IC again after 13 years of Remission

[Chocolat57]

Hello, I'm a Newbie here..........nice to meet you guys.

My Story:

I had chlorpactin treatments every 3 months for 18 months back in 1993/94 for IC. DMSO, HYDRO, MEDS did me no good. Finally after one of the chlorpactin treatments I just never had to go back.

I had a Heart CAT SCAN WITH DYE CONTRAST done last Wednesday and BOOM.................it is back with a vengenance. I felt it rush to my uretha...and the tech said it would make me feel like I had to GO, but I never dreamt it would send me into an IC TAILSPIN.

I have had SMALL, very SMALL bouts of it.......very light.......since 1994, but it was always controlled with that glass of soda water and diet.

This stuff has come on STRONG with the dye and I'm so depressed already I can barely speak, not to mention the extreme pain/burning/going/urgency.........legs throbbing, lower back and everywhere else from my waist down.

I CAN'T BELIEVE IT..............................I just can't believe it.

HELP !!!!!!!!!!!!!! What are some natural things you guys are doing ? I don't want to go the DRUG gammit again. But I will do the chlorpactin treatments in a heartbeat to get out of this pain again.

UGHHHHHHHHHHHHH !!!! :woohoo: :toilet:

[kadi]

Hi Chocolat! I'm so sorry that happened. How maddening!
I'm using the more traditional route to treat my IC, so hopefully someone else will come along to help with the alternative medicine ideas.

These are the only supplement ones I know:
There is Prelief, a calcium supplement, you can take with food to neutralize acid. Some people also use TUMS to ward off a flare.

Just wanted to wish you welcome and a quick return to remission.

[Sher E]

I just received my order of Gotu Kola (natural herb), I'm hesitant to try it for fear of a flare. I've yet to try Prelief since I'm not sure when exactly you are supposed to take it (with every meal, with food you "think" will flare you...who knows?).

What are chlorpactin treatments?

Let's hope it's just a nasty bout and you'll be ok soon enough.

[Chocolat57]

All I know about Chlorpactin is that they had to put me asleep to do it, just like with surgery. DOC said if they didn't I wouldn't be able to stand it because it would burn or sting sooooo much.

He said it was hardly more than BLEACH they were putting into my bladder.

I was INSTANTLY BETTER. Could get up and go for 3 months on one treatment as though I never had it. Then it would flare up again.....and I'd go back. This happened for about 6 treatments over 18 months and then I never went back because I got well. REALLY !!!

It's the only thing I've ever heard of getting rid of it.

ALL other treatments and distenstions did NOTHING for me.

He called it a CHLORPACTIN TREATMENT !

[blondie45]

That is fantastic that you had instant relief with the chlorpactin. I had that treatment also about 15 years ago but only had 2 treatments. I would say that I also was in somewhat of a remission but still always knew my bladder was there and always had to watch what I ate. It seems now again I am in the worst flare I have ever had. I am not even sure that they still do the chlorpactin treatments at all. I don't think I had enough relief to consider it again since it was like an operation and you had to be put out with anesthesia and I was sick when I woke up from the anesthesia.

[Ginny]

I am sorry your symptoms have come back. I am hoping it is just temporary. I also just had the same test done and it is normal to feel the dye in that area. I was told that ahead of time.

Ginny

[Chocolat57]

Well, that's what I was thinking. They'd have to pull my DUSTY ole records from way back then and my Doc has retired yada yada. SO I'll try to pull myself out of this flare before I go through all that ya know. I don't know if they still do the treatments or not, but they'd have to pull the formula out for me..............cause it really helped me.

[Chocolat57]

Ginny....have you had more trouble since that test with the dye ?

[ICNDonna]

I too hope your flare is a temporary thing. You'll want to be certain you find out exactly what was injected so you won't ever have that again!

They should be able to dig out the old records and there are a few doctors out there who are willing to use clorpactin.

Sending healing thoughts your way,
Donna

[windwalker]

Hi Chocolat, sorry you are "feelin it" again. But at least you found a good place for support and info. You asked about alternative treatments, maybe search Marshmallow Root Tea, theres info about it on these boards and all over the internet. There are other things like baking soda in water, tums and water, slippery elm bark, aloe vera, L-arginine and gotu kola (that flared me but as you know what hurts one doesnt hurt all ;) ). Take care hope this "flare" comes and goes mighty quick for ya.

