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miahere
January 14th, 2017, 05:03 PM
Hello everyone, Mia here, in new to this forum and I'd like to share my story and I'm open to any questions.
I was born with several complications and had several surgeries and ended up being bowel and bladder incontinent. I was also diagnosed with ADHD as a child. I went to a mainstreamed school and dealing with wearing diapers 24/7 wasn't easy. Because the incontinence was so bad I had to wear thick absorbent diapers to manage with it. That's still the situation. I usually have 4 or more bowel accidents a day and also a lot more bladder accidents. Changing and cleaning up after a bowel accident is the worst. Especially in the morning because during the night I have two bowel movements in my sleep and I don't wake up for it, if I'm lucky I'll have one. So I have an early morning routine to clean up and change.
There are instances when I would have more than one bowel movement at the same time so I resort to plastic pants as well over my diapers. It's frustrating. Mostly because it can happen at any time. During class, while I'm on the bus home, while having a meal with my friends, it's just so unexpected and unpredictable. It's a real problem with classes because I have to leave to change quickly to avoid things like diaper rash.
Ask throughout middle and highschool no one really bullied me but I was picked on a little mostly by the girls rather than the boys. I've only been in two relationships and I know they both broke it off because they couldn't handle the fact that I was incontinent. They were nice guys, but it just didn't last. I've been asked out so many times but as soon as they found out about my problems they backed off.
My problem is now I'm in college and I am starting to feel a little lonely. I feel like an outcast. I tell myself I don't need anybody but I don't feel that way.
Does anyone think whether anyone will accept me with this problem, I feel like in today's societyb this is one of the worst problems to have because having to wear diapers 24/7 isn't something people are comfortable talking about.

I'm open to any questions and advice I can give and take. Don't hesitate to ask any question.

Just JT
January 16th, 2017, 06:49 AM
Is there some kinda equipement youncannuse like a colostomy bag that will help with that part?
As far as bing lonely that's hard. Having a relationship with someone I can see being hard cause they might have a perception of you having absolutely no control, which is what it sounds like. So furthe down the road in a relationship it doesn't give a real pleasant experience when thinking about any sexual activity. Not sure if that's sometng youncan regualte or control at all. I know some foods will help and make it easier to cleanup after. That might help. I'm not even sure of what I'm saying is a help. But I'm willing to talk about it if it helps.

Welcome to VT btw. Hope you enjoy it here

miahere
January 16th, 2017, 10:07 AM
Is there some kinda equipement youncannuse like a colostomy bag that will help with that part?
As far as bing lonely that's hard. Having a relationship with someone I can see being hard cause they might have a perception of you having absolutely no control, which is what it sounds like. So furthe down the road in a relationship it doesn't give a real pleasant experience when thinking about any sexual activity. Not sure if that's sometng youncan regualte or control at all. I know some foods will help and make it easier to cleanup after. That might help. I'm not even sure of what I'm saying is a help. But I'm willing to talk about it if it helps.

Welcome to VT btw. Hope you enjoy it here

In reality I don't have any control, I've had surgeries in that area before and another surgery for a colostomy will have major risk. It's like I was cornered into it. All through school it wasn't easy. Most people didn't say anything about it, but there had to be a group of people who would pick on me. Actually a colostomy would solve a lot for me, I would still wear diapers for urinary incontinence but it would be easy to clean up and change.
The diapers I wear are just really thick and large around the back area because my incontinence is pretty heavy. Plus I'm a swimmer so I tend to burn through a lot of food and get hungry.
Thee problem is it happens when I'm out of the house, I carry a bag with everything I need to change and clean up but it's hard in public toilets. At college I use the handicap toilet, but outside there are only a few. Accidents just happen so randomly though.

Anyway being intimate with someone won't be easy, during the night I have 2 bowel accidents, and I don't wake up for it even which is pretty demoralizing when I get up in the morning to a soaked and filled diaper. Mornings are just the worst >.<
I don't know if anyone could advice, but I just want to vent a little if that's okay.
I'm happy to give advice on anybody with similar situations/ having to deal with bedwetting or just accidents in general.

