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bluesgal
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24/07/2017 5:09 pm  

RE: what do you have in your "emergency" kit

I'm retired, so I don't have to keep anything at work, but we travel off the beaten path a lot, so I keep the following in the car:

1. complete change of clothing including underwear, pants, top, socks ... and yes, once I had to use every piece of my emergency clothing!

2. two complete pouch/wafer systems with adhesive remover wipes, stoma powder, barrier rings, gelling packets

3. a collapsible rubber cup (from REI, collapses flat into a disk about 3" across) and a bottle of water

4. torn up car rags - you can buy a pack of these car cleaning "rags" at any car parts store or at the dollar store ... like 8 in a package. I cut them up into fourths and put several in my emergency pack ... this after having a major "accident" and using up every single paper towel there was in the outdoor toilet vault! How fun was that .... NOT!  Now I have the rags that I could wet with the water, clean up, throw them away ... much more durable and easier to use than paper towels or kleenix.

5. Imodium tablets or other similar anti-diarrhea meds

6. and, of course, a bottle of wine in case I need a drink after having a combat shower episode! ;)

 


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Sydneychic
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25/07/2017 2:37 am  

Illona, no need to buy a plastic bottle just use an empty water drink bottle.  I carry it empty and fill in the rest room.


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Sydneychic
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25/07/2017 2:39 am  

Bluesgal, I use chux cut up.  I don't know if they are called chux in US or Canada.  They are excellent and cheap.  You can get them in a roll or individual pieces.


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Navey
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25/07/2017 8:44 am  

Hi bluesgal:

love your emergency kit, mine is very similar for the car. I never thought about throw away rags and just had paper towels in the car. You gave me pause for thought, so I took an old towel I was keeping for mop ups and I cut it into pieces for my kit. Thanks for the tip, much better than paper towels. Bottled water is a necessity for the car whether you use it to keep hydrated or for the dreaded leak.🆘


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Illona
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25/07/2017 10:04 am  

Fantastic to wake up and see nice emergency kit tips!  Bluesgal, I am wondering about the collapsible cup.  I'm guessing it'd look more discrete than carrying a water bottle into the ladies room?  I like the idea of the disposable towels, it'd be so embarrassing to use all the paper towels up.

Im a little afraid to ask, but what led up to the explosion and full change of clothes?

Luckily for me, my office provides free bottled water but we do sometimes run out so I'll keep 3-5 bottles at my desk in case. Hopefully some of the gossipy types will wonder why I'm carrying drinks into the loo. :-)


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berri03
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25/07/2017 10:35 am  
Posted by: Illona

I'm still trying to figure out how many days to go between complete set changes.  Convatec says change 3-5 days.  I think I'll try averaging it and seeing how I do every 4 days.  At day 3 the site still feels just fine and I don't want to do anything to make my skin suffer, but at day 5 it kind of feels like just a little bit too much time. Is that how you know when you need to change your complete set, when it starts feeling bad?

Hi Illona:

I have only had my ileostomy for a few months now, but I have been going about every 4 days with my bag changes. Like you said, with 3 days the surrounding skin still feels fine. When I get to 5 days usually, that is when I start to feel some itching and burning, telling me that my skin is becoming irritated. That fourth day for me, then, has worked out well.


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bluesgal
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25/07/2017 12:46 pm  
Posted by: Illona

Bluesgal, I am wondering about the collapsible cup.  I'm guessing it'd look more discrete than carrying a water bottle into the ladies room? ...

Im a little afraid to ask, but what led up to the explosion and full change of clothes?

Hello, Illona

The collapsible cup - no, it's not about trying to be discreet, it's about convenience. It fits into the little emergency swap-out kit I carry in my purse (this in addition to the bigger combat-shower-time pack in the car). So in my purse, I just have a snall stuff sack with everything I need to swap out the pouch system one time. The cup - I use it when I just want to rinse out the pouch. It takes up a lot less room than a water bottle would, but, of course, it won't hold near as much water. I just try to get used to thinking about people wondering why I'm filling up a cup and then carrying it into a stall.

Combat shower experience. I have an ileostomy so the contents of my pouch are usually very liquid, almost like water. I use the Hollister two piece wafer/pouching system that snaps together like tupperware. We're at a roadside park with a short hike to an arch we want to photograph. I get out of the car ... mmmm, I feel ... oops! damp! Look down at my pants. ... holy s*!*t!! Grab the emergency pack, head for the vault toilet. Undo pants and I see that the pouch has come unsnapped from the ring ... somehow .... I've used the Hollister system for a year now without this ever happening before so I was confused as to why. The only thing I can figure out is, if you look at the Hollister pouch, it has 3 tabs on it - two on the "sides" of the ring for attaching to a belt (if you use one) and the third, which should at the top when you put the pouch on, is the "burping tab". You can grab it, open the pouch just a bit, and burp the bag. So, I wondered if it was possible for that tab to have gotten caught under the seatbelt, opened up a bit, and when I stood up - whammo, waterfall time.

