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Thread: life's little problems with ic

  1. #1

    Default life's little problems with ic

    Just curious, and possibly looking for some hints for my own life, how do the other genuinely ic members here deal with being ic with work/home life/school (uni/college)?
    What I mean by this in my own experience ; I have issues with my living situation, I dont feel comfortable letting my housemates know of my ic probs and I go to great lengths to hide it from them. No deliveries at home, hiding soiled nappies and sneaking them into the bin.

    As for work I only work part time currently, in the nursing industry. This does not allow me the opportunity to grab my bag of ic gear and change after an incident discretely at my own discretion (although if a serious bowel issue arises I will resolve it immediately due to smell and hygiene reasons- but I usually avoid eating for several hrs before work and never during to stop this happening) I get very stressed and anxious about bulges and leaks or bits showing if my shirt rides up. Not to mention the terror of changing a pad during work if absolutely necessary - questions as to why im taking my bag out of my locker to the toilet or someone hearing the sounds, or disposing of the used item in a mens bathroom!

    As for school I also became quite upset over people asking me why I used the disabled toilet. In the end I went to the colleges student services and they are looking to put a few of those pad bins in selected mens cubicles at the campus....but I really hate having to ask them to spend a heap of money pretty much just for me... I'll see if that works out or not (still be the sounds issue though)

    Anyway enough about me, id like to know other's trials and tribulations living with their ic. And how you have overcame them (if you have)
    Last edited by Bear85; 25-Jul-2014 at 14:41. Reason: typos

  2. #2

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    Quote Originally Posted by nick85 View Post
    I dont feel comfortable letting my housemates know of my ic probs and I go to great lengths to hide it from them
    Don't be. I know it's definitely a brick wall to run through to let them know. But once you let them know life will be much less stressful and easier for you. They should be accepting if it is a genuine incontinence issue. After that you don't have to work so hard on hiding them. I had a new roommate move in a few weeks ago that I told after the first trial weekend, went fine. After that I'm able to just keep my supply on a bedside table I have. And then I just keep a trash bag in my closet that I toss the used ones in and then take out once there are a few in there. Hell, there was no way I'd be able to discretely hide my supplies anyways since I order cases of Abena M4s, Tranquility ATNs, and Molicare Comfort Supers, plus usually an odd pack or two of Depend pullups for those "I just need this for a little bit before I get in the shower" moments on a routine basis, so it's quite a few diapers around.

    For work I just keep a laptop bag in the trunk of my car that has a change or two. I wear Abena M4 so I only really need at most two changes for the work day, usually just one during lunch break. The building my employer is in is mostly abandoned, so when I need a change I just go to a restroom that is on the far end of the abandoned area from my company. I then toll and stick the used diapers in another section of the laptop bag for later disposal once I get home.

    For school one option for you is to tell those annoying people that you are changing some Durable Medical Equipment that you need due to a disability and need the extra space to do so. They'll either figure it's diapers in their head and won't confront you about it, or they'll just assume it's something like a leg brace or something. Incontinence is a genuine disability so you have every right to be using that stall to do your diaper changing in. Your other option is of course to just tell them to fuck off and mind their own business.

  3. #3

    Default

    Nick,

    Well how you can manage better for yourself largely depends on your type of IC issues.

    For myself it's like this: During the day (or basically around the clock) I do dribble uncontrolled - sometimes more, sometimes hardly any, sometimes a lot.
    But it is there with a regularity - this is the one aspect I can not really control.
    Then I get very little warning once the bladder is reaching a certain fill-level and wants to empty. if I don't get to a toilet in time (short time) - well...
    Over the later issue though I have some control... or some influence.
    The dribbling for some reason is most often minimal enough not to cause a complete emptying on it's own and not enough to keep the bladder's fill-up down enough to prevent accidents (sudden ones) either.
    During the night - from what as revealed with a sleep-study / testing years ago is that the dribbling actually is highly reduced ... sometimes not at all.
    But I simply fail to wake up once pressure builds slightly (far less then during the day) and this leads to 2-3 wettings during the night of which I though am not aware.
    The point is also during the day I only get "minimal" signals ("full")... and basically as soon as there's a little more than just a slight urge, the bladder empties.
    And whilst I can try to stop the flow once it starts to happen - it doesn't really work well - I can get it to "interrupt" but not much more ...

    So basically I have forever been dependent on some type of IC protective products.

