Dealing with it long term

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miapeters

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  1. Incontinent
Hey guys, after a long time.

So as most of you might be knowing I've been dealing with both bladder and bowel accidents for a long time. And every now and then there comes a time where the accidents really get me down. Because of the frequency and the eventual clean up it's just always ready to pull me down to that state. Over the years the frequency of my bowel accidents have increased and even my urinary incontinence has. Last year was really tough on me and being stressed by college work didn't really help. It can be really difficult especially when I'm out with people. For the most part I'm dealing with it pretty well but there are plenty of days where I feel like I can't take anymore. Does anyone feel this way? I know for a lot of people who are new to their incontinence it can be a little harder to accept but I won't lie, even after all these years I still have some hope of finding this, I still look at the future where I'm not changing a brief every now and then. It's pretty embarrassing I'm sure most of you know, but I just wanted to let out some steam. Going back to study at a university is a little scary. And I never feel like explaining my situation to anyone, inactive I've never personally told a lot of people because it's still kind of an embarrassing topic. I mean I've been living in the "normal world" for all my life so even though I've lived through incontinence I grew up learning that it isn't normal....... Which wasn't really helpful. Anyway I just wanted to get that out, I know from personal experience that incontinence, especially when bowel and bladder incontinent can really stir up a lot of stress and depression....
 
Thanks for sharing - and I hope by doing so you feel a bit better - incontinenece rally stinks in every sense - the feelings will pass and self acceptance however hard it seems is the way forward
 
SiriusPup said:
Thanks for sharing - and I hope by doing so you feel a bit better - incontinenece rally stinks in every sense - the feelings will pass and self acceptance however hard it seems is the way forward

I believe part of your problem is you are still hanging on to believing it will get better and you won't need diapers. Your expectations are too high, and when reality happens you get depressed.

Sorry, but you've just got to come to terms with it.
 
I understand your feelings completely. I too, even after all these years, get so tired of it all. It's not only exhausting but at times depressing. You've made the first step in sharing your feelings here, with other people who share most of the same issues. That's surely a good start. I'm not a therapist so you can take my advise with a grain of salt. I think perhaps you're trying to do too much. Yes, it's good to get out with friends. Everyone needs some enjoyment in their lives. But besides your inontinence and mobility issues, university studies all by itself is enough to push even relatively healthy young people over the edge sometimes. Maybe you could reduce your course load by 1 class to ease the preasure. If you're not talking with a good therapist I suggest you find one. Maybe see him or her once or twice a month. Things are not going to get easier as you get closer to final exams. I know it's tough but having a friend or close confidant is so helpful. I am "socially selective" but still have many friends although only a few that I would consider close. I, like you, have a very supportive family. My younger brother is a physician and has always been very helpful. His wife is a nurse and has been equally helpful. My older sister is a nurse and has always been a blessing. I'm very independent and have enjoyed success in business so I have the resources to do what I like within reason. So I'm not facing the pressures that you are, yet I do get exhausted and depressed every once in a while. So the bottom line is that maybe you need to back off a little to reduce pressure. Find a good therapist. And try and get closer to one or two casual friends. It does sound like you are holding back (for clear reason). Having a group to hang out with is fine but a close confidant is valuable beyond measure. With all you've gone through you're doing remarkedly well. Give your self more credit for the strength you've shown.
 
Stress makes this disorder worse so whatever you can do to let that out is important to do so.
 
I know it's hard, Mia, so damn hard. When it's difficult for an oldster like me with just bladder issues, I can't even imagine what it must be like to be young and saddled with double incontinence...and to have lost both legs besides. I've told you this before: you are one of my heroes just for making it through, and for maintaining a focus on what you can do with your life rather than what life has done to you. But if, once in a while, you find it overwhelming and need to blow off steam, well, that's what a support site is for. :)
 
Slomo said:
I believe part of your problem is you are still hanging on to believing it will get better and you won't need diapers. Your expectations are too high, and when reality happens you get depressed.

Sorry, but you've just got to come to terms with it.

I couldn't agree more. Once I accepted it life became easier.
 
