NOTE: I have never asked a question on here before and am not looking for a "diagnosis" as that can only be done by exam, history, etc. This patient is a friend of mine with no insurance and I am looking to know if further evaluation is likely to turn up anything new or if it would be a waste of time and money.
I am a retired psychiatrist who knows a 31 year-old male with severe bipolar disorder who suffers from chronic urinary retention, frequency, slow and intermittent stream, and incomplete emptying x 14 years. Nocturia has been a problem in the past but no longer is, probably due to Remeron therapy for sleep. He was diagnosed with interstitial cystitis under general anesthesia cystoscopy and bladder distention with glomerulations present. Previous workups, including prostate exam, office cystoscopy, urodynamics were largely negative, though bladder ultrasound showed about 130 cc residual.
Patient was completely unable to void during video urodynamics on the table, making that test inconclusive. After being left in exam room alone for 45 minutes, patient was able to void in a sitting position. That urologist made a (guarded) recommendation of surgical correction of bladder neck obstruction based purely on the flow rate of his sitting void, which was 11.7 ml/second with no residual urine on repeat fluoroscopy. Fluoroscopy also demonstrated no reflux and smooth-walled bladder, which the urologist claimed argued against significant obstruction. However, some obstruction was felt to be present and an increase of Hytrin to 10 mg from a previous 5 mg was recommended, though the IC was diagnosed by another urologist several months later and Hytrin was not tried again.
His condition has, of course, been aggravated in the past by several anti-cholinergic psychotropics (particularly TCAs) and was generally unable to tolerate these without mutltiple doses of urecholine.
Today, patient is on Cymbalta 60 mg (which did aggravate condition for a while, then seemed to level off), Abilify 45 mg, Lexapro 10 mg, Remeron 30 mg, Xanax 0.5 mg BID, Zyrtec-D, Nexim 40 mg, Crestor 40 mg. Patient underwent 1 course of ECT x 5 years ago and maintenance ECT for a couple of years thereafter.
Previous therapies tried without success include Hytrin, Elmiron x 3 years (perhaps some benefit), Flomax, prostate massages (though no evidence of BPH or prostate cancer).Urecholine has been most effective, but, of course, has to be taken TID and the benefits are not THAT significant to seem to justify this. Sitting sometimes makes voiding easier and patient is TOTALLY unable to void at a urinal or with someone else in the room unless sitting and straining as if having a bowel movement.
Is there something else to try? It has been several years since a comprehensive urology exam, but prostate exams have been done in routine physicals. Patinet also recently had a tiny kidney stone (which passed when treated with Flomax). If he goes to a new urologist, what kind of guidance should ask for. As a psychiatrist, I am not an expert in urology but even the diagnosis of IC seems odd given the lack of pain. After MANY medication trials for bipolar disorder and ECT, patient is really tired of trying things just to try them. Is there something that is realistically possible?
I came to this board for help myself. I was browsing looking for anyone with Interstitial Cystitis. This is only my experience with this condition. I noticed the medicine this man is taking. With IC, or at least with me, everyone is different, if I take stimulants, I get flair up! I canít even take vitamins (due to the heavy acid ingredients). I canít take antidepressants either. Even allergy medicine affects me, I have to read all ingredients.
I was prescribed Tompamax for a weight loss aid, Within 2 days of taking this drug, I developed a flair up.
I take Elmiron 3 times a day to treat this condition too.
Maybe some of his prescribed drugs could be causing flair up with his IC, just a thought.
My heart goes out to your friend.
First, I want to say that I think it is very kind and compassionate of you to seek help for your friend/patient. As you know, there aren't very many people who would take the time.
I agree with the previous poster that there are many meds with additives, preservatives and fillers that can set off an IC flare. Sometimes meds are changed by the manufacturer and patients don't get notified. When new fillers are added, they can sometimes trigger a strong reaction in an IC patient. It is hard to say if this is problem or not, but it is definately a possibility.
Though he has tried lots of things, there are still lots of things left for him to try. Has he ever tried Rescue Instillations? They help me tremendously. In fact, they help so much, that I now self-cath daily and do them at home. The rescue instills are done with a tiny cath. Patients seem to do well with them b/c the med goes directly to work on the bladder. Many patients and Drs. instill the Elmiron along with the other meds (Heparin, Sodium Bicarbonate, and Lidocaine or Marcaine.) Many studies have shown that oral Elmiron is not as effective as instilling it b/c by the time it goes thru the body, very little of it actually gets to the bladder. But, by instilling it, you get the full amount and the effects are much more immediate.
