Down to 1/4 cup capacity - maybe time for bladder removal?

[ICLori]

Hi, I've been in a flare for two months. I had a good 4 month remission with Elmiron, but the year before that I was in a flare 99% of the time. I am worried that my flare will continue, and become like it was last year, with me flaring 99% of the time and in a lot of pain. Even Percocet doesn't take it away sometimes.

Anyway, I've been keeping track of voids/capacity.

My voiding has been 40-50 times in a 24 hour period, generally, and my capacity seems to be just under 1/4 of a cup before I have to go urinate.

If this flare continues, and never goes away, and my voiding/capacity stay the same, would it be reasonable to look into bladder removal?

I am going to the pain management clinic in a month to see if they can help me, but I'm wondering if it wouldn't just be better to get rid of this darn bladder.

Thank you,
Blessings, Lori

[ICNDonna]

I do agree that this is an alternative you can discuss with your doctor.

I know that if my bladder is irritated, I urinate small volumes very frequently, but my actual bladder capacity right now is about 250 cc's --- Hopefully, the pain specialist will be able to help you.

Warm healing thoughts,
Donna

[ICLori]

Thank you, Donna, I sure hope so too because it's just unbearable at this point. I think that if I could just get the pain under control, and drop down the frequency/urgency to a more manageable level, I'd be okay.

I just have to hold on till July 27th. If I can just get reasonably comfortable, I won't want my bladder out, but I feel like I need to do something, that just living with this inflammed bladder without pain relief isn't any good.

I have some hope that the pain clinic will help me, because I got some PM's from people who said their pain clinic helped them alot so I am hoping it will be true for me too.

I'm not a drug seeker, I don't WANT to be on drugs, it's just that I need some relief from this, it's unbearable.

Blessings, Lori

[Katrina]

((((((((((((((((((big hugs))))))))))))))))
We will help you make it to the 27th....I am very sorry things are so hard for you. Sending you warm loving thoughts.


:kiss: :kiss:

[ICLori]

Thank you, Katrina. I asked my husband to read some documents about pain and IC and pain management, and he's fired up now.

He said if they don't help me at the pain management clinic, he's going up the chain of command, filing complaints, etc.

There is plenty of literature to show that IC pain is quite severe, and it is clearly in my records that I have not gotten relief from the standard therapies, and my flares last months instead of weeks.

If all of that together is not enough to convince the docs I need help, they are just being unreasonable and we will make a real stink about it, if they don't help me.

Blessings, Lori

[lotsofgirls]

Hi Lori,
When the pain clinic got my pain under control I had a significant increase in capacity and decrease in frequency. I hope the same thing can work out for you,
sending hugs,
Cath

[Teri]

{{{{{Lori**********I have a huge bladder capacity but when I'm flaring you sure wouldn't know it. Do you self cath at all? For me I found that when I'm in a flare where I have to pee every 15 minutes, I cath before I leave the house. That way when my bladder starts screaming, I KNOW that it's empty and I can get the things done that I need done.

wishing you the very very best:kiss:

[ICLori]

Hi, Teri, I do empty my bladder completely even when I'm flaring - I self-cath to check - but it doesn't take my kidneys long to produce another 1/8th of a cup of urine and bam there I am again in pain....especially since I try to stay hydrated since I am prone to kidney stones.

Or do you mean, wearing a foley catheter and collection bag for trips etc.? I have really considered doing that...

Blessings, Lori

[kadi]

Hi there,
Do you mean waking capacity or under-anesthesia capacity? When I had a cystometrogram done, at 200ccs I was bawling from the pain.
But under anesthesia my bladder held 650cc's & that urologist wasn't sure I had IC because of that volume. (My bladder does have red veiny streaks, mostly in one area.) I rarely void more than 2-4oz at a time, which my new uro says is not normal. Based on the photos, voiding diary & symptoms all together, I got diagnosed.

I'm not ready to have my bladder removed, but I do like the idea of lifting it out, dropping it off at the uro's office, taking a rental for the day & coming back to pick it up later -shiny new and working well. Heehee.

