Hi Laney,

First off, I am so sorry, it can be a nightmare when you are allergic to tape or adhesives...

So, no, with my k pouch I use no tape or adhesives. I stick 1/2 a minipad onto my unddies at the appropriate spot and use a folded up kleenex against my stoma...the kleenex sort of sticks a little bit due to moisture and doesn't move too much so I am covered. I only use micropore tape (anti-allergic) for special occasions like evening gowns and sexy nights to make sure that the stoma is covered. 

As for the belly...that would be a question for a k pouch surgeon. There are places that they can put the stoma (down low near the pubis...not my favorite but it has the advantage of being rather skinny down there)...in which case they may need to remove the extra fat from above to give you good access and visibility.

I gained weight in a very strange spot just over my stoma, only on the right side (???!) and developped a 'fat pack' right over it...I had it surgically removed through lipo and my tummy went down after that...

So there may be some options for you.

Check with your doctor.

Good luck

Sharon

Hi Laney-

Because my Kpouch is still new, I do use the AMP patch to cover my stoma because of the mucous output (which is an adhesive of sort).  But I have also used mini-pads as well (which I prefer).  I would think a stoma nurse could advise you on any adhesive that would be help you with the allergy.  I know most of the stoma nurses recommend the mini-pad versus any type of adhesive...

I am unsure about abdomen size; Dr. Dietz did say rapid weight gain can cause problems in the future with the valve.  But in all, the more firm your abdomen, the better off to keep the Kpouch healthy.  I hope this forum will help you as much as it helps others!  Thanks

Kara, (or anyone with recommendations for a new K poucher)

I am just home from visiting CC and Dr Dietz after 4 weeks with new K pouch. I Am pretty frust rated right now with what I was sent home with ... the first 24 hours intubating at home has been made so much harder by not having been prepared. I thought they gave me a supply of AMP patches, but didn't know until I got home it was a sample and I had no idea how to handle covering a massive mucus producing hole. Everything else I have at home has tape I can't get off easily. So now my skin is turning to crap. I'm realizing I don't really know what I'm doing with any of this. They kind of blew off my questions about cleaning things because it's all going in a black hole... But I am home now and I'm realizing it can't possible make sense to have filthy poo covered stuff hanging around?!!? It's like I got the unrealistic hospital nurse version of how to do this -- plastic gloves, open a new one and throw everything away ?!?! Sorry for venting at you, but I'm floundering and came online looking for any answers for the newbie and saw your somewhat recent post.

Which AMP patch are you using? What is a mini pad? How are you handling cleaning and storage of the catheter at home? (I share a restroom with the family) How do you handle it when you are going to be out of the home? I'm obviously still getting used to intubating and the fact that that whole process isn't exactly "plug and play" as well, so anything else you can offer to the new and overwhelmed would be a Godsend!

Jennifer

Jennifer – I was wondering if you had made it back for your four week check up, and now I know! Your frustration is well understood by me.   I'm so sorry that you are going through this with not enough support from CC.   It may sound counterintuitive, but the ostomy nurses will be an amazing help to you. If possible call them ASAP so they call you back today.

I happen to  produce an extreme amount of mucus. I use a nursing pad, which I stick to the inside of my panties, and frequently used part of a sanitary pad, which I tape to my body  and put a piece of tissue over the sticky part so that it doesn't adhere to the nursing pad. I need to change the sanitary pad several times a day, but then again I have an excessive amount of mucus.

 As for the angry skin, which can also be painful, I use the no sting spray almost every time after I intubate.  The stoma powder can also help calm down the redness. One of the things the nurses can do is send you some more Patches or tell you how to get them.

I'm sure others will post suggestions, and please keep asking questions.  I know this is a tough time for you, as it was for me, and I can tell you it's going to get much much better and at some point you will love your k pouch.

Oh also, I wash it out in the sink with a little bit of soap and warm water, dry it off  and store it. Then again I live by myself and don't need to share a bathroom. In time you will become very efficient with intubating outside of the house. At first I was really frightened, and now it goes very  smoothly. Remember to relax when you insert the catheter and lean slightly forward, as that for some reason helps relax the muscles. If you simply can't insert the catheter stop immediately, put it in the freezer for 20 minutes and try again   I don't use that technique anymore but it sure helped it first. Good luck! Keep us posted, Janet

Hi JenJen-

I am so sorry you are having such a tough time.  I agree with Janet the ostomy nurses should be your best friend through this transition.  But either way everyone has a method and you will find your method sooner than later!

Since you produce so much mucus (as do I and Janet) the amp patches won't really help.  I also suggest the nursing pads (from Walmart or Target) or I use the Allevyn Life Foam pads (from Edgepark) that pull the mucus away from your skin so it is not so angry.  However they are very expensive and I have had to cut down (hence the nursing pads).  But just to get your skin calm, consider it.  The stomahesive powder is the best.  And any air you can give also helps heal your skin.  I keep my supplies in my linen closet and keep my catheter wrapped in a towel next to the commode.  I understand not everyone wants to see your 'stuff' so I do the best I can by keeping it covered up.  When I go out, I bring a supply bag: an extra catheter, lube and pad in a plastic bag and stuff it in my purse.  I have learned to keep a supply bag in my car, in my gym bag, in my husband's car - because it is not something you can go out and forget.  You will always need your catheter to intubate.  Just something to think about down the road as you get more active and go out.

Take it easy on yourself JenJen...this is all new and you will get the hang of it.  Keep trying different positions to intubate; I lean back but Janet leans forward...you will find your position.  I like your analogy, it is not a 'plug and play' procedure.  It takes some work and time to get it right ... and you will! 

I am back to CC in July for a repair and I so look forward to it.  I realize how tender our valves are and how gentle we must be...mine has slipped and I am back to wearing an ostomy bag and intubating until my surgery.  I chuckle at my predicament and know that this too shall pass.  Go easy on yourself, use this forum and use the ostomy nurses.  They are great.  Does this help?

Please take care and keep us posted! Kara

 Jennifer – – also try posting your request under a different topic.  I think if you are more specific as to what the problem is you will get better response.

also try rereading some of the  older posts  on this topic, as the information could be helpful for you.  Jh

JenJen posted:

Kara, (or anyone with recommendations for a new K poucher)

I am just home from visiting CC and Dr Dietz after 4 weeks with new K pouch. I Am pretty frust rated right now with what I was sent home with ... the first 24 hours intubating at home has been made so much harder by not having been prepared. I thought they gave me a supply of AMP patches, but didn't know until I got home it was a sample and I had no idea how to handle covering a massive mucus producing hole. Everything else I have at home has tape I can't get off easily. So now my skin is turning to crap. I'm realizing I don't really know what I'm doing with any of this. They kind of blew off my questions about cleaning things because it's all going in a black hole... But I am home now and I'm realizing it can't possible make sense to have filthy poo covered stuff hanging around?!!? It's like I got the unrealistic hospital nurse version of how to do this -- plastic gloves, open a new one and throw everything away ?!?! Sorry for venting at you, but I'm floundering and came online looking for any answers for the newbie and saw your somewhat recent post.

Which AMP patch are you using? What is a mini pad? How are you handling cleaning and storage of the catheter at home? (I share a restroom with the family) How do you handle it when you are going to be out of the home? I'm obviously still getting used to intubating and the fact that that whole process isn't exactly "plug and play" as well, so anything else you can offer to the new and overwhelmed would be a Godsend!

Jennifer

Jennifer. 

I know how you may feel.  I don't have a K pouch.  I have an ileo.  But the nurse I had was pretty well useless.  Nice.  But useless.  I was sent home and had to figure it all out on my own.  Which was probably a little less complicated than  a K... . But nonetheless frustrating.  To be sent home with little supplies and hardly any info.  Thankfully my wife is very level headed and we got through that part and figured it out ourselves.  

I hope you get through this time with flying colors. 

Richard. 

Hi JenJen,

I am so sorry that this is such a frightening experience for you and you feel abandoned when you need help the most...

Let's see if I can be of some service. 

I had my k pouch done long before those patches existed...so they were not on the menu...Large or wide Minipads (the thin kind to protect your unddies) cut in half...they are meant to be absorbent...I stick them to the inside of my unddies at stoma level..next...fold up a kleenex or paper towel (depends on the absorbency you need) and just place it over the stoma...no tape. The moisture from the mucus will sort of stick to it and keep it in place...stretchy or tight unddies help hold it down.

I only use tape or patches for emergencies (tight dresses or hot nights)

Intubation. I have kit in every bathroom. I use Dollar store pencil cases...cheap and disposable. I keep my 60cc syringe and tube inside along with my lube. 

Some of them have compartments where you can keep little packets of lube if you are going out. 

I pre-fill the syringe with tap water and then use that to either irrigate the pouch to thin my output or rinse the tube out directly into the bowl...I plug the sink for easy one-handed re-filling. If things get too gunky I woosh more water inside me then rinse again.

I can keep a tube for years. They get a bit stained and also stiff over time but that can be a good thing too...I keep a variety of them (strait, curved, wider, stiff...is this starting to sound funny?)

You get used to it...don't worry...you may be turned off, disgusted etc for a while but after years...it's just poop!

I lift the lid of the toilet every time (splash-back means stains under the rim...use a damp piece of tp to wipe it down each time)

I hide my kit under the sink...no one except my hubby knows what is in it....I just say, "girly stuff" and people leave me alone. 

