only thing I have been doing differently is drinking more water. Was thinking that would help flush everything out. In the past years I really drank hardly nothing. Had an ultrasound done on the right kidney last year because I had pain in my side. Which I have had on both sides for years. All was fine. I have decided not to do the test. Really can't handle anymore and I just guess don't care anymore. What I went through with the bladder with people just was not worth it. Not sure what my Uro will say when I see him next week but there is nothing he could do if there was something wrong anyway. Thanks everyone.

[ICNDonna]

How can you possibly know nothing can be done without knowing what is wrong? I absolutely urge you to go for the test because I care!

Donna

[pottywoman]

If there is something wrong I will have to go to another doctor and I'm not going to anymore. My Uro is the only one who has been able to put up with me and I'm not going to a new doctor and have to worry about making him mad. Or throwing me out. My Uro has helped me on things that don't even have anything to do with the bladder but he can only help so much.

[Baba Yaga]

PottyWoman, I have never seen Donna speak this forcefully in the two months I've been reading the forum. I also always put a lot of stick in her words.

Obviously you are the one who knows your own experience best, and it may justify your pessimism about all of this, but you also sound to an outsider (me) like someone who is paralyzed by a degree of depression that may be interfering with a broader perspective or with your ability to move ahead and take advantage of things available to you, albeit sometimes with some effort.

Like others, you appear to have burned by past doctor experiences that had little medical payoff, so venturing forward may seem sooo not worth the risk and headache.

But I am worried about the pain you are constantly, or so frequently, in and the way you have spoken of before about how it has affected your life so. And I see you are on a limited regimen of things, including ibuprofen, which some other women report as giving them more pain. Could you list the things you have tried before that did not work (some people have this info in their signatures, and I find that in itself very informative) or you were unable to tolerate. Is your regimen that limited by expenses? (I know cystoprotek is not that cheap...)

[pottywoman]

Your're right, I'm tired, lonely and life has been nothing but miserable since the IC started. Pain only gets worse with time and I know the tens won't help after time as well. Doesn't help like it use to either. Ibuprofen I had to stop taking because of stomach pain with it. (I should delete it out of my profile but haven't).

I had to fight it seems with the "world" to get helpe for the IC and nobody will listen to me. (All but my Uro. Why it worked out great with him I do not know). The life I had before the IC is gone. The life I have now I don't want. I have no friends, sisters I have nothing to do with. I had people get mad because I had to keep using their bathroom.

I can't list all that I have tried for the IC. It's too long. Just in pills it would be 3 pages. Basically, I have tried all there is except major surgery which I don't feel good enough for. I had to stop taking the Birth control because I could not handle doing the physical so each month I have that to dread. The BC was a great thing for me. My Uro tried to get it for me but he can't write the perscription for it. He is basically all I have for medical/mind help.

It all gets kind of expensive with buy things for the tens (no insurance for the items I need for it), pills, special hair shampoo/conditioner, rogaine (I have the allopecia as well). It just seems everything medically I hear is nothing can be done. Have a life and go on. They said the same thing for the allopecia when I was in school. All my hair fell out, my so called friends dumped me, doctor said nothing could be done and live my life and maybe some day......I know that had nothing to do with the IC but all life problems involve everything.

I just don't have it in me anymore to argue. My body is tired, my mind is tired and I'm tired. I have no one to help me get through any of the IC or to just help me deal with it. If there is something wrong with the kidneys (which I doubt it...can't just happen all of the sudden) I will have to go through it by myself and I will hear it was my fault. My Uro's fault..I need to find another doctor ect. ect. Just can't deal with it anymore.

I'll survive one way or another. Been drinking extra water. Plus, I don't feel any different then normal.

Life just isn't worth fighting for anymore. What I went through for the IC just wasnt' worth it.

Sorry, I'm such a downer I know.

