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giantguy99

I am incontinent it would seem. :(

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I am not ashamed for recently becoming IC but I am not happy about it either. I am making this blog more for advice about my own situation then for support but I think I need some support as well. I have fecal incontinence for as yet unknown reasons (seeing various specialists about that) and have been forced to wear diapers practically 24/7 for a few months now. Whenever I get diarrhea for any reason (right now it's the side effect of a medication that seems to be totally necessary) I simply cannot hold any of it in. I suspect that I probably damaged my muscles when I was younger permanently and while the muscles might very well be strong I believe that they are simply unable to form a proper seal that will hold well under pressure from any kind of diarrhea. I suspect I have Sensory processing Disorder(SPD)(not diagnosed yet) and my inability to feel the urge to go until the last 20 minutes (or less nowadays) happens to be the culprit I believe. SPD is a condition that causes the patient to process information from their senses in ways that are not normal. Here's a link to some general info about SPD if your wondering what it is http://en.wikipedia.org/wiki/Sensory...ssing_disorder.

When I was homeless I used to walk around a lot (averaged literally 10 miles a day) trying to find a job. I abused my body in various ways including holding it in too long because I did not feel the need to go until maybe 20 minutes before bursting due to lack of sensory input it appears(again I have not been diagnosed with this yet). I think I have inadvertently and permanently damaged the seal on my sphincter and that while the muscles are most likely strong the possible scars on that part of me due to damage are making it impossible for me to form a proper seal that's incapable of holding anything that is of slightly less then average consistency. As crazy as it sounds but I would rather keep taking my Metformin (Glucophage) for diabetes (I am pre diabetic) and deal with being IC instead of having to switch to something else because the Metformin will not kill me or do something nasty but I cannot say as much about other medications as there's no way to be 100% sure what the side effects would be if I did. Even then if I get prescribed any medication which I will soon for mental health purposes anyways and it has diarrhea as a side effect then I am screwed anyways. I think I would rather just live with being incontinent as opposed to getting even more crazy then I happen to already be.

I am trying to just make sure I am not doing this to myself because I was one of those individuals who wants to be IC. I just seriously believe that this is just the best choice for me and I am only making sure of that and I second guess everything I do these days just on principle. I have already placed my mental health at risk because of this by not taking certain medications (mental health ones) more because I wanted to wait and get a diagnosis for damage I suffered years ago and I wanted to make sure me and my doctors knew what we where dealing with before prescribing anything but also because certain medications I used to be on actually made things worse. Can anyone reading this blog find any fault with my logic and reasoning here and tell me accordingly as my rationale can easily be called into question? I am a little scared as these are major changes in my life and whatever I do I know this will affect me for the rest of my life and I really need to know that this is the right thing for me to do.
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  1. Maxx's Avatar
    Things I don't know:
    1. Lots of your history and details.
    2. many of the things I would need to know to be an MD
    3. anything about sensory processing disorder
    Things I do know:
    1. Even with a perfectly healthy sphincter, on the thankfully rare occasions I have the runs, runs beat sphincter most of the time
    2. Interaction between endocrine and digestive systems are incredibly complex. There are lots of things that can make them both go haywire. I was a total mess (pun intended) during and a month after a short course of antibiotics. Couldn't continue marathon training because I couldn't absorb enough calories to do the miles necessary - everything was shooting through too quick. All better now.
    2a. antibiotics may have only been part of the story. At the time, I was around 6% body fat, ideal racing weight. Things were still OK until I got to 4%, then turned to shit. pun intended. Yes, fat cells are part of the endocrine system, secreting their own hormones. Too little fat can be just as bad as too much, just in different ways.
    3. If its possible to get your pre-diabetic condition sorted via exercise and meticulous attention to diet, that's better than drugs. If I had to put money on it, the pre-diabetes issues are the first place I'd look for a solution.
    4. There are probably a hundred people here who know more about fecal incontinence than I do.
    5. I can't solve your problem, but I didn't want you to think that you were shouting at an empty universe.