In public I use a small water bottle...fill first before you enter the stall...Works both for filling the syringe in a pinch and rinsing the tube.

You might prefer stalls with a sink if you can get them in the beginning...if not the bottle is your best bet...Add a few sheets of paper towel to cover your legs and unddies for protection at first...then wipe everything down, throw the paper away and you are done.

Give it time...Take a deep breath...it should be fine

Sharon

Instead of a patch, I use a folded very thin washcloth (when I have excessive mucous I put a paper towel next to the stoma). I get the washcloths at walmart, pack of 18 for about $4. I use a nice looking dob kit (TJ max, marshalls, wal mart) at home to store my catheter and lube. For going out I have a small zippered kit (from REI) and I also bought the REI or amazon collapsible bowls  (8 oz each, in the camping section) that fit in my purse. I fill the bowls before I go in the stall. I irrigate every time I intubate, so I need a lot of water.

At home I sometimes use Vitamin E oil/olive oil  instead of lube (thank you Sharon for that idea many years ago). 

Stalls with sinks are a godsend, but very rare (except in FL where it's a law for handicapped stalls). I also always rinse the catheter with water from the bowls before I put it back in my REI kit.

I use Kontiba patches occasionally from Edgepark. They come in 3 sizes.

Another tip I learned from this wonderful site is if you have trouble inserting the catheter--cough a few times--and it does something and the catheter goes in.

I just came back from seeing Dr. Shen at CC for my yearly checkup. Wow, they are building 3 new medical buildings on their campus!

Good luck with everything.

I'm wearing pants! This is newsworthy because they are not one of the 4-5 elastic waist joggers, sweats, or athletic pants that have been in regular rotation the past 4 weeks. Furthermore, I wore them to the movies! I owe it in part to all of you for responding so quickly and so helpfully -- Thank you so much! You all wrote something that made me feel less alone, answered a question I had or a question I didn't know I had. I've heeded all of your advice and the past 24 hours have gone much better!

I think like Richard mentioned, I get the nice but useless nurses. The were also very late, a little distracted and therefore rushed. I did manage successfully intubating in a target handicapped restroom on the way home, but it was pretty stressful. Getting home and having to keep it up every 3-4 hours along with skin/stoma care plus food/liquid/gas balancing act quickly became overwhelming. 

Yes Janet, I made it through phase 1 -- but I basically just rode it out at home. Home healthcare was no show or no help and I'll admit I got a little depressed battling fungus and bacteria I picked up at CC along with post surgical urinary difficulties.

Two things I wish I'd thought of: keeping a food diary of what inflated the bag so I'd be better prepared for the gas in the pouch, and keeping a waters catheter setup for just in case I have a problem and need to leave a tube in.

Kara, thanks for all the great tips -- but what the heck, going in for a repair already? Slipped valve? Looking forward to it? Chuckling at your predicament? You're temping me to drive down and see who this amazing lady really is :-) Did you have an accident or is there a cautionary tale you can share?

I wonder if you don't already know that Dr Dietz is leaving CC? Or maybe others would want to know? He mentioned it during my visit Thursday and the stoma nurses in the room audibly gasped, "What?" They acted like no one knew. Dr Dietz simply said, in regards to my contacting him for follow up care, that he would be at the Clinic through July and at Unuversity Hospitals (CC's competitor) starting in August.

Sharon, thank you for replying with so much useful personal info. You simultaneously answer and bring up more questions for me about catheters and catheter care. They gave me a script for 1/month and I asked them why and they couldn't explain. So your saying you've got some a year old is interesting, I started to use bleach but thought better of it since it can be hard on plastics and then switched to plain soap. I didn't know the py came in shapes either. Curved?

When I think of packing my catheter to go, I don't know how as its so long. Do I others cut it shorter or just roll it up and deal with it being misshapen. Maybe I am over thonking things :-/ Also Sharon & Marz, why use vitamin e or olive oil instead of lube?

Things I found that help: Blue Sensitive skin tape at Walgreens has limited adhesive problems 

Things I need to look into: Using nursing pads, no sting spray, stoma powder, life foam pads, feminine pads, and kontiba patches. Getting extra catheters for to-go bags and figuring out setup should I need to leave in a tube (leg bag, ostomy bag.)

 I'm setting tomorrow to clean up all this medical paraphernalia cluttering the house and organize how it's stored/accessed. I've taken note of all your personal methods and I'm sure this is the next step in my getting more comfortable with all of this. God bless you all!

Jenjen

Hi JenJen, 

Such wonderful news!

