This is my first posting.

Greetings from Austin, TX.

I have a new K-pouch as of 1/29/07. The continuous drain was kept in place for 7 weeks, with removal just last Monday, 3/19.

I'm now on the rigid schedule of catheterizing every 2-3 hrs this week and every 3-4 hrs next week, 24/7. I've decided to place the continuous drain in overnight to get some rest.

I have some questions:

1. When does catheterizing and locating the path to the pouch become less intimidating and more second nature? I'm doing pretty good but it's still a bit nerving each time I enter my stoma, hoping I won't damage anything as I find the path.

2. What kinds of catheters do you use? Any tricks to get thicker stool to move in addition to water irrigation and drinking lots of fluid?

3. I'm using the stoma cover AMPatch but the adhesive is tough on my skin. Any suggestions?

4. Anyone out there a long distance runner? How do you manage?

Thanks and look forward,
Amy

Sounds like you are doing everything just about right. It will take a bit more time to get completely comfortable intubating. Just go slow and try and follow the angle of the valve. Don't push too hard if the tube does not want to go in. Don't be alarmed it you see a few little specs of blood now and then. All normal.

I use the straight Medena 30 French Catheter. It has a hole in the tip and two larger holes on the sides. Use lots of K-Y jelly on the tip when intubating. I get mine from Torbot. These are the original caths designed by the late Dr. Kock. They are made in Sweden where the K-pouch surgery was invented.

Irrigation and water will make things move along. Drink some grape juice too if things are really thick.

I would tend to be a bit more gradual in adding the number of hours between intubations. Like 2 hrs. the first week. 2.5 hours the second week. 3 hours the third. 3.5 the forth, etc. etc.

Good luck. Oh, and who did your surgery?

Hi Amy
I continue to use the catheter Cleveland Clinic sent me home with the Marlen 30 french. I get them from www.continentostomystore.com. I also buy one ounce syringes and small tubes of lubricant from them to carry in my purse. There is a flat rate shipping so I order quantity when I order. There is one other I like that can be bought from another supplier.
I don't like the Ampatch for 24/7 use.The adhesive is an issue for me. I use nursing pads. The underwear I use keeps them in place so that no tape to secure the pad is necessary.

I am not a long distance runner (not even close) but what are you concerns?

Amy,

Ampatch makes many different coverings with different types of adhesives. If you call them and explain your problem, they will send you some other samples to try.

Lynne

Also...
the other reason I don't use AmPatch is because my insurance doesn't cover my ostomy supplies. Being that the AmPatch is a one time use, having to be changed each pouch emtpy, if I am emptying 5 times a day it gets expensive. I have used them for certain ocassions for a few hours.

Hi Amy,

I have the same problem with adhesives; I am highly allergic. It made the Brooke ileostomy a nightmare for me. I use the hypoallergenic Ampatch G - 3 Large rectangle patch. It works well for me. I don't use them 24/7, but rather when I am at work or out. At home, I use white wash clothes tucked into the waist band of my underware. My stoma doesn't produce much mucous, so it doesn't get too wet and I have never had any odor from it. If my skin is a little irritated, I dab a little hydrocortisone cream on and put the wash cloth over that. My best advice would be to experiment with things to see what works best for you.

As for intubating, it will become second nature. I'm at 13 months with my Kock pouch now, and it is so absolutely natural now, you'd think I had been doing it all of my life. It will get better once you are done stretching the pouch. Sticking to the rigid schedule tried my patience, but once that was over - no problem!

Best wishes,

Les

Try laying flat on the floor. That never failed for me in the beginning. Maybe it's because everything lines up just they way you were when you were on the operating table. I didn't need to lay down after about 4 weeks.

I took Leslies advice and bought nursing pads at Wallmart and when I'm home I wear high waistband underwear. When I go to work I cut the pad in half and cover with 2 OR 3" paper tape. If I have to irrigate a lot I need something waterproof instead of paper tape. Waterproof large bandaids from a cheap store works. I got my supplies off the sight that Leslie set you.
Hope it helps, Jeanne

I learned the following trick on this site a couple of years ago. Instead of a commercial patch or nursing pad, I take a Lite-Days Kotex pad and cut it into thirds. I put one of these thirds over my stoma and the sticky side adheres to my underwear or pajama bottoms (at night).

They are cheap, especially when cut into thirds, and have some sort of moisture seal and work well.

