www.incontinentsupport.org

Hello everyone I just recently found your group and I appreciate your having me as a member. Figured I’d say hi and explain how I’ve been dealing with incontinence and possibly get some advice at the same time.

I’ve learned how to deal with my incontinence using diapers and pads but I don’t feel like I have had the best luck with diagnosis and I’m wondering what every ones thought here might be.

Little history.

I’m a 47 year old male and I’ve had the following issues over the years.

Since I was in my late 20’s I remember having to use the bathroom in access and having to get up several times in the middle of the night. When I was in my early 30’s I wet the bed for the first time when I was sick. This happened on rare occasions until I was in my early 40’s when it started becoming more of a regular occurrence. So much so that I went to the urologist for the first time.

I was diagnosed with OAB and prescribed Vesicare. It seemed to help but it caused my blood pressure to increase so I stopped taking it. This was about the time I started using waterproof sheets and pads as the occurrences were more often but still pretty random. As the years have progressed the night time accidents have increased especially in the last year. In the last 5 years during the day I’ve also started to experience dribbling after I went to the bathroom. This has actually been common for sometime but now it is sometimes to the point that it shows through my clothing or I can feel it running down my leg. This has since increased to sometimes having light to medium leakage on the way to the bathroom. As a result I have started wearing pull-ups during the day.

I went to a new urologist this year and again I was diagnosed with OAB. I was first prescribed 10mg of Oxybutin which also increased my blood pressure and didn’t work too well. I was then prescribed 5mg of Fesoterodine. It worked for my daytime issues and a littler for the bed wetting but after taking it for a couple months it seemed to stop working all together. The doctor upped my dosage to 10mg which again caused my blood pressure to go up and weight gain. It also wasn’t that effective with the incontinence that I felt it was worth continuing. So again I stopped taking it. I was sent to a Neurologist as I have had several back issues over the years but she didn’t believe my back issues were related to my incontinence.

The neurologist diagnosed me with:

Upper lumbar spine leans to the left and mild disc space narrowing at the L5-S1.

This diagnosis was through X-Ray. No MRI has been completed.

Another issue I’ve noticed is I have little to no sensation of my bladder filling up especially when I am sitting down. It wasn’t always like this but it seems to have gotten worse as I’ve gotten older. When I get up after a long drive I have a sudden urge to go right then and there. I used to wonder how I could have the incontinence issues that I do but could go longer then my passengers on a drive. After it got worse though and I almost couldn’t make it to the restroom after getting up from a long drive I realized I needed to start stopping and using the restroom more often even if I didn’t feel the need.

The doctor has suggested also trying Botox injections in my bladder and other possible surgeries as options. I’m really not to open to surgeries especially since I don’t feel they have given me a true cause to the incontinence. After the side affects and lack of effectiveness from the prescriptions I am inclined to not consider the other options and just deal with my incontinence with diapers.

I used to be very self conscious about wearing diapers but not having to deal with wet beds or worrying about having to change if I have a minor accident in public is better. I also rarely notice I am wearing them anymore and my wife has been very supportive which makes it much easier to deal with. She like me is also not a fan of prescriptions and surgeries except as a last resort.

In the event it gets much worse for instance I have to start wearing an overnight diaper out in public then I would be more inclined to consider surgery if I can get a better diagnosis. I am pretty careful about how much fluid I consume while in public though. I think prescriptions are out at this time. I’ve never had the best luck with side affects from prescriptions so I don’t know if I want to consider that option again.

I’m just curious if anyone here has had similar issues but a better diagnosis.

Again thanks for having me and I appreciate there being a group where I can discuss this.

Welcome Spend a Penny. You will find a community of folk here who understand and can empathize with your situation.

Please take the time to read through the old messages as there is a wealth of information there.

I'm John and I am double incontinent (bladder and bowel) but have managed it well.

Please be patient as there has been a learning curve for all of us. Ask anything you want here and feel free to send a personal message to other members.

Best of all, feel free to vent, as most of us do so from time to time.

Again, welcome.

--John

Add my welcome; I hope you will profit from your time with us.

And, yes, L5-S1 seems to be a common issue with several of us, myself included. My experience with detrussor botox injections was that, while they worked pretty much as advertised, they wore off after successively shorter periods of time, eventually making a sphincterotomy necessary to protect my kidneys from reflux damage. Following my second sphincterotomy eighteen months ago, I really need diapers 24/7 now more than ever before. Although I do not flaunt my wearing diapers, like AB/DL folks do, I am grateful to have them, because they enable me to live an almost normal life.

Hi Spend a Penny

So sorry that you have found your way here but I have found everyone so very supportive and friendly. For me having people going through a similar journey makes life so much better!

My journey started over 30 years ago when I was a teenager when I had an appendicitis that was diagnosed too late yes my life was saved just but the resulting sepsis permanently damaged my bladder to the extent that I am urge incontinent. It was hard for me to accept the dramatic change in my life that was not my fault. From a happy teenager one day to being one who had to wear diapers 24/7. The education I went through at the time learning how to change my diapers making lots of mistakes and leaking everywhere really made me angry and frustrated. Having a good hygiene routine was really exhausting at first and UTI’s focus my mind to be fastidiously aware of cleaning. I eventually learned to accept cards life had given to just get on with it took me a while to reach this acceptance point but when it arrived was so liberating. Yes the constant changes, re-supply stress, enhanced hygiene, constant bladder diary recording etc. are a pain but the alternative is much worse. I have a range of different types of diapers, plastic pants, creams for different situations. Yes I have incontinence but incontinence does not have me and I have a normal as possible life.

