Questions for Judith, et al

[PaulMC]

Hi. I read some of your posts. I hope you don't mind a few questions.

First, let me tell you about my situation. I'm a 43 year old man. I (probably) have IC, and have been dealing with it for about 14 years. It started as episodes of painful urination with decreased flow, lasting 1-7 days or so. I'd get them maybe 2-3 times a year. Over time voids became chronically painful, my bladder capacity diminished and the variety and severity of pain symptoms increased. I also developed intestinal symptoms -- sometimes arrestingly painful cramping, diarrhea alternating with constipation.

One of my first diagnoses was a functional obstruction of my bladder neck. Basically, this means that the sphincter muscles of my bladder neck weren't relaxing as they should when I tried to void, so my bladder had to push harder to get past this bottleneck. Other symptoms followed.

My current status is that my bladder has a capacity of less than 200cc (about 5.5 ounces) during hydro-distension under general anesthesia. Day-to-day, the capacity is about 50cc. I void 50-75 times a day, usually in severe and increasing pain. My doctors are now advising bladder diversion surgery.

I'm writing you to ask if your symptoms were anything like mine. I've read of others for whom diversion surgery resulted in continuing problems. All that I've read still prefer their current status to what they had before the surgery, but to say the least, for many people it doesn't seem to have been a "magic bullet".

Since there are so many variations in symptom profiles with this -- from pain with no diminished capacity to diminished capacity with no pain to both -- I'm trying to determine if there is any correlation between what type of IC one has and the outcome of diversion.

Anything you could share would be much appreciated.

Thanks very much. I wish you well.

Yours,

Paul

[Judith56]

Hi Paul,
I had IC since I was very small. I had decreasing bladder capacity over time. When I finally had my bladder out my functional capacity was 30cc's. I had urethral pain, I was incontinent without even being aware it was happening until I realized my pants were wet. I only had pain when I neede to urinate if I had to hold it. I also found that if I didn't get to the bathroom very quickly my bladder would "freeze" and I had a really hard time urinating, though when I relaxed it would come out. I also had bands of fiber growing in my bladder, most likely some type of scar tissue like an adhesion. I had my bladder out when I was 30. They took out the bladder and urethra and my urethral pain was gone as soon as I woke from surgery. There is no way to predict if you will have a good outcome. All I can say is that from my experience reading and emailing others, it seems that those whose main symptom was frequency seem to have better results from the surgery than those whose main symptom is pain. I had good results. Yes, I do get infections and they are severe enough that I need to be hospitalized for IV meds, but I would rather deal with them every two months or so than have to deal with my horrible IC problems on a day to day basis. Because I had several major surgeries for the IC (4 big ones) I have a problem with bowel obstructions. I have had two that needed surgery and two that I was just watched in the hospital and they cleared on thier own. I first had an ileal conduit- where you wear an external ostomy pouch for 6 years and then because the conduit had lots of problems I had it converted to an internal ostomy pouch. I still have a stoma ( opening where the urine comes out of) that I keep covered with gauze and tape. I catheterize it several times a day. I have had this for 12 years and am very happy with it. Hope this helps! Judith

[PaulMC]

Thanks to Judith & May. I'd like to delve into this a little further.

My bladder is chronically inflamed. My experience is that I do have post-void relief of pain, and that pain is initiated as my bladder fills. I presume that, my GAG layer being thoroughly compromised, any amount of urine that begins to expand my bladder tears the lining, causing pain. I say this because I am relatively pain-free when catheterized. So it seems it is expansion, rather than the simple presence of urine, that causes pain.

Voiding is often painful also. I must very consciously relax in order to void, and as I approach the moment of release there is a concurrent building of pain, which reaches a crescendo at the moment of release. Usually, though, during the void itself, while I may experince a kind of acid-burning in specific parts of my urethra, more prominent is what seems to be referred neural and muscular pain.

Does all of this seem consistent with some form of IC? My diagnosis was one of exclusion. Some years ago, I consulted Lowell Parsons and was not able to tolerate catheterization for a potassium tolerance test. Just as well; I suspect it would have hurt like hell. In any case, based on my history and symptoms he diagnosed IC.

I write all this because I, too, have been given the impression that if pain and inflamation are prominent symptoms, there is a very real chance that any pouch or neo-bladder could become similarly affected, or that "phantom pain" is likely to occur.

So, again, does anyone here know of anyone with symptoms like mine who have had this surgery? If so, what has the outcome been?

Thanks so much.