Carol

I've been doing this for about 10 years now and it did take awile to get used to inserting the tube. I prefer the curved medina catheters 30 french (that are no longer available unfortunatly) but I learned a trick on this website. boil the catheter while its in a bent position and it stays. for the stoma seals I use Nexcare Stomaseals by the company 3M. they are covered by my insurance and are not very expensive anyways. also I'm not a long distance runner but Iam very active and just this last saturday I did an adventure race that was 4 hours long. (and so fun and challenging)so from when I left the house at 5:45 AM to going to the race area and getting set up and doing the race and staying for the awards and then going out for a beer after and getting home at 4:00P.M. I did not need to empty because I was careful to not eat too much food and just snacking a little while running, paddling and biking. when I'm not able to get to a restroom easily, I just drink alot of gatoride type fluids w/calories and eat less than normal, in time you will get the hang of what you need and where and when. you could also bring a catheter in a fannypack type of bag and go somewhere along the way, until you get used to it all. Just hang in there and you will eventually be your old self again, with a few minor changes to the plumbing. Good Luck.

INSURANCE issues.
My ins co did not want to cover the supplies necessary either. I took it to second level appeals and Chris was granted an acceptance. All his catheters, ampatch and most other supplies are covered now. You have to fight for what you deserve and pay for in this competitive industry.
Dr Fazio wrote a letter of necessity explaining this is an ostomy, just not a standard Brooke.
Chris has received many samples from Austin Medical and has settled on a very small ampatch with a custom cut hole.

When I am out and about or out exercising, I use an Ampatch, an Ampatch insert (I seem to have a good deal of mucous output still) and a cotton ball that I put directly over the opening. Most nights when I am ready for bed, I use a nursing pad and three cotton balls around the opening (I found that when I rolled around in the night, the Ampatch would leak). If the adhesive bothers you, you could try some of the above suggestions from Ampatch or just try something similar to the nursing pads or feminine pads. Just tuck into underwear.

I have run a marathon not to long ago, but that was with a JPouch. I have started running again hoping to get ready for another marathon, but havent progressed very far (also trying to study for a masters along with a full time job). The only problem I have had with running is the leakage I still have coming from my sewn up rectum. Unfortunately it still drains, so I will put a cotton ball or two up there to absorb the drainage. Running at the gym on the treadmills, fearing that a little cotton ball is going to come trickling down, is a bit of a concern. Hasnt happened yet, but I am always wary of it.

Mike S

Thank you all for your great advice.
Since my original posting, I am doing so much better!
I'm able to catheterize successfully and with minimal, if any difficulty. I'm on the "intubate every 3-4 hrs" schedule for another week and place the drain in at night so I can sleep and continue healing.

I've experimented with your suggestions regarding ostomy coverings and have decided to use the AMPatch as the exception than the rule.

With respect to sports, Dr. Fazio said no jogging/running for 6 months. I can live with that! Today I went for my first bike ride since surgery-felt great. I walk everyday and continue to increase my distance, stamina, and strength.

Sports-wise, I'm a committed athlete for life. I've completed marathons, half marathons, and mini-triathlons with a J-pouch, a mini-triathlon, adventure race, and bike races with an ileostomy bag, and look forward to the first sporting event when the only thing "attached" to my body will be an Ipod, by choice.

Thanks again and Happy Spring.
Amy

Amy,
that's great you're feeling better!
I've been intubating on my own since beginning of november, and it's pretty second nature to me already
(guess it helps that you have to do it so many times a day at first, you have no choice but to grow accustomed to it)
I've intubated in some odd odd scenarios too. I've learned that it's really hard to intubate when someone is making you laugh.
and i've also learned how to be very good at doing things with one hand while the other holds the catheter (except for carrying ladders. I have not mastered carrying a tall ladder in one hand with the catheter and a container to 'catch' the stuff in the other.....don't even ask why that was a scenario)

i've intubated while sitting on the couch watching tv, i've intubated in target bathrooms, gas station bathroom, gym bathrooms, starbucks bathrooms. i wonder when the day will come that i will intubate on the side of the road. cuz i just know that will happen....


anywho, i just attended a weekend long 'conference' of sorts for this martial art that i practice. there were full days of strenuous workshops and excersizing. I had a little frustration on the longest day (saturday we went from about 10am to bout 7:30pm or so) b/c i would cramp up and feel like i had to intubate every couple of hours. but then again, i was being really active, lots of torso twisting and turning, lots of abdominal movement (kicking, cartwheeling, etc) so i guess i still have to work out some kinks.

but overall, i did fine. and felt good for doing it.
sooner or later you will get back to sports, and it'll be well worth the wait