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