Going at work or public bathroom

Hi Peter,

I have a kit bag with my tube, lube, 60cc syringe for irrigating and my mini bottle of water with squirt top (you may want to try a collapasible bottle or one of those flat plastic onese for runners)...I just fill the bottle before going into the stall, sit, intubate and use the bottle to both fill the syringe if needed or just squirt through the tube to clean.

I cover the stoma with folded up kleenex., not tape.

I can be in and out in under 5 mins most days unless I need to irrigate...I drink tons of coffee and fluids so it is mostly liquidy...only carbs thicken me up.

Sharon

Sharon, thanks for sharing your routine. I too have a kit, but when I have to go at work I stuff my syringe into my sock and the tube and other odds and ends into my pants pockets. I have managed to keep my unique plumbing a secret at work.

That is amazing that you can get away with a folded Kleenex and no tape! I have developed this elaborate paper tape and filter patch. I leak gas during the afternoons often involuntarily and I have had people shy away from me – very embarrassing. I have lost my sense of smell so I don’t really know if I am giving off odor. My theory is the loss of this sense was due to the pouch contents 3-4 times a day. I don’t think our noses were meant to take that kind of assault!   When I figure out how to post pictures I will post pics of the filter – covering design.

I have been thinking about how to alter my diet and eating times as a way to eliminate the need to go while at work or to be able to go without irrigation. Currently I need about a liter of water plus I reserve some to clean out the catheter. I don’t drink coffee so I am trying other things to get pouch contents to flow on their own.

Thanks

Peter

Try green tea or grape juice

 As for food I have a couple suggestions. The Ostomy Nurses at Cleveland clinic highly recommend prune juice, and if you can't stomach prune then a product called Plum first, which has plum and refined sugar.   What you want is a juice that is high in sugar content i.e. not cranberry juice. I'm not sure whether the sugar content should be natural fruit sugar or can be refined sugar.   Next you want to stay away from pastas and carbs that can thicken up the stool. If you look back at some of Sharon's comments you'll get a good rundown on what works--at least for her, but I think it's very good advice as it also works for me.  Think protein. I also have problems with soups that I've made and put through the blender, which thickens them up.  I still make them and just irrigate a lot.

As for the gas I first of all offer my sympathy for your inability to smell.   You probably have a good idea of the transit time for your food, yes?   Coordinate that with a list of foods that cause gas. Perhaps eliminate gas producing foods and see if you notice any difference in output and leaking. I always find it helpful to keep A diary when facing G.I. problems.

just another suggestion to throw in – – for irrigating I use an enema bottle. When not in use it nicely collapses and is more convenient to carry. It's not too obvious to fill it up in the  public restroom. The tip fits very nicely into the end of the catheter. It holds about 120 mL. Or you could have  an enema bottle and also a water bottle to fill up the enema one in the stall.  

 Keep us posted on the status of your restroom! Very critical element in our lives. Janet 

I like the enema bottle Idea Janet...really neat!

thanks

Sharon

If your valve is operating as designed you should not be leaking gas. Just an observation.

Ray

I purchased a 60 CC syringe that is in a plastic container/case. There was a cap on this container/case to keep the syringe in when I purchased it (this container contours the syringe). I glued the top onto the bottom of the container so that it could stand up. I then fill the container before going into the stall. When I'm in the stall I fill up the syringe with the amount I need. I don't kneel down but I try to direct the catheter down ward as much as possible. I keep the syringe as close as possible to irrigate. I've heard recently that one site sells catheter extension tubes for Medena 30 FR. I will be looking into that. I was instructed to drink 10-12 cups of water/day. That keeps things flowing most times. But I was also instructed to irrigate as well. But sometimes esp. if things are flowing fine, or I forget to, I don't. I do try to irrigate though. 

Do you mean a disposable enema bottle or an enema bulb? It sounds like a disposable enema bottle. Either way that sounds a little less troublesome. The syringe sometimes gets difficult to use as the rubber deteriorates with age. I think I will try the disposable enema bottle sometime. 

Thank you for the information. Mary

I use a disposable enema container, and reuse it very many times.  Obviously dump out the solution and wash out the  container before you use it. I like the way it crunches up, which saves space and it holds twice the amount of a syringe. Good luck.

 That's a lot of water! I  was told to drink juices that are high in natural sugar, such as prune and grapes and Apple. I'm not a great fan of juice. As my output is thick I am constantly irrigating. Always looking for suggestions.

