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as a WOC Nurse, I am hoping to gather data to share with every clinician who provides education or medical care to persons with continent ileostomies, and I was hoping to receive honest feedback.
Can you please tell us what you as a person with an established continent ileostomy need from your WOC Nurses?
As a new patient, what support or education did you need most from your WOC Nurses?
Before your surgery, what did you wish you knew then that you know now?
And please give a suggestion of how we can better educate and provide support.
Thank you so much for your time and willingness to help us be better at providing continent ileostomy care.
Erin, Vanessa and Ken
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I still remember the first time I emptied my pouch. It would have been helpful to know to use a syringe to flush the catheter. Also, it would have been helpful to know that I should rinse the catheter using a cup of water, while still sitting on the toilet. I don’t think I got much training from the nurses. I now use baby oil as a lubricant, instead of surgilube—I use a smaller squeeze bottle and it’s much easier to use.

I still remember the first time I emptied my pouch. It would have been helpful to know to use a syringe to flush the catheter. Also, it would have been helpful to know that I should rinse the catheter using a cup of water, while still sitting on the toilet. I don’t think I got much training from the nurses. I now use baby oil as a lubricant, instead of surgilube—I use a smaller squeeze bottle and it’s much easier to use.

First, I think its awesome that y'all are reaching out to the community to better help us and new k-pouchers!

I, too, don't remember much talk about how helpful irrigation can be.  Especially when output is sludgy.  Warm water is the most effective, and those big 60cc bulb syringes are fantastic.

I wish I had known more tricks.  For instance, some of us carry collapsible cups like for camping while we are out and about, easy to stow and use.  Ziplock bags are pretty much the ideal storage container for your catheter.  They come in different sizes so you can pick how much your like your catheter curved, they are cheap and easy to replace.  If you feel uncomfortable rinsing your cath in public bathroom, no sweat, just put cath in ziplock bag and clean once you are home.  You don't have to use expensive stoma caps to cover your stoma.  I've used nursing pads, menstrual pads cut into good sizes, gauze and tape, and 3x4 bandaids.  Some people just use toilet paper held in place by underwear   You don't actually have to use lube to get your catheter in, so don't panic if you don't have some on you, there's usually enough moisture and stoma mucus to slide it in.  I have even spit on the end of my catheter when I was hiking once for a little extra help.

Many k-pouchers are coming from failed j-pouches or ileostomies and in both of those cases slowing and thickening output is important.  But with a k-pouch the thinner the output, the easier and faster it is to empty.  So, that being said, a greater emphasis could be placed on adequate hydration, especially electrolytes.  I have found that just drinking a lot of plain water is not enough, I have to drink something with electrolytes almost every day.

Also, I wasn't told to avoid large pills like multivitamins,  I found out a few years later.  They aren't usually digested well and won't fit through the holes in the catheter so they can actually build up in your pouch.  Dr Shen called it "k-pouch pharmacy".  I have had large pieces of Tylenol, antibiotics and vit C tablets come out my pouch, so now I use only gel caplets, chewables, gummies or liquids.

Finally, put them in touch with the k-pouch community here and on Facebook.  Having someone else to talk with about issues has gotten all of us through the hard and scary stuff!

Thanks for all you do!

After the surgery my doctor gave me written instructions on how/when to empty my pouch. This included flushing the pouch with a syringe. He gave me a syringe. But he was not able to advise on living with it daily which is when I found this forum. After awhile using the syringe became a problem due to the rubber stopper on the plunger getting old and getting more difficult to push. Finding and buying a proper syringe was a medical supply. On this forum I found another way to flush the pouch using a disposable enema bottle. Then I found other different  bottles on the internet. The enema bottles and the other type bottles I can get anywhere. I don't need to order from a medical supply place. And since the enema bottles are smaller than a flush syringe it makes it easier to carry around in my medical supply case. I have found this forum to be very helpful. I hope you are able to find the discussions on using alternative supplies for irrigation of your pouch.