Just JT
January 16th, 2017, 04:44 PM
I'm sorry. I'm at a loss for what to say. I feel bad. I can usually muster up so,etching encouraging to say usually. I just don't know enough about your condition. And it sounds hard to deal with

One though I have is can yountrack your food intake to when you poop or anything?

If you can, and can time that, you could probably manage it somewhat better?

miahere
January 16th, 2017, 05:06 PM
I'm sorry. I'm at a loss for what to say. I feel bad. I can usually muster up so,etching encouraging to say usually. I just don't know enough about your condition. And it sounds hard to deal with

One though I have is can yountrack your food intake to when you poop or anything?

If you can, and can time that, you could probably manage it somewhat better?


Don't feel bad, I didn't want to do that :p

Actually I've tried that when I was small. actually my mother did. But anyway the times are really random, once I was on the bus on the way and had a bowel accident, a few minutes later another big bowel accident came. I had to awkwardly walk home in a full diaper. That was a rare thing to happen, but just goes to show how unpredictable it is. The only sure one is I'll have two or if I'm lucky one in the night. But even that can be anywhere within 8-10 hours. Either way if I have a bowel accident I try to change as soon as possible to avoid things like diaper rash or anything. I wear pretty heavy duty diapers so the smell doesn't really get out >.<

bentheplayer
January 18th, 2017, 09:27 AM
Since I am not aware of your exact condition I don't know if this is an option for you. There seems to be various new non-surgical options available to treat fecal incontinence apart from colostomy. Perhaps you could discuss the viability of pursuing them with your parents and then maybe your doctor?

http://www.mayoclinic.org/diseases-conditions/fecal-incontinence/diagnosis-treatment/treatment/txc-20166903

miahere
January 18th, 2017, 11:43 AM
Since I am not aware of your exact condition I don't know if this is an option for you. There seems to be various new non-surgical options available to treat fecal incontinence apart from colostomy. Perhaps you could discuss the viability of pursuing them with your parents and then maybe your doctor?



Thanks a lot for the suggestion i visited the link. but actually I have gone through most of these options. Since my condition is because of a physical problem in the majority of the time it can only be fixed with surgery which I can't have. I've already been through hell from a surgery and since then the doctor says that having another surgery in that area has high risk.

bentheplayer
January 18th, 2017, 12:43 PM
Oh well. I am very sorry to hear that those options aren't feasible. How about barrier devices like the Procon-2 or Pristeen Anal Plug? While they are not a cure, they might make life a little easier?

I guess all we can hope for is that some viable new definitive cure will be invented soon. I suppose to the docs this is more of a quality of life issue than a life-threatening one hence they think that the risks from surgery isn't worth it. While it is an extremely debilitating problem psychologically, there will definitely be people who will accept you for who are. Have you tried pharmacological measures? Also you could ask you doc about any new novel treatment that you might be suitable for if you haven't.

You mentioned that you tried food tracking. Perhaps you could try talking with a dietitian to see if there is any dietary strategies that could work for you. They might be able to help you formulate a diet with more predictable gut transit time so that it is easier to predict your bowel movements.

miahere
January 18th, 2017, 01:29 PM
Oh well. I am very sorry to hear that those options aren't feasible. How about barrier devices like the Procon-2 or Pristeen Anal Plug? While they are not a cure, they might make life a little easier?

I guess all we can hope for is that some viable new definitive cure will be invented soon. I suppose to the docs this is more of a quality of life issue than a life-threatening one hence they think that the risks from surgery isn't worth it. While it is an extremely debilitating problem psychologically, there will definitely be people who will accept you for who are. Have you tried pharmacological measures? Also you could ask you doc about any new novel treatment that you might be suitable for if you haven't.

You mentioned that you tried food tracking. Perhaps you could try talking with a dietitian to see if there is any dietary strategies that could work for you. They might be able to help you formulate a diet with more predictable gut transit time so that it is easier to predict your bowel movements.

