Casey – – welcome to our k korner and I'm glad you are participating. It sounds like you have gone through a horrendous 10 years and during a very difficult time of your life. I agreed that you will be able to handle whatever is thrown at you. Your attitude is very very impressive.

Others will  chime in with their opinions, as our experiences very just as we do. 

 As for your questions: I don't cover the stoma with anything, although I tend to have a lot of mucus so I adher either part of a sanitary pad or nursing pad onto the inside of my panties. Some people can get away with just Kleenex, but I go through that in 10 min  

I assume you can drink soda and eat gummy bears,  although I don't consume either because I don't eat any sugar. Your diet will take awhile to figure out and adjust to and at times it can get frustrating.   Refined sugar increases inflammation in the gut and with UC  I find it's best to minimize inflammation – – but that's my choice. 

 On a daily basis I take a catheter, small packs of lubricant and a disposable Fleet enema bottle that I have emptied out, rinsed and reuse. Before going into the stall I fill the enema bottle.  If you feel conspicuous doing this, or whatever you use for irrigation, you can fill up a water bottle and take that into the stall with you to then fill your irrigation method. Because I create such a terrible stench– – of which I am very embarrassed – – I take either lemon oil drops or a small dispenser of poo pourri  to put into the toilet water before I evacuate.

 From my experience, I say look at the first year as the timeframe for your adjustment period.   That way you go through each of the seasons, changes in food and various situations. In hindsight I think it took me that long to adjust and really feel comfortable with the K.  

 Keep us posted as to your progress, and your frustrations. And keep in touch with the Stoma nurses.   Janet 

Casey, I have had a BCIR (similar to a K pouch) for 4 years and have had very good results.  In the beginning, you may experience some minor “setbacks” as your pouch expands to its full size.  In my case, I had some stoma leakage and suspected pouchitis, but that cleared up completely within 3 months.  Be sure to stick to the intubation frequency schedule your surgeon recommended.  I now have no leakage and empty my pouch about 4 times a day at my convenience.  If I am participating in an activity where intubating could be challenging, I empty beforehand.

I usually cover my stoma with half an incontinence pad that has a sticky strip on the back that attaches to my underware.  When swimming or participating in certain other activities, I use an Ampatch or Cover Roll Stretch tape with a piece of TP.  When away from home, I bring along a catheter and an extra dressing which I put in a very small camera case. Roll up the catheter carefully so you do not bend it by the inlet holes.  I usually find my stoma produces enough mucus to insert the catheter, but occasionally I need to use a little saliva.  I have not found it necessary to irrigate (but everyone is different), so I do not bring a syringe with me.  Rinsing my catheter in a public restroom takes less than 20 seconds and those who might be present won’t realize what you are doing.  If you are in a situation where you feel uncomfortable or there is no running water (e.g a porta potty), just wrap your catheter in TP and rinse it when you get home.

I rarely drink soda or other carbonated beverages, but have had no problems when I do.  Go easy on the vegetables while your pouch matures and drink plenty of fluids to prevent dehydration and to make emptying your pouch easier.  Sweets and carbs in moderation are OK, but have been associated with pouchitis in a few people.  I have had no problems with either.

Bill

Hi casey, I had my K pouch operation in 2011. I'm on several online support groups but this group seems to be the best. I hardly go on the other sites now. I use a plastic travel bag and I carry my catheter and a disposable rinsed out enema bottle (easy to locate and relatively cheap). I have a small travel bottle for my lubrication and some large band aids (not finger band-aids). Recently I purchased different band aids and found that I am a little sensitive to the glue on the band aid. Apparently I am sensitive to those cloth ones. I use these band aids when I go out for a long period of time. When I come home the area around the opening is red, that doesn't really bother me but the itching does. But the itching seems to depend on the humidity. So when I'm home I use a cut up sanitary napkin and paper towels. I put the sanitary napkin to my underpants and place the paper towel between the napkin and my body. That soaks up the leakage and I just throw the paper towel away when I empty my pouch. I like using the band aid because I feel 'more normal' than having a piece of sanitary napkin taped to my underwear. When I take a bath I have waterproof band aid brand bandaids. There was a discussion on J pouch re stoma coverings that gave many different types of coverings from homemade to store bought. https://www.j-pouch.org/topic/stoma-covering

To clean the catheter I do one of two methods. This one I do most often I use a (ME6032) Continent Catheter Cleaning Brush and I wrap pipe cleaner around the brush end and then cut off the excess pipe cleaner. When finished cleaning, I unwrap the pipe cleaner and throw it away. This only works with the 30 fr catheter. I can't guarantee that It will be useful for smaller cathers. But the brush without the pipe cleaner might work alone. The second method is vinegar, baking soda and bleach. Because of the bleach I use this one sparingly. Here is the discussion for cleaning https://www.j-pouch.org/topic/u...leaning-of-catheters

Regarding soda and snacks. I have the occasional soda. But I like the cola types they apparently leach the calcium from the bones so I try not to have it every day for that reason. I seem to tolerate it well though.  But it does cause gas and I need to empty my pouch and the gas soon after. As for gummy candies, I've never had them but I eat chocolate and I refuse to give up my chocolate.  I have not experienced any problems. I would chew these candies well though. I was instructed to chew my food well so no large pieces of food block the opening. So far I've been able to tolerate what I normally eat. The only problem I had was when I had an apple in the morning and, I forget, some other fruit later on. The water/liquids I drink was absorbed by the fiber and I got a blockage. Apparently I need to be careful of the fiber. Also I can't eat bananas as they bind. It's a shame, I like bananas. 