[Judith56]

Hi Lori, sorry you are having such a tough time right now. I know when things get so bad, it is natural to want the offending part removed once and for all. From what you have written you have been able to get relief from Elmiron and other means, so hang on and give a few more things a try. See if you can get your appointment moved up, maybe they have a cancellation list that they call people who need sooner appointments? I had my bladder out over 18 years ago, but in my case my doctor was the one who brought up the subject. Has this ever been discussed with your uro? Just remember it is permanent- there is no going back and some people continue to have problems even after surgery. Even though I had an excellant outcome from it, I do get infections. It is not something to do without trying every available option. I really hope you feel better soon, and if you do ever get to the point of needing the surgery, I will be here to answer all your questions.:grouphug: Judith

[songbird7]

I am so sorry you are going through all this. I think they will help at the pain clinic. You are in y prayers right now. Gentle huggs, blewsings and much caring.
Songbird:kiss:

[songbird7]

I hope you could make out my reply full of typos. I am flaring right now and concentration isn't the greatest. I meant to say many blessings. Lots of love,
Songbird

[Rowena]

I know how you feel, I was there. I decided I wanted my baldder removed.

Problem is, I also have irritable bowel syndrome so they cannot make me an internal bladder. I was seeing a Pain Specialist whom I had been seeing for over 2 years. He had given me methadone and fentanyl, neurontin, clonazapam, and some other antidepressant I cannot remember right now.

My husband, the analytical one, decided I needed to see at least three urologists to make this decision. We saw a very reputable one in Houston and he said that I was, "end stage and there is nothing left to do except remove the bladder." For some reason that scared me really bad. I saw a really well respected urologist, who actually diagnosed me, to get his opinion. He said that "under no circumstances will I remove your bladder or anyone else for reasons of IC. Bladder removeal should be reserved for bladder cancer."

Then I saw the very well respected Pain Specialist in Houston and his recommendation was to try the interstem.

To make a long story short, get lots of second opinions before you have your bladder removed. I'm in remission now for the first time in three years. That means that for three years I had hurt constantly and stayed in bed and sitting down more that any other position. I'm glad I did not have such a drastic surgery and I'm glad I found Algonot and it worked for me.

Hang in there and don't do anything during really bad pain that has lasted a long time.

I will add you to my prayer list.

[ICLori]

Thank you, Rowena. Your story makes me want to try the Algonot...does it take long to work? It's kind of pricey, my hubby will choke if it doesn't help me....

Blessings, Lori

[ICLori]

Hi, Rowena, read your story, I decided to order a trial 3-month pack of the Algonot 5 in one - I am keeping my fingers crossed!

Blessings, Lori

[mayray518]

Lori, I am so sorry that you are going through such pain. When my IC was at its worst I was going 40 times a day but had 800 ccs capacity (which is normal) but I had chronic inflammation and petechial hemorrhages; so a normal capacity does not rule out IC. At one point I was so miserable (this was before elmiron was approved) that I begged a doctor to remove my bladder but he would not do it. I dont know if they have any new kind of surgeries now. Donna would probably know that. I remember they used to make a neo bladder out of the intestine but I dont know if they do that anymore. Any way I hope you find something to relieve the pain. I am praying for you.

[ICLori]

Thank you so much, MayRay!

I am so excited because I just went to my uro today and he took me seriously! He really does care. Now I feel bad about being so cynical about doctors :(

He scheduled me for a hydrodistention for next Tuesday (oh I hope it gives me a few weeks of relief, wouldn't that be heaven?) and gave me a big script for percocet (50!) which I hope to be able to save as much of as I can for the trip to Montana that I made plans for before I knew I was going to be in a flare. I was soooo stressed out and worried about, how was I going to sit on the plane, stand in security lines, ride in cars, with this bladder having to pee every ten minutes like this, so much pain . You know, it sounds so trivial to say, "I need pain meds because I have to ride on an airplane and stand in long lines" but my goodness when you are flaring bad, you really CAN'T do those things, am I right? Not without pain relief.