    These days here's a few things I have found to work well for MY situation.
    To me, as I lead a very active life-style - discretion and COMFORT are of utmost importance.
    Sure I could just wear the thickest bulkiest diaper - but this would make ME uncomfortable - highly uncomfortable.

    So here's my "deal":
    Night-time - well that is the simple one to answer: Attends Slip Regular 10 Size Medium. has been working well for several years now.
    What I like about it is it's discretion and absorption ... they're pretty thin, don't rustle much and under some loose fitting trousers or track pants etc.. don't show up at all.
    Also the all-cloth (no plastic at all) side panels add to the comfort and discretion... and they don't swell up massively when wet either... pretty perfect.

    Daytime is more complex.
    First of I try to stick to a certain routine and watch what I drink and eat ... especially the drink part... I stay away from diuretics such as coffee, soda-pops like coke, etc... sugary crap, sparking stuff, alcoholics,... basically I drink water and some teas...
    Then I try to naturally void frequently (toilet) - like every two hours. (or sometimes every hour).
    When I drink - I consume small quantities but with a good regularity. I keep very well hydrated - but I don't drink half a gallon at lunch and then nothing until dinner... more like a glass of water every hour or so... or even sips of water spread more frequently.
    With these techniques and the voiding (if you can't - look into intermittent self catheterisation) I can basically to some extend minmise the overall output and also it has a HUGE influence on the large wetting accidents - they're rare, much rarer this way.
    Usually the large wetting happens when I'm "on the road", or when for other reasons I couldn't get access to a toilet with some regularity. Or if I overhydrate... or if I have the occasional beer or coffee (actually beer turns my IC switch to the "worst-scenario-setting"). Or when I'm very tired and/or stressed - then it seems to take little to tip it over. But still, average day, the method helps me greatly to get by during the day with minimal products.

    Usually I wear a pad like a Tena Comfort Plus pad + fixation mesh pants (tena) to hold the pad in place.
    Not only is the pad really "invisible" but also it's easy to pull down for toilet-use, very quick to change, etc...

    For some time now I also am an advocate for condom catheters (condom urinals, Texas Catheter... different name - same game). Basically it's a "condom" that you slip over the penis and attach a tube to the end - and connect the tube to a bag.
    It has taken me several attempts to find a combination of condom, bag, bag-holster (I wear mine slightly below the knee, which is "unusual" as most would wear it higher up on the leg... but I find under loose fitting trousers (which I much prefer anyhow) that this position (below knee) has the least impact on mobility and is also far more invisible.
    But once I figured out the correct combo for myself it was a game changer.
    I'm using this during the day now in about 75% of the situations... at home or more relaxed settings or when I do sports, etc... I stick to the pads... but especially "on the move" the condom cath is a bliss.
    Why? well no diapers / pads ... no changes - no sweating under the pads / diapers... far less likely to leak... easy to drain.
    The last bit is the coolest part... once the bag is filling up I can visit the toilet... hoist my leg over the toilet, roll up the trouser-leg, point the release valve / tube over the toilet... open up and drain.
    I can even pee "normally..." go to the toilet... pee (in the bag) and then empty immediately.
    I don't need to carry spare pads or diapers.. and even if I loose larger quantities quickly, no problem at all..
    it's very discrete too...
    The bag can be reused a few times if you get one that can be flushed (I connect it to the water-line and fill flush it and use a mild antiseptic to flush it some more.
    Saves a LOT of money but mostly this is cool for traveling - the amount of IC stuff to be taken on extended trips has thus been reduced to night time diapers (sometimes cloth for travel).

    Now only when I don't want to bother with the condom thing I rarely opt for real diapers (tape on) during the day.
    But this has become quite the rarity since.

    Night time is a bit more problematic - whilst I sleep on my back most of the time, I guess I toss around a lot and sometimes have gotten the hose disconnected etc..
    Still trying for some ideas here... I'll probably stick to diapers at home or for short trips during the night - but as I travel a lot, using the condom thing at night would be a good way to skip on having to take spare diapers etc...

    Maybe this is something for you?

  4. #4

    Default

    I told my roommate and had no problems with telling her at all. I've pretty much developed MS right before her eyes and who would make fun of that? At work I would wear something less revealing and baggier. Nobody has ever said anything. The only thing I get self conscious of is the smell. IDK how to solve that other than to change asap.
    Last edited by Pixieperfect; 27-Jul-2014 at 15:00.