[Chocolat57]

Blondie, they've come a LONG way baby as far as putting you to sleep. Rarely, rarely if ever does anyone get sick now because of what they use. VERSED. It's a wonderful sleep with NO side affects for most. I always looked soooooooo forward to it, because I also have Lupus and Fibro, so to be out of pain for just a little while was GREAT.

I suppose my treatments built up on me after having so many of them.

Maybe that's why yours didn't last as long, but did help.

BLESSINGS

[Chocolat57]

I haven't had this in so long I can't remember all the pain and symptoms

My lower back, bottom (vaginal) and legs are killing me all the way to my feet. Can't stand for long at all. Seems like I remember all this.

Does your lower back AND LEGS HURT ?

I'm soooooooooo miserable..........boo hoo hoo

[Briza]

Chocolat
So sorry that you're IC has come back to haunt you! I hope you find some relief soon. Lower back, hip, and leg aches and pains are some of my most frequent symptoms. I know how you feel. I'm feelin' it today, too. I was doing well for a while but had some Thai food and lots of it over spring break and haven't quite been myself since then. :( I was bad, my own fault. I hope you recover from this soon and get back into remission.

[mom2kk2006]

I really do feel for you.

Were kinda in the same boat, although I never had remission, they just put me under thinking they were cotarizing some endometreosis and said there was done found I had stage 2 IC. Agggg. Now I have no freeking idea of where to start, what to eat, drink-I'm living on water and melons and ham. I'm got myself into a state of sheer depression too. I really don't even know where to begin to eat, take or "change my lifestyle" Maybe we can work together.

[MarthaB]

I was doing well for a while but had some Thai food and lots of it over spring break and haven't quite been myself since then. I was bad, my own fault.

I had thai food a few weeks ago too, NEVER AGAIN!!, the pain isn't worth it!!
I also get the hip and leg pain, my legs feel like lead, especially first thing in the morning, I have to take a couple of ultram to feel at least a bit more normal, I get so sick and tired of feeling like this all the time!!

Mom2kk, be careful with ham, it is listed as a irritant food!

[Vampireness]

Hello, I'm a Newbie here..........nice to meet you guys.

My Story:

I had chlorpactin treatments every 3 months for 18 months back in 1993/94 for IC. DMSO, HYDRO, MEDS did me no good. Finally after one of the chlorpactin treatments I just never had to go back.

I had a Heart CAT SCAN WITH DYE CONTRAST done last Wednesday and BOOM.................it is back with a vengenance. I felt it rush to my uretha...and the tech said it would make me feel like I had to GO, but I never dreamt it would send me into an IC TAILSPIN.

I have had SMALL, very SMALL bouts of it.......very light.......since 1994, but it was always controlled with that glass of soda water and diet.

This stuff has come on STRONG with the dye and I'm so depressed already I can barely speak, not to mention the extreme pain/burning/going/urgency.........legs throbbing, lower back and everywhere else from my waist down.

I CAN'T BELIEVE IT..............................I just can't believe it.

HELP !!!!!!!!!!!!!! What are some natural things you guys are doing ? I don't want to go the DRUG gammit again. But I will do the chlorpactin treatments in a heartbeat to get out of this pain again.

UGHHHHHHHHHHHHH !!!! :woohoo: :toilet:

I am so sorry Chocolat. But yes you should go back for the chlorpactin treatment since it has helped you before. And do wut Donna asked you to, ask about what was injected into you. Go back to your doc and tell him about this.

[Vampireness]

I really do feel for you.

Were kinda in the same boat, although I never had remission, they just put me under thinking they were cotarizing some endometreosis and said there was done found I had stage 2 IC. Agggg. Now I have no freeking idea of where to start, what to eat, drink-I'm living on water and melons and ham. I'm got myself into a state of sheer depression too. I really don't even know where to begin to eat, take or "change my lifestyle" Maybe we can work together.

Diet is really trial and error, you have to elminiate as you go through. Some people can't take of the food listed in the problematic but some are able to. I am really sorry about what your going through.

http://www.ic-network.com/handbook/diet.html#list (here, hopefully it will help)

[Vampireness]

Hello, I'm a Newbie here..........nice to meet you guys.

