Being incontinent some of the time impacts mental health too!

slimjiminy

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I am urge U-IC because of nerve damage due to diabetes. That's pretty easy to deal with. During the day, I just need to use the toilet frequently enough to avoid a full bladder. Still, it is possible to lose track of a full bladder, like when you get up off of the couch after hours of watching TV. Still, U-IC is a minor irritation compared to F-IC!

Slowly, I am also encountering F-IC with diarrhea (IBS-d) episodes. Each episode is a nightmare! I can go a week with little or no risk of IBS-d. Sometimes, it just requires one void and then I am ok. Other times, it can go all afternoon. It can be so unpredictable! Today was a disaster after having a good week. I resumed wearing pull-ups that I used to buy. But in the parking lot of the grocery store, I knew I was in trouble. I tossed everything into the truck and tried to suppress the coming storm by sitting in the driver's seat. That helped but I had to major concentrate when driving home.

But once at home, I knew I was in trouble. I became F-IC trying to open the door of the house. The pull-up barely contained it all, but thankfully it did. When will I learn?

There are so many times I can go out without incident. Then there are days like this that shake me up mentally. I have NS Supreme Lites to wear when I think I might be F-IC. But I don't wear them all the time (to save money). Even the cloth backed briefs (like the Tranquility SmartCore) would have been safer than the pull-ups today. Yet it feels like over-reacting to wear briefs all the time.

How long did it take the F-IC here to learn to learn their lesson? Or put another way, how many fails did it take before you mastered F-IC management?

(No ab/dl please)
 

mickdl

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Hello slimjimmy,

I also have diabetes, urge incontinence and can no longer hold thin stools. The intestinal problem I have through diet quite well under control and it happens only very rarely that what goes wrong (maybe once a month). However, pants are not enough for me when I'm on the road, so I always wear diapers anyway. I still have the luck that the bladder empties with three or four cramps almost residual urine free and I do not have to make ISC. But unfortunately that also means that pads or pants no longer work well. Therefore, this question does not arise for me ...

However, I think that the price difference between pants and diapers is not so great. I mean - why should you risk anything? It is always extremely annoying anyway when the diarrhea comes and if that happens on the road is already difficult enough to get halfway clean again. If you then - just because you have worn an unsuitable diaper even have to change clothes, then it is hardly worth it.

I think if it goes really wrong, it pulls you down even more than it already does. Therefore, I would not give me that - even if I had a slight urinary incontinence and would get along with pants or pads ...
 

CheshireCat

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For a decade I have been dealing with radiation induced chronic colitis (cancer treatment). On very rare occasion I would have F-IC, but as I was always very regular in the morning, I still had my bedtime diaper on. Disconcerting, but not a problem worth pursuing with my gastroenterologist. For the last ten months I have been dealing with F-IC that is getting more and more out of control. My gastroenterologist has changed my meds and now sent me to physical therapy to determine if pelvic floor exercises will help.

Yesterday was a bad day. It started off with a proper BM, so I thought it would be a good day. I wasn't able to shower yet, so I changed into a fresh diaper and then it started. I probably went through eight diapers before bedtime. Whether sludge or brown water, I would need to change constantly because I was almost continuously leaking. It was not good. And my skin back there is raw now. I'm going to be going through a lot of Desitin over the next few days.

slimjiminy said:
How long did it take the F-IC here to learn to learn their lesson? Or put another way, how many fails did it take before you mastered F-IC management?
As the cause of F-IC probably has as many different reasons as U-IC, I have a sense that we are all on a slightly different path on how to manage it. I thought I was going to be able to easily manage it because of being so regular. Now, I'm needing the toilet multiple times during the day and night. (i hate having my sleep disturbed!)

I was warned that the radiation could severely impact my life, but when considering death within a short time or issues caused by radiation down the line, it was an easy choice. Now I'm dealing with the effects of that choice. I know I made the right choice, but I need to figure out how to not let it keep me hidden in my home.

I will be watching this thread for other's responses.
 

parcelboy2

Padded Truck driver
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I’m in the OAB and urge incontinence side , but my job as a truck driver doesn’t help using a toilet so I wear nappies , also now when sitting watching tv I can’t hold urges long
One thing that plays on my mind is leaks as I do wet heavy some time even though I don’t have a full full bladder feeling , quite a few times it’s been only a mild urge but a large pee
As for F-IC not yet but I know it will come as if I get glutened I will have bad bowels
I will be watching this as well
 
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mickdl

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Yes - such things tend to make sure that you just want to hide, I can only confirm that. It's kind of a vicious circle that you have to get out of, because the more you isolate yourself, the worse you feel psychologically. In the end, this will have an impact on the disease itself.