Thank you for taking the time to ask, ET_RN,

I'm one of the oldies here. Almost 45yrs with my K pouch and still learning. I also took the incredibly stupid plunge and moved to Paris 40yrs ago, where no one even knew what a K pouch was. The only surgeon who I ever met who had done one, 'didn't believe in them' and tried to remove mine at every turn.

I was number 13 on my surgeon's list of Kock pouches made. That said, he had a fantastic team and a great stomatherapist. She sat with me, showed me how to intubate, was constantly available for Q/A and gave me supplies and advice.

I may not have been the easiest patient. I have EDS and my pouch slipped off of the wall within the 1st month. It happened 6xs. Hernias & peristomal hernias galore and various other complications. You learn to make your own solutions, invent new tricks and figure things out. Scary? Yes! Easy? No...but when there is no choice, you do it.

I have used a 1/2 XL mini-pad against my undies and a folded kleenex or paper towel against my stoma for +35yrs. Its so cheap and easy. Available too. I change the mini-pad 1x/day. Kleenex as required.

I keep spare kits in every handbag & suitcase. Make-up bags or pencil cases are perfect to hold a 60cc catheter-tip syringe, 2 different catheters (1 straight & 1 curved or one old & 1 new (the old ones get harder and make intubation easier when there is a valve problem). Pencil cases have 2 compartments so I put my kleenex & mini-pads in the dry side.

Syringe tip covers work as a plug for the catheters in a pinch. No need to buy any special ones. I always carry one along with micropore tape and a full 'hook-up kit' including leg bag whenever I travel far (often).

I keep a spare kit at work too. I never know when somebody will steal my purse. I work 2hrs from home so it's obligatory for me.

Tricks? Lots. Every morning I have black coffee, juice (prune is best but tangerine works for me too), water + meds. Nothing else until nearly noon other than more fluids. It clears out my pouch for the day. I make sure that nothing is hanging around or stuck in it. I eat a high protein low carb diet that keeps things running.

I love both fruits and veggies but I'm reasonably careful since I am a lazy chewer. (you need to chew chew chew when you have a K pouch. I don't)

I make tons of blended vegetable soups in the winter, cold gazpacho-like soups in the summer, to keep up my veggies, and all-fruit smoothies year round. No chunks = no clogs.

Rule #1 when having a problem when intubating. Do not panic. Most often it takes a little patience and deep breathing to get the tube in. Change directions, change your aim. Point the tube upwards or downwards. Put 2 fingers over the stoma and pull gently upwards on the skin. It opens the valve up.

Rule #2 if changing directions of the catheter still doesn't work, change directions of your body. Stand, sit, lay flat (in the tub!). Stick a leg bag onto the catheter so it doesn't blow up all over your bed (clean-up is another complication that we can live without!). Use tons of lube or oil.

Rule #4 if that doesn't work, take a muscle relaxant (if you can) and try again in an hour or 2. Never force it. Never shove the tube in. Your stoma will swell up an bleed if you are violent to it so be gentle; use an old stiffer tube. Or freeze one. Try laying on your side or lay down on your stomach for a while to the pouch/stoma to shift positions.

If all else fails, go to ER with a detailed diagram taken off of the net of your K pouch and intubation techniques. Print it out in multiple copies. Hand it out to everyone. It is easier for all concerned if you have paper copies because they are bigger and non-aggressive. Shoving your phone in a nurse's face is not.

Rule #5 they may need intervention radiology to get the catheter in. Once it is in, keep it there for at least a week. Sometimes a month is necessary for the stoma to scar in and straighten out. Do not be impatient. I took the subway to/from work 2hrs from home daily and stood on a stage, teaching with the catheter in place and plugged. If you need to do it, do it!

Rule #6 attach the stoma/legbag or plug to your skin in a non-aggressive manner. I use 4x6 colloidal patches (they are healing and do not cause skin rashes, blistering or other problems). I clean and dry my skin well, and place the 1st patch to the right of my stoma, lengthwise. Then I put the catheter in (if it isn't already). The 2nd patch gets a hole cut into it about 1/3 of the way in. The idea is to sandwich the catheter between 2 layers of colloidal patch.

I tried to upload the diagram but it is too heavy, so you can PM for a picture.