My Story:

I had chlorpactin treatments every 3 months for 18 months back in 1993/94 for IC. DMSO, HYDRO, MEDS did me no good. Finally after one of the chlorpactin treatments I just never had to go back.

I had a Heart CAT SCAN WITH DYE CONTRAST done last Wednesday and BOOM.................it is back with a vengenance. I felt it rush to my uretha...and the tech said it would make me feel like I had to GO, but I never dreamt it would send me into an IC TAILSPIN.

I have had SMALL, very SMALL bouts of it.......very light.......since 1994, but it was always controlled with that glass of soda water and diet.

This stuff has come on STRONG with the dye and I'm so depressed already I can barely speak, not to mention the extreme pain/burning/going/urgency.........legs throbbing, lower back and everywhere else from my waist down.

I CAN'T BELIEVE IT..............................I just can't believe it.

HELP !!!!!!!!!!!!!! What are some natural things you guys are doing ? I don't want to go the DRUG gammit again. But I will do the chlorpactin treatments in a heartbeat to get out of this pain again.

UGHHHHHHHHHHHHH !!!! :woohoo: :toilet:


What are chlorpactin treatments? Did you find out the formula?

[delie]

hi, I've beenon Tofranil (imipramine hydrochloride) an old style anti depressant for about 18 months and its helped alot, wouldnt have been able to continue workinging withou it, not natural but it made a difference very quickly, good luck delie

[ICNDonna]

Mom2kk, the Patient Handbook (link is at the top of this page) has information on diet. Some have real problems with both melons and ham.

Donna

[Chocolat57]

Well, I seem to be turning the corner. Faired OK.........on our weekend getaway. Glad to have a motorhome with a bed and bathroom is all I can say.

I don't feel like I'm passing gas everytime I go now ..........that's BIG. I'm also not going as often, but can still feel spasms.

I got some prelief and drinking my soda water and lots of water and watching my diet.

I so hope I don't have to get into the treaments again, but will in a heartbeat if need be. I'm going to give it another week.

Maybe it just takes a long time for the dye to get out of your system.

Mostly what I'm left with is spasms with no valium. RATS........that's the only thing that ever helped the spasms for me.

Have a cruise to Alaska in June with hubby to celebrate our ANNI.........sure want to feel better. Maybe I do need to call and make an appt. to get over this. I really think I've been having trouble for a while and thought it was fibro or IBS. I think it has been my bladder all along maybe.

I have sooooooooooo much going on it's hard to tell sometimes.

BLessings and Health to all........CHOCOLAT

[Vampireness]

I think to go to your doc would be a good decision. I'm sorry you have to go through this again. Atleast to help wit the spasms.

What does fibro and IBS got to do wit you going so much, sorry I don't know much about it.

Good luck and keep us posted. I hope you feel better REAL SOON!!!!!!!

[Chocolat57]

It's not the GOING so much.............it's the PAIN. Sometimes it's hard to tell if it's the Fibro and lower back problems, or the colon in spasms (IBS) PAIN that giving me the trouble and pain you know.

I'm beginning to think I have had this lightly but annoyingly for a while. Hopefully this will get rid of some of this lower abdominal pain and Bottom pain.

I made an appt. for next Wednesday.............they're pulling my records to see what they did before. :woohoo:

JUST FOUND A SITE THAT TELLS WHAT CHLORPACTIN TREATMENTS ARE at contient.org

[Vampireness]

It's not the GOING so much.............it's the PAIN. Sometimes it's hard to tell if it's the Fibro and lower back problems, or the colon in spasms (IBS) PAIN that giving me the trouble and pain you know.

I'm beginning to think I have had this lightly but annoyingly for a while. Hopefully this will get rid of some of this lower abdominal pain and Bottom pain.

I made an appt. for next Wednesday.............they're pulling my records to see what they did before. :woohoo:

JUST FOUND A SITE THAT TELLS WHAT CHLORPACTIN TREATMENTS ARE at contient.org

Ohhhh I see. I didn't know IBS causes pain. And it's really good that you have an appt and that they're getting started on the thingies that should be done lol. (Couldn't think of a better word lol)

Oh and I will check out that site. I think I found one other and I asked my doc about it and she said she will look into it. But I should probably check myself for IBS as well, the symptoms seem familiar.