    2.
  2. giantguy99's Avatar
    Here's a old blog I made that tells about my past. Certain things have changed since then fyi. http://www.adisc.org/forum/blogs/acc...ss-relief.html

    If you notice some inconsistencies in this blog by all means ask for clarification because I was probably dead wrong about myself about a lot of things when I made this blog. This blog should still provide significant insight into my history. I just want to make sure that I am making the right decision and could use some perspective on it. As for my sphincter being healthy I used to hold it for way to long when I was younger because my parents took me camping to much and I never thought about issues like this when I decided to only use a tree to go #1 and hold (sometimes for 3 days) my #2's because I do not like to sit down in a outhouse covered in the crap of the 3 months of previous slobs when I was a kid. My condition of being pre-diabetic is just fine as I have reversed it in a month before I started crapping myself(A1C went from 6.5 to 5.7 in 35 days when I found out). When I have a accident it's any kind of diarrhea not just the really loose stuff. My tests on that side of the issue are showing normal levels of blood sugar as well and I doubt diabetes is the problem though they could be better. I think I will be fine but for the time being at least it looks like I will need to go 24/7.

    I am just concerned because I think this could get worse and I will need to be on some psyche medication soon and if I had to choose between being IC or having some other side effect I think it would be better for me to just be IC. But from a moral and ethical point of view I want to make sure that I am not simply doing this because I just happen to already be into diapers anyways. Also about sensory processing disorder (again I have not been diagnosed with that just shown symptoms of it) Basically I do not feel or sense a need to go now when I am out and about walking long distances until the very last few minutes usually. SPD can cause under responsiveness in certain senses like pain receptors and I can easily damage myself in small degrees without even realizing it. I think I have fractured both of my thumbs and never noticed it and I never knew I once fractured my shin(just a stress crack) in a accident involving a fractured ankle until years after the fact. I do not even feel cold in single digit cold weather. While I do feel pain I suspect that I feel it a lot less then a normal person would. Does this help? or would you like me to provide more info?
  3. dogboy's Avatar
    I know quite a bit about diabetes as my wife has been a type I diabetic since she was 20. There are a number of medications that can deal with diabetes. As Maxx advised, if your pre diabetic condition is being caused by being over weight, definitely lose the weight. There are so many serious side effects caused by diabetes that you should try to avoid them at all costs. At this very moment, my wife is on her kidney dialysis machine as we are licensed to perform home dialysis. Other side effects are loss of extremities such as amputation, blindness, high blood pressure and stroke. The list goes on.

    I believe I could live with urinary incontinence without it being much of a problem, but I would not want to be fecally incontinent because the smell impacts on the people around you. Because I'm a choir director, I have to work in close proximity with large groups of people, sometimes for hours, so my situation may be different from yours. Perhaps you can make this work, but it will be difficult. With all of your medical problems, you may not be employed at present, but your future may change.

    If I were you, I would explain your concerns to your doctors. They are in a better position to make some of these decisions. I can understand the lure of wearing diapers, as I share that as well. It might be a better experience for you though if you have more control over your body.

    Lastly, I'm sorry that you've had a rough time in life, and that you have a number of medical problems. Again, work closely with your doctors and take their advise, at least within reason.
  4. giantguy99's Avatar


    Quote Originally Posted by dogboy
    I know quite a bit about diabetes as my wife has been a type I diabetic since she was 20. There are a number of medications that can deal with diabetes. As Maxx advised, if your pre diabetic condition is being caused by being over weight, definitely lose the weight. There are so many serious side effects caused by diabetes that you should try to avoid them at all costs. At this very moment, my wife is on her kidney dialysis machine as we are licensed to perform home dialysis. Other side effects are loss of extremities such as amputation, blindness, high blood pressure and stroke. The list goes on.

    I believe I could live with urinary incontinence without it being much of a problem, but I would not want to be fecally incontinent because the smell impacts on the people around you. Because I'm a choir director, I have to work in close proximity with large groups of people, sometimes for hours, so my situation may be different from yours. Perhaps you can make this work, but it will be difficult. With all of your medical problems, you may not be employed at present, but your future may change.

    If I were you, I would explain your concerns to your doctors. They are in a better position to make some of these decisions. I can understand the lure of wearing diapers, as I share that as well. It might be a better experience for you though if you have more control over your body.

    Lastly, I'm sorry that you've had a rough time in life, and that you have a number of medical problems. Again, work closely with your doctors and take their advise, at least within reason.