I remember my first zip-up pants post op when then removed the indwelling cath...they dropped to the floor (they were the ones that I arrived at the hospital in and I had lost close to 30lbs...)still it was nice to see my hairy legs in something other than skirts. (ps...if you keep a couple of those old fashioned diaper pins around, you can pin the leg bag to the inside of a wide skirt (do not pierce the bag itself of you will spring a leak!)

Some answers to the next round of questions:

I do not have insurance for k pouch supplies here and my stuff comes to me from the States or Canada (thank you all of those k pouchers and ex k pouchers who sent me their left over supplies when I was running out...) so I make do with what I have got...

Those mini lube packets are expensive and I only use a few drops each time (I only tear a tiny hole in the packet so that I can reuse all week) and the tubes of lube are way out of my budget here so...olive oil. (or carrot oil which is fantastic for the skin...it is full of Vit A) I keep them both close at hand in an old lube flip top, one handed container...2 drops and you are done..So cheap and I never run out!

Keeping those darned supplies in the house...well I keep those beautiful boxes that cosmetic gift sets come in at Xmas or Valentine's day...and hide my supplies in them...no one thinks to look.

I keep my kits organized by usefulness...

1. Every day kits are a long/large cosmetic cases (Always Plastic Lined!!!!! easy to clean up with a wipe!)...they contain 1 or 2 different tubes (strait and curved or 28 and 32), 1 60 cc catheter tip syringe,  mini packets of lube (for the purse kit), and a clean zip lock for those emergencies where I cannot rinse the tube. 

In my (big) purse  I always have a mini packet of kleenex to use as a stoma cover and my mini water bottle. 

Under the sink in each bathroom I keep my every day kit that is the same but without the lube...at home I just use tubes of it or tiny spray bottles of oil.

I then have 3 types of emergency kits hidden away.

1. For difficult intubations I keep a kit with an assortment of tubes...All sizes including tiny single use urinary caths that comes in pre-lubed packets...left over from when I had real problems.

2. A leg bag kit with belt and flange etc if I need to hook up in a pinch...

3. an ambulatory hook up kit with all sorts of colloidal patches to tape the tube in without hurting my skin and an assortment of plugs for the end of the tube...used that a lot when I had to keep the tube in for months at a time while awaiting my redos...

And an 'everything but the kitchen sink' box with everything that was left over from hospital stays (those blue pads, stoma powder, guide wires...), visits to the stoma nurse's office etc that she may have given me to try...you just never know.

I keep a couple of extra kits on the ready for traveling or if (gasp!) I forgot my kit somewhere or lost it.

As to how to pack the cath to go? Easy, it bends. Strait caths bend and eventually will crack after a few months or years (yes, I said years), but they have curved ones that fit very nicely in a makeup bag. 

Never bleach a cath...it makes them hard and brittle. A mild soap is fine but after a while I just rinse with running water whenever I can...

Some people keep a pair of tweezers in their kits to remove those nasty pieces that get stuck in the flute holes...I just use paper and squeeze them out.

By the way, all of my girlfriends know to give me and 'freebie' make up bags that they get for my kits...I love the Clinic ones which are usually just right...but I have florals and prints and all sorts of colors...for pencil cases the dollar store is my friend.

Sharon

Hi Jennifer-

Your last post sounded 100% better and I am glad you feel better.  I know I sure did when I first had my pouch.  Sometimes it gets overwhelming with all the different supplies you can try- there is so much out there, but everybody is different.  Mini-pads don't work for me (I wish they did as they are so inexpensive!).  The nursing pads are the best for my output and comfort.  All in all you will find your groove and everyday will get better.

I am so shocked and disappointed to know Dr. Dietz is leaving...I have my surgery July 8th so who knows if I will even be able to follow up with him to remove my Waters catheter! Oh I am bummed! I trust the CC though so I am sure there will be someone just as good, but that is so disappointing!

My valve slipped because it just happened -according to Dr. Dietz.  About 1/3 of his patients have had it happen and there is no reason.  He mentioned the scar tissue that helps adhere the valve to the abdominal wall did not form as well as it should have, hence leaving room for slippage.  He said it was nothing I did, just a statistic of this surgery.  So one more time, he will secure the valve 'tighter' and I will ensure I am even more careful and ginger.  I want this K-Pouch to work - I don't ever want to go back to the ostomy bag.  I don't particularly like wearing a bag and intubating, but my leakage was so bad (I now have an incontinent stoma) that I had very angry skin and was leaking at work, leaking out everywhere all the time (very embarrassing).  So the bag is a great 'piece of mind' until July 8th.

Keep on keeping on - staying positive and know that soon enough - intubating, supplies, catheter storage will be as habitual as brushing your teeth! I certainly want to hear how things are going, so please keep us posted.  All the best!- Kara