Now I'm scared that my bladder will look fine under hydrodistention and I will be told, it's all in my head...LOL...I don't know why I'm afraid, I know my symptoms have gotten lots worse over the past 4 1/2 years since my last hydro, and even back then at the start of it they saw a polyp on my bladder base and tons of the glomerulations, and my bladder was bright red.

Do you guys ever have worries like this too, that some doc will have reason to believe you are lying or insane? I worry about that a lot. I second-guess myself. Today after my doc visit, my bladder isn't hurting as much as it was before. So I am thinking, maybe I shouldn't have bothered him, maybe it's going to go away again for awhile...and I feel sort of ashamed.

Oh and he gave me a referral to a uro-gyn who might be able to see if there are other things we can try, see if my endometriosis is affecting my bladder, etc.

And I still have my pain clinic meeting for 27 July.

So I think things are going to be okay! As long as my bladder LOOKS as bad as I FEEL you know? Then he'll see what I've been going through, for sure.

Thanks everyone for so much support.

Blessings, Lori
P.S. I found out, my capacity in the in-office cystoscopy was 250cc's is that good or bad?

[Rowena]

Lori,
I had seen 4 urologists ( was diagnosed by a ob-gyn, unofficially, he told me I had to see a uro, but he was 99.999 percent sure just from hearing what I was going through that I had IC) 4 Internists and finally went to a pain clinic. I did not want to go, resisted on every level of my being. But...he has done me more good than all the others put together. He finally sent me to another Pain Specialist who sent me to another. But after all was said and done, pain specialists have helped me the most. I hope you have the same experience. Let me know.

:pray: Rowena

[ICLori]

Thank you so much, Rowena!

I'm feeling hopeful about the future. It's easy to because my bladder isn't hurting right now (ah hydrodistention) LOL!

Just had my hydro today, doc said he didn't want to say it was an end-stage case just yet but....

He also said he's seen one or two worse cases in his career but mine was right up there. My capacity is 400 cc under anesthesia.

He got very concerned for me after he saw everything, started talking about interstim, bladder removal if an end stage case....

He also went to talk to hubby and told him, "she NEEDS to go to pain management"

And he gave me 40 more percocets on top of the 50 he gave me last week....

So my IC is being taken very seriously which is a nice feeling! And it's weird, but it was good to hear mine was a bad case, it kind of confirms that what I was experiencing wasn't just all in my head.

Blessings, Lori

[Judith56]

Lori, first of all I am sorry your IC is so bad, but I am happy that your doctor is taking you seriously. It sounds like he is going to be very compassionate if you need it. I know what you mean about being afraid that they will not find something wrong and things being all in your head. I still get like that, so many times I end up waiting till things get so bad that it makes the situation worse. Anyway, if you ever do get to the point of needing the surgery, I have had most of them. I had my bladder out 18 years ago and would be more than happy to answer any and I mean any questions you may have. Hugs, Judith :hi:

[louise]

Hi, can someone please tell me what Algonot is and what it does for IC. Thanks.

Louise

[Rowena]

Louise,
Algonot is a 'food supplement'. It has been developed for the purpose of rebuilding that 'gag layer' we IC'ers are supposed to have lost somehow.

I will just tell you that I was on it for one month and my pain nearly stopped. I have a severe case of IC, one urologist even called me 'end stage', and said that the only thing left to do is remove the bladder. I'm so glad I did not do that. I still have a small capacity bladder and may always, but at least now I can go two hours without going to the restroom and I sleep up to three hours at a time at night.

I've had lots of things done to me; bladder distention, interstem surgery, DMSO treatments, and the list of pain meds that I have taken is so long you don't want to see it. I'm not even sure I could remember them all. I've had IC for 8 years. In those eight years, I've had maybe three remissions, non lasting this long. Algonot may or may not be the reason I am finally in remission. If not, it sure is a strange coincedence. I am so thankful for Algonot.

Hope if you decide to try it, you get the same good results.

Rowena

[ICLori]

Thank you so much, Judith! When I first came down with IC I was afraid of bladder removal, I didn't want that but now I'm at peace with the idea.

When/if it's time, I'll come on over to that board and learn what I can and probably ask a gazillion annoying questions, LOL.

Blessings, Lori