I also made the mistake of withdrawing as much as possible at the beginning. This was toxic in many ways and cost me some friendships. But it also took me a while to understand that real friends have no problem with it and those who have a problem with it are not real friends.

In the meantime, I deal with my problems much more calmly. However, dealing with my fecal incontinence is probably easier than with you. For me, the problem only occurs when I have eaten or drunk something wrong - and this usually happens in the afternoon or evening. This sometimes makes restaurant visits a bit complicated, but it can be easily controlled. Only when I drank Corona a few months ago did I feel similar to you for a few days.

Maybe you can somehow get it under control with medication - although as far as I know, especially with chemo - but also with radiotherapy is not so easy.

The only question is what is the exact cause for you. In my case, due to diabetic neuropathy, I only have a limited perception of the bladder and intestines. This means, for example, that I cannot distinguish between intestinal wind and thin stool and also have no real perception of the degree of filling of the bladder and intestines. I often only get both indirectly through a feeling of pressure in the lower abdomen. Even if I get it, it is often difficult to go to the toilet because it often doesn't work or nothing comes.

As far as the stool is concerned, I can only make sure that it is not too hard and not too soft, because both cause quite a few problems.
 

slimjiminy

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mickdl said:
I also have diabetes, urge incontinence and can no longer hold thin stools....
That is what my doc thinks my urge IC is caused by - diabetes nerve damage. From what I've read about IBS-D, is that there can be a nerve issue there as well.
Only when I drank Corona a few months ago did I feel similar to you for a few days.
That is interesting! I did buy two 6-packs of Corona Extra over the last few weeks. I also suffer from the present danger of kidney stones. So at the advice of nursing staff years ago, I drink a bit of beer over a week (no more than one/day), every once in a while. I otherwise don't really drink. And I can say that this does indeed flush the kidneys and felt a noticeable improvement, from the threat of stones. But I've avoided beer for the last few days, so I don't know. I did enjoy some nice squash recently... but who knows with this crap!?!?!

Very frustrating. Thanks also to the others who responded. Radiation treatment has got to be bad all around!
 

CheshireCat

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I was warned by my primary oncologist and radiation oncologist that the chances of radiation being effective were 0%, but if it did work the side effects would become very difficult over time. They were wrong and right; it was 100% effective (10 years remission) and the side effects have been building year after year. Hopefully we will stumble upon an effective treatment going forward.
 

slimjiminy

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What a dope I am! My current issue with IBS-d is due to my eating Black Pepper Steak (beef).

I realized it last night when considering what left-overs I was going to eat. We get it from the Mandarin restaurant from time to time. It's spicy, which is why it is a problem. One more thing to cross off of my list!
 
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NannaAnnabelle

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I'm also in the diabetic neuropathy camp and have occasional fecal issues, the last of which was just this morning. Even minus the occasional accidents I'm still having regular minor anal leakage which I'm trying to get with my doctor about.

Absolutely it impacts my mental health. I'm also finding I'm isolating more and more. Right now I'm on the fence about attending a regular get-away weekend with friends of mine partially due to this.

So far diet & staying on top of my diabetes medicine seems to be working for me the best. I'm also a bit more active which also can't hurt. I do ok with fish and non oily or spicy chicken but my problem is I LIKE oily or spicy chicken. It's those days where I know I'll probably be experiencing problems.
 

mickdl

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@slimjiminy: To be honest I‘m not 100% shure if it was the beer or the food… But I had my tacos often in that restaurant without problems - the only difference was the beer - so who nows…
 

slimjiminy

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mickdl said:
@slimjiminy: To be honest I‘m not 100% shure if it was the beer or the food… But I had my tacos often in that restaurant without problems - the only difference was the beer - so who nows…
I'm 99.99% sure now that it was the Black Pepper Steak (beef) that I was eating, as it was very spicy. Spicy stuff is known to be bad for me. Once the IBS-d settles down again, I will return to the Corona, once/day. I feel like I need a beer at this point!
 

Diaperman95

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slimjiminy said:
I am urge U-IC because of nerve damage due to diabetes. That's pretty easy to deal with. During the day, I just need to use the toilet frequently enough to avoid a full bladder. Still, it is possible to lose track of a full bladder, like when you get up off of the couch after hours of watching TV. Still, U-IC is a minor irritation compared to F-IC!

Slowly, I am also encountering F-IC with diarrhea (IBS-d) episodes. Each episode is a nightmare! I can go a week with little or no risk of IBS-d. Sometimes, it just requires one void and then I am ok. Other times, it can go all afternoon. It can be so unpredictable! Today was a disaster after having a good week. I resumed wearing pull-ups that I used to buy. But in the parking lot of the grocery store, I knew I was in trouble. I tossed everything into the truck and tried to suppress the coming storm by sitting in the driver's seat. That helped but I had to major concentrate when driving home.

