Any expansion?

**Black Widow** · 05-02-2006, 08:48 PM

My doctor told me it's possible to have your bladder grow bigger and not be so small...has anyone had this happen to them? from what im reading, people's cases have got worse and worse, until they had to remove thieir bladders...

how do people urinate with no bladders? i'm a male by the way

***ICNDonna*** · 05-03-2006, 02:37 AM

Only a very tiny percentage of IC patients actually progress and an even smaller percentage reach the point of bladder removal.

My IC was diagnosed in 1975 and did all of its progressing in the six months before I was diagnosed. At the time of diagnosis, my "awake" capacity was 300 cc and when I had my first hydrodistention, it was distended to 750 cc. Now, 31 years later, my capacity is about the same as it was at diagnosis.

The vast majority of IC patients do find that with treatment and some diet changes, they do well the majority of the time. And remember --- for every individual posting that they are in pain, there are literally hundreds out there with IC who are not posting because they feel good and are busy getting on with their lives.

It can take a while to find which treatment options work best, and which foods and drinks are a problem, but most of us do get there, and most of us feel good most of the time.

Sending healing thoughts,
Donna

**dg2901** · 05-03-2006, 04:13 AM

Bladder retraining can help the bladder hold more. Has your Dr mentioned this practice to you?

good luck
diana

**Black Widow** · 05-03-2006, 10:25 AM

Originally Posted by dg2901

Bladder retraining can help the bladder hold more. Has your Dr mentioned this practice to you?

good luck
diana

no he hasn't can you go into more detail about this?

**dg2901** · 05-03-2006, 12:49 PM

Bladder retraining is simply holding the urine longer between bathroom visits. Its usually done under the care of a urologist or physical therapist. The patient keeps a voiding (intake/output) diary. Generally at the start of bladder retraining the patient is told to void every hour whether the need is there or not. After a few days of this practice the patient is then advised to go longer between voids (whatever time frame is personally recommeneded by the Dr). So forth and so on until theres a noticable difference in time between voids from when the patient first started the retraining. The attending Dr or PT can share relaxation and distraction techniques to assist the patient during the retraining in order to help the patient "ignore" the bladder's signal to void.
Again this practice is not advised unless under the care of a Dr.
With that said, dont hesitate to ask your Dr if bladder retraining might be beneficial to your situation.

Take care
Diana

**kdfurgi** · 05-03-2006, 12:55 PM

I dont know about the bladder retraining however I was diagnosed in Oct. 2004 with the PUF questionaire (i think thats what it is called) and did not get a urologist until last summer (long story short-dr diagnosed me and 6 mo later told me i knew more about this disease than he does) well the uro did a hydro/cysto/biopsy in August 2005 and my asleep total was 750 ccs. i had another hydro on monday (may 1st) and my bladder was able to hold 900 ccs now. i am on several meds and very strict with the diet and really dont feel any diffrence in my bladder, but i know that he said it is getting a little bigger. not sure if it will continue to grow or stop but at least i have had a small improvement. hope you find the right meds and feel better soon. nice to meet you and i look forward to seeing you around the boards

**Black Widow** · 05-03-2006, 02:58 PM

Originally Posted by kdfurgi

I dont know about the bladder retraining however I was diagnosed in Oct. 2004 with the PUF questionaire (i think thats what it is called) and did not get a urologist until last summer (long story short-dr diagnosed me and 6 mo later told me i knew more about this disease than he does) well the uro did a hydro/cysto/biopsy in August 2005 and my asleep total was 750 ccs. i had another hydro on monday (may 1st) and my bladder was able to hold 900 ccs now. i am on several meds and very strict with the diet and really dont feel any diffrence in my bladder, but i know that he said it is getting a little bigger. not sure if it will continue to grow or stop but at least i have had a small improvement. hope you find the right meds and feel better soon. nice to meet you and i look forward to seeing you around the boards

wow thats good to hear, that u do have some improvment, please share what you do, from diets, to therapy, to drugs...thanks

**kdfurgi** · 05-03-2006, 07:30 PM

Originally Posted by Black Widow

wow thats good to hear, that u do have some improvment, please share what you do, from diets, to therapy, to drugs...thanks

I am going to first say that my results are not normal and not necessarily help you or others. I will tell you what meds i take only because they may be helpful to you or others, however you can not expect my treatment to have the exact same results on you. plus i still use the restroom about 30 times in a 24 hour period and I am usually constantly in pain and have some other health problems. I will include all my meds, the ones that are not for IC will be marked what they are for. As for the diet, I usually only eat things in the first column however, there are a few items on the second column that I can eat in small doses. With most of these foods I also take Prelief so that I am less likely to flare.

second column foods: blueberries, caramel candies, cheesecakes my hubby makes, some white chocolate, watermelon, maraschino cherries, bottled water: only Aquafina and Sonic Wave, herbal teas (camomile), root beer with ice, oatmeal, Cool Whip, homemade blueberry breads and muffins, cinnamon, nutmeg.

Current meds:
Elmiron 100 mg 3/day
Amitriptyline 50 mg at night
Prelief (depends on what I am eating)
Pro-Biotics Acidophilus 2 capsules/day (keeping yeast down in case i end up with an infection and need antibiotics)
OneSource Active Kids daily vitamins
Zoloft 50 mg /day (depression, anxiety, panic attacks)
Sonata 10 mg (when needed for sleep) (rarely helps, plan to change)
Dolgic Plus (cronic Migraines)
Tramadol with Acetaminaphen, Darveset (as needed for pain)
Benedryl (allergies)
Ortho Tri Cyclen lo (cramps, regularity)
Poly-Iron (anemia)

Past meds:
Paxil
Paxil CR
Hydrocodone (vicodin, loratab)
ditropan xl
Peridium

I have also had the 2 hydros and I am currently also having bladder instill of Elmiron, biocarb, lidocaine, marcaine, steroid (cant remember the name but starts with "S")

If you have just started the Elmiron you may talk to your doctor about getting Elmiron instills straight to the bladder, with some people it helps and the Elmiron pills seem to start helping sooner.

For exercise I started walking in a 10 x 15 rectangle in my backyard (on concrete cause I am a clutz, lol) I started out at 25 times and I am now up to 175 on nights when it is not raining or too cold (dont want to get sick)

Please remember that these may not help you, every case of IC is diffrent. I hope you are able to find the right things for you soon and that you feel better soon.

**Black Widow** · 05-03-2006, 08:13 PM

i see, no the only pill im one is hydroxyzine...and exercise, i hit the gym almost eveyrday pretty hard...hope im not causin damage, i do weight lifting and cardio

**sweetangel2080** · 05-04-2006, 05:40 AM

I am on Elmiron and ayurvedic treatment. I think Elmiron will slowly allow the bladder to heal but putting a coating on it but this is long term- lots of people say it takes 6 months - I've only taken it 2 months so far but started ayurvedic treatment a few weeks ago - this has helped my capacity- don't know how!
I still have to be careful with foods and drinks or else I flare and my frequency is down to every 2-3 hours when not drinking fluids.
If your IC is with inflammation then anti inflammatories like atarax may help.

Bladder training is also good- have you also tried antispasmodics? Last year when my frequency was every hour - I found the training and antispasmodics increased it to 1 1/2 then 2 hours....

I have also tried Cystistat instills and that helped my frequency 10fold but the procedure gave me UTIs so had to stop.

Hope this helps

**kdfurgi** · 05-04-2006, 02:14 PM

forgot to tell you that i have been on Elmiron since October 2004. also i did not see any improvement until about 8-9 months later and i was also on Amitriptyline by then too.
some people are able to exercise without causing problems with the IC. im not one of them but I also have a few other problems that just keep seeming to grow. right now they are testing me for tyroid problems or possibly diabetes cause i am having problems that can be symptoms of either and both are in my family history. i hope you find your help soon.