[Vampireness]

It's not the GOING so much.............it's the PAIN. Sometimes it's hard to tell if it's the Fibro and lower back problems, or the colon in spasms (IBS) PAIN that giving me the trouble and pain you know.

I'm beginning to think I have had this lightly but annoyingly for a while. Hopefully this will get rid of some of this lower abdominal pain and Bottom pain.

I made an appt. for next Wednesday.............they're pulling my records to see what they did before. :woohoo:

JUST FOUND A SITE THAT TELLS WHAT CHLORPACTIN TREATMENTS ARE at contient.org

Yeah maybe the full addy would help lol...I gave me some error and some unbladder related sites lol

[icnmgrjill]

Clorpactin is NOT a current therapy for IC because of it's damaging tendency. It is akin to bleach and strips off damaged tissue in the bladder. It can be very painful and is usually done under general anesthetic.

The reason why SOME patients feel better afterwards is because it also destroys the peripheral nerves in the bladder lining thus temporarily killing the pain sensation. But what research has shown is that the nerves grow back overtime... sometimes with more nerves. So, for those newbies out there, please remember that this is NOT a quick fix for IC... and, for many reasons, is no longer considered a therapty for IC.

A few ideas to consider - Let's not assume that this is IC back with a vengeance. It sounds like it's just a very severe reaction

#1 - Modify diet immediately... absolutely no coffees, teas, sodas, multivitamins for the near future.

#2 - Don't jump into anything that could make it worse.. or more irritated. How about asking for a rescue instillation that can help numb the bladder and reduce the irritation. This is new... you won't have heard of this before.

#3 - Think about soothing your bladder first. Perhaps antihistamine to reduce inflammation, and some pain medication to help you get through these days.

#4 - Ask the doctor who ordered the test to help you immediately with prescriptions

With any luck, and I do wish you luck, this might resolve in just a few weeks.... and you'll be back to normal.

Jill :)

[vivig14]

do you think that's what caused the flare? i had that with a sacroiliac injection under flouroscopy. they put a steroid in there too. the whole thing was a fiasco, worst pain i have been in a long time (and i'm talking during the procedure, not to mention the flare up for two weeks after). anyway, the diagnostic part of the test showed no problem with my SI joint, just pain "radiating from the pelvic floor." lovely. i've gotten the flare under control w/diet and some specific relaxation stuff, and initially ibuprofen helped. i'm gonna be really ****** if that darn dye caused my flare up, and will never let them use it again--whatever the heck it is.

oh, and Sheebah in Australia--that dog is sooooo cute!! Maltese mix? Terrier mix? purebred?

I'm a dog nut. stop everyone on the street with the dog. i have an adorable cat. I'll try to attach a pix of her next time. off to work.

[Chocolat57]

I KNOW that's what caused the flare. It started immediately. The next morning I thought I was Passing GLASS if you know what I mean. I could feel the dye when it hit my uretha. It was strong. I was barely able to walk by the 2nd day afterward.

CHLORPACTIN: Well, all I have to say is 13 years FREE and CLEAR OF IC is a pretty good track record in my humble opinion. I do not feel worse for the wear. Just blessed for having had soooooooooo much REMISSION TIME.

[MarthaB]

:) Hi vivig 14, yes my dog Lily is a purebred Maltese, she will be 2 on the 25th of june, I love her to bits, and she is very spoiled, here is a pic my hubbie took of her last week,
http://i30.photobucket.com/albums/c328/sheebah/mumsphotos075.jpg

[MarthaB]

:) By the way if you would like to post photo's or just want to have a look at other people's pics, check out the photography forum.

[fireflicker285]

Clorpactin WCS-90® (sodium oxychlorosene)
Chemically related to household bleach, Clorpactin was an early intravesical treatment for IC and continues to be used on a limited basis, primarily for people who do not respond to DMSO or other therapies. Clorpactin® exerts a detergent action on the bladder's lining, possibly destroying nerve endings. This treatment can be very painful and should be done under general anesthesia. It can, however, be diluted and instilled into the bladder as an in-office procedure. Initial symptom worsening is expected.

I had not even heard of this til now. Found this on the net.
Good luck in calming it down.