But once at home, I knew I was in trouble. I became F-IC trying to open the door of the house. The pull-up barely contained it all, but thankfully it did. When will I learn?

There are so many times I can go out without incident. Then there are days like this that shake me up mentally. I have NS Supreme Lites to wear when I think I might be F-IC. But I don't wear them all the time (to save money). Even the cloth backed briefs (like the Tranquility SmartCore) would have been safer than the pull-ups today. Yet it feels like over-reacting to wear briefs all the time.

How long did it take the F-IC here to learn to learn their lesson? Or put another way, how many fails did it take before you mastered F-IC management?

(No ab/dl please)
I have only been going at it about 3 years. But 2 of those years was only once maybe twice a month. The last 6 to 8 month I have been having it 2 or 3 times a week. I us up until bout 4 am this morning and never had a urge. I went to bed and at 8 am I woke up my wife was asking me if that was me. I she said one of us smells like shit and I checked myself. I pulled the covers back and OMG I could smell it. I as so tired and nauseated from my GP I did something I never do. I pulled the covers back on me and went back to sleep another hour. Then I said to myself you have to go do the deed. That is not like me I never set in it or lay in it but a person can only take so much. Hang in there it does get easier but I do not think any of us master it. I found using blue bed pads for the heavy stuff work the best and get the little shit with wipes and a good soap
 

winterheart01

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Type 1 diabetes here but only have gastroparesis from it, the chronic infection and scar tissue I had were unrelated. Last week i visited the urologist again for checkup, lab test was very clear, so he said I didn't need to come back until next year, other docs and he said my diabetes would cause issues with healing but my endocrinologist said with a HbA1C of 6.3% that's very unlikely....
so far some scar tissue grew back but doesn't prove a problem, I am still leaking enough for no bacteria to build up.
I use a Tandem t:slim X2 insulin pump and that really makes a difference :)
 

ILuvDiapers

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I don’t have any control over my bladder, and I am totally bladder incontinent all of the time. I’ve been like this since birth I’ve always been diapered. I would say that any and all forms of IC can and in my case definitely does impact my mental health. I take Citalopram 40mg and it leaves me feeling like I am stuck in quick sand, I also take ZopIclone to help me to sleep 😴 cause the SSRI Citalopram made me get insomnia. I also have psychological counselling to help me cope, being total IC has screwed with my head for a very long time!
 

winterheart01

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ILuvDiapers said:
I don’t have any control over my bladder, and I am totally bladder incontinent all of the time. I’ve been like this since birth I’ve always been diapered. I would say that any and all forms of IC can and in my case definitely does impact my mental health. I take Citalopram 40mg and it leaves me feeling like I am stuck in quick sand, I also take ZopIclone to help me to sleep 😴 cause the SSRI Citalopram made me get insomnia. I also have psychological counselling to help me cope, being total IC has screwed with my head for a very long time!
I used zopiclone too for a short time, worked really well , but since i need to take 15mg diazepam before bed to relax the pelvis (so my bladder empties z bit more and easier at night) i no longer needed zopiclone.
I too have 0 control of the sphincter because it's all cut away but my pelvis is so strong it is capable of putting so much pressure i can hold it a few seconds unless I move. and i often wake up with urge but when I turn over it just comes out anyway.
 

greatlake5

Profoundly incontinent since the beginning.
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I've been IC since the beginning. No diabetes, no cancer problems. I experience strong urgency (when I"m awake). Most of my BM accidents happen while I'm sleeping (~75%). I do have BM accidents during the day but they are mostly in the morning (~15%). The rest happen by surprise, later in the day or later. Regardless of when I load my diaper (~95% are semi-solid - no diarrhea or loose stool), it's depressing. Whether it's in the morning with a load my diaper when I get up or even during the day, sometimes I just get tired of it. Wetting is easier to manage. But messy accidents can be a killer. I know my life hasn't changed. And yes I'm used to it. Most of the time I just move on. This is life as being IC.

All of this impacts my mental health. I admit this isn't fatal. In the beginning when I was young and going to school, I just wanted to die. I hated diapers.
I hated wet and dirty diapers. And thank God my mother took me to see a therapist. It took some time to learn about myself. It's a long story. Let's just say I still see her today. As for depression, I still feel that. But it doesn't crush me like it used to.

I think the best lesson I learned was that we can manage IC. Don't be crippled with depression. And try not to complain.
 