Actually I've exhausted most possibilities, anal plugs are really painfully for me. I got really sick once and got a lot of complications which contributed to that but I don't want to get into it now. It's not of just dealing with the current situation. I also have urinary incontinence which is actually just over shadowed by how bad my bowel incontinence is.
Thing is while some people might not like to admit the reason no one really wants to have a long term relationship is because of this, but I can't say they are wrong, it is a pretty complicated situation. I've been asked out a lot in high school, but once they found out about this they suttlely broke it off.
Eventually high school or middle school or college people got to know eventually,

idefineme
January 18th, 2017, 04:05 PM
It does sound like you tried the pills . I'm not exactly sure what the are or what they can help with,but my friend goes through hell with this kind of stuff and he takes some pills when he travels or some thing .I'm sorry to be useless but if you haven't heard of this maybe it can help a little. Sorry.

miahere
January 18th, 2017, 04:18 PM
It does sound like you tried the pills . I'm not exactly sure what the are or what they can help with,but my friend goes through hell with this kind of stuff and he takes some pills when he travels or some thing .I'm sorry to be useless but if you haven't heard of this maybe it can help a little. Sorry.

There are no sure fire pills or medication which work, but since mine is a physical problem it doesn't work like that. I've seen the doctors and as "bentheplayer" said it's more of a problem of how to deal with it. Medically there's nothing yet, hopefully in the future there will be done sort of surgical technique which will make it possible, but for now I'll have to deal with diapers.

I get pretty high quality diapers to deal with it, actually they are probably the biggest end ones which are for heavy incontinence they are quite thick too, the problem isn't that, it's the dealing with it when I'm out and about, and having relationships.

Thanks for offering any sort of help, you don't need to be sorry.

Uniquemind
January 19th, 2017, 03:48 AM
Is the condition genetic? Or is it a environmental-developmental condition, meaning it's not coded in genetics persay, but rather something didn't fully develop in the womb, or was it something that didn't develop completely during the infant-toddler years?

Is there any experimental stem cell treatments available?

miahere
January 19th, 2017, 05:17 AM
Is the condition genetic? Or is it a environmental-developmental condition, meaning it's not coded in genetics persay, but rather something didn't fully develop in the womb, or was it something that didn't develop completely during the infant-toddler years?

Is there any experimental stem cell treatments available?

I when I was small I got an infection, things got complicated. I don't want to get into detail but I went into sepsis and had a lot of tissue damage and my organs were failing, both my legs were amputated above the knee which I guess saved me.

Long story short there was a lot of damage "down there", surgery fixed as much as possible.

I'm fine now except for the incontinence and sometimes getting around places with the prosthetics.

As far as I know there isn't any safe treatment options yet, I always bring it up when ever I have a check up with my doctor.

Uniquemind
January 19th, 2017, 04:40 PM
I when I was small I got an infection, things got complicated. I don't want to get into detail but I went into sepsis and had a lot of tissue damage and my organs were failing, both my legs were amputated above the knee which I guess saved me.

Long story short there was a lot of damage "down there", surgery fixed as much as possible.

I'm fine now except for the incontinence and sometimes getting around places with the prosthetics.

As far as I know there isn't any safe treatment options yet, I always bring it up when ever I have a check up with my doctor.

That sounds like it was environmental. (Meaning had the infection not occurred the subsequent problems wouldn't be a thing).

miahere
January 19th, 2017, 05:05 PM
That sounds like it was environmental. (Meaning had the infection not occurred the subsequent problems wouldn't be a thing).

Yes, but the reason for the incontinence was nerve and muscle damage.

idefineme
January 19th, 2017, 09:34 PM
Have you met people out of your family who know about your incontinence and are happy with who you are?

miahere
January 19th, 2017, 10:55 PM
Have you met people out of your family who know about your incontinence and are happy with who you are?