    I know about the possible amputations I have a friend who knows all about me (not a AB/DL himself just aware) and he is a Prostheticist (he makes artificial limbs for the amputee candidates). I have also lost 124 pounds in 12 months. I am 6'6" tall and now weigh only 250 pounds ( I am not overweight my bones are heavier then normal making my BMI weird). I have also started taking chlorophyll tablets to deal with the smell. between my diet and medications I think I should be fine on a physical basis I was just thinking how "convenient" it was for a AB/DL like me to need diapers for a medical reason rather then for fun. I am quite concerned about how this will affect my social and work life (I am on disability and as of yet I do not have a job but I am hoping to change that eventually). I have tried to simply seek alternative treatments (and will continue to do so) and I am open-minded enough to ignore the lure of diapers that I simply will never wear because they are absolute pieces of crap that I would never use again. I want to be comfortable with this part of me as soon as possible so I can get back to work.
  5. kerry's Avatar
    I would like to echo dogboy's comment about your health problems: it sounds as if you've had more than your fair share, and I'm sorry.

    About the current issue: I too had the well isn't this convenient thought when I became IC a year ago. I mean of course it was not "convenient" in any real world way, but here I was, a woman with a history of interest in AB, and I was suddenly in a situation where I was being forced to wear diapers. And when meds were not working...over and over and over again...it was frustrating as hell, but I know there was a part of me that was saying, OK, fine: I have to wear diapers now. So that's a thing. I do completely concur with what dogboy said about fecal v. urinary IC: I don't know if I could handle the former. But something else in all of this keeps my attention.

    You have said several times that you "haven't been diagnosed" yet. And when the suggestion came to see doctors you did not respond to it. So I'm asking it directly: have you seen a doctor about this issue? If you have not, then you really need to. This is an an enormous bodily change, and you do not know what is causing it. That ignorance could be extremely dangerous. Please see a doctor and listen to what he or she says.
  6. giantguy99's Avatar


    Quote Originally Posted by ICkaraokegirl
    I would like to echo dogboy's comment about your health problems: it sounds as if you've had more than your fair share, and I'm sorry.

    About the current issue: I too had the well isn't this convenient thought when I became IC a year ago. I mean of course it was not "convenient" in any real world way, but here I was, a woman with a history of interest in AB, and I was suddenly in a situation where I was being forced to wear diapers. And when meds were not working...over and over and over again...it was frustrating as hell, but I know there was a part of me that was saying, OK, fine: I have to wear diapers now. So that's a thing. I do completely concur with what dogboy said about fecal v. urinary IC: I don't know if I could handle the former. But something else in all of this keeps my attention.

    You have said several times that you "haven't been diagnosed" yet. And when the suggestion came to see doctors you did not respond to it. So I'm asking it directly: have you seen a doctor about this issue? If you have not, then you really need to. This is an an enormous bodily change, and you do not know what is causing it. That ignorance could be extremely dangerous. Please see a doctor and listen to what he or she says.

    oops sorry yes I have seen doctors actually and in fact I am about to see a specialist soon. What I have in fact been diagnosed with so far is Depression,Asperger's syndrome, and incontinence. I am showing symptoms of Sensory Processing disorder(SPD), Paranoid,schizoid,schizotypal, avoidant personality disorders. Also I seem to have obsessive-compulsive (or obsessive-compulsive personality disorder not obsessive compulsive disorder). All in mild or barely moderate severity I might add regarding my personality disorders that I have not been diagnosed with yet if at all. My primary doctor already knows it all (including being AB/DL). I am well aware of what some of these issues are and I am confident that this is not going to kill me but I am seeing a doctor anyways just to make sure (I am mildly paranoid after all as it seems to actually be useful in situations like this) it's not colitis or colon cancer or something like that. My family history includes next to no cancer as I have the gene that makes me resilient to that I suspect. Trust me when I say this I would absolutely have to be exposed to a carcinogen for a very long time to get cancer but I am taking the necessary precautions anyways to make sure that none of this is happening. I believe that the damage is most likely permanent in theory as I suspect I have physical scars on my sphincter that make it impossible for it to properly seal itself up right(in regards to most diarrhea at least). This would be consistent with the unintentional abuse I put my body through as my pain receptors are deadened (I don't feel as much pain as a normal person would) and this is all speculation that SPD is the culprit to the whole pain issue but I definitely happen to be resistant to pain without needing a doctor to tell me that.