It's easy to tell someone to accept it and move on. Not everyone can do that. I've accepted the fact that I will likely be in diapers the rest of my life. Even with that, there are times I get frustrated that I can't go without them, that I need to be in one. I don't deal with fecal incontinence, and hope I never do. I feel for those people, and can understand the need to vent from time to time. I vent to my wife every so often, complaining about how much it sucks to deal with it. We often just wish we could be 'normal' and not have to be stuck doing this. Mia, feel free to come here and vent, we understand. I fight cluster headaches and hope for a day where I'm not afraid what the next attack might bring, to me diapers are an easy problem relative to that. Please don't think I'm downplaying your situation, we all have different lives and I am sure you face other challenges that I don't.
 
I feel your frustration too. I stay extremely busy so I don't have a lot of time to think about it, but there are times it gets me down too. I've thought about more radical "treatment" options for my severe OAB, but every time I do, I'm convinced that the "treatment" will be worse than my current management. If I put all of my bms in my diaper, it would be pretty hard on me. My IBS and bowel urgency flares up 2 or 3 times a week so I'm fortunate there. Nevertheless, I feel your frustration. It took years for me to accept that diapers were just going to be a part of my clothing as I got older. In response, I stay active, busy and, apart from my screwed up nervous system, I'm in really good shape for my age. There are worse things we can all be dealing with. Life is truly short so slap that diaper on and charge forward!
 
Thanks for the support, I really appreciate it, it's been a really hard time the last week. I went on another family trip and this time my incontinence just flared up and I didn't enjoy one day of the vacation, it was hell. I had a really bad series of accidents on the car ride back home which I just had to be in until we found a place to change >.<

At least I'm getting some sleep despite the terrible clean up I have every morning. Few weeks ago I was sleeping in my mother's room and several nights she woke me up while I was just having a bowel accident in my sleep which I was glad to change because the morning I just slept through my usual early routine.


I'm home now and just so tired and worn out. I need to take a break and stay home for some time. I know I have to come to terms with it but I just can't get there..... Even as a kid I never thought this is how it's going to be....I guess I need some time to get it through​ my head.

It's just hard to go through with things when I'm having a bad spell like this....
 
Regardless being incontinent and dependent on diapers will never be easy, you end up in situations where capacity bulges, leaks will stress the hell out of you, I know because I have been there and still are. Attending a business meeting which you know will drag out, feeling your diaper swells, spending time stressing over when it will leak, well knowing you won't be able to change for a long time, then your invited for dinner, still in the same diaper, getting more to drink. Whoever says incontinence is easy once you accepted diapers does not know what it implies


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miapeters said:
Hey guys, after a long time.

So as most of you might be knowing I've been dealing with both bladder and bowel accidents for a long time. And every now and then there comes a time where the accidents really get me down. Because of the frequency and the eventual clean up it's just always ready to pull me down to that state. Over the years the frequency of my bowel accidents have increased and even my urinary incontinence has. Last year was really tough on me and being stressed by college work didn't really help. It can be really difficult especially when I'm out with people. For the most part I'm dealing with it pretty well but there are plenty of days where I feel like I can't take anymore. Does anyone feel this way? I know for a lot of people who are new to their incontinence it can be a little harder to accept but I won't lie, even after all these years I still have some hope of finding this, I still look at the future where I'm not changing a brief every now and then. It's pretty embarrassing I'm sure most of you know, but I just wanted to let out some steam. Going back to study at a university is a little scary. And I never feel like explaining my situation to anyone, inactive I've never personally told a lot of people because it's still kind of an embarrassing topic. I mean I've been living in the "normal world" for all my life so even though I've lived through incontinence I grew up learning that it isn't normal....... Which wasn't really helpful. Anyway I just wanted to get that out, I know from personal experience that incontinence, especially when bowel and bladder incontinent can really stir up a lot of stress and depression....

Let me start off by saying I'm not incontinent so I can't fully understand your struggle but something to think about: do you think less of someone that takes medicine for high blood pressure? What about medicine for depression? No? Bottom line, there is nothing they can do about it. I could see why this causes you so much anguish but just like them, thereally is nothing you can do about it. Hopefully you can find it within yourself to give yourself a little grace.
 
Right this moment I don't know what to feel. Just too plough through the next few days is all I can think of. I'm just so damn tired..........I can't even fall asleep properly, and when I do I still have to wake up early to clean up.....
 
miapeters said:
Right this moment I don't know what to feel. Just too plough through the next few days is all I can think of. I'm just so damn tired..........I can't even fall asleep properly, and when I do I still have to wake up early to clean up.....