Even if your friend tries the rescue instills and dont find them helpful, it would still be a good idea for him to learn to self cath, so he has that option during episodes of retention. Most of us use Lidocaine 2% jelly to numb up prior to cathing. It can also be used to lube the cath to make the experiance more comfortable.
Also, there is currently alot of hoopla in the IC community regarding Cytotec. As you know, it has been used for years for people with stomach ulcers to help restore the lining of the stomach. It is also an ingrediant in Arthretec, (a common med r/xed for Arthritis and Fibro. It works on Arthritis by also repairing and lubricating. Apparently, it does the same thing for the bladder. Many IC patients have had wonderful results with it.
Regarding the absence of pain, many IC patinets have no pain. Though most of us have pain, it is not rare for a patient to present w/o it. Since he had a cysto/hyrdro and was d/xed with IC, that is pretty much the gold standard test for it. However, if he still has doubts and wants another test, the other one to ask for would be the Potassium Sensitivety Test.
Lastly, if he has not been following the IC Diet, I would strongly encourage him to do so. It is the single most important thing he can do to help himself. Even straying from it "just a little" can send an IC patient into a horrific flare.
I hope that he gets to feeling better soon. Again, I commend you for your compassion and for seeking help for him.
Kimberly40, I noticed you were looking for a person with IC. I've had IC for 5 years now (diagnosed via cystoscopy), and take Elmiron 2 caps twice a day, but take just one cap twice a day now due to pregnancy. I am 23/F. I'd be happy to help if you have any questions.
Last edited by yellowbird14; 06-16-2007 at 05:40 PM.
Kimberly40, I also have IC and like Yellowbird, I will be glad to help you anyway that I can too. One thing that helped me alot in the beginning, was a book by Dr. Robert Moldwin, "The Interstital Cystitis Survival Guide". The author is very respected in the IC community and practices at Long Island Jewish Medical Center in New York. I bought my copy used at Amazon for $3. It was the best investment I have ever made!
I hope you and the OP's patient both find meds and/or treatments that help you soon!
I was diagnosed with IC back in the mid 90ís. I was prescribed several antibiotics by my Gyno. The never ending constant burning was sending me over the edge! He said he couldnít find anything wrong and could no longer treat me. A family member recommend a urologist. I to was diagnosed after having a cystosopy. I was devastated that I had IC, yet relieved that it wasnít all in my head as insinuated by my Gyno!
I canít even take vitamins, especially any of the B vitamins. Remember Metabolife! That diet aid caused me to have an emergency visit to the urologist!!! Doctors, still, even now, have no idea. My family doctor insists that meds have nothing to do with flare ups. He wanted to give me a shot of B12 and I said no way!!! The acid in vitamins, uhÖ.I canít do it. I figured all this out on my own. If I took something, for example a multivitamin I tried to take a couple years ago, and my bladder starts burning within 2-3 days of taking it, they go in the trash!
This is why when I read retiredpsychís post, I had to comment. Maybe itís the medís that causing the flare ups?
Thankfully, at least not yet, foods donít bother me. I take 3 Elmiron capsules a day.
I am so sorry you got the run around from Drs for so long, (and that you still sometimes do!) I had the same experiance. It took me 6 yrs to get d/xed. Even now, I occasionally run into a Dr. that "doesnt believe in IC", or thinks it is some sort of hysterical women's condition that is all in our heads. GRRR!! I am normally not a vindictive person, but when I hear things like that (said to me or another ICer), it makes me wish those arrogant,, ignorant jerks could get this and suffer for a few weeks.
I remember reading a lecture transcript online by Dr. Dan Brookoff, a noted IC researcher and advocate. He tells this story of being in a research lab and seeing them inject this solution into lab rats to give them the symptoms of IC. The rats were all visibly in pain and several tried to chew their bladders out! The pain was THAT bad! I can understand those rats. I just cant understand some Drs!
I hope that you never have to have that experiance again. It is a terrible thing to have this disease, but having "professionals" treat you like you are a head case just b/c they cant figure it out, makes it much worse. No one deserves to be treated that way!
When I finally got d/xed, you'd think it would've been a sad day, but it wasnt for me! I finally felt validated and I wanted to scream it to the rooftops and at every one of those insensitive clods that thought it was "in my head", when I KNEW all along that it wasnt in my head, it was in my bladder! I am just so sorry that you had to experiance this too. Maybe in time, as more people are diagnosed and IC is publisized (sp?) more, that fewer patients will share our experiance.
Sorry this was so long!!! As you can see, this is such a hot-button topic with me! Anyway, I hope that your meds and treatments are working for you and that the book helps you as much as it did me.