I was going to privately email Jason but then I thought this line of discussion would be helpful to others so I’m posting here instead to get some dialog going.

Here’s my thoughts: Why does Jason have such success with his perm ileo? What is the secret?

Is it because you have a high level of activity so you are continuously breaking down scar tissue therefore you don’t have pulling or pinching sensations to drive you mad?

Does Holister make a more secure appliance tape such that you are able to soak in the hot tub [either daily or on regular basis] without the tape coming off and therefore having to change the appliance daily?

Does wearing the belt create a waterproof containment of the appliance and bag and therefore the tape and appliance does not erode quickly from the hot tub?

Is the hot water combined with jets of water on the abdominal muscles the secret?

I’d like to experience the comfort and happiness attained by Jason [and possibly others?] with his ileo and appliances. I’ve come to terms with having the little appendage, but have very few to ever of comfortable days where I don’t have burning, pinching, pulling or pain and discomfort. I am careful to always get a tight fit with the barrier ring, but I believe my skin is just not happy with a permanent bandage on it.

Also, I have pulling and pinching sensations from my ileo site. It’s kind of a feeling like someone jumped really hard onto my belly and now its throbbing from the impact. I don’t do sit ups or any kind of stomach muscle exercises, because I’ve found that the more active I am, the more my stoma complains.

So what’s your secret Jason? I’m wondering if trying Holister again may be the trick. I couldn’t get a tight fit with Holister after surgery so I went Convatec. I also like the moldable duradhesive colloid aspect of the barrier ring Convatec makes. But, now I’m willing to try something new if anyone has a better option. I just want to go through my day without Mr. Stoma poking and bothering me all day.

Is it possible that the unsnapping of the bag and wiping off the stoma is too irritating and therefore is causing some of my discomfort?

Please respond with your thoughts and suggestions. I’m interested in getting people to share what they believe is the secret to their success with the ileo and appliances.

- Cat

First off thank you so much for the kind words and for a great topic you brought up- I too hope some others hop on in and talk about it. When I answer, remember its just me... this works wonderful for me (though when I did the step by step I have had a TON of pms thanking me and it really has helped them)

Ok.. why do I have good luck with it? First, mentally I have done two things...1. accept that I have this for life...2.TRUST the stuff I use with it. To me the mental part was most important. I remember with my loop when I first came home I was afraid to bend over, shower or anything that may cause a leak - I was OMG what if this leaks. Then, I had 4 leaks in one day! I figured out what i was doing wrong (lotion soap) and since then I never ever cared if I got a leak (and havent since believe it or not!) So, I think the big part for me is First Mentally knowing the items I use will work and trust them.

Next, i found out that the more I got back to my normal life and started doing things again like ice hockey, hot tub daily, gym and things like that - my body seemed to adjust to everything and I felt NORMAL again. I still remember showering at the gym for the first time and seeing ppl stair at it.. some asked others didnt but mentally it was a huge step. I never ever hid what I had and that helps too!

Also, find products and items that work. Once I found my system it was easy and perfect. It took some trying differnt items from all name brands, and in the end I got what I liked and since then its been wonderful. I truly dont think I have had a leak since my first week with loop and now 5 months with the end illeo. There are so many things out there and once you get stuff that works thats the key!

Last, My Dr and him listening to me. When i was going for my end illeo, he and I talked about the changes I wanted from the first... placement, the length of the illeo coming out of my belly and so on. I think having the loop and then going to another one, it was nice to change some things I didnt like (my loop was about 1 inch to close to my belly button and 2 inches to high)!

So, Mentally I have accepted this, I am back to my normal life, I use things that work for me through trial and error and my Dr. listened to me... I think all those things have made this transition easy. PLUS I FEEL PERFECT!!! I FEEL BETTER THEN I COULD HAVE PRAYED FOR!!! I love life, love feeling good and I am so thankful that I had something they can fix and give me my life back! It wasnt easy 6 operations in about 15 months but in the end 100% worth it!

I agree with Jason... It's all about self acceptance,

Specially if we can think positively

1- Ileostomy are saving me from urgancey and running like crazy to find bathroom and imagine after all that u find a queue

2- i can now travel everywere without being worry that i should be near to my Dr. If any unexpected thing happen "and it was always happen last year"

3- i'm back to the gym and jacuzzi

Last week i was in London I went to meet prof Nicholls for pouch revision he was ready to make the revision .. but i found my self telling him that i want some extra rest

and now i'm thinking that Ileo isn't that bad and i'll keep it for a while.

Yes, it's all about being confident in yourself as well as with your ostomy system.

