suffer with heavy urge incontinence and bowel problems since I was a child I have cut down on my caffeine I’m on medication and under the hospital I wear Nappies 24/7 as i can’t make to the toilet, my next stage Is properly have a botox injection to relax the bladder my fear is if its too relaxed I might it have to use a catheter for bit if the botox don’t work then I might have to use a catheter for a long term . I have autism living independently but I have support and I have a carer see me and takes me out when I not up to driving I suffer a great deal of anxiety and get anxious, headaches a asistigmasism a lot so wear glasses permanently and I get very overwhelmed and emotional when me and my carer are in busy places he makes sure that I need the bathroom disabled toilet as I sometimes need help or reminding of my personal hygiene like not washing problem especially if I had accident in my nappy on my bad day as I have them a lot. On the whole I try keep busy I do drive but I have to plan my journeys especially if I plan a long journey as I get very anxious my bladder will implode its goes on my car seat I don’t want it ,as im scared people will think different reason I wear Nappies, Is to avoid embrassment like if staying night at friend or family or a hotel adlest I feel secure and safe without being questioned, i know its sounds bulky making me feel I’m lazy i do my absolute best to get to the toilet when I can and when im out in a town public toilets are shut I have to ask a pub or cafe to use disabled toilet for that reason, i have im too scared ask and with the bladder or bowel urge warning I got then its too late when I out with my carer in his car he puts a cover on front seat for me when he takes me out. I try ad’and do things for myself but it can be a struggle I don’t give up, So my question is this is it silly for me to wear Nappies? as it might have to permanent.
Thank you for your contribution and valuable input. Explaining what you have to go through is valuable as others reading the forum are probably facing the same problems you do on a daily basis.
Wearing nappies is not a matter of it being silly or not. It is a matter of finding a solution (temporary or not) to a problem.
Let us know how botox injections work as people here will be quite interested to see if this a technique worth considering for themselves.
We wish you all the very best.
Thank you for being understanding it was extremely difficult coming forward to this I was scared to do this , Yes plenty of people in similar situation out there, im wearing attends active slip nappies and medication but get drowsy my stepdad drives me to hospital appointments as I struggle with communication explains the gaps, I have back problems and cardiology chest problems as had surgery on it and few physical symptoms with it I use a cane or wheelchair occasional , their is more I wanna add it long bit of a story as what i do or did was solution base threw child to adult and 2 more question to add. I had lot of assessments for autism and learning, hearing test and eyes tested for glasses and occupational therapy and pediatrician assessing my care needs, start at special needs school and was in Pampers Nappies 1995 aged 6 very skinny and also had a maclaren special needs buggy for home and for trips out like swimming or depending on which school carer staff I had take me in baby changing in buggy one was nice going you wet your nappy and comfort me as I was upset then one carer shaming me because I poo my nappy I hated it I was embarrassed she did in front of my class in infents at special school im. Like excuse me they didn’t need to know and I didn’t have confidence or understanding . took me years to be toilet trained on and off till I was off nappies still bedwetting and occasional accidents. Getting threw secondary school and college passing my exams as was top of class some supported and mainstream I had a big surgery off for months recovering and needing help . Then in at 20 I was badly abused sexual by a mate and then I need lot of help or still do family social services community nurses and counselling sadly my incontinence got bad again and after 12 years I was back in Nappies at night then soon 24/7 as my bladder would inplode big time and my mum or stepdad check on me a lot, I am living in own flat but carer helping taken me out when not up to driving and paperwork stuff like appointments, disability benefits, blue badge stuff, and making sure my wellbeing is okay and i try keep busy, i do work but very limited hours and volunteer activist for disablity I am extremely anxious and very emotional and get very exhausted my parents worry about me when things are too much or I over do it, I won’t give up but I spend my days sometimes in bed all day I fight my best they said I should be so proud not ashamed , like passing my automatic theory and driving test first time got 3 year renew licence as dvla check im okay to drive even a nice drive to 300 miles to Yorkshire coast to see my gran and uncle and auntie on my mums side but stopping at services for nappy change in disabled loo making sure my shorts shorts and sandals no socks was okay as I overflow it was hot summer, and buy lunch half way but thats because I need to time to prepare as take my wheelchair as well if let’s say I go abroad like Amsterdam and Brussels like . Last summer I had airport disability assistants Back to questions
(1) at age 30 question one for nurses on here When I go swimming as I love swimming but anxious to go get changed in disabled room with carer as its male or female help me as my bladder and bowel is really bad when I take my nappy off what do I do? I am fully dependent on it now and
( 2) my mum and stepdad think I doubt myself too much and say they are proud me and I feel overwhelmed and should I be proud of all achievements if its little things that I Stuggle. I will let you know about the botox injections how I got on im very scared about it i I will still need nappies permanently but hopefully relax my bladder not overflow but I remain positive sorry it was long.
Living with incontinence is one thing, having autism on top of that makes the anxiety and stress a thousand times worse. I have autistic friends so have some idea of how overloaded and stressed you become. You are very brave and all the very best to you.
I have have had bladder problems for years. At the moment I have to wear nappies all the time. I go from being incontinent to complete retention. So wear nappies and often have to self catheterise too. Getting a nappy off in a public place when your bladder wants to explode and getting a catheter in can be challenging. I use the Speedicath flex from coloplast, a godsend, all in a self contained discrete pouch.
Going out is always stressfull. Generally, I carry a tablet bag, big enough to have my tablet and a nappy change and catheters. If I am going to be out for long I wear plastic pants in case of a leak.
In my car I keep a rucksack with a change of clothes, nappies, catheters, barrier cream…and top up my man bag from there.
The radar key is great when it works, I have found sometimes it does not.
It can be be very stressfull when you know you need to change and can’t find a toilet and then a clean one.
One consoling thought is that generally, people are not very observant and whilst you are so self conscious of your emergency, 99% of people around you don’t notice a thing.
I am now used to planning ahead. It is always easier going somewhere familiar where you know where the clean, safe places are to change. It is much harder in new places.
Sometimes when I am panicking I console myself with the thought of wondering how the people around me would cope with the life journey I have been on, with all the surgery, catheters, nappies, pain and loss of dignity and still keep going. This thought makes me realise I am a tough old boot and it gives me the boost I need to get to that toilet. Good luck. J
Hi Jason, that’s must be so hard for you going threw all the problems you have me , but as you say we plan ahead and get prepared. I do get things prepared nappies and medication etc we carry on doing are best and try not to worry, until I have accident then making sure I got my rader key for disabled to change my nappy. Thing that annoys me I been out ready for disabled toilet in a busy pub, drunk customer goes why you not using normal toilet!! I’m like non of your business he kept pestering me then I felt I had to felt forced to tell I wear nappies and he shut up after and he was so drunk and I shouldn’t have to them personal business EVER!,it’s so private to us we don’t need the stress on top. All the best for you mate I think be using Catheters soon and as well as nappies.