[Vampireness]

Clorpactin WCS-90® (sodium oxychlorosene)
Chemically related to household bleach, Clorpactin was an early intravesical treatment for IC and continues to be used on a limited basis, primarily for people who do not respond to DMSO or other therapies. Clorpactin® exerts a detergent action on the bladder's lining, possibly destroying nerve endings. This treatment can be very painful and should be done under general anesthesia. It can, however, be diluted and instilled into the bladder as an in-office procedure. Initial symptom worsening is expected.

I had not even heard of this til now. Found this on the net.
Good luck in calming it down.

Wow that is actually scary....what I wonder is this line "destroying nerve endings"....that doesn't sound good.....how is that gonna help??? My mom got a shock when I said it's bleach......and she said she can see why it hurts alot. I'm surprised it helped you Chocolat....

[Chocolat57]

Didn't help me ..........................got RID OF IT. AND, I'm no worse for the wear. No other treatments helped me and that treatment was better than having my bladder removed.

I'm over the spell with the Contrast dye. So it seems, I have more time under than belt if this thing doesn't flare up on me.

Sooooooooooooooo, it was worth it to me. I never felt anything because I was under anthesia and I just woke up out of pain and without IC.

I was baddddddddddddd, and I was at the point WHATEVER ! I think it's a pretty good tract record with no ill side affects for me. Each to his own !

[Vampireness]

Didn't help me ..........................got RID OF IT. AND, I'm no worse for the wear. No other treatments helped me and that treatment was better than having my bladder removed.

I'm over the spell with the Contrast dye. So it seems, I have more time under than belt if this thing doesn't flare up on me.

Sooooooooooooooo, it was worth it to me. I never felt anything because I was under anthesia and I just woke up out of pain and without IC.

I was baddddddddddddd, and I was at the point WHATEVER ! I think it's a pretty good tract record with no ill side affects for me. Each to his own !


I can understand about just accepting anything.
But it does sound scary, but I don't doubt that I would wanna do it if nothing else works for me....

How are you feeling now?

[Chocolat57]

I am doing fine. Like I said, I'm over the contrast dye test that gave me urethritis for a time, so I'm back into remission.

I think some have scared others about Chlorpactin treatments. Hey, it beats losing your bladder.

Honestly, I don't think the stuff was any worse for me than anything else that was put into my body.......like DMSO, only on the market for humans since the 90's. I mean we us put peroixde and alcohol and all sorts of stuff on our wounds to heal them. To me, it's no different, other than it's burns your badder if you are awake. If I put alcohol on an open wound and I'm awake, it burns like heck, but doesn't mean it's not good for me.

I consider myself BACK INTO MY 13 plus years of remission. If you are suffering, like I was suffering, you'd do anything....and in my case...I did not consider chlorpactin a big deal. It literally HEALED ME..........with no strange or damaging side affects at all.

Hey...........what's not to LOVE. No more IC !

[MelindaP]

Chocolate57,

Glad to hear you are feeling better! I am just curious, did you also feel urgency & frequency? I do not have this, but I have a constant low burning sensation near the top of my urethra. The more H2O I drink, the better. I need to have alot of urine when I go in order for it not to burn badly. I only go like 4x a day. I rarely get bladder pain, but notice I get it more at night after I lay down after voiding.

thanks!
Melinda :)

[Chocolat57]

Wow, you are blessed. I was going every 5 minutes at the worst.........didn't even flush the toilet but every few times to save water..that's how bad it was. I could barely walk from the pain and was all but bedridden from the referred pain to hips, thighs, legs.

I was realllllllllllllllllllll bad with all symptoms. I was actually quite suicidal with it to tell you the truth. I was that miserable.

[MelindaP]

Oh My gosh! And to think you had total remission from the treatment! That is wonderful. I know I should not complain because it is now fairly mild compared to the severe pain that others on the board experience. It is just that I think about my bladder/urethra constantly because it always feels aggravated.
I hope your remission continues forever!
Melinda :)

[DONNAW]

Can You Tell Me What The Side Effects Are To This Procedure?
I Would Almost Try Anything At This Point But I Don't Want To Do Any Thing To Make Matters Worse.
Donna

[Chocolat57]

They put me to sleep.........washed out my bladder with something......then put the chlorpactin in and let it stay just minutes. Then washed it out again with saline I'm sure.