[Allyoopa]

Hi Pottywoman,
I was just wondering about your med list. I know myself that ibuprofin will send me through the roof, it aggrevates the hell out of my bladder and will start a flare within 20 minutes of taking it. Just a thought! Please don't be afraid of any more testing you know you've been through the worst but I do know that tired feeling and the need to be left alone by the medical profession. I'm going in Thursday for a bladder biopsy and swore after the last hydro that they'd never touch me again. But due to my bleeding they have to make sure everything is O.K. Personally I'd sooner know, I will never give up the fight no matter how tired I get!
Take Care
Adele
:kissing:

[Baba Yaga]

Pottywoman, please don't be sorry: you have been handed so much to deal with. I am just so concerned because I don't even see you on an antidepressant. There are so many new ones constantly being formulated, but also so many available now in less expensive generic form as time goes on. I believe even the misoprostol that some ICNers are trying is available in generic form. Would you be willing to correspond with me about what stuff you've tried? I can name all the stuff I can think of, and you just return the items on my list that you didn't try yet if you can identify any. I figure you would be uncomfortable being subjected to such an exercise publicly....?

You have described your existence as isolated, and you are now even isolated from all but one doctor, and that can only make it harder to address a physical or biochemical rut if that exists too.

You have so much to offer, and more to get out of life too, it hurts to see you so down. And also, to be wondering if there are unexplored avenues that would render your present suffering completely unnecessary.

[Baba Yaga]

Also, I put a lot of stock in Donna's words, not a lot of stick!!!

[pottywoman]

I've been on anti pills and they don't help. Only make me fatter. I probably shouldn't have posted this too. Nothing will change how I feel. Plus with most pills I'm worse off. I get just about every side effect there is. No pills or phyciatrist (spelled wrong) will help now. There is no curing the bladder ever. I'm stuck with it and it will only get worse. I'm just tired out and tired of trying. Have often thought I would have been better off if the bladder had been cancer instead of the IC.

[Janie Miranda]

Mary,
I am so sorry that you are going through this. I know you have been on a diet and exercising more recently. Could this possibly effect your potassium? Please talk to your doctor and I also urge you to get some testing if neccessary. We care about you and are worried.

[pottywoman]

I haven't been dieting or exercising that much to make a difference. My Uro said that it could be nothing and it probably is. Just that if it tested the same this week then another test would be done. When I left I was fine with it. Figured no big deal but then I started thinking and once that starts it is hard to stop it. No one listens to me. I haven't had 5 minutes of feeling fine in 8 years. I don't want pitty, or someone waiting on me hand and foot. Just some understanding that all.

Last year I threw away all the papers in info I had kept on the bladder and what was done. Figured I didn't need it anymore. I can only remember a few of the pills that I had the worse reaction to.

[Baba Yaga]

I've been on anti pills and they don't help. Only make me fatter. I probably shouldn't have posted this too. Nothing will change how I feel. Plus with most pills I'm worse off. I get just about every side effect there is. No pills or phyciatrist (spelled wrong) will help now. There is no curing the bladder ever. I'm stuck with it and it will only get worse. I'm just tired out and tired of trying. Have often thought I would have been better off if the bladder had been cancer instead of the IC.
Pottywoman, I am not letting up yet. I can see how depressed you are. But I also know that it is possible to find relief even after years of frustration. And I know that I tried scads of antidepressants myself and determined that i could only tolerate paxil, but am now on zoloft and OK so far, and am expecting to balance its stimulating effect on me with the neurontin I will be taking (not at full dose yet). And I know that many people require meds for bi-polar to tolerate anti-depressants, which I may turn to as well. And I know that many people who gain wait on some drugs don't gain it on others.

Can you confirm that you have tried elmiron? Have you ever had it in instillation?

What if you tried misoprostol or cyclosporine-A?

Surely you will remember having been on these if you were:

pamelor/nortripylene, sinequan/doxepin, elavil, imipramine

prozac, paxil, zoloft, celexa, effexor, cymbalta, lexapro -- these are known for having fewer side effects than the first list

wellbutrin

What about muscle relaxers, valium, or neurontin?

What about the Pre-lief and CVS calcium citrate?

Uristat, Azo, Urelle, Orocit-K?

Sure some of these can give you some constipation or drymouth, but we are supposed to be drinking extra water anyway, and laxatives and stool softeners are the easiest thing to take.