1 more thing that is all too common is how to deal with blockages/occlusions.

They come on hard and take us by surprise. They are terrifying. Most of us do not know what they are or how to deal with them.

A few questions to ask yourself before running to ER:

1. is there any output? if so, you can wait a bit and see if it will resolve on its own.

2. can you keep fluids down? If so you can stay hydrated. No solids. Hot liquids are best. No dairy (gas-forming!).

3. If you answered no to either 1 or 2 or to both: keep moving, walking, bouncing (I keep a pilates ball in the house and roll, bounce and lay on it to try to open up the blockage)

4. Is there pain and or fever? If no to both, keep up the fluids as long as there is output and you are not throwing them up.

5. If you start throwing up, have labour-like cramping and waves of spasms, are running a fever and can keep nothing down, call your surgeon and head for ER.

6. I have found that I can wait these out for about 25hrs. That's my limit. I also take a shot of Gravol/antinausea meds that my GP prescribed. It calms everything down and allows me to sleep. Usually, when I wake up the blockage has cleared. If not, I massage the area, use heating pads and pray for relief.

I do not joke about blockages. They can be very dangerous. Dehydration too.

So please, Warn you Surgeon. Tell your Doctor. Prepare your visit to ER to help the medical staff!

That's all that I've got.

I do hope that this helps!


A little addendum to my previous post:

Some of the things that we never tell Continent pouchers:

1. your stoma is part of your body, it is not made of artificial tissue, therefore it will react to everything you eat or do.

2. If you are dehydrated your stoma will shrink. It will get tight and difficult to intubate. Use more lube. It may even crack and bleed. As long as it is just a few drops of blood, you should be ok.

3. Your stoma will react to your meds. If you take antihistamines (allergy meds, cold meds, nasal spray)  it will do the same as being dehydrated. Your stoma will shrink up, get sensitive, crack and possibly bleed.

4. Keep a collection of different types and calibers of catheters. You may never need them but you will be happy to have them if you do. I even have a thicker endotracheal tube that is shorter and wider with only 1 opening. In case of need I was thrilled to have it.

5. Blue pads are your friend. I always keep one under my mattress pad.

6. Chewable pills (ask your pharmacist if you can break up your pills or crush them before trying) are better than swallowing large pills.

7. Ask if there is a non-gastro-resistant version of your meds. I had a nasty surprise when a whole bunch of pills had accumulated in my pouch and then suddenly melted at the same time (I drank pineapple juice and nearly overdosed)

8. If you are having leakage, do 2 things before panicking: 1. Try using a smaller catheter. A soft one is best, move it around and twist it to see if there isn't a piece of something stuck in the path that is blocking your valve open. 2. the bathtub test: fill your tub with enough water to cover your abdomen and then look to see if there are bubbles any coming out of your stoma. No bubbles, no leaks.

9. Some stomas/valves have a twist or a crook in them. Stuff can get blocked or accumulate in there. Then when you move around it will seep out. Don't panic, if it doesn't effect any other continence and doesn't increase in volume or let air out, you are fine. I've lived with it since 2010.

10. unless you have polyps, a specific disease or a valid reason, you do not need to get scoped every year.

11. When getting scoped or having an opacification done on your pouch, you do not need general anesthesia! It is not a colonoscopy.

12. When having an opacification done (when they inject a liquid that shows up on x-rays), have your radiologist take the x-rays while filling and emptying out. Also, have them take the x-rays while laying on your back, right side, left side, sitting up and standing up. That is the only way to diagnose certain problems like a dropped pouch (they can unhook from the wall and end up sitting on your other organs: uterus, bladder...) or a twisted pouch. Insist.

13. You do not require a K pouch or BCIR surgeon for everything. A good general surgeon or bariatric surgeon who does J pouches can help you with many problems. Especially if they are open-minded and willing to learn. Other than the valve, our pouches are the same (more or less) as j pouches. If you have pouchitis, ulcers, twists etc... they can help. Also having a laparoscopic surgeon do minor repairs is a bonus. Hernias, twists & adhesions can all be done this way with a shorter stay and less recovery time.

That's all I've got


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