Janet, 

Apple juice actually slows down and thickens us up...Be ware, it has the opposite effect on your output...they used to give it to me in the hospital when I had a flare along with plain rice and chicken breast.

I like the collapseable container idea...neat!

Sharon

That's interesting about Apple juice. I just finished off a large container of raspberry/apple juice and I really didn't think it had helped very much. Just gave me a lot of extra calories.

did you get an appointment with the rare disease doc, Sharon?

Yup, I saw him...And he opened a whole new can of peas and carrots...instead of findind a solution to my pain in the hips/joints etc he found a 'serious narrowing then dialation of the left iliac artery followed by another narrowing'...which essentially means that there is some sort of aneurysm there...

So now I am waiting for the ultrasound of the artery to tell me if it is a birth defect, the result of some past surgery or inflamation or a ticking bomb.

The treatment possibilities range from 1. wait and watch, 2. meds, 3. stent or graft it. Still waiting for the appt...which means that maybe it is not that serious (please tell my brain that!)

Not quite what I was anticipating when I made the appt...

My whole life feels like it has been kicked upside down....I am trying my annual week with hubby to some place hot, beachy and close...then I panic and ask what if???? What if it explodes while I am away? What if I am walking up or down a foreign street or in a plane and it disects? 

So, instead of booking and going I am stressing and fretting....

And still life goes on.

Sharon

JLH posted:

I use a disposable enema container, and reuse it very many times.  Obviously dump out the solution and wash out the  container before you use it. I like the way it crunches up, which saves space and it holds twice the amount of a syringe. Good luck.

 That's a lot of water! I  was told to drink juices that are high in natural sugar, such as prune and grapes and Apple. I'm not a great fan of juice. As my output is thick I am constantly irrigating. Always looking for suggestions.

Thank you much for the information. I appreciate it. Yes it is a LOT of water. I monitor what I eat bread, etc. soaks it up and what I drink. But I've notice if I don't drink at least 10 cups, stay well hydrated, I get nasty, painful leg cramps in the night. The kind that I need to get up and move for. Thanks again. 

Thank you all for replies.  I have been experimenting with my diet to reduce gas, and I've tried simethicone tablets (mixed results) - going to try beano.  I have been drinking lots of tea and trying the plastic enema bottles.  i fill two at home and bring them to work.  I wear loose pants so I can put them in one pocket without it seeming too obvious.  I have had a few successful trials although today the little amount of water in the bottles did little because the contents were so thick.  

As far as my valve condition - I have been leaking gas since about a month after the K-pouch creation.  I had it done in Cleveland by Fazio in 2005.  I have always felt that it must be by design because if I couldn't release gas I would blow up like a balloon.  Being able to relieve pressure allows me to go longer without having to empty.  This is great on a hike in the woods, but not in the office.  I have never been able to take a month of down-time to go for a repair so I have come up with work-arounds:

Here are the patches I make that have a 2" x 2" filter from Flat-D.com.  I use a 3 x 3 gauze pad cut into 4 pieces.  I used a teflon cutting board to mark 

Hole Cutter:

Taped, holes cut, filter corner locations marked...

Peel off and place 1st of 3 filters and paper dividers:

Stack on 2 more filters and gauze squares

Cover with a peel-able plastic film

Every 2 weeks I make about 30 of these in about half an hour. The hole in the paper is a passageway "forces" gas thru the filters.  I re-use the filters and the plastic backing. I use the filter covers if I am going to be in close quarters (office, movies, train...) otherwise I use cut up continent pads and paper tape.  Please ask if you want more details.

Awfully complicated but you know if you need them and how safe they make you feel.

I would be wary of only one thing...they are plastic backed and thus do not allow the flow of oxygen to your stoma...that may cause you some irritation and redness, itchiness or rash around your stoma.

Other than that...wow! You are quite inventive!

I stick with 1/2 minipad stuck to my unddies and a folded mini-kleenex against my skin...it absorbs the liquid from the gunk and pulls it away from my sking.

I change the kleenex as needed but the minipad stays put all day.

To keep your output liquidy or at least less thick try fruit juice (orange, grape, prune...), coffee, tea or ginger tea which helps with the gas too...So does mint and fennel.