I believe you will need to see what you can tolerate. Go slowly. Drink plenty of liquids so you don't become dehydrated and follow the post op instructions from your doctor.  

I hope this helps and I wish you the best of luck.  Have a most spectacular day. Tootles. Mary

Hi Casey welcome to the Korner. I had my pouch built ’15 coming from a permanent ileo. The K-pouch has given me my life back, more confidence, and allowed me to further my career.

Now to your questions…

• I cover my stoma with a small piece of nursing pad (I cut each of them into 4 small pieces), and folded up thick Scott paper towel as barrier between the pad and my boxers. The pad I change every 4-6hrs, the paper towel stays dry for the most part. When I work out or go for a run, I use the pad and slap on a tegaderm transparent film.
• My diet is all over the place and pretty much eat anything, but I pay for it with thick output, which is why the need to carry my irrigation set. Few things I avoid though are skins/nuts/corn as they clog up the catheter and makes intubating a little more challenging. Make sure to drink plenty of water. If people with colons (which re-absorbs water) are advised to drink a minimal 8 cups of water, we should be drinking 10-12 cups of water.
• Inside my toiletry bag…30F catheter inside a toothbrush holder, irrigation set with 60cc syringe, small 1oz plastic bottle (from ebay) of essential peppermint oil (kills odor and gets rid of evidence lol), extra paper towels, and stoma pad covers. I used to carry surgical lube, but now I just use plain water as lubricant. I noticed I had more mucus output when I used surgical lube. Also the first few months I had gas pains that I needed to “burp” the pouch frequently. One tip a veteran gave me is to carry a 24F catheter in your pocket, rather than having to carry all your supplies with you.

Hope this help. Please keep questions coming.

Hi Casey, so glad to hear you are the happy owner of a new k-pouch! Your excitement is certainly understandable after what you've been through.

I echo a lot of what has been said above regarding "travel" items. I have a couple cute LeSportSac toiletry bags all ready to go that I drop in my purse if I am going to "go" when I am out. Items include: (2) 30 Fr Catheters (If I can't get to a sink discreetly, I may have to toss one.) (2) Allevyn Life silicone bandages (love these -- great for sensitive skin  while being absorbent, cute and comfortable! Highly recommend if covered by insurance, otherwise expensive.) (2+) Surgilube 3g packets. (2+) Ziplock sandwich bags (for wet items.)

I also include a couple latex gloves, poopurri spray, several folded up pieces of Kleenex hand towels, travel size liquid soap, and an empty fleet enema bottle. In general, I pack assuming the bathroom I end up in will be missing the expected soap, paper or water. I usually carry a water bottle everywhere, so can always use that if needed too. I pretty much have to irrigate every time I intubate, but I hear that is not the case for everyone.

I tried a lot of options for covering the stoma before settling on the Allevyn "flower" bandages. I have no idea how others get along with bandaids or sanitary napkins, etc., taped to their waistbands -- I'd be a mess. And I used to be super picky about sanitizing catheters and syringes after every use, but the reality is that you can just wash them out at the same time as you do your hands and with the same soap. My insurance allows for more catheters than I need so I just toss them when they get funky.

As for foods, the on-going concern even after a year is making sure what I eat can be easily digested or fit through the catheter holes if undigested. So this precludes eating a lot of thick meat at once or fiberous foods, unless I am sure I can chew them thoroughly enough. I have found that things like leafy greens and potato skins are just never good. Watching this, for me, has also helped with blockages and digestion discomfort as well.

I love sushi, but I pay for it when I eat it -- it runs straight through me and I have a lot of difficulty getting all the seaweed/nori out. My husband is hispanic, so I eat/make a lot of Mexican food -- even though the corn in masa is all ground up, anything made with it (tortillas, tamales) gives me super thick output that takes forever even with irrigation. Most candy, chocolate and sweets are going to be fine (watch out for dried fruits, coconut or nuts) -- but as Janet mentioned, a lot of sugar is bad for inflammation (and gaining too much weight, which is bad for the koch valve.)  

As for soda, since you already had a "bag" my guess is that you've already dealt with gas problems. The same goes for the K-pouch; whatever goes in can't come out until you intubate. For me this means little to no carbonation or sulfur-containing foods. But I understand everyone is a little different with this too.

Looking forward to hearing how you're doing moving forward -- Pretty soon you'll be giving us tips! Best wishes and God bless, Jennifer

Thank you all so much for such helpful information! Keep em coming!

My catheter is out and I'm emptying on my own -- still doesn't feel real. My valve is pretty simple to navigate, just points straight down (puts a bit of pressure on my bladder, which is actually useful when figuring out when I have to go). One more question: When you intubate, when the flow stops, does that generally mean there's no more left to empty out, or do you typically insert the catheter more than once?

