I've been posting on this board for what.. a year now? more or less.. It has been quite an interesting one at that. Going to doctors, trying my ****dest to find out why im incontinent and if there's anything that can be done to stop it. There was a time in January where i made the post titled "struggling to maintain control..slowly losing hte battle." That was where i was up to almost 5 or 6 diapers a day.. But things are not that bad now. I'm nowhere near cured and out of diapers however. Not even close. I still have accidents often enough to not feel confident going without protection at home, let alone in public.
And, i seem to be no better off than i was a year ago. I still have floods sometimes. They are unpredictable. And i often wet a small amount of urinebefore i am able to go to the bathroom.
Doctors tell me they found no neurological cause of my incontinece, everything checks out fine. Yet another dead end. Ive gotten real tired of dead ends, of conjecture, of guesses.
My urologist told me my sphincter does not relax all the way sometimes. That may explain the morning floods.. if i have a time before i go to bed where i try to go to the bathroom and i dont seem to empty all the way. So, hopefully all the episodes and leaks will disappear with this therapy. I would love nothing more than to donate my diapers and resume wearing underwear.
However, i also realized there has to be a point of acceptance..for the sake of my sanity. So, I chose my college graduation, which is 6 months away. My mom agreed.
Maybe i cant be cured. Maybe i will have to wear protection always. I don't know. But, maybe accpetance will make it easier to live with.
Hey there Rob!
Understand that "acceptance" is different than "accepting defeat". You can decide to live in SPITE of your incontinence and consider it as I do...wearing diapers is like wearing glasses. They're there to take care of something your body can't do. I know...diapers carry much more of a stigma than glasses, but this is my version of "acceptance". Nothing says you have to give up on potentially being cured in the future. Never hurts to keep your eyes/ears open for possibilities.
While I just take my incontinence as just another part of my life, I watch and listen for a "sure fire" treatment that does not have potential horrendous side effects. So far, I have seen none, so I just keep going the way I am and being who I am. Maybe a "cure" will come along someday and maybe it won't.
Congrats on getting so far in college! Wow, bet you can't wait until graduation! What will you graduate with or are you just doing general studies without pursuiing a degree?
All the best.
Brian
One of the Moderators
Brian,
I will graduate with a degree in sociology with a minor in social work. I want to be a social worker..but in order to do that i have to get an MSW. Whether i do that or not remains to be seen. Thanks for your words of support.
And your right about diapers being something like glasses. If one thinks as diapers as not something babies wear, but a form of underwear made for those who have a medical conditon, it makes things better. It gets rid of the whole "im being put back in diapers" mentality and stigma. Certianly the diapers i use now are much more dignified than the ones i used previously. The ones i used previously had a plastic backing and rustled. But the Tena Ultra are cloth backed and quiet, and just as effective if not more. So, having something that resembles underwear IE a cloth backed diaper does help with dignity.
Rob
I am glad you have come to terms with being ill and yes incontinence is an illness that takes special care just like Brian said when you need glasses you were glasses brake a leg get a cast and so on.
Me I am still fighting with cathing it is not pleasant but you do what you have to do.
At least the new way they have me doing it I have not had an UTI so that is good.
I been dealing with incontinence for ho I guess 20yrs or more. The biggest part of that time was getting a doctor to diagnose me. Now that I have been diagnosed things are moving along.
One thing that surprises me from what you said about retaining urine and having a flood in the morning your doctor dose not have you cath at least at night. That is what started my urologist having me cathing it started out as twice a day morning and before I went to bed but now it is three times a day.
Life goes on and we want to make sore we get to live our part of it I want to watch my grandkids grow up they are my life plus my wife and daughter.
Take care
Lyle
Lyle,
Your comment about cathing is something i have wodnered myself. I think it's because he wants to try conservative measures first. I did not mention to him the full bladder feeling at night and flood in the morning becase when i saw him i didn't nail down that tat was hapenning. Currently, the route that is being taken is i will look into pelvic relaxation therapy, and adusting meds. It may invovle a 3 hour drive. That is the LAST thing i want to do. I am in the height of my college career, and time is money when you are working on college work, especially if you have a disabilty that makes it difficult to focus, as i do.
Rob -
As a person who went through high school and college graduation ceremonies with incontinence issues - in high school i could go through daytime - usually, without a diaper, but i did wear during my senior year AFTER I turned 18 - because my school was rediculous and my school nurse "seriously questioned whether an student in diapers should be in a public school." Senior year we got a far younger (and better informed) nurse who saw no issue with a student who wore diapers (and i know i was not the only student - or faculty who wore attends, luckily my guidance counselor had MS and let me use his bathroom to change). I'd highly recommend a diaper as the ceremonies are usually long, the bathroom is going to be away from where you are sitting AND it is a distraction to have to go to the bathroom and be the only guy walking to the bathroom (not to mention the gown and cap that makes everything much more difficult to use the bathroom.) And the gown WILL prevent anyone from seeing your bulge. My biggest regret was not wearing protection for my high school graduation. The fact that i had a double diaper molicare with pampers stuffers and plastic pants for my college ceremony made it easier as I had already moved all my stuff into a moving van to go home and only had a backpack for stuff for the rest of the day. plus I had a film crew (long story, i was helping the state with a video) filming me during the ceremony and I had a party at a brew pub, with the diaper, i went 6 hours without worrying about my bladder after spending 6 yrs (multiple minors and some grad credits) working for that piece of paper. For that alone - I'd recommend anyone with even a possibility of an potential issue wear protection on those "once in a life time events."
Mike R.
Mike,
I hear you.. wearing or not wearing protection is not up for debate. I do wear diapers 24/7. I do not use them all the time, however. I make reasonable efforts to use the bathroom when i have the urge. And thinking about my college graduation cermony is a LONG way off.. i still have to pass the senior project. Which i have no doubt that i will make it, but it will take a LOT of hard work and dedcation and focus, thus incontinece treatments are not very important to me right now.
Rob
You have the right idea and what Brian said sums it all up for all of us "acceptance" is different than "accepting defeat"!
Me I am still trying to cope with cathing and about ready to give it up and go back to where I was before letting doctors mess me up anymore.
I hope you get good grades in collage
Lyle