Sharon

Yes it it is complicated, but it has evolved over the years.  Actually the plastic film is something to stick the paper tape to and just for carrying the patches.  When I go to use the patch,  I peel the patch from the white plastic backing and the gauze, filter and the paper tape are what contacts the skin.  The plastic goes back in my pocket for re-use.

I was using a regular type 2 x 3 inch band aid with a folded up paper towel. Also I've use just the folded paper towels taped on, etc.  But I needed the full or 1/2 pad stuck to my undies to contain any leakage. I was not happy about that.

I searched for stoma coverings and came across a discussion about 'Stoma covering?' in 2012 on this forum. One person mentioned a product called AMPATCH. I emailed them requesting samples and Chris send me a number of samples. I'm just trying them out now. I've been able to reuse the patch for several days (so far). you are not suppose to do that as they are one time use. But the patch seems to stick each time. I use a folded up paper towel to help absorb the leakage. One thing I like is I was able to get rid of the pad stuck to my undies. 

When I've removed the covering the smell is a little different now. I think it is the covering I'm smelling. I don't smell anything when the patch is in place but my smeller is not that good anymore.

There was another product mentioned 'Mestopore S stoma coverings' that the person used for a week. I think I will research this product when I'm finished the samples from AMPATCH. 

I've not been able to find a search function on this forum. Did I miss it somehow? Because of that I had to go the long way round to find the discussion I mentioned above. 

All these ideas are so great. Thank you kindly for your input. Have a lovely day. Mary

There is a search function. You can find it in the list from the top menu bar. You can also choose an advanced seaerch from there.

Jan

Thank you Jan. I didn't even see/notice the magnifying glass. I guess I didn't focus on the menu bar. Thank you. Have a lovely day. Mary

 Peter – – that's a very impressive assembly line that you have set up as well as an amazing design. Thanks so much for sharing it with us. If I develop gas in the future  I will definitely check out your technique.   I know that I have gas because at times there is some frothiness in the output or at least I'm assuming that's gas, but I don't have a gas leaking problem  to the extent it smells. Have you been back to Cleveland clinic on an annual basis ? And what did they say about the gas leak?

I concur with Sharon that it's  important to drink juices and other liquids, as she specified. 

As for irrigating at work, you could take  a bottle  of water with you to the restroom. Guys carry around water bottles so that should be OK. And that would give you more water to fill your catheters.  Janet 

I have alwsys had a lot of mucous so need something waterproof to avois staining clothing. I have ultra-senstive Skin n so can't use anything thst sticks on for any length of time.

For swimming,  I use AM patches (there are a variety of shapes & sizes so don't always stick on the same place, helping with skin problem).

For events, I use a ConvaTec Stomadress plus (ref # 175611 art # 964705) which has a skin protecting backing not unless ke those used with ileostomy bags). For Peter855, theses have  a small pouch with vent which maywork well for the gas problem).  These are expensive, however, and I use them sparingly.

For everyday, I use either a nonsterile post- operative pad 10x10cm or ( the least expensive) a product for faecal incontinence ( "rectangular endless roll without waterproof back sheet" by Coldex) - this is 12cm wide and can be cut to any size.  I cover both with something waterproof.

Women can carry everything needed in a purse so have things easier. 

i use a nursing pad, which i stick to the inside of my u-pants.  it absorbs the excessive amount of mucus that i produce.  quite inexpensive.  obviously doesn't work for swimming, when i use a large waterproof bandaid.  

I have not been around in a long time but I thought I would share a few things.

To decrease the size  of the kit I carry with me I ordered 30 cc syringes off Amazon (box of 24) that will last me a very long time.

I too, on some days leak mucous (and stool) and need a covering that will protect my clothes and my skin. Unfortunately, my insurance does not cover my ostomy supplies so Ampatch is not an everyday choice. Gauze and band aids would not work. I use nursing pads (Lansinoh) and paper tape with great success and they are easy.

There are foods that either bind me or clog the catheter, that I disappointingly have to stay away from them or take a bite say yum, that's it. For example; sweet potatoes, honeydew, bananas, mangoes, spaghetti squash or sauces that have chopped veggies in them  get stuck in the cath holes.

Everyone is different....but knowing my nonsense might help you.

   Here's  another suggestion for an irrigation bottle in your carry along kit.   I take a disposable enema bottle, empty the contents, squash it.  Very light to carry and doesn't take up much space. In the restroom I fill it at the sink or fill up a water bottle.  

