www.incontinentsupport.org

Good Day All:
For most part I have lived by not allowing IC to control my life and try to be active as possible. That being said it hasn't been an easy road. Lately I have been super depressed and not sure where to turn as this isn't a topic unless you been through it you understand anyone can be like no that sux or I understand but they don't also not a topic you can talk to everyone about
So I have neurogenic bladder and bowels and use diapers to control both. bladder hasn't changed bowel seems like its getting worse. I don't want to go into long lecture but I have tried just about everything from cloth to disposables reasons I don't cath big one immune system is junk so infections rate so high no matter how sterile it is still get sick also no matter if cathed every 3hrs which isn't convenient still was wet so diapers was the only logical choice. as for bowel management tried whole host of meds currently using mini enemas but issue is there is no set rate they work sometimes with in 5 mins to not working so not to sound lazy but with my cord injury siting on a shitter is not comfortable so for me and this is a lot of what I do is adapt to what works. but I get rediaperd and let it take its course if by next change or smells will change. which lies next problem since I have no feeling I never no when truly wet or messy. I have looked at meds which takes smell out of it which solves one issue in public. another issue is changing so balance is crap so standing out of question (being incomplete para I have one leg that sometimes works) I can't lay flat what so ever without severe pain so I have adapted to a not so pretty change when a elevated bed not available(short rant if in medical place and need to change would be great to have adult changing locations) basically transfer from my chair to toilet and place new diaper in chair messy changes is whole different animal not at home. At home and most times because mobility is so challenged it has been recommended I have a pca or personal care attendant come into my home and basically help me change and or light house chores. No disrespect to those that live this way but being one of those ab people being changed isn't a fantasy for me and a real gut check yes I have allowed this while sick and in the hospital but try to do as much as I can without help.
so here is my big issues how the hell not to be depressed when at a point in my younger life I need help most days with diaper changes( I manage now but not well and end up with sores and a dc from another person take 15mins tops me takes up to an hour so I get back 45mins each change) most changes hard being a para and a lot of pain issues. it is a big mental hurdle accepting a stranger in my home but having someone come in and be naked in front of them. in non sexual way but prefer a female over a guy not sure why but get really skeevy about a guy touching me in spots ya have no feeling but still. so there is the inability to change issue a younger say mid 30's guy that shits and pisses himself and the biggest is I also have ED. yes I have no choice of the cards dealt but at somepoint I want to start dating again and all this has to be a turn off. Also after 4yrs of being injured I am looking at going back to work part time. so ED not an issue but bowels big issue. anyone have any solution that really works not to sound gross but wish was something like a tampon or anything I good use to basically shut it off till I get home cause(tempted to have the surgery for a poop bag or colonostmy) even with bowel care I still have bowel movements and no clue when they kick in also the other hiccup most of the time my bowel management happens at night or before bed but since they not always happen that's not an option I have tried larger enemas to clear everything out but no luck seems like it agitates me also I haven't had solid stools in few months so that addes to the mess and clean up. yes there has been talk of telling a boss about issues and yes I will working healthcare but not at a point I want to tell everyone and can't guarantee bed available for me to change and always the fear of being walked in on also what happen if the bm happens in front of a patient. those that are medics or nurses or similar field understands being diapered in this field does have an advantage.

basically I am having panic attacks about going back to work in a wheelchair and having bladder bowel issues. but also having issues of deep depression because I am IC and ED and my immobility issues to point I need help shit I am in my mid 30's and want to be independent yes when I am sick a helping hand changing helps but being changed regularly and washed up because I can't get in my shower yes is helpful but find it demoralizing. it seems like mentally getting older by physically decreasing of age. I mean no disrespect I know some people with IC have dabbled with the AB/DL life style which is a big grey area for me I simple don't know enough. but want to be clear I have no want or find it awesome to basically feeling of loosing control of everything if you are one of those this life style even though I personally have no choice take it from a young guy like me this really sux wearing diapers yes have advantages in some things in life but overall suxs I would do anything not to have this. yes I have few things that may be from that lifestyle but not used that way like onsie shirts few other functional adaptions but being changed helps but in no way being exposed to a stranger is fun thing even though again I have no feeling mid chest down but once you have things put in orifices is no way fun try having a urodynamic test you lay on a table with like 4 people in the room they cath you then put a cath in your bum with a probe whole time you naked. I had one test I refused after the first time part of spinal cord test they test to see if your rectal muscle work by feeling to see if you faking they grab your junk try having 4 brand new doctors wanting a chance to try. also I am a very private person I find it very embarrassing when I need to expose my diaper area which with the sore I have now means weekly I have to go to wound care where a really hot nurse touches me thankfully I have no response but very embarrassing. so in end I really fuking hate this life I am not suicidal but really fuking depressed. being IC sux from leaks to everything any way to cope would be helpful

jarhead, I'm sorry that you are having extreme difficulties, especially at your young age. IMHO, an ostomy bag would greatly improve your quality of life. I would most definitely discuss it with your treatment team. I also think that working part time would be very rewarding in several ways, especially working in the healthcare field. Your ability to relate to patients would serve them well, and it would be a good social outlet for you. I wish you all the best.

Wetters

thank you for reply. not sure if you or some can get mentally over living with IC but it seems like I still get anxious but stress has relieved some what since I found quality diapers to use. but the question of changing leaks and having a bm in public are stressful. so after getting sort of comfortable enough to go out and do stuff now thinking about entering the work force it seems like I am reliving the issues again.
I know my skin quality would get better and over all feel better with an aid or personal care attendant because simple things like because of mobility issues getting in the shower is next to impossible also do find reson I end up with rashes or sores is because I simply miss spots so having someone help me has all the positives but a really big pill to swallow its a big part of independence seems like being taken even though it will lead to better quality of life but still on the fence about it. I already feel helpless and useless because simple household tasks used to be so easy now unable to do what I would do to be able to cook myself a meal without any help there are some basics in life not to pound my chest but things men should be able to do I feel like a pos cause I can't . like will say as much of a pain they were getting on cloth worked well at night but I have hard enough time doing laundry now couldn't fit that in and even though I have talked to some that have used it no way I would use a diaper service I think cases of diapers on my porch is bad enough even though they are plain boxes now they weren't always so already suspect my neighbors know I wear diapers but don't need reassurance of that service showing up. will say town knows because I fought them on paying my sewer bill why the F should I have to pay the same amount as a family of 4 does and I never use the shitter unless friends come over I can barely take a shower use dishwasher twice a month and laundry is done by a paid service shit I get a tax credit on non water usage. my mouth does get me in trouble was trying to explain this to sewer dept head and was told no exceptions (but know for a fact the halfway house in town the houses people with MR has a reduced rate because of this fact they also get extra trash can for free. young guy tries to save money and gets bent over) so told him I was going to home depot in next city over and inviting and charging the illegals to take showers and use my toilet in my home was told not allowed grr sorry sometimes rant

jarhead, I'm sorry you are having such a rough time with it. I know it is embarrassing to have someone do things for you, but remember these folks do this all the time.

You can actually get foam anal plugs that are sort of like tampons for managing fecal incontinence.
http://www.continenceproductadvisor.org ... /analplugs

It honestly sounds like you need to find a better way to manage your bowel incontinence. Don't use mini-enemas though, you conditions sound like you will need a full enema for true management. You will also need to use them at around the same time every day (most prefer in the morning so they can be poo free into the late afternoon or later). You also need to realize it takes time to "train" you body to react the same way with each enema. Of course, a steady and good diet with absolutely no straying is an important must as well.