I will gladly gather up what OTC things that I have some of, or get more or new stuff in the drugstore and come visit you if there is anything there you haven't tried. We can even meet on neutral territory so you wouldn't have to entertain a visitor. Or I could send a care package.

I don't want to set up hopes that would be dashed, but I hope you will find the strength and patience to try a few more things. Especially any of the newer antidepressants. Remember they not only help with mood/perspective/unhappiness when they work for you, but they also have a separate and independent effect on the pain itself.

[pottywoman]

Wendy, I'm going to dust out the cob webs in the brain computer and see what I can remember taking.

Elmiron I tried taking twice by mouth. Each time for 3 months. COuldn't take the side effects...stomach ache, feeling sick, diarrehea, and hair falling out. did try it mixed with the heparin too but nothing happened.

(What if you tried misoprostol or cyclosporine-A?)--THese I haven't tried but think I read about one of them. Isn't there something said that one of these are bad to take?

(pamelor/nortripylene, sinequan/doxepin, elavil, imipramine)--not sure, imiramine sounds familiar...what are they for? Maybe I can remember that way.

(prozac, paxil, zoloft, celexa, effexor, cymbalta, lexapro -- these are known for having fewer side effects than the first list)--I've had celecxa which worked the best of all but gained weight with it. Took it for about 8 months. Uro even said I seemed happier on it and I was. Amytriplyne I gained 1 pound a day with. Effexor I've had. Same thing. Zoloft I just stopped taking. Gained weight with it as well and it didn't help. Some of them my Uro said would not be safe to take but not sure which ones. Plus he can't perscribe them all either.

(wellbutrin)-No, have not had this one, but read it puts weight on too

(What about muscle relaxers, valium, or neurontin)--yes, neurontin I took one pill and could not function. Sat in my chair concentrating on breathing. All I could do was manage to get to the bathroom and nothing more. Valium is a pain medication is it not?

(What about the Pre-lief and CVS calcium citrate?)--Pre-lief yes, didn't do much really. CVS Calcium citrate--no, don't know what it is. Calcium pills? If it is I have tried other calcium pills.

(Uristat, Azo, Urelle, Orocit-K?)--yes to Uristat, Have tried it different times but I get too dizzy (can't stand), sick...I've had all the pills that turn your pee different colors.

Pain pills I have tried but can not tolorate the side effects. Ultram was the worse. Not suppoe to be a pain pill pain pill but it didn't do much for the pain either. Was in bed for 3 days from it.

It's not that I'm getting my hopes dashed. (Once in awhile it happens but I normally bounce back) It's just I can't keep "fighting" the world and still keep my mind about me. No one listens, I can't do the things I use to and yes, I'm not 92 years old but I feel it. Yes, other people are worse off then I am but it doesn't change how I feel...I don't dare to take pills anymore (just the ones I'm taking now). Maybe my Uro can talk me back down to earth when I see him. He usually does but it can take time.

I'm trying to remember what other pills but can't.

[Baba Yaga]

OK, PW. If you remember anything more, let me know by PM or e-mail. Use Pm or e-mail if you want to answer the following questions or comments too. There is no hurry for you to answer -- or, obviously, for you to be considering these things. But since you are so down, and since your thread is about "What would you do?" I'm hoping you aren't completely giving up.

Can you afford to gain any weight? It seems to be keeping you from using some of these meds, but I don't know how serious a problem more weight will be for you physically.

Please clarify if the elmiron you had mixed with the heparin was in your instillations. How long did you take it, if so? Maybe it absorbs better with some amount of DMSO?

(pamelor/nortripylene, sinequan/doxepin, elavil, imipramine) these are all in the family elavil is on. Elavil/amitryptilene is the classic tricyclic antidepressent which IC doctors prescribe not for depression but to exploit its classic side effects, which help pain, and help some people not pee so frequently. We have a whole section here devoted to discussing elavil and antidepressants. A lot of people report getting relief from it. We can look for research statistics on it too, if you are curious. All the tricyclic behave similarly, but different people may do better with different ones. Tricyclics are more likely to cause some weight gain. I'm willing to bet your doctor tried you on elavil at some point long ago.