  5. #5

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    Quote Originally Posted by ClickyKeys View Post
    Don't be. I know it's definitely a brick wall to run through to let them know. But once you let them know life will be much less stressful and easier for you. They should be accepting if it is a genuine incontinence issue. After that you don't have to work so hard on hiding them. I had a new roommate move in a few weeks ago that I told after the first trial weekend, went fine. After that I'm able to just keep my supply on a bedside table I have. And then I just keep a trash bag in my closet that I toss the used ones in and then take out once there are a few in there. Hell, there was no way I'd be able to discretely hide my supplies anyways since I order cases of Abena M4s, Tranquility ATNs, and Molicare Comfort Supers, plus usually an odd pack or two of Depend pullups for those "I just need this for a little bit before I get in the shower" moments on a routine basis, so it's quite a few diapers around.

    For work I just keep a laptop bag in the trunk of my car that has a change or two. I wear Abena M4 so I only really need at most two changes for the work day, usually just one during lunch break. The building my employer is in is mostly abandoned, so when I need a change I just go to a restroom that is on the far end of the abandoned area from my company. I then toll and stick the used diapers in another section of the laptop bag for later disposal once I get home.

    For school one option for you is to tell those annoying people that you are changing some Durable Medical Equipment that you need due to a disability and need the extra space to do so. They'll either figure it's diapers in their head and won't confront you about it, or they'll just assume it's something like a leg brace or something. Incontinence is a genuine disability so you have every right to be using that stall to do your diaper changing in. Your other option is of course to just tell them to fuck off and mind their own business.
    Im pretty sure one of my housemates would be ok with my ic. Weve been good friends for years... I reckon he'd still tease me light heartedly though. .. but concerns over when he's drunk, and I worry he'd tell the others-who I dont know that well and are not as kind or understanding, and already pretty mean to me about my crohn's as it is....

    As for school, I would love to say that but Im in classes with many of them and will be for the next year atleast. A few are connected to my outside life through work and social life (what little there is) and am concerned with this crossover.
    Thanks for the idea of bagging pads when unable to dispose of properly. although it wont help me at work...
    To put it in another light, besides a continence nurse, my crohn's specialist and my bestie at school I havent told anyone. Not even my normal gp. I know I shouldnt be so embarrassed about it but I guess im quite lucky that my ic is somewhat transient and I hope oneday it will go away for good and this will all disappear into history without anyone ever knowing. ....

    - - - Updated - - -

    Epo1,

    I thought about condom catheters, as have used them on many patients over the years. Unfortunately I would still need to wear a pad as bowel ic is a serious issue... my continence nurse didnt recommend these and I guess thats why. As for catheterisation, its not appropriate for me as I am immunocomprised (little to no immune system if you havent heard that term) and the concern is of the likelihood of bacterial colonisation in the future.
    If my current bowel probs resolve for a while I will def give the condom cath a try.
    I used to love backpacking overseas but have put my plabs on hold indefinitely due to packing issues and supplies.. this may be an excellent solution!

    - - - Updated - - -



    Quote Originally Posted by Pixieperfect View Post
    I told my roommate and had no problems with telling her at all. I've pretty much developed MS right before her eyes and who would make fun of that? At work I would wear something less revealing and baggier. Nobody has ever said anything. The only thing I get self conscious of is the smell. IDK how to solve that other than to change asap.
    Ive had a few patients with MS... its a horrible disease. Makes you put your own probs in perspective. ..
    I think (everyone can correct me if I'm wrong) but girls are generally much more compassionate with sensitive things than guys. My bestie that I told is female (only because she kept bugging me to tell her why I was so down recently) and she was lovely about it.

  6. #6

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    You have not mentioned whether your roommate knows. If you are not in a single, I would imagine this would greatly add to the stress of your daily life. When I was in college, my problems were limited to bedwetting, but that did necessitate informing my roommates. And back then (the late 70's) it meant cloth diapers, so we're talking diaper pail and major ammonia smell, even though I did manage to sneak into the dorm bathroom every morning and soak the thing. (Getting it back to the pail was always a fun trick.) If you can tell your roomie(s), it would certainly help.