Lesrich.  What is a T pouch? Just curious as to why you converted from a K to the T   

Jan - I have tried the nursing pads too, however my skin gets irritated fairly quickly. Do you have this issue? How do you keep the mucous/ moisture from irritating your skin? Kara

Lately, my pouch has been lazy or unresponsive or maybe I just need to take more probiotics...I am slow and sluggish so it is more difficult in public washrooms...I pick up a glass of water from the water cooler on the way to the washroom or fill my water bottle on the way there or in there...very nonchalant...As if I am going to take it right back out with me...and use it in the stall to irrigate and rinse...I seem to need to irrigate almost every time (I am back to prune juice for the 1st time in years) and more than once...so I use my syringe and glass of water...it takes time, a bit of balance but I get it done...

I am leaking a lot of mucus due to the amount of irrigation...but the kleenex work great and if I need more coverage I use a piece of absorbent paper towel...

Sharon

Kara-- I also use the No-sting barrier.  I find that some brands are better than others.   Smith and nephew brand works the best for me.  Safe and Simple is OK but not as effective.

have you  gone back to Cleveland, and if so is the new valve operating properly?  I hope so. Hope also that you've been able to get your strength for nutrition back.

Here's a question for you, although it's off-topic   Did you have any other  Pouchitis symptoms other than the bleeding?  I'm noticing bleeding. Fortunately it's happening right before my appointment in NYC next week. Very anxious about  the outcome of this appointment    

Sharon – – have you tried adding MiraLAX to your food? The Stoma nurse  told me I could use it, but I am forever forgetting to do so. Works great for my cat! 

Janet 

Oh, Thank you! I have the Smith & nephew brand akso, I will try that! For pouchitis, other than the blood output, I was tired all the time and had little appetite. No cramping or pain really. However, the longer I ignored my symptoms, I became weaker & intubation was sensitive, sometimes painful. I do hope you don't have pouchitis, but sounds like you are getting ahead of it & seeing Dr. Kiran? Xiafin & VSL, that is what helped me.

Valve is doing well, stronger, gained some weight & endurance. Back to work in a week. I'm getting daily infusions for hydration & potassium. Absorption still a big issue so I take liquid lomotil to help. I have a PIC line in, so most everything is infused right now. 

When I have really thick stool & sluggish output I follow Sharon's advice & drink grape juice. I use miralax too when it is realky, really bulky & that brings it all out. 

Thanks ladies! Kara

On April 12 I had a problem. The day before I had an apple and then later on I had some strawberries (strawberry smoothie). At 3 am I awoke in considerable pain. The pain subsided a little but it's got worse again. I've had apples and I've had strawberries but not in the same day. Previously I've had a banana and this is what happened to me then but I don't recall that the pain was this severe. When I had the banana, I drank water and eventually all was well again. It didn't seem to work this time. 

Hi Mary, 

First off, so sorry...it sounds to me like you had an obstruction or blockage that may have been slightly higher up in the gut...usually, if there is an obstruction in the pouch, you still get some return when intubating...especially if you irrigate (pushing in water and pulling back on the plunger...Do Not Pull back too much or force it, (especially if you feel it pulling on the inside of the pouch),  but sort of pull/push 10-20 cc of water multiple times causing a swishing of the water inside the pouch...it allows the water to better mix with the fecal matter and loosen things up

Prune juice helps, so does grape juice, green tea (not as well) and coffee...in that order...I have also used dietetic teas that basically work like drainO but beware...if you have a real obstruction or blockage in the gut it is not a good idea...it is only useful if the pouch contents are too thick.

Meat tenderizer or digestive enzymes work to break down the fibers of the contents... and allow things to flow better.

You may need to intubate more often, with warm water instead of cold (do not use hot!)...it helps. 

I use Alli (the anti-fat pills) when eating high carbohydrate foods containing lots of fats (like pizza or cheese sandwiches)...it isolates the fat molecules and sort of coats the output in the fat and makes it evacuate better.

You will learn to differentiate between (I hope that you never have to or need to again but...) an intestinal blockage and a stopped up pouch. 

With an intestinal blockage there are 2 kinds...total and partial...total blockages mean that nothing, absolutely nothing, can go into your system or you will throw up...a partial blockage means that things can go in (water, juice...) but no solids...both can cause pain, nausea, vomiting,  dehydration and gas...

Walking helps, rolling on a pilates ball, heating pads, massage etc...