I assist the flow through the catheter by “bearing down” with light to moderate pressure, like having a BM.  It may be necessary to remove the catheter to pick out pieces of undigested food or to irrigate if the output is thick.  Experiment and you will find what works best for you.

For me i wait for that final "swoosh," followed by air bubbles on the catheter. When I take the catheter out and holes have no blockages, i know that i've completely emptied. When there's something stuck, i take out whatever is stuck in the hole and re-insert the catheter. Also when you still have some cramping or pressure back there no matter how recently you just intubated, it usually means there's still contents in the pouch.

When I empty my pouch and nothing comes out I'll flush it and then I'll use my abdominal muscles and pushing sometimes I will pull the catheter out slightly and then reinsert it but I rarely pull the catheter out totally and then reinsert it. I have rarely removed it totally when I know there is something stuck in the catheter. By Shifting the catheter sometimes more stuff comes out but usually if things are flowing normally and there's nothing more coming out I usually feel that the pouch is empty.

BTW I forgot to mention when I use the Band-Aid, I take a paper towel and I fold it in the shape of the Square pad of the of the bandaid. I usually have to rip the paper towel into smaller pieces and then fold it into square I put the folded paper towel on to the pad and then put the  bandaid on. The paper towel soaks up the leakage. I try not to use TP as that leaves lint. But in a pinch... I'm sorry I forgot to mention that.

The best to you. Have a great day. Mary

I know this is an old thread, but I thought I would add my experiences from 16 yrs with a BCIR. I use a folded in half thin washcloth for a stoma cover. They are the very thinnest and cheapest ones from Walmart-around $4 for 18. I fold them once and it catches all mucus ( I don’t think I have that much mucus). If I am wearing tight fitting clothes, I will use a kontiba stoma cover ( which is no longer carried by edgepark—but I still have several boxes) the washcloth is especially great at night or when you are at home. No skin and tape problems, reuseable, and cheap.

i actually learned about it from this site. I also use vitamin e oil for lube.  I irrigate every time, so I do have to bring equipment in the bathroom, I use the foldable camping bowls to fill with water, and usually bring a paper towel or folded napkin to put on the floor. So many public restrooms have only hand dryers these days, you have to be prepared with your own paper towels.

i would also like to add my  experience with dehydration. Several doctors have told me, water is not enough if you are already dehydrated. I use Nunn tablets, easy to use and not full of sugar like Gatorade. They also make gummi enzymes (vitamin shoppe)

i have learned a lot from this site and I continue to read it often.

Casey:

I'm very glad to hear that things are going well. I have had a K pouch for almost 36 years (I was 21 when I had the surgery). I'm in northern Virginia. This group is great for offering useful tips and encouragement. Welcome to our group!

Always great to have a lot of choices to try out what works best for you!  Hard to believe I've been using the same type of stoma coverings for 40 years.  Brands may change but that's it. The cheapest and most comfortable route for me has been using nursing pads. When I'm at home I'll just put one inside my panties as most panties today have stretch and keep close to our stoma.  I also cut up each nursing pad into 4 pieces(I buy Parents Choice at Walmart, very reasonable!)  I use 3M transpore 2 inch hypoallergenic tape if I want to just use the smaller piece of pad.  When I swim, which is often, I cut up NUK ultra thin nursing pads, again small pieces that easily fit inside the waterproof transpore tape.  I don't use tape most of the day as it may cause some redness over time.  In my case because I've had to have some revisions over the years, I always wear a nursing pad plus a small round section of nursing pad for extra protection in case I ever needed it but since you're a K pouch newbie, I imagine and hope you have years to go before you may ever need a revision so perhaps just that small round piece of pad may be all you ever need!  Mucus output is different for everyone and some days you may need to change more frequently than others.  Sounds like you're already doing wonderful!

Hi, welcome to the club...

I've had my k pouch for 39yrs and have simplified all of my procedures.

1. If it has too much fiber I either chew a lot or blend it with an immersion blender.  I don't eat fruits after carbohydrates  (digestive and gas issues) but have no problem with carbonated drinks. .. I prefer the slightly sweetened flavoured waters.

Gummies? They are a whole food group for me... I just consider that they are concentrated jello and enjoy.

My 1st yr and any time I've had revision surgery or a problem (hernias, blockages...) I stick to high protein meals with a bit of green steamed veggies (broccoli, asparagus, artichoke...) They digest well that way and it's low residue. Carbs create a lot of matter in the pouch so proteins keep it light.

I use 1/2 A  minipad on the inside of my undies and a folded up Kleenex directly on the stoma . 

I take a makeup case or pencil case to carry my stuff around . 2 different carbs, 1 strait and 1 curved, a mini lube (although I rarely use it) a 60cc catheter tip syringe and a mini water bottle with a squirt top . I fill the bottle before going into the stall and use it to irrigate and rinse. If I know that I will need to irrigate then I prefill the syringe too.

Hope that you're doing well.

Sharon