Well my immediate family sure, they are very understanding. But very few relatives treat me like I'm normal. Most of them just treat me like I can't do anything by myself.

idefineme
January 20th, 2017, 02:05 PM
If you ever feel like you need someone outside your family to talk to, I would be happy to listen to whatever you have to say.

miahere
January 20th, 2017, 03:59 PM
If you ever feel like you need someone outside your family to talk to, I would be happy to listen to whatever you have to say.

Thanks, I appreciate it,
It's just as I said before, most of the time I'm outside of home at college or just out and since my bowel accidents are so frequent I'll definitely be dealing with a bowel accident or two or more depending on how long I'm out, if there's a public restroom in which I could clean up and change properly I will, but if not I don't really have a choice but to stay there or leave. Usually I don't wait more than an hour to avoid any type of diaper rash. Everytime I have a bowel accident I just feel so bad, I feel out of control. And if I have to stay in it for a long time it's just worse. Mixed in with the urinary incontinence it's just really difficult.

miahere
February 3rd, 2017, 05:45 AM
I still can't believe that no one has personally experienced incontinence. I know it's not the most common problem at this age but it still happens.

Uniquemind
February 4th, 2017, 02:49 AM
I still can't believe that no one has personally experienced incontinence. I know it's not the most common problem at this age but it still happens.

Well it's kind of a small community here not really representing the public at large.

The closest I've experienced is when I had a bad stomach bug once at school during standardized testing in the 2nd grade.

miahere
February 4th, 2017, 05:44 AM
Well it's kind of a small community here not really representing the public at large.

The closest I've experienced is when I had a bad stomach bug once at school during standardized testing in the 2nd grade.


True, I have met some people online who have similar issues but most of them are males and bowel incontinence isn't that prevalent . There's hardly any female representative for this kind of issue I've realized. Maybe because it is some sort of social stigma.

bentheplayer
February 4th, 2017, 08:45 AM
I don't think that statistically you will find that many people our age having continuous bowel incontinence. Most will probably only have episodic periods of it at most caused by urgency or diarrhea which wouldn't be as helpful for you I suppose. If you are looking for others with the same condition, your best bet will probably be other patients who are seeing the same docs you see.

miahere
February 4th, 2017, 09:13 AM
I don't think that statistically you will find that many people our age having continuous bowel incontinence. Most will probably only have episodic periods of it at most caused by urgency or diarrhea which wouldn't be as helpful for you I suppose. If you are looking for others with the same condition, your best bet will probably be other patients who are seeing the same docs you see.


Probably, although I haven't met anyone who sees my doctor plus with patient confidentiality stuff I don't think it's that easy. I have met some paraplegics in my physiotherapy sessions, but most have been able to get a colostomy or an scphinctor or a like that. And it's not the kind of subject people talk about openly.

Anyway thanks for everybody's advice and help. If you have any questions I'm okay to answer....

bentheplayer
February 4th, 2017, 09:20 AM
Probably, although I haven't met anyone who sees my doctor plus with patient confidentiality stuff I don't think it's that easy. I have met some paraplegics in my physiotherapy sessions, but most have been able to get a colostomy or an scphinctor or a like that. And it's not the kind of subject people talk about openly.

Anyway thanks for everybody's advice and help. If you have any questions I'm okay to answer....

You can always ask your doctor if there are other similar patients and waive certain parts of your confidentiality rights to allow ur doctor to ask other similar patients if they would be interested to talk to you. I have heard of such stuff going on in some hospitals for the purpose of forming patient self-help support grps.

miahere
February 4th, 2017, 10:56 AM
You can always ask your doctor if there are other similar patients and waive certain parts of your confidentiality rights to allow ur doctor to ask other similar patients if they would be interested to talk to you. I have heard of such stuff going on in some hospitals for the purpose of forming patient self-help support grps.

That is a possibility. Of coarse my doctor didn't only deal with incontinence issues but very issues on that area. I'll definitely try that sometime, thanks for the suggestion.