www.incontinentsupport.org

Well my doctor is a incompetent fool.

I told him about the blurred vision I am getting on Vesicare and he laughed and said its not a side effect associated with it!
Pool near me is empty during the day so I go then. Some one times there is a few older people.


Hi im new here so little history.

Age 12 I was diagnosed with IBS, age 14 begain with on/off fecal inconetince and started my first encounter with adult diapers. Age 21 started getting bladder spasms and pain with argency along with heavy leaking after emptying my bladder age 27 the bladder got to about were I was getting extreme urgency pain.

Been to the GP countless time and hospital with all the "fun" tests. Diagnosed with IBS and OAB.
No meds seem to work for IBS, tried it all from opiates to muscle relaxants and every thing in between.

OAB meds work....too well. Oxybutynin stops all secretions and urination on the lowest dose and had to come off that. Vesicare not as extreme, in fact been on it a year and reduced my OAB flare ups from say 30% of the time to 20% (flare up coincide with IBS flare ups). Now im getting side effects. Mainly blurred vision and really cant be doing with that, Im a active 27 year old! Rather don a diaper than go half blind.

Good news is 80% of the time I am free of symptoms. So no pain, no accidents and no diapers.
Bad news is 20% I have the bowel and bladder control of a 90 year old.

Ok I have accepted the fact that I might just have to grin and bare through the flare ups. I can handle that, Diapers really don’t bother me anymore and I should just consider myself likely its not all the time.

Main problem is pain. When my OAB really flares up its like itching powered in my bladder and even the smallest amount of Urine in it makes it spams and burn! Pain killers from Asprin to dihydrocoden wont touch it, muscle relaxants wont do anything. I can handle the incontinence fine, but the pain is well....a pain. Any suggestions?

Would short term catherisation to keep all Urine out work for a day or two while the flare up at it worst? I am trained in Aseptic tecniques and keeping things sterile would mean UTI would be a mininal risk especially as it would be only on occasion when the pains at its worst.

untamed,

Welcome. Most of us here have experienced difficulties with our doctors. Sometimes they want to push medications that we cannot tolerate or that are useless. Bladder spasms can be excruciating, especially when the external sphincter clamps shut during one of them. If that happens, a sphincterotomy may be your only solution. If you can make diapers work for you, wonderful.

You're dealing with a complex situation, so keep us informed. Your input will be valuable.

Patrick wrote:untamed,

Welcome. Most of us here have experienced difficulties with our doctors. Sometimes they want to push medications that we cannot tolerate or that are useless. Bladder spasms can be excruciating, especially when the external sphincter clamps shut during one of them. If that happens, a sphincterotomy may be your only solution. If you can make diapers work for you, wonderful.

You're dealing with a complex situation, so keep us informed. Your input will be valuable.

Hi thanks.

Never heard of a sphincterotomy what is it?

Surgery seems a little extreme. Especially on the bladder. I would worry that something would go wrong and instead of haveing incontinence problem in waves it would then end constant
:/

One of the things were I would need to weigh up the Pro, cons and risks.

I had my sphincterotomy in August, 1999. It was the last of several bladder procedures, and it ended years of intense bladder pain. I was hospitalized for three days, and went home with a Foley, which I kept in for another 7-10 days. I had three visiting nurse appointments, and I bled profusely for the first four days after the surgery. Basically, I lost all bladder control, so that when my bladder would spasm, there was no longer any resistance, which greatly diminished the pain and the reflux threat to my kidneys. I am almost totally bladder incontinent; usually it is a slow leakage; however, when I drink too much fluid, the leakage can come in a gush.

Although I do not have IBS, I do have gastroparesis (stomach paralysis) which similarly impacts my bowel control. In many ways managing bowel control is more difficult for me than being totally bladder incontinent. Matching medication to diet is a never-ending chore that I do not always get right. And, when I get it wrong, I soil myself. One way of dealing with this is to take a strong laxative as supper, so that I soil myself in my sleep, when heavy nighttime protection is fully up to the task.

Good luck getting your situation under control.

Yeah the sphincterotomy may be a bit overkill at the moment as I can maintain continence still 75-80% of the time which is worth the pain trade off. The OAB would have to get worse.

IBS the fecel inconetince is a pain. But been dealing with it on and off since 14. Most are just small amounts of soiling that I dont even notice until I change the diaper. Larger accidents are rarer but happen. If Im out or away from a toliet I normaly wear a heavier diaper + Plastic paints and carry a clean up kit.
Few times I have been caught out the heavy diaper + Plastic paints contain the smell long enough to get to a toliet to clean up the best I can. Big pain but only once have my freinds notice a accident happen, which was in a car between service stations......will as they say **** happens

You might consider taking Nullo or a similar product. Nullo was developed for use by hunters to diminish or eliminate the human body odor which can alert game. However, it works wonders for me. Although it does not completely eliminate objectionable fecal odor, it does give me precious extra minutes to find a suitable handicapped restroom. And, when I'm out and about, I always take along a gym bag with all the supplies I expect to need to change.

Patrick wrote:You might consider taking Nullo or a similar product. Nullo was developed for use by hunters to diminish or eliminate the human body odor which can alert game. However, it works wonders for me. Although it does not completely eliminate objectionable fecal odor, it does give me precious extra minutes to find a suitable handicapped restroom. And, when I'm out and about, I always take along a gym bag with all the supplies I expect to need to change.

I will look into that now.

Well, I've lived with painful urge incontinence for a long time now. The ONLY time I used to be without any pain was when I had an indwelling catheter. At the suggestion to a urologist I once even went 7 months straight while catheterized. Unfortunately that lead to a sever urethral reaction to having anything up there again. Years later, and much more fighting it, I ended up have a urinary sphincterotomy- then three more- and with a 5th one still likely to come.

While I fully recognize my case has been extreme, not allowing my bladder to fill up has been the only way for me to live without that constant'y reoccurring pain. While I would still not recommend this for you, I do believe that staying with an indwelling catheter all the while, but only during, your flare-ups might be a really good option for you. Just make sure you stay clean when using them.