Honestly, the whole seatbelt thing is a pain because the seatbelt crosses right over my ileostomy so it either would "squish" the stoma (if I just left the seatbelt where it wants to be) or I force the seatbelt to go under the ring, and now the pouch is squished. I've tried one "stoma protector seatbelt" product - it's like two heavy-duty, bulky foam rubber 'boxes' attached with a loop. The boxes have velcro tabs and you attach the boxes to the seat belt, forming a little box around the pouch. The thing would slide around the belt, even tho' I tried getting the velcro tabs down really tight. Then, when you would get out of the car, the protector would slide down the belt next to the door and, when you got back in, you had to readjust the whole thing again. It was a pain and I chucked it. I know there are other products out there for the seatbelt dilemma and there are "stoma guards", but the the guards seem to be pretty expensive and you wear them all the time, not attachable to the seatbelt. Eric has reviewed some of them on this site including the ostomy protector seatbelt cover. By the way, the other similar protector he reviewed, the Weircomfee guard, seems to be out of business as I just checked for their website which is "under construction" ... and it says "store closed". For now, instead of having the seatbelt in its normal configuration, I put it across the leg closest to the door, and then under the other leg and fasten it like that. I'm sure it wouldn't give you as much protection in a crash because the belt isn't across both hips, but that's what I'm doing for now. I'm not recommending it, though. I may have to bite the bullet and try a stoma protector or continue my homemade experiments with foam blocks I've purchased.


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mykirbyroo
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30/07/2017 4:02 pm  

I'm in a very unique situation.  In 2002, I had gastric bypass surgery which re-arranged my innards so I digest food differently - and much more quickly than normal systems.  No matter what I eat or when I eat it, it usually processes fairly quickly.  However, my colostomy is very, very active during the evening and all night long.  I normally irrigate (sometimes twice) to ensure I get a good clean-out which will ensure that I can sleep through the night with no explosions.

When I don't irrigate, I seal off the top of my irrigation sleeve with waterproof J&J tape, roll it down (I use Hollister supplies.) and then tape it again to ensure that nothing leaks out the top.  I fold up about 2" of the bottom of the sleeve (turtle-necking) and clamp off the bottom.  Then I sleep on the reclining sofa on my back and always sleep the sleep of the dead.  I sleep until I wake up to pee, and check how full my irrigation sleeve is.  If I need to empty it, I unclamp the bottom and drain it right into the toilet, rinse out the bottom foot of the bag and re-clamp it and go back to sleep.  It sure beats waking up in a big mess and I haven't had any leaks or problems at all.

Works for me and if this helps even one person, I'm glad.  I had to do something because I wasn't getting any sleep at all.  I was setting the alarm on my phone to go off every hour and a half and that was nuts!!!  Sometimes I'd have a mess and sometimes it would be OK, but my quality of sleep was horrible!!!  I'm sorry this is so long.


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VeganOstomy
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30/07/2017 10:01 pm  

Thanks for sharing that, mykirbyroo!  It's amazing how we can find solutions like that. I'm glad that process has been working for you!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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17/10/2017 10:50 am  

Interesting how we use different methods, Like a lot of you I was told to eat my last meal around 6pm. Trouble is I am only a nibbler during the day always have been, also when working I prefer to have my bag filling less. So my routine is like a good breakfast 6 .30am, small snack 1pm and evening meal 7.30. This results with visits to the loo during the night probably twice, over the years I seem to wake roughly at the same times. Other folk would may be call this a nuisance but for me its part of the routine. Plus I have to go for a whizz as well (TMI). Did you know drinking water before going to sleep is an old native American Indian trick when they needed to rise early to hunt.

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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17/10/2017 12:00 pm  
Posted by: john68

Did you know drinking water before going to sleep is an old native American Indian trick when they needed to rise early to hunt.