My general rule is 24hrs at home and then I hotfoot it to ER.

Hope that this helps.

Sharon

Hi Sharon, Fortunately the discharge I have now is normal and things have settled down. Thank you so much for the information.  I appreciate all the information I get from this site.  It is most helpful. Have a most lovely day. Mary

I bring the whole shebang with me inside a small toiletry bag - catheter (inside a toothbrush case), irrigation kit with 60ml syringe, surgical lube, gauze pad, Tegaderm, and a mini bottle of m9 spray. On a good day i'm in and out w/in 5-10mins. 

Evox23,

I have a similar kit but I add a small sippy-tip water bottle that I pre-fill with tap water for irrigation and rinsing purposes.

I don't bother with sterile gauze any longer...Just folded up kleenex or paper towels or even the paper hand drying towels in the public bathrooms...(out of luck if they have hot air dryers!)

I don't bother with tape or sticky stuff during the day...I use a 1/2 xtra large mini pad stuck to my underwear and the kleenex...that covers things nicely...I just change the kleenex when needed...the mini pad protects my clothing...things do not move around too much so I am safe (I, on the other hand, move around a lot so it kind of works very well and saves me a lot of money).

Why the spray? Do you work in a small office?  I have not worried about odor in 30+ yrs...honestly...what do normal people do? They stink too

I also find that pencil cases or make-up cases are my favorite kit bags...Dollar stores are my friend...I pick up about 10 at a time when in the States...I measure them first to make sure that my syringe fits in...I get pretty colors, sometimes the ones with 2 or 3 zippers so that the lube packets stay dry and separate...

Sharon

evox--i share the same problem with smell.  once some patrons in the public restroom called in the maintenance person to spray while i was still in the stall!  i refer you to the topic on 'PU solutions' for additional info.  my go-to solution is poo pourri, although it is a toss up with just using 10 or so drops of essence of lemon oil.  the latter is a smaller bottle and available at local store and costs less.

a space saving tip for your toilet bag is to use a disposable enema bottle, which can be reused numerous times.  fill it before going in the stall, and when finished the tip tucks into the bottle, which squishes in and uses up little space and adds minimal weight.    janet

Janet, That is a fantastic idea...Where can I get one???

They don't have them here...

Sharon

More power to you Janet for using a multi-stall restroom. I never had the courage to, because I would need a sink to setup up my supplies. I've also used a small pediatric bottle in the past, but the nozzle clogs up (too much fast food) and end up plucking stuff from the catheter AND enema bottle, so for me its double work.

I have been using multi-stall washrooms including those in my schools (awkward) with students or other teachers in hanging around, for 38 yrs...

You get used to it but you can also 'eat for the occasion' meaning that I eat according to what I am going to be doing the next day or that afternoon...I avoid the heavy carbs (whites) or veggies that can clog if I am going to work (cannot take the chance at school)...you sort of get used to it and it becomes second nature...I won't say that it is ideal but it is a system that works better than being stuck for 1/2 hour irrigating or plucking stuff out of my cath.

There are balancing acts and set-ups to do...

I grab a couple of pieces of paper towel before heading in to use as lap covers and pre-fill my water bottle...sometimes, if the place is unknown, I check out the stall first, to see if there is a shelf for me to place things on or if the floor is 'clean' enough to put my purse down...I also check for coat hooks on the back of the door to hang my purse...I use a crossbody so the strap is very long and allows me to access my stuff while the purse is hooked on the door.

For those of you who are a bit squeamish, you can take disposable gloves with you, use them to do the plucking of stuff and then wrap your tube inside of them to wash out later.

Sharon

Janet after seeing your post, I tried 4-5 drops Eucalyptus Oil that I bought for my essential oil diffuser and it worked, absolutely no odor, and way cheaper than m9 air spray or drops. I'll try the lemon oil though, eucalyptus seems a little too strong.  

You might want to try peppermint oil too...it is sweeter and just as effective...you put it on the soles of your feet on in your socks and it travels up through the bloodstream...your output then becomes minty fresh!

Sharon

@LadyTay97 posted:

Thank you much for the information. I appreciate it. Yes it is a LOT of water. I monitor what I eat bread, etc. soaks it up and what I drink. But I've notice if I don't drink at least 10 cups, stay well hydrated, I get nasty, painful leg cramps in the night. The kind that I need to get up and move for. Thanks again.

Are you talking about a fleets enema with saline in it?