Diaperman95

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winterheart01 said:
Type 1 diabetes here but only have gastroparesis from it, the chronic infection and scar tissue I had were unrelated. Last week i visited the urologist again for checkup, lab test was very clear, so he said I didn't need to come back until next year, other docs and he said my diabetes would cause issues with healing but my endocrinologist said with a HbA1C of 6.3% that's very unlikely....
so far some scar tissue grew back but doesn't prove a problem, I am still leaking enough for no bacteria to build up.
I use a Tandem t:slim X2 insulin pump and that really makes a difference :)
I have a lot of my own health issues but I am so grateful I have dodged the bullet on diabetes. Sadly I still have neuropathy in many places in my body, incontinence and Gastoparesis too. Sadly that happens to be one of the worse thigs a diabetic can get but they tell me it is idiopathic. A fancy word for they have not got a flipping clue why.

I hope you hare keeping that gastoparesis symptoms in check along with the other bad things it can cause. I think you are blessed to be able to have a insulin pump to help regulate things...
 

winterheart01

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Diaperman95 said:
I hope you hare keeping that gastoparesis symptoms in check along with the other bad things it can cause. I think you are blessed to be able to have a insulin pump to help regulate things...
Luckily my gastroparesis is very mild compared to yours, acid regulators and domperidone for hot meals suffice.
As for the insulin pump it's a godsent, but also a double edged sword, it really helps keeping me out of the ER compared to injections but because this pump has algorithms that react on the CGM results, despite that I enable "Activity" when I want to do something like garden work or going to the store or exercise, I was told to let it inject a bit less insulin for my food, or let my blood sugar go up by unplugging it for a while. Fine so far, but once I plug it back in and do stuff, it still adds a correction shot, even when it's not supposed to, or too much. I told the docs this and they have no solution since it's the device that needs better algorithms imo, but this is the latest in pump development that insurance will pay for.
My solution is to do it the old fashioned way: unplug 1h, start exercise, get a breather while unplugged and then plug in. it would have applied a correction but i never got it, so I'm not low then. You could ask, why not just turn off insulin transfer? because the device starts making a lot of noise after 15 minutes, every 3 minutes then.....so that's technology, never perfect :p
 

Diaperman95

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winterheart01 said:
Luckily my gastroparesis is very mild compared to yours, acid regulators and domperidone for hot meals suffice.
As for the insulin pump it's a godsent, but also a double edged sword, it really helps keeping me out of the ER compared to injections but because this pump has algorithms that react on the CGM results, despite that I enable "Activity" when I want to do something like garden work or going to the store or exercise, I was told to let it inject a bit less insulin for my food, or let my blood sugar go up by unplugging it for a while. Fine so far, but once I plug it back in and do stuff, it still adds a correction shot, even when it's not supposed to, or too much. I told the docs this and they have no solution since it's the device that needs better algorithms imo, but this is the latest in pump development that insurance will pay for.
My solution is to do it the old fashioned way: unplug 1h, start exercise, get a breather while unplugged and then plug in. it would have applied a correction but i never got it, so I'm not low then. You could ask, why not just turn off insulin transfer? because the device starts making a lot of noise after 15 minutes, every 3 minutes then.....so that's technology, never perfect :p
I don't know anything about them but I can imagine it takes a lot of time for the programmers in the world to workout bugs. Then the fact that us humans are so damn unpredictable from a real routine it can count on because we are not machines has to make it hard. I hope you have been able to relay this to the device manufacture. The more people pointing out the down falls the more they can work the problems.

I have always been real worried my wife getting this disease. She is now having to take meds daily now to help regulate it. But Native Americans it runs in their bloodline really bad. This disease has to be the number one causes of death among tribal members.
 

slimjiminy

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Diaperman95 said:
I have a lot of my own health issues but I am so grateful I have dodged the bullet on diabetes. Sadly I still have neuropathy in many places in my body, incontinence and Gastoparesis too. Sadly that happens to be one of the worse thigs a diabetic can get but they tell me it is idiopathic. A fancy word for they have not got a flipping clue why.
I believe we corresponded about gastroparesis before.

Last night I had a serious bout of it, starting with a vomit. The worst part of it was the 2-3 hours of cramping that followed. At first, I couldn't tell if it was back pain or gut pain. I had foolishly curved my back backwards to straighten up before bed but may have pinched some nerves doing that. That put me in back pain for a spell. But after the vomiting, I was feeling a pain in the gut that lasted for hours (until I was finally able to fall asleep, as I was so tired). I couldn't lie down (at first), sit or even walk around. Eventually, I did all three until I was finally able to crawl into bed and drift into sleep.

This was a very painful experience -- one that I am not eager to repeat. I think what triggered it was that I had one beer with the two slices of pizza and meds. On a prior occasion last year, I had consumed a couple of beer before dinner. That, combined with the meds, seems to be a trigger. At least I won't repeating the beer before dinner. I could feel what seemed like the stomach trying to force its contents into the intestine, but the intestine wasn't taking it. The cramps were fierce. That sucked!
 
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