WALA................I was better for 3 months at a time. Then after about 5 or 6 treatments over a period of 18 months, I just never had to go back.

I never knew anything.............was asleep (oh that wonderful versed sleep) and then I woke and was fine. No problems with urination or anything. I got up and went home and lived IC FREE for 3 months at a time and then for 13 plus years now.

I had a terrible reaction to the dye contrast test they did on me for my heart about a month ago, which sent me to this board, but it has completely cleared up again.

I hope you get some help. I was at the point where I'd do anything to get out of that misery and pain.

I have had NO ILL SIDE AFFECTS in all these years. Don't know I ever did it, except I'm not suicidal with IC pain anymore.

[Vampireness]

That's really great to hear Chocolat. My problem is not as bad as you but I just want out because I'm sucidial most of the time, more when a doctor doesn't wanna do what I wanna try. I don't think doctors really see that!!!
I don't experience burning or pain in the urethera so much, but I do if I have very little pee. But it goes away after I drink alots of water and also am taking pyridium to help with that. But too bad I can't take it all the time.
What bothers me is that I have pelvic pain and frequency and urgency. I have also have a really swallon belly, which doesn't really wanna go down!!! I wish all these were gone.

MelindaP - I wish I went 4xs a day!!! That would be so great!!! For the burning...have you taken what I mentioned above? (pyridium) Are you taking anything else?

[di52]

So do you have to stay on the diet and if so how stict? What exactly are they putting in you? My dr. wants to do a cocktail on me he calls it. I don't know what it is. He says he does it in the office with a catheter and I keep it in for about two hours and then pee it out. Can anyone tell me what that is? I am so afraid to have him touch me because I'm feeling pretty good right now just being on the diet and taking my meds.

Dianne
Elmiron twice daily 2-100mg.
Butterbur extract 3 day
ditropan xl 10 mg.
gotu kola with meals
lyrica 50 mg. at night

[Vampireness]

How strict depends on you, some people can't take nothing of the problem food group and some can. So I guess you gotta experiment.

How long have you been on Elmiron?

Two hours seems like way too long!!!

Cocktail...hmmm...does it have anything to do with DMSO? If so, I suggest if your feeling well now not to do it.

Basically, a cocktail is a mixture of couple medications. They are inserted with a catherer into your bladder (painful) that will fill your entire bladder (500ml) and you have to hold that in (will hurt most of the time) then you pass it out (will burn). You got to keep doing this I'm guessing....this cocktail instillations...because one doze doesn't really work. Also after that you will feel like peeing alot and be in pain and will take time to heal and many people have reacted bad to DMSO and since it's part of a cocktail, the chances of getting worse with this treatment could be there. But if I were you and I'm doing pretty ok now, I wouldn't take the chance.

What are your symptoms btw, since your doc wants to do the above procedure? Are you not improving with medication?

Hopefully someone who has done cocktail replies you, I have done just the DMSO.

[di52]

Hi, I went to see the dr. today. He got back my pathology report, which read, cystitis. He said I have inflammation of the bladder but only on the very first layer of the bladder, so he cannot call it IC. He said with diet I could probably control it and in time I can try to go off the Elmiron. But I was thinking on the way home...isn't the Elmiron fixing the lining of the bladder? If so, shouldn't I stay on it a while? He said if I try going off the elmiron and it comes back I can go back on it. I don't think I'm ready to try I told him...so he said I can try the first of June. He said no need for any other treatments right now. WHEW. He gave me the ok to start excercising again...(he knicked my bladder during a cystoscopy biopsy) so he went in to repair it, didn't have to because it was already healing. But...I have a nice size incision now that is healing nicely. So he gave me the ok to begin excercising slowly. He said to try estrogen cream (my gyno had given me) for the "burning" feeling.
Have any of you ever heard of it not being IC, but being cystitis? I have the pathology report in front of me. I'm glad it's not as bad as I thought...he said it could even heal up nicely in time and I would feel better, but to not eat or drink acidic foods. He said to stay on IC diet and try one thing at a time to see what I can tolerate. If it makes my bladder angry to cut it out.
I'm just so happy that he doesn't think I have IC....I asked if he was sure and he said, I'm almost positive, but I cannot say for sure.

