Going at work or public bathroom

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?