(prozac, paxil, zoloft, celexa, effexor, cymbalta, lexapro -- these are known for having fewer side effects than the first list)
These are the newer generation of antidepressants -- the SSRI's -- Selective Serotonin Reuptake Inhibitors.
Of these, maybe you could some day give lexapro or cymalta a try some day. They should not cause as much weight gain as the amitryptilene -- which I see now you did take before -- that is the elavil.
the cymbalta sounds like it might help a lot of IC patients because it has some properties in common with tricyclics moreso than other SSRIs.

Wellbutrin helps some people with depression, but works on the neurotransmitter dopamine. I am not familiar with it causing weight gain -- ot could possibly help someone tolerate something like neurontin, but I am not sure. a good psychopharmacologist or pain management professional might be able to address the idea of multiple meds.

What about muscle relaxers, valium, or neurontin
Valium is classically for anti-anxiety but it seems a lot of women use it for bladder spasm here. Muscle relaxants would be the similar (and probably doing something similar to what the amitryptilene does for the bladder -- anticholinergic effects).
Neurontin can be taken in doses ranging from 10 mg a day (for starters) to 3600! So it might be worth a re-visit if you knew how much you had taken that one time. And it might work differently on you now too?

the calcium citrate was something that ICPrincess swears by, along with her Evian water. probably working similarly to the Prelief. She or someone in her thread recommended the CVS brand as relatively free of complicating additives. But if you got no help from the prelief, I don't know how much this will help. Did you take the prelief two with every meal? i think they said you could take it at bed time too. If you really got no relief with it, it makes me wonder if you had bladder spasm issues moreso than straight bladder wall burning from acidic urine....?

One last thing that a doctor just gave me, and ihurttoo-Amy uses is lidocaine patches, and some women here are using lidocain gel, but I don't know if it for their IC flares that often or more for self-caths and/or vulvodynia?

And there are still other things -- you are taking cystoprotek. You could also try Bladder-Q, which contains Gotu-Kola, or take Gotu Kola straight. There is some research on it helping maintain the bladder's GAG layer, and one poster here claims the straight Gotu Kola supplements helped her.

Did you give the Aloe or marshmallow root others are taking a shot?

I hope I haven't gone overboard and started overwhelming you with things you have not in fact tried, but hopefully it would show you that you have options.

The misoprostol is the cytotec that put ICLori into remission after her own long struggle with many disappointments. this is the one that i think is available in generic form, so will be possibly less costly for some than elmiron or many other drugs here whose patents have not expired. You might be a good candidate for giving it a shot since you said you don't expect to be pregnant soon or even ever. Since you are so sensitive to drugs you would have to start out slowly, and hopefully Lori would give you lots of support, as she has been doing for others.

The cyclosprine-A is probably the last 'last-resort' drug, also not appropriate for women who might end up pregnant, but some studies out of Finland have indicated that it had a decent success rate, probably actually better than elmiron (which I believe is also not to be mixed with pregnancy anyway).

As for pain killers -- has the doc ever given you plain old vicodin/lortab? has anyone discussed with you going a more serious route like MS-Contin, or nerve-blocks? These are also things some women have found relief from. But again they may well require seeking help from an actual pain clinic.

Please bookmark this thread you started, if you can't deal with this now. In the mean time, I think a lot of us are cheering you on not to give up.

:grouphug:

[pottywoman]

I read what you wrote and I do have some questions and answers for you but I think I will take a break from it. I'm trying to remember everything and such and my mind is turning to mush. I do really really appreciate all that you are doing to help me. It takes a lot of your time and I'm sure you don't need to deal with my problem on top of yours. I don't know how to bookmark this thread but I should be able to find it.

Thanks again to everyone. I don't feel quit so "life is nothing" anymore. Maybe I can get a list of pills that I don't know if I had tried or not and see what my Uro has to say about it. I will try and pm you about what you wrote.

Thannks again everyone. :kissing:

[SharonA]

The best thing I can do for you right now is give you a gentle (((((hug))))) and let you know that I care. :kissing:

[pottywoman]

Thanks Sharon. I'm still trying to keep going on. Not very good at the moment but I"m trying.

