New to ileostomy - seeking advice/friends/help/sanity lol

Hi,  

Thanks for that. I will get back to teaching and being head of Faculty lol.  

I am just not confident enough yet to shower without a bag, would feel disgusting.  

I have begun to order a few samples and will ask nurses about an Eakins seal. Just dreading my output during chemo :-(.  

Thanks so much for your advice, take care

Hi Miss Megan,

Thank you for replying.  

Inahbent had had a full-on leak for a while at least (although it sounds like this will change through chemo :-( lol), but I do get stuff sneaking under my flange around my stoma, it even melts the flange, toxic stuff even before chemo haha. I have requested samples so will have a look at some different bags. I take loperamide already, 2 tablets 4 times a day, and it makes no bloody difference! I am going to ask about the Eakins seal, but 2-piece bags never been mentioned to me.  

A little detour? Feels like a massive one right now lol. I am glad I appear to have a great, positive attitude because I am not so sure I do! I used to have but this crappy thing has been tough. Will get there though. Dreaded chemo starts in about 10 days :-S.  

Thanks again

Response to Ed's comments: Ed, as an Ontario resident, I'm hoping you've been enrolled with Ontario's Ministry of Health's ADP (Assistive Devices Program), as you will be reimbursed for your purchases.

Hi Scord,

I just recently read your posts, back from May to present, and I join with everyone else who has answered to be patient, use trial and error, to see what works for you, and to reach out to any of us for suggestions when you have problems. But you've already done that, so you're ahead of the game.

My name is Marsha and I've had my ileostomy since I was 15, and that was more than 50 years ago.

It was also the dark ages of ostomy supplies, and I spent many years testing new products for supply companies. Back then, we used rubber or plastic, reusable wafers, and an "ostomy cement" that was brushed on the wafer and the skin, and then had to dry...or one could get a serious burn. The pouches were also reusable and were made of rubber....black, heavy, and held an odor.

I remember the first time I tried a disposable wafer and pouch, and felt like I was wearing "nothing". I was so moved, I actually cried. And that's more than 25 years ago....So much more is available these days, so if you're not happy or comfortable with one product, write to another company and ask to try something else.

Like you, I need to use a convex wafer because the underside of my stoma is almost flush to the skin. I use a two-piece because it's easier to get a good fit around the stoma before putting on the pouch.

I use the Convatec two-piece "Durahesive" (convex wafer) system....with a drainable pouch. Sealed pouches fill up too quickly and need to be changed! I prefer living with the flexibility of being able to "empty" as needed.

Would one want to have a plugged-up rectum!

A few years ago, I started to use Convatec's moldable wafer, which does not have to be cut to size. You just stretch it out with your fingers, place it around the stoma, and it molds itself, much like a sleeve or "turtle neck". I usually spray some stomahesive powder around the stoma to fill in any gaps. I get at least a week's wear and have to remember to change on a specific day. I rarely have leaks....but if I do, I just change as needed.

Re: washing.... I NEVER use soap on the skin underneath the wafer. And that's the only reason I don't shower without the pouch on. Most soaps leave a residue...that can impede adherence. The skin under the wafer needs to "toughen" and not soften....so I don't like to expose the skin to lotions or softeners that are in soaps and body washes.

I use very hot water....on the skin, and then very cold, to close the pores. I then use a skin prep wipe to prepare the skin before putting on the wafer.

I avoid "washing" the stoma (as someone suggested) since water is all that it needs. The stoma is "Intestine" and we wouldn't wash out the rectum....or for that matter, wipe down the inside of our mouths.

Basically....since I was a kid, when I developed all my routines.....I was all for KISS...Keep it Simple Stupid.

I traveled, "lite", and managed to have a very active life (sleep away camp, hiking, camping, dating, sleepovers, etc.) before getting married and having children.

Through the years, I've worked in many different situations but went back to college as an adult and became a teacher. Have no fear.....you will be able to teach again. It is always tricky, as a teacher, to be able to get out of the classroom to use the bathroom. I never made special arrangements, but generally speaking, another teacher or an aide would watch my class if I had to go out when it wasn't lunch or a free period. I did tend to eat less in the mornings....to control some of the output. It's never been an issue.

I've read posts that a lot of people have gas issues. Alas, so do I. Many attribute it to food....but it can also be due to anxiety or swallowing air, or in my case, sleep apnea. I use a CPