www.incontinentsupport.org

Hello! My name is Leslie, and I live in Ottawa, KS in the US. I am glad to find this forum because I am another person who finds myself frustrated (for wont of a better word) with my incontinence problems.
A bit of history: in November of 2014 I was diagnosed with 4th stage metastatic breast cancer. The month before I was diagnosed I had horrible problems with incontinence at my old apartment. Despite this problem, my bladder was one organ that did not have any cancer lesions (unlike my liver, lung and several bones). Long story short, the hospital where I was admitted got tired of changing my diaper every 1.5 hours and gave me a catheter. Angels rejoice, I felt like a new woman and grew attached to my "freedom bag," as I liked to call it.
A year later, my body is telling me it is tired of the catheters, and spits them out almost as soon as one is inserted (also got a nasty UTI recently). So I am looking for other options. My incontinence produces deluges, not dribbles, and I am frustrated with people who seem to think I can do kegals and everything will be hunky dory. Because of my cancer and inability to provide myself with certain types of care, I live in an assisted living facility (a step up from nursing home). Since I am on a break from the catheters, I currently wear a brief with a liner underneath. I also use a bed pad just in case my bladder decides it wants to fill a swimming pool in between changes. My question is, will I ever be able to go back to a life that is not ruled by my bladder (and where I can be free of a painful catheter)? I have a urologist who I have visited once. He wasn't very friendly or very helpful, but if I go in with some info next time, MAYBE he might be willing to help me besides just inserting a cath.

Hello Leslie!

Welcome to the forum. I realize this is the last place someone wants to be, but you are NOT by any means alone. I am sorry to read of your bladder control issues, and commend you on your brave fight with cancer. Did the doctors ever tell you why you have incontinence? It might be worth pursuing hte matter with tests if you haven't. And i totally hear you about the kegel excercises. I have a neurgenic bladder of the underactive variety, according to my current urologist. 4 years ago, i got dry doing the kegels, but it didn't last..4 years later i started wetting agian.. underwent pevicl relaxation therapy/biofeedback agian, and it lasted 2 months before i started wetting! I've more or less accepted this as is and wear diapers to manange it. It's frustrating, but sometmes you just have to accept the hand that you were dealt.

Unfortunatley, when it comes to females, the options are more limited than males, in terms of collection s ystems. The male anatomy allows for a catheter to be attached to the urethra, which is called a Texas, or condom catheter. It also allows for the cunningham clamp. With females, it would seem you have the option of foley catheter, clean intermittent catherization, or diapers. That is, unless you decide to go with the surgical route. There are procedures that involve a urostomy. But, I'm not a urologist, and i don't think any of us on this board are qualified urologists, though we do have a psycologist on this board. My advice would be to shop around until you find a urologist that makes you comfortable, and discuss what manangment options may be available to you. Another idea would be a suprapubic catheter. I would continue this discusion, but i gotta get readdy for work

Peace out!

Rob

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Welcome Leslie,

You certainly have your hands full dealing with the cancer as well as with incontinence. Let me start by saying I'm wishing all the positive thoughts and energy I can muster for you in your recovery process. May it go as smoothly as possible for you!!

Regarding your question, reading this board will probably give you the idea that different people find the freedom you're searching for in different ways. Personally, I found mine in the form of wearing a full, extended wear, tape-on plastic-backed diaper 24/7. I have urge incontinence and I spent quite a bit of time feeling ruled by my bladder until I accepted needing to wear protection sufficient enough to handle a deluge should one befall me. I got tired of walking out in the middle of sessions with my clients to use the restroom or worse yet worrying that I might have an accident in front of a client during a session. It didn't take long at all to realize that by wearing a diaper that could handle one of my accidents, I was free from so much stress, worry, anxiety and embarrassment. It sounds like catheters once provided you that freedom but maybe not any longer. I, too, have had a lousy experience with a Urologist who seemed offended at MY CHOICE to wear a diaper. When I realized that it was my choice and I knew it worked best for me in my situation, I got over thinking that I was doing something wrong. Listen to yourself and your body. You know yourself better than any other person on the planet ever could including any doctor.

... And remember the immortal words of Janis Joplin, "Freedom's just another word for nothin' left to lose". What have you got to lose by trusting yourself?

CJ

Add my welcome to those above.

The combination of cancer and urinary incontinence must make for one difficult, but heroic, life. You have my admiration, and as many good thoughts for your recovery as I can muster. Doctors can be wonderful or dreadful; folks here have seen both. Pay attention to your body and work to discover what works best for you, understanding that that will most likely change as your body changes.

Keep us informed.

As someone who just started dealing with my own incontinence issues I don't have much in the way of sage advice to offer, but I do offer my sincere hope at a swift recovery. Welcome to our little piece of the internet!

_________________
When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius

Thanks to those who have been kind enough to respond. Last year my oncologist suggested I have a surgically inserted catheter. Have not pursued that avenue yet, and don't know if I want to.
When I was in the hospital right after my diagnosis, one of the doctors prescribed desmopressin because I was constantly thirsty. He told me I have diabetes insipidus, and the med helps me not want to drink so much. It also gives me some relief from the constant flow of urine. When I take this at night, I am able to get to the bathroom in time to relieve my bladder. I didn't notice a difference until the catheter came out, of course. I may talk to my GP about taking this a couple times a day instead of just at night.
I have not been diagnosed with diabetes, but it does run in my family.

Leslie,

I can certianly understand the hesitancy to go the surgical route, since it involves altering your body, risk of infection, and pain, and youve certianly had an ordeal already wiht the cancer. I'm glad that they found a med that helps somewhat with the being thirsty. Yes, I would talk to your GP about taking it during the day. If that turns out to not work long term, there are overactive bladder medications that are avaliable. They work for some folks, but not for others. Some drug names include Ditropan, Detrol, Vesiciare, Enablex, Topiaz(i think) and Myrbetriq. I have taken almost all of these, and they did not seem to help to the point of where i wanted them to, that is get out of diapers completly, but hten again, I don't have an overactive bladder..i have an underactive bladder..and its harder to treat with meds. Also, keep in mind that that they would reduce, not eliminate the number of accidents. You said that that the hospital got tired of changing your diaper every hour and a half. I'm guessing you are currently using a brand like Depend? I would suggest that should the meds not work, you consider upping your protection to a premium brief, such as Abena, Confidry, Seni Quatro, or A+, all of which are avaliable at www.xpmedical.com. These diapers are more expensive, but you would actually save money because they don't require as many changes. With the amount of absorbency, they absorb what 4 regualar briefs would absorb. Also, another option to consider is something that I am trying myself with good resuts, which is adult size pocket diapers off this website: http://wearing-adult-diapers-com.myshopify.com/ Don't let the price per diaper of 40 dollars scare you, you actually would save money over time since these are washable. I have reseasrched cloth quite thourugly, and these are the closest thing to the convinenence of disposables while still being reusable. The main thing to keep in mind with these pocket diaeprs is to wear enough inserts. 1 insert would last rougly an hour for someone whos wetting heavily.. so you would want at least 3 or 4 per diaper.

I hope this helps!

Peace out!

Rob

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

That interesting, I too am thirsty all the time and my doctor told me it was because of my TBI. I will have to ask for more information about this "diabetes insipidus" when I see him next. Thank you for bringing it up!

_________________
When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius

Leslie

Add my late welcome to the group. You definitely found a supportive group.