Paul

[snowgirl]

Originally posted by Judith56
Hi Paul,
I had IC since I was very small. I had decreasing bladder capacity over time. When I finally had my bladder out my functional capacity was 30cc's. I had urethral pain, I was incontinent without even being aware it was happening until I realized my pants were wet. I only had pain when I neede to urinate if I had to hold it. I also found that if I didn't get to the bathroom very quickly my bladder would "freeze" and I had a really hard time urinating, though when I relaxed it would come out. I also had bands of fiber growing in my bladder, most likely some type of scar tissue like an adhesion. I had my bladder out when I was 30. They took out the bladder and urethra and my urethral pain was gone as soon as I woke from surgery. There is no way to predict if you will have a good outcome. All I can say is that from my experience reading and emailing others, it seems that those whose main symptom was frequency seem to have better results from the surgery than those whose main symptom is pain. I had good results. Yes, I do get infections and they are severe enough that I need to be hospitalized for IV meds, but I would rather deal with them every two months or so than have to deal with my horrible IC problems on a day to day basis. Because I had several major surgeries for the IC (4 big ones) I have a problem with bowel obstructions. I have had two that needed surgery and two that I was just watched in the hospital and they cleared on thier own. I first had an ileal conduit- where you wear an external ostomy pouch for 6 years and then because the conduit had lots of problems I had it converted to an internal ostomy pouch. I still have a stoma ( opening where the urine comes out of) that I keep covered with gauze and tape. I catheterize it several times a day. I have had this for 12 years and am very happy with it. Hope this helps! Judith

[snowgirl]

Judith,

I also have had IC since I was little. My capacity is 200cc under anesthesia so awake 75cc maybe. My uro told me a year ago my next options were interstim and bowel augmentation. I drove to the University to see my uro today about a hysterectomy my gyn wanted consult on. We won't be doing the hysterectomy. I asked my uro how long can I be and go on like this- he hesitated and did not answer. No real answers for my today other then my usual 6month hydro , DMSO scheduled. I have asked for bladder diversion - I asked the fellow uro-gyn MD why can't you take my bladder out and I have a stoma that you cath?

So, I am thinking my uro is waiting for me to say I can't do this anymore . I am tired from peeing so much - nights are rough. I told my uro I don't know how I work 40 hours a week. It is so rough. He told me he does not know how I do it- he says most don't work. Well, I don't want that right now but it is getting harder and harder for me to work. A local uro and friend here in town told me with the bowel augmentation I would get more rest and it would be easier for me to work. I am not even sure I am an interstim candidate since my bladder is so fibrosed. I have mixed feelings on the intersim.

Any thoughts Judith,

Thank you,

Miss Vicky

[curlycue]

Paul,
I wish you the very best of luck on what ever you decide to do.
I have to spoken with different Dr regarding removal of bladder and the always speak about the phantom pain. I have also spoken to Pain Dr regarding the bladder removal and they said that yes Phantom Pain does exsist but that with in time it does go away.

I will keep you in my thoughts and prayers
Ruth:pray:

[lotsofgirls]

Hi Paul,
Sorry to hear about how difficult this has become for you. I just wanted to add that I am under the care of a pain specialist, who has diagnosed neurological inflammation in addition to IC. My docs believe that is causing most of my pain right now. I have been put on a high dose of neurontin to settle down the neuro pain, and then the belief is that we will be able to evaluation the symptoms of IC more clearly. It sounds as if your bladder capacity is so bad though that not much is going to work for you. God bless, and I hope you find an answer soon.
Cath

[julesb44]

Hi,

I had my bladder out 1 1/2 years ago. It was the best decision I have ever made! I had ic for 14 years. My capacity was somewhat diminished, but not too bad. My symptoms were pain, frequency, urgency, and at the end difficulty emptying. I have none of these symptoms now! They were relieved immediately after surgery. Surgery is difficult, but I would do it again in a heartbeat. I have an Indiana Pouch. I cath it through my bellybutton every 3-4 hours. At night I wear a bag so I do not leak and I don't have to get up at all! I irrigate my pouch every evening. I did get some infections in the beginning, that would go away with a course of antibiotics. Now I irrigate with a special solution and I haven't had an infection for 6 months. My uro told me that only I could decide when enough was enough and when I made that decision he would remove my bladder. I had tried urethral dilations, dmso, silver nitrate, intrastim, pelvic strengthening and biofeedback, long term antibiotics, daily bladder instillations and even naturapathic healing. Nothing worked or even helped for very long. I was on muscle relaxants and narcotics for many years. I take no meds now and I finally have my life back and I was able to return to teaching! I would be happy to answer any questions you may have.

Good luck, Julie:)

[Judith56]

Vicky, please forgive me for not responding sooner. My computer died and right now I am doing this from my public library. I would not go for the augmentation. I had one and it only lasted a few months. the IC spread to the new bladder. This has happened to most who get an augmentation. I think you need to find a uro who does lots of pouches and get a second opinion. Usually major medical centers tend to do pouches. Just makje sure the uro does lots of them as that way there is less chance for complications. Judith