    I am also seriously thinking that trying to control this with medications is a bad idea as I am not the least bit concerned about being IC and I have no clue what is going on inside of me right now. The system failed me utterly once and I am trying to focus on getting better now. I will go to great pains to make sure that this effects those around me as little as possible as well. Honestly I don't want to even try to use medications to deal with this because the side effects are not necessarily worth it from my point of view. I just wanted to make sure that this is a good idea in the first place. And I apologize for not clarifying this sooner ICkaraokegirl and Dogboy I think I was just having issues communicating this because I was not thinking clearly that's all.
  7. Frogsy's Avatar
    Accepted,

    Sorry that you're having a rough time with this. I know medications can be really cruel with the side effects. If it helps, I also would never make it while sick in that way in twenty minutes time! I think it's normal to rush to the bathroom if you are having diarrhea. However, it does really suck that you have that at all. So frequently, it causes its own set of problems. I can understand why diapers are a safer bet if this is a constant part of your life right now! At least, on the bright side, you don't mind diapers. Hopefully some work in your meds could help you out, though.
  8. giantguy99's Avatar


    Quote Originally Posted by Frogsy
    Accepted,

    Sorry that you're having a rough time with this. I know medications can be really cruel with the side effects. If it helps, I also would never make it while sick in that way in twenty minutes time! I think it's normal to rush to the bathroom if you are having diarrhea. However, it does really suck that you have that at all. So frequently, it causes its own set of problems. I can understand why diapers are a safer bet if this is a constant part of your life right now! At least, on the bright side, you don't mind diapers. Hopefully some work in your meds could help you out, though.

    Well I have some mild good news today. I had a accident while doing volunteer work at a church today (I was surrounded by people when it happened) and the chlorophyll tablets seem to be working quite well in regards to the smell. No one seemed to notice. As for the diarrhea well your right at least I was already into diapers for the past 21 years. Keep in mind I never even had a name for what a AB/DL was until 6 and a half months ago. Hilariously this seems to be as bad as it looks, one of the "nicer" problems I seem to have had just for that reason. i'm actually feeling more comfortable with myself then I ever did in my entire natural life and after all I have been through I seem to be doing quite fine as this crap has not killed me yet!

    I am more concerned about the moral and ethical implications of this as like I said it's "convenient" to have to need to wear diapers 24/7 because I do happen to have medicaid and medicare. I will not bother with the process though because honestly I would prefer cloth which can't be covered (still more cost effective then disposables) for daytime use only and disposables at night for protection and regression from a site that I could never get coverage for anyways. I was already regressing (well poorly regressing as I have no caretaker) most nights anyways. This seems to be as odd as it sounds not all that bad though I suspect that is just me being unbelievably "lucky". I was just making sure this was in fact the wisest choice I could be making both personally as well as medically speaking because I could have biased judgement here that's all.

    As for my medications well that is not the issue. What can cause diarrhea? Lots of things medication side effects being only one of them. If I get sick with anything that causes diarrhea I will not be able to hold it.
    Updated 26-Apr-2014 at 19:49 by giantguy99
  9. Adventurer's Avatar
    I'm really sorry to hear that this has happened to you All I can really advise is to let the specialist do their thing, and hopefully they'll have some answers for you. I don't know a thing about incontinence, except that it's obviously a tough thing to have to deal with. Really, really hope you get some answers soon! Please keep us updated, and remember that whether your body chooses to cooperate or not, you're still an awesome person. That's the most important thing.
  10. giantguy99's Avatar
    You are not going to believe this! The Metformin(Glucophage) i'm on appears to have a beneficial side effect that no one myself included could have anticipated! As most of you know I have significant mental health issues and well the Metformin is clearing some of them up better then the dozens of medications I used to be on in the past! I kept on changing to stuff that had side effects that would have killed me or did more harm than good and now here I am finding one prescribed to me for something other then for mental health reasons and I have never felt this good about myself in years! I am still having cognition issues (staring episodes) but they are greatly reduced and my depression has been completely eliminated as well. Also I seem to be more aware of my surroundings and able to think more clearly though that could use some more improvement. Hilariously I think I can actually live with being IC if that is the only problem I have with this stuff!

    I will still see my doctor's and all and keep in mind that the reason why I was not on any medication was because there was only 1 other medication that seemed to help (it was Seroquel) and losing the ability to swallow and choke on my next meal seemed kinda redundant to continue taking that crap. I was working on trying to get diagnosed with multiple issues because psychiatrist's always try to medicate things like this even though they have no clue what is wrong and I decided to stop the medication I was on last and just wait for a diagnosis and told them all about that and just allowed myself to be monitored instead. Then the Metformin happened and everything changed!
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