    I do not and never have had bowel IC, so that is my blessing. But since I've been urine IC I have had to deal with diapers at work (a high school--I'm a teacher). I carry several in my purse, as well as a packet of adult wipes. Usually I change in the ladies room, but occasionally I have used a very spacious private closet in my classroom. If the halls are empty I just carry the diaper out to the garbage can outside my door; if not, I place it in my purse and walk there with purse in hand and surreptitiously drop it in. (The halls are never so full on this floor that I can't get away with that.)

    I use premium diapers, of course: you need to, for their capacity, their odor control, and their ability to wick the moisture away from your skin. If I may be wet for several hours, I have to be sure I will not smell or develop a rash. I generally change three times or so during the school day.

    Traveling was a bit of a pain: I needed an entire large suitcase for diapers when I went abroad, and it did significantly add to my airfare, but it really could not be helped. I found it difficult to find what I needed at times when I tried to buy things in foreign countries, and ended up settling for lesser varieties of diapers after my initial supplies had run out. As far as hotels were concerned, I just made sure my tips were good. :-)

  7. #7

    Default



    Quote Originally Posted by ICkaraokegirl View Post
    Traveling was a bit of a pain: I needed an entire large suitcase for diapers when I went abroad, and it did significantly add to my airfare, but it really could not be helped. I found it difficult to find what I needed at times when I tried to buy things in foreign countries, and ended up settling for lesser varieties of diapers after my initial supplies had run out.
    Just wanted to tell you that you should check the baggage regulations of the airline you are flying with because I recently flew from Vienna to Paris with AirBerlin and they had the possibility of having 23 kg of checked baggage for medical purposes free of charge. I didn't need it as my partner and I packed our clothes into one suitcase and carried my incontinence products in the other, but I know it is possible with many airlines (under certain terms) since I always check the regulations because of my prosthesis and sometimes the wheelchair. You might need a medical certificate that proves you need incontinence products for medical reasons and you will probably need to register your medical equipment in advance.

    This is what I found on the website of AirBerlin:

    Special baggage for medical purposes (ventilators, inhalers, walking aids, etc.) is transported free of charge on presentation of a medical certificate. Medicines can also be carried free of charge if accompanied by a doctor’s prescription. Free baggage for medical purposes may only contain medical equipment or medicines prescribed by a doctor, otherwise the normal baggage regulations come into force.

    Each passenger is limited to one item of baggage for carrying medical equipment.
    If transported as checked baggage the maximum weight allowance is 23 kg.
    Medical baggage is not calculated as part of the free baggage allowance.
    For safety reasons, all medical equipment must be registered in advance via the airberlin Service Center.
    It is obligatory to register medical equipment in writing (by post, fax or email); passengers who are in possession of an appropriate severe disability pass can register by calling our Service Center.

    The following types of special baggage for medical purposes are transported free of charge under the above-mentioned conditions:
    • ventilators, asthma equipment, inhalers
    • CPAP devices
    • catheters
    • materials for dressings
    • walking aids (crutches, walking frames)
    • wheelchairs incl. accessories (with the current restrictions)LINK?
    • sanitary products (nappies), stoma
    • shower/WC-seat, transfer board for wheelchair users
    • protheses
    • doctors' emergency cases
    • dialysis machines, defibrillators, lymphatic draining devices, electrotherapy devices
    • suction equipment, irrigators
    • medicines and injections

    It might be worth checking out since those additional baggage costs can be quite something.

  8. #8

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    All, I would advise you to check very carefully with the specific airline well in advance regarding their own policies for special medical baggage. Many airlines include durable medical equipment but exclude diapers. As some ticket agents are not well informed in this area, it is safest to read the policy for yourself. For a recent trip to Turkey I had to pay for an extra large suitcase containing nothing but diapers! Expensive.

    --John

  9. #9

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    Quote Originally Posted by jdinvirginia View Post
    All, I would advise you to check very carefully with the specific airline well in advance regarding their own policies for special medical baggage. Many airlines include durable medical equipment but exclude diapers. As some ticket agents are not well informed in this area, it is safest to read the policy for yourself. For a recent trip to Turkey I had to pay for an extra large suitcase containing nothing but diapers! Expensive.

    --John
    From the research I did before flying, this seems the standard rather then the exception. And anyway in Europe I was flying discount airlines: they charge for ​everything.

  10. #10

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    Quote Originally Posted by jdinvirginia View Post
    For a recent trip to Turkey I had to pay for an extra large suitcase containing nothing but diapers! Expensive.

    --John
    Why not just ship them to the first place you stayed?

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