Wishing you well as you negotiate your way through the incontinence journey.

Greenbank

Welcome to the forum.

All of us here have differing conditions and causes but we all share the common goal of resuming a normal life.

Thank you for the warm welcome.

I can deal with the at home issues and the days off but my issues are getting worse at work. I work in a line of employment where it can be difficult to make it to the bathroom at times. I started off wearing pads, then pull ups, and now pull-ups with boosters. I try to go an hour between using the bathroom but I immediately start leaking on my way to the bathroom. Today after a crazy day I started leaking through the pull-up with booster as soon as I got home. It is likely that I will need to use regular diapers with tabs like I do at home but I’m not sure how well I can hide this issue at work. I need to get through 3 more years till retirement but I’m not sure how much longer I can hide these issues. As negative as the prescribed pills were for me I am considering going back to them till I retire.

Patrick you confirmed that my back issues are a common problem for those of us with incontinence. Your treatments don’t sound like they have paid off. Am I reading this wrong? Have you identified any positive treatment for those of us with back issues?

Any suggestions would be greatly appreciated.

I guess I'm not the best person to answer your question about back issues. Back pain can be disabling, quite aside from incontinence issues. And back surgery can cause a range of unintended consequences, making incontinence minor indeed. My back issues are caused by a genetic disease, which is also attacking my heart and blood vessels. Medical tests have all centered on that disease, with incontinence largely secondary. Good luck getting competent, professional care, and keep us informed.

Spend a Penny wrote:I need to get through 3 more years till retirement but I’m not sure how much longer I can hide these issues.

I'm not sure if "hiding" is really the right word for what I do at work. I make what I consider to be a reasonable effort to keep it discreet. I use the single-occupancy bathroom to change, if it's available. But what if the single-occupancy one isn't available, and I have an upcoming meeting, and I really need to change before the meeting? The answer is, I shrug, I figure I did my best, and I use a stall. I use a stall in the lesser-used of the two bathrooms, but there's still people coming in and out of the bathroom and they are still going to hear the sound of my tapes.

I mean, really, what do they expect me to do? If I'm not in diapers, I am going to wet my pants. Trying to claim that I don't wet my pants would have been dicey even when I was at my best, several years ago. It would be impossible now. So if someone hears me change, or notices a bulge, well, I mean, sorry, but also, that's life.

I found this post from nomoore really helpful, last year: viewtopic.php?f=3&t=4123#p34288 -- this has been a lifelong thing for me, I never had a normal bladder, I never had a "before" version of myself, and I really honestly most of the time don't actually know how I am seen by other people who do have normal bladders. I really appreciated the perspective I heard from nomoore about how I might be being seen by people.

A lot of the other text you wrote is familiar to me from my own situation. I don't really have any specific responses other than "yup, it's like that, isn't it".

Best of luck!! And hey, retiring at 50 doesn't sound bad to me at all! Congrats on whatever career it is (I don't need to know what the career is, but the retirement age sounds amazing)

Patrick, thank you for the support and I wish the best for you!

Bcca, I know saying I’m hiding it sounds insecure but my place of work is a little different. Would my HR stop the public reticule, yes. But I don’t want everyone talking about it behind my back either or even asking me about it. I guess this is something I just want to keep between my wife and my doctors.

Yup retirement at 50 sounds awesome but I will find a part time job. Not out of necessity but more to occupy my time till my wife retires in 10 more years and to have some fun and house improvement money. If the part time job affects my incontinence issues then I’ll just find another till I find what fits. My current career makes it difficult to deal with issues of changing diapers and not wanting to broadcast my issues.

Welcome! Sorry for the delay.

I had a question about blood pressure increase with OAB meds. Is that a common side effect? It seems lately almost every time I go to the doctor and get my BP checked, its elevated. I'm not sure if its my love for coffee or whether the meds I take are doing something. I don't think the oxybutin ive been prescribed is the root of my BP issues because im notorious for forgetting to take meds, was only recently prescribed it, and have had slighty elevated BP sporadically for some time now. Just something to keep an eye on. But I digress.

Spend a Penny,

I think your incontinence is similar to mine. I don't have a diagnosed spinal conditon. However, I did have an MRI discover disc deterioration in my lower back. I have a neurgenic bladder which can be both underactive, leading to overflow incontinence, or overactive, leading to urge incotninence. Fun times, right? I have resorted to using premium briefs at work, and mix cloth and disposable at work depending on length of shift. I've been managing this for a decade, so any questions, just ask. Hopefully they can find a solution for you. I'm taking oxybutin now, and it does seem to help my symptoms. Which is suprising since I didn't see much effect from other meds I took, but perhaps I was expecting too much. A cure rather than a decrease of episodes.

Peace out!

Rob