Funny that you should say that. When I'm worried about how much my bag will fill overnight, I tend to drink more or skip peeing before bed so I know I'll be forced to wake up earlier than normal. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Robert
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17/10/2017 5:37 pm  

John you crack me up . I didn't know that about drinking water and Indians . I too get up usually 2 to 3 times a night also I'm just used to it . I also get up for my little dog to go to the loo (John I like that term) used the loo one on my wife . Lol . I don't eat a lot during the day and my big meal is usually around 7 at night and I'm in bed within a couple hours of that . It has taken me awhile to adjust to having my ostomy overall (had it 13 months now) and going out to public loo's and the idea of having an accident in public makes me nervous still probably all in my head I'll get there . Had an accident last night went to empty the bag slipped out of my hand and it went all over the toilet and floor was a mess ( I generally stand to take care of business TMI) . Luckily I was at home . My wife is the best she was right there to help me don't know what I'd do without her . Life is better than it was before no doubt . Hope you and Tony made it through the storm alright .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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john68
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17/10/2017 6:26 pm  

Hi Robert, funny my wife says I cracked her up as well. That was 6 months ago and they are letting her out next week (Bless) Having an accident yep it can and will happen. but look at it this way. in all the years I have worn a bag and had an accident mostly its been in bed. OK not great but its been in my own home. Just like the one you had. And like you my wife helped me, got my new bag and by the time I had a shower had the bed sheets in the wash. A leak knocks ye back but take a deep breath and move forward. I can tell yer an up beat Lad and have a good attitude so remember every day is a success and build on it. When at the LOO I sit or some folk kneel standing gives gravity too much of an upper hand. PS tell yer good lady shes a star.

ileostomy 31st August 1994 for Crohns


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Robert
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17/10/2017 8:43 pm  

Hey John I appreciate your reply . Hope your wife will be ok when they let her out next week  . I too have had the leaks in bed and had to wake my wife and she took care of everything aren't our wife's great ?  Coming up on 35 years with mine she's great . I don't think I've ever been called a lad in my 59 years but that's totally ok . Haha  . I know things will get better as we go . I will tell my wife what you said she will appreciate that . And your's sounds like she is also a Star ! It's nice to have this forum thanks Eric and thanks  John . Hope all is well after the storm . 

 

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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FelicityG
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17/10/2017 10:28 pm  

If the filter has not given up the ghost I can sleep through the night. If not the bag blowing up with air/ getting firm wakes me. I usually fill my little bottle up with water before going to bed so I can amble out and rinse my bag when I empty it and my bladder.

I am a side sleeper, used to be like a rotisserie chicken all night long rolling over all night. Now I tend to stay more on my left side as Oscar is on the right. I sleep draped over a body pillow, make a little hollow for the bag to be.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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FelicityG
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17/10/2017 10:36 pm  

If the filter has not given up the ghost I can sleep through the night. If not the bag blowing up with air/ getting firm wakes me. I usually fill my little bottle up with water before going to bed so I can amble out and rinse my bag when I empty it and my bladder.

I am a side sleeper, used to be like a rotisserie chicken all night long rolling over all night. Now I tend to stay more on my left side as Oscar is on the right. I sleep draped over a body pillow, make a little hollow for the bag to be.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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mykirbyroo
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17/10/2017 10:36 pm  

Hi, Felicity!  My colostomy (Rosebud) is on the left side of my midriff, so I sleep on my right side all night.  I don't think I move all night - on those nights when I trust her enough that I feel I can sleep in bed.  Otherwise, I'm on the reclining sofa with my irrigation bag to contain my excrement.  I've had enough "accidents" that I don't want any more of them; hence, I sleep on the sofa when I don't trust her to behave.  Lets me sleep and her do her thing all night.  My husband (God bless him!) has cleaned up lots of my messes.  He's done quite enough and I don't relish the thought of him doing more.  I know he would, but it's just not necessary, so I do what I do to ensure it doesn't happen again.


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VeganOstomy
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17/10/2017 10:38 pm  
Posted by: FelicityG

If the filter has not given up the ghost I can sleep through the night. 

More often than not, it's ballooning that gets me into trouble at night, not a full bag. 

Without any gas in the bag, I've often safely woken up with it 90% full (and weighing 5lbs) without trouble. But when it balloons at night, there's a good chance I'll get a leak. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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FelicityG
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17/10/2017 10:39 pm  

Thankfully we've not had to deal with Oscar accidents. When I had c dif my poor husband cleaned after my trail of poo and the nasty bed bombing. I've tried the recliner and just can't get comfortable enough. 

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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mykirbyroo
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17/10/2017 11:30 pm  

The only reason I'm able to sleep on the reclining sofa is because I am so dog-tired when I do lay down, that I can't help but fall asleep.  I get all covered up so I'm warm.  I get my cat next to me and she sings me to sleep.  Get tired enough and you can sleep anywhere!  Yes, I had a hard time getting to sleep the first night, but after that, no sweat.  I zonk right out very quickly and stay asleep until I have to piddle in the middle of the night and check my irrigation bag to see if it needs to be emptied.


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