Do whatever you need to do to take care of yourself. It's not the end of the world if you stay in a messy diaper a little longer. With a good barrier cream you can go for hours without a change. Sleep is more important. Take some time off if you need to. Your health is worth it.
 
NotTheAverageMan said:
Regardless being incontinent and dependent on diapers will never be easy, you end up in situations where capacity bulges, leaks will stress the hell out of you, I know because I have been there and still are. Attending a business meeting which you know will drag out, feeling your diaper swells, spending time stressing over when it will leak, well knowing you won't be able to change for a long time, then your invited for dinner, still in the same diaper, getting more to drink. Whoever says incontinence is easy once you accepted diapers does not know what it implies


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I never said it was easy. It isn't but once I accepted I was always going to be incontinent and in nappies or large pads life was better. My wife was a little blunt about it and told me that my incontinence and nightly bedwetting didn't bother her so I should just accept it, wear pads or nappies and get on with life.

- - - Updated - - -

INTrePid said:
Do whatever you need to do to take care of yourself. It's not the end of the world if you stay in a messy diaper a little longer. With a good barrier cream you can go for hours without a change. Sleep is more important. Take some time off if you need to. Your health is worth it.
Good advice.
 
I'm just not sure how I can be okay with myself.
I know I've no choice, I know I'm doing the best I can, but I feel helpless at times. Some days I have really bad bowel accidents and all I can do is just wait until it's finished >.< And there's nothing I can do other than curse at myself. I just feel like taking stuff and slamming it on the floor, the next moment I'm sobbing to myself.......

My doctor says as I grow my accidents can get worse....... I really hope this is the worst it can get because I can't handle more than this..........

The mornings are really taking me down because of the clean up. It's really bad because I sleep on my back and whenever I do have the accident it just be spreading and that makes for probably the worst type of clean up.

At least I got sleep last night and managed to get some rest but every morning has a clean up to depress me......
 
miapeters said:
I'm just not sure how I can be okay with myself.
I know I've no choice, I know I'm doing the best I can, but I feel helpless at times. Some days I have really bad bowel accidents and all I can do is just wait until it's finished >.< And there's nothing I can do other than curse at myself. I just feel like taking stuff and slamming it on the floor, the next moment I'm sobbing to myself.......My doctor says as I grow my accidents can get worse....... I really hope this is the worst it can get because I can't handle more than this..........

One thing to take comfort in is that, at 19, you're probably done with pretty much all of your growth. As awful as things are, they most likely won't get any worse.

I have said on many occasions, Mia, that I admire you for being able to deal with this struggle all of your life. That doesn't change because of perfectly normal human anger and, sure, even self-pity, at times. How could you possibly avoid it, especially when going through a period like the one you've been describing? I assume that you see someone for depression as well as for everything else; though no emotional meds could possibly change what you're going through, maybe an adjustment might help you cope?
 
kerry said:
How could you possibly avoid it, especially when going through a period like the one you've been describing? I assume that you see someone for depression as well as for everything else; though no emotional meds could possibly change what you're going through, maybe an adjustment might help you cope?

I just don't know what to do other than what I'm already struggling to do....... I'm lost. I hope to god that it doesn't get worse...... We were taken out to a restaurant during our trip and that morning I only had a small accident so I was expecting a change but ended up having a second accident which I just didn't want to spend another half and hour or more cleaning up and changing into so I stayed put for the next few minutes finishing dinner. Bad mistake because I hadn't realized how much I had gone into the diaper until we stood up to go. I didn't even want to sit in the car I used the restaurant toilet again. It sounds straight forward how I dealt with it all but inside I was about to explode with frustration........ Ended up being moody and irritable the whole night.
 
So, if you don't mind my asking, do​ you see a psychiatrist? I know that my own anti-depression meds have often been a (literal) lifesaver.
 
I started seeing one recently, the time before that was the beginning of this year...... I'm sure it's helped but I can't express to you how much I'm fed up of this routine of cleaning up and changing. I don't even know how therapy would help but anyway.....I don't know how I feel about taking the pills but I take them. To be honest though I used to be genuinely happy couple of months ago... Least some moments. Now it's like I'm either neutral or just feeling like shit......
 
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