Of course in the beginning while still healing (and remember that for some of us that can take up to a year) things will still be sore and you will feel every little twinge and everything that exits your stoma, but once you start doing normal everyday things your mind is taken away from it.

I have to say that although I welcomed Wee Willie with open arms, I had a lot of problems in the beginning that prevented him from doing his job, so I had to wait 2 years for corrective surgery. Once I had that surgery (nearly 2 years ago now) I was able to completely forget that I had him and he is now just a part of my life and perfectly normal to me. I don't feel him unless my output is too thick and I don't think about him unless it's time to do a full kit change or I am having problems with the ulcers on him.

I take long hot baths (not lucky enough to have a spa ) have long hot showers, power-walk to work (about 30 mins each way) go on vacations.... any and everything that I want to do! Wee Willie really doesn't come into the equation! In fact the only time I carry any spare supplies with me is if I'm travelling off the island. I go about my day without even so much as a spare bag, that's how little I think about him and how confident I am in my system.

Like Jason says though.... That's just me! I have found a system that works for me! I had to try many different systems to find the one I liked and even had to be a little inventive, which is how I ended up with my "mix'n'match" system. I prefer not to wear an ostomy belt, but I do wear good supportive lycra underwear which does the same job.

I am a great believer in making my life as simple as possible and of the frame of mind that "less is more" when it comes to preps, pastes, and seals. That's why I love the moldable wafers!

I was very lucky to have a good stoma nurse who also worked with me to find the best position for my stoma. Mine is about 2 inches to the right of and 4 inches down from my belly button so it's nice and low. This means that I have to wear my bag at an angle, but I like it that way anyway as it helps spread the load and stops me from feeling lopsided.

It may have been a long road for me (and sometimes I'm still travelling) but like Jason says, in the end it is 100% better than the life I had before Wee Willie!

Shell

I'm starting to lean in the direction that the hot water - whether it be hot tub, hot bath, or long hot shower - is one of the keys to happiness with an ileo.

I'm also thinking a different kind of apliance might be better for me. When you're a small person, anything bulkly seems so much more so. In otherwords, I think I should try an appliance without the raised ridge/snap part.

Shell - thanks for your feedback (I was really hoping you would jump on this thread). Less is most definitely better. There's a company out there called Cymed that makes a slim drainable product.

That's part of what I'm struggling with . . . I like the cloth closed end bag. I hated the clip and not feeling like the stoma was getting clean. So I switched to the closed end bag. I also like how its soft and you can't see through it. I can't seem to find a product that is a closed end pouch but doesn't have that plastic flange part sticking up.

The other thing I hate is having to change the appliance because my skin is still nasty red and taking off the appliance is torture. Part of what makes me uncomfortable is the tape and flange pulling on my skin. I wish I could just be tougher.

I really appreciate the responses thus far and hope more people comment on their success stories. It extrememly helpful to newies and those of us that have been around. I actually appear to be a very recent log-on but I've been coming to this site since about 1999 or so.

- Cat

Cat,

I too am a small person, but don't have a choice on a lower profile appliance as I need convexity. Do you realize that if you want a closed end bag you'll need to stay in a 2 piece system?

Convatec has the Esteem Synergy system that uses adhesive to hold the two pieces together which makes it lower profile - didn't work well for me but I think others have tried it.

I used the Cymed Micro skin product and loved it in concept, but the clear tape on the outer edges of the wafer was very irritating to my skin. Also, they don't make a convex product. I found the overall adhesive on the product not strong enough to survive my output more than 1-2 days.

So, here are my thoughts...mental state is key as others have said. I wear what I want and do what I want and if someone happens to see a bump under my clothes, I really don't care. I'm too busy living my life to think about it.

I take a shower with the bag off every 3 days and change my appliance. I swim and hot tub any chance I get (not often living in New England, but every day when we travel). I keep my supplies to the bare minimum - no skin prep, no adhesive remover unless absolutely necessary, no extras at all - wafer, Eakin, stomahesive powder and bag.

I think the biggest obstacle is realizing that you as the person with the ostomy are thinking about it more than anyone else ever will. Once you get yourself busy enough doing the things you enjoy, you'll start to forget some of the other stuff.

All that said, if you are several months post op and still feeling a lot of pulling, a call to the ET nurse is probably in order just to be sure all is well.

Hi Cat,
I would say that if you dread changing your bag because of 'nasty red' skin then maybe you need to change your system/products. I actually look forward to bag change day because it means I get to be 'free' in the shower and the feeling of water on the skin around my stoma is heaven. My skin was really red and painful when I first got my ileo too, but that was because I wasn't getting the seal tight enough around my stoma so there was minor leaking. I think once you don't dread dealing with things it may be a weight off your shoulders. Have you tried lots of different systems/samples/barriers?
I know what you mean about the pinching and pulling around your stoma site. I get that sharp pinch/***** from a lot of different things. Even if I'm only going for a walk I'll start to get the stabbing after a while.
How come you take off your bag and wipe the stoma? We don't actually have any feeling in the stoma, and if you can feel irritation it must be on the surrounding skin, which maybe means there's leaking. I am hyper aware sometimes of my stoma when it's 'working', but it doesn't hurt.
I know you'll figure everything out eventually, it's just taking some time, and it is a big adjustment. I hope you find some answers soon

i wonder what those stars *** are for. lol. i thought i just wrote 'pulling' or something....very racy.

I'm guessing you wrote another 'P' word - p-rick which might be 'racy' in some circles....

kathy

Kathy, you're right! That's the word. I guess that's not a good describing word. Hee hee. Oops.

Cat,

I am a Jason-ite myself, though nowhere as Zen as he is.

I had skin issues, valleys and clefts in my abs, and sometimes 2+ changes a day. (I had a Jpouch and had 5 suergies, although spread over 7 yeasr not in a row like Jason) Now, all things considered, I am more comfortable compared
to 2 months ago.
I want/ed a low-profile pouch under a suit and when playing/coaching sports.

Bear with me as you read through the below..
I tried Jason PAs' steps/method-excellent,
My stoma/abdomen is a minefield, stoma is slightly above skin and scar tissue is like an upended cereal bowl.
I now use karaya powder, then cement (wish Smith & Nephew was still sold, NU-Hope was NO_HOPE-failed badly; now using Perma-type cement-works GREAT!!), then Eakins seal, then
a Hollister Flange (i like pre-cut/convax)
and
here is the interesting trial and error part:
A Convatec pouch, covered/"fabric' both sides, with filter, velcro like closure closure for drainage-it is pretty flat and flexible unlike clips which dug into my thigh.
Hollister convex/fabric flange stays on longer for me, is pretty flat, & Convatec pouches are very low profile (their flanges however are not-at least for me). (I mixed some other brands-this was best).
The reason for choosing the Filter Convatec pouches is they 'snap' on Holister flanges like they were made for it-if concerned-dab a bit of cement.
I use 7/8 hole-Hollister and 'smallest opening' on Convatec and it has worked well for me.

The one piece was ok but for extended wear like 2 piece ( can use smaller pouch for intimacy with my wife) and just change pouch if 'it' splashes on fabric or starts to smell.

I coach my son's Midget teams and work out every day so I get sweaty, etc. My honest average is 4 days (longest was 6 days-could have been longer-got concerned so changed it).

As Jason said-once you 'accept' you have it, you are ahead of the game.
That however is a different challenge for each of us
-I had 2-3 weeks of 'woe-is me', Dr so & so (stinks)and this 'should have happened to that (mean) guy I know', etc.
Life vastly improves when you get past that stage.

Good luck!

Jason,

That's good that you are confident and happy about your ileo. When I had mine (mostly those hard pre-teen ages ) I was sooooo unconfident and paranoid- what if people knew?? I was constantly checking to make sure the stoma stitched to my stomach along with the wafer and ostomy bag were tucked well under my pants and shirt and made sure no one touched anywhere near my stomach. None of my friends knew. Nope, none. I kept it a secret all them years.

But now, I see that was silly to be ashamed of. It's nothing to be ashamed of, it's something to be proud of, and if have to resort back to an ostomy, I would not mind at all. But of course, I'm still keeping my fingers crossed on this whole J-pouch thing comming up.

I'm not trying to be nosey Jason, but was it your choice to turn back to a perm ileo? Or did your pouch just 'not work out'?



♥Winnie♥

I know it would be harder for me to have illeo if I was younger, not married and so on... But, I know me and in time I would be how I am.
As for why I went to a end illeo - it was my call. I had pouchitis for 8 months straight (1000mg cipro and so on) constant cuff bleeding and dysplasia and so on. It wasnt worth losing any more time in my life when I had no issues with the loop. Once I made that decision and told the Dr., I felt like the whole world had been lifted off me - felt like a new man.... And thank God, Life is so great and I dont give my illeo a second look, just go on with my everyday stuff!
I hope your pouch works out for you!!!

I love your attitude, Jason. You made the right decision - your decision. I agree with you completely.

So glad life is going great for you, keep up that positive attitude!



♥Winnie♥

Thanks You Big Hugs and enjoy life!