I copies your message Wendy into words so I can reply back. That way I can slowly answer your questions.

May take a walk outside this afternoon since the weather is better. Maybe that will help some.

[pottywoman]

Wendy, I tried to PM you but you are over your limit. I wouldn't go through.

[Baba Yaga]

PW, I cleared some space up, sorry about that. I hope you didn't lose all the text -- my inbox had some space left yesterday, but got filled up this morning, I think. Feel free to e-mail me if you like as well at the address in my signature.

[ihurttoo]

Hello! We haven't officially met, but I am Amy. I just now read this thread. I want you to know that it really touched me. I don't know what to say or do to help you, but I want you to know that I care. I feel your desparation and exhaustion. I have been there too. Boy, have I been there! I was tired of fighting. I was tired of hurting, and I wanted to die. I didnt have the energy any longer to keep searching for a dr who even believed me, let alone one who would help me. I had suffered for four years with no pain medicine, and in daily pain. Drs didnt care, my family didnt care, and after a while...I didnt care! It was the worst and most lonely feeling in the world. I finally got to the point where I didnt want to go the dr anymore either. I mean they never fixed the problem anyway! And most of the time, they didnt even want to believe that there was a problem! But I finally got d/xed and they found that I had extensive endometriosis and pelvic adhesions that had grown thru my bladder. This is the cause of my IC. Once the Drs finally believed me, and I had proof, I thought they would finally treat my pain, but no! I was STILL left to suffer!! I suffered in daily, unremitting, intractable pain for the past 4 years. I truly believed that they just didnt give me anything for the pain because my pain was so bad that pain medicine wouldnt help it. I mean why else would they deny me access to something that could help me?? Why would they deny me compassionate care?? I never dreamed they COULD help me, but just WOUDN'T!!! Then I found this board, and I saw that others with the same kind of pain were actually getting THEIR pain treated!! I was STUNNED!! So, I worked up the courage to go back to the dr 1 last time. Only this time, I was going to INSIST that they help me or refer me to a pain clinic. Well, he referred me, and they got me into one the next week.Now, for the first time in over 4 years, I am now pain free. I am on daily morphine and Lortabs. I also use topical Lidocaine patches, Neurontin, and muscle relaxors (Zanaflex), among other things (see my sig). I take Cymbalta for depression, and it is very effective. I know you are concerned about weight gain. Believe me, it is always a HUGE concern for me, since I am about 45-50 lbs overweight from other meds, and laying aroung all day for years due to pain. But Cymbalta has not caused me to gain any weight at all!! My mom takes Topamax for her pain, and it is also and anti-depressant. It has a fabulous side effect of causing a DECREASED appetite. I would love to try it, but my dr wont hear of it, since I am doing so well on Cymbalta. But maybe your dr might consider it for you. I have told you all of this because I wanted you to KNOW that I DO understand your pain, depression, and hopelessness. But I also wanted you to know that there IS a light at the end of the tunnel. My advice for you is to get to a pain clinic. It has made the differance for me between having a quality of life, and probobly being dead. I also want to encourage you to try anti-depressants again. There are so many out there. I know that you can find one for you, if you keep at it. But if something hasnt worked by about 5 weeks, then get off of it and get a different one. I want you to know that I am here for you if you ever need a friend. I will always talk to you. I will always understand. There is no reason for you to ever feel alone and misunderstood when you can call me. Pm me, and I will give you my phone # and e-mail addy. Please call me or email me anytime you need to talk to someone. I want to be there for you. Your story truly touched me. I want to help you any way that I can. Please contact me whenever you are feeling down. I may not have all the answers, but you wont find anyone who cares more than I do, or wants to help as much as me. I will be praying for you, and sending warm thoughts your way. Sincerely, Amy :grouphug: :kissing:

[pottywoman]

Thanks Amy,
I'm trying to make it through each day now. I have re-done my signiture. I'll ask my uro about the anti pill your mother takes. I really need something now to make it through each day. I'm hoping my Uro can find me something to help.
I see my new signiture was not saved as new so I re-did it.