[bunnykinb]

I have been on Urocit K and atarax since March 2005. I have no relief. I have also had 2 hydrodistentions/cystoscopy at the hospital. I have had heparin instills in late 2004 and Elmiron instills from July 2005 until Feb. 2006. Treatments done by 2 different uros. I am still having such urethra burning and having to pee every 15 minutes to an hour depending on how bad the burning is. The current uro said since I am allergic to sulfa and seem to be having trouble taking Elmiron orally, the last drastic thing is bladder removal. I am only 40 and have 2 young children. That is not an option I want to take. I have felt that I would be better off dead than to endure this pain, but then I have kids. I wouldn't commit suicide, but the pain is a real problem. I will be seeing a psychologist this Thursday.

The chlorpactin does sound wonderful.

[Vampireness]

bunnykinb - You should stop taking Urocit K, it doesn't help. It says its alkainisation of urine but it has citric acid monohydrate doesn't it??

I have taken this but it doesn't help and it burns. It's no harm since you already feel the burning might as well go off it for awhile and see if you feel any better.

Another thing is the heparin instills, how many times did you do those? Maybe doing them while on Elmiron will help better? How many treatments of Elmiron btw?

You say you been taking atarax since March....I've seen some people say that it takes two months to kick in.

Peeing and having constant burning is really bad and I'm so sorry. But you gotta keep trying other alternatives and I know why you would like Chlorpactin treatment. But my doctor said it's too cruel and it's not available in Singapore so it don't seem to be an option for me...blah....but I haven't tried other things like Elmiron and etc.

Another ICer, mentioned cornsilk being useful to the burning, I am going to try it out so maybe you should too? I also am wondering if you have checked yourself out for infection?

I hope you find some relief real soon.

di52 - That's really interesting....But I have heard it before that I have cytisis and it's not IC but then again they didn't do all the neccessary tests like going into the bladder etc. I just recently asked my doctor which stage of IC I have and she said she can't tell which stage because it's not diagnosed that way. I don't get why not, there are pictures saying mild, moderate and severe. So I don't get why there isn't a way to tell so I have to go back to my original doc who did the hydro who would most likely have the picture and ask her for it and also for her to tell me which stage I am at. However the doc did say there was some inflammation and some bleeding.

How long have you been on Elmiron? If you don't feel comfortable going off it then I don't think you should. What were your symptoms and how do you feel right now? If your symptoms were bad and you feel alots of relief and really well now, maybe you should wait awhile then try to go off it. I would be scared to be honest.

[Kiki B.]

Chocolat,

I just saw that you mentioned you have severe allergies. I don't know where you live, but I started my IC flare about the same time you did. I live near Louisville, KY, and this place is an absolute rathole as far as allergies go. As you may recall, some feel that there is an allergy component to IC. So, it could have just been coincedental that you flared with the dye and it's really due to environmental allergies, or you might need to examine if you are sensitive/allergic to the dye. Do you react to shellfish or Iodine? There is a cross-sensitivity between those and the dye.

I'm new to the board here, and reading all of this is really, really educating me. I have multiple food allergies which were possibly interacting with inactive ingredients in the meds. I needed to take for IC, so I have been severely undertreated since being diagnosed. I now am realizing that it is safe for me to take some meds., so I see the Nurse Practitioner(amazing woman--diagnosed me when doc didn't and used to work at a Pain Clinic) this next Tuesday, and I'm hoping to get some relief. So, needless to say, I totally understand the boat you're in, as I'm there myself, and it seems others are having the same problem right now. And yes, you did read that right, I have been flaring for over a month now. I'm about ready to go insane...Lol.

[marsi4]

Flaring for any amount of time is torture. I had a flare from hell that lasted almost one year. The worst in 33 years. I sympathize and almost lost my sanity as well.

Marsi4

[Kiki B.]

Marsi,

I can't believe you flared for a year. I would go absolutely insane! How were you able to handle it?

Kaylene(a.k.a. Kiki B.)

[Vampireness]

I was really shocked when I read flared for a year!!!
How many times a day were you going? pain? Why didn't you see a doctor or somethin or did you already have treatments?

I have asked my doctor about Chlorpactin treatment and she said she's sorry but they don't have here in Singapore and it's something like it being too cruel to be used. I can see why you tried it, either this or loose your bladder, I'd say I choose this. But since she don't offer it, I'm hoping success with something else or I will have to give up on life, I'm not going to give up my bladder up till I can try all my choices.

[green_the_fish]

Vampireness, I have been taking Urocit-k since August 2005, and I believe it has been a helpful factor for me. I have found two other IC patients on RemedyFind, "Cynnie" and "Romans8:28" (who is also a member here) that thought Urocit-k was very beneficial to them.

Urocit-K does contain citric acid, but so lots of other things. Citric acid is a organic acid, and can be found in almost all forms of life. If I am right, some of the foods on the "okay" list on the ICN's diet guide also contain citric acid.

We are all different; we all react differently to meds. Urocit-k has been helpful for some of us. If anyone reading this is considering going off of Urocit-k, please consult your doctor first :)

[Vampireness]

Vampireness, I have been taking Urocit-k since August 2005, and I believe it has been a helpful factor for me. I have found two other IC patients on RemedyFind, "Cynnie" and "Romans8:28" (who is also a member here) that thought Urocit-k was very beneficial to them.

Urocit-K does contain citric acid, but so lots of other things. Citric acid is a organic acid, and can be found in almost all forms of life. If I am right, some of the foods on the "okay" list on the ICN's diet guide also contain citric acid.

We are all different; we all react differently to meds. Urocit-k has been helpful for some of us. If anyone reading this is considering going off of Urocit-k, please consult your doctor first :)

Green...if it helped you then ok. I was simply making a suggestion from what I have been experncing with that thing. You were hurting and still feeling the same so if it hurts to go off then you could go back it.

People here reading this, are not dumb. And neither are doctors brilliant. So I'm sure they can decide on their own whether they want to stop taking Urocit-K!!!

Jeez don't go off at me for giving you a suggestion! I gave the suggestion to YOU not to OTHERS!!

[green_the_fish]

Green...if it helped you then ok. I was simply making a suggestion from what I have been experncing with that thing. You were hurting and still feeling the same so if it hurts to go off then you could go back it.

People here reading this, are not dumb. And neither are doctors brilliant. So I'm sure they can decide on their own whether they want to stop taking Urocit-K!!!

Jeez don't go off at me for giving you a suggestion! I gave the suggestion to YOU not to OTHERS!!

Perhaps there has been a misunderstanding. I agree that no one here is dumb, and many doctors are less than brilliant. I just wanted to make sure everyone reading this thread, especially the newbies, got a well-rounded perspective on Urocit-k, since I'm sure some are either thinking of starting it or going off of it. I like to see all different points of veiw when I'm finding out about a med. Generally, I think it's playing it safe to check with a doctor before stopping a med, although I understand this is sometimes difficult due to insurance issues and other reasons.

I wasn't trying to go off on you or anything. If I was trying to go off on you, you would know. I like to be direct. But that wasn't what my intention in this case. I only wanted to give my own perspective on the Urocit, and I addressed my post to you because I disagree with some of your opinions about the med. That's all there was to it on my part. If you wish to discuss this further, please PM me about it, so this thread won't get too far off-topic. Ty

[Vampireness]

Perhaps there has been a misunderstanding. I agree that no one here is dumb, and many doctors are less than brilliant. I just wanted to make sure everyone reading this thread, especially the newbies, got a well-rounded perspective on Urocit-k, since I'm sure some are either thinking of starting it or going off of it. I like to see all different points of veiw when I'm finding out about a med. Generally, I think it's playing it safe to check with a doctor before stopping a med, although I understand this is sometimes difficult due to insurance issues and other reasons.

I wasn't trying to go off on you or anything. If I was trying to go off on you, you would know. I like to be direct. But that wasn't what my intention in this case. I only wanted to give my own perspective on the Urocit, and I addressed my post to you because I disagree with some of your opinions about the med. That's all there was to it on my part. If you wish to discuss this further, please PM me about it, so this thread won't get too far off-topic. Ty

No it's ok I wanna drop this.

The list of stuff in the diet is only a guide to me so if it does have critic acid then I'm not going to eat it. If it makes me feel bad then I know it's a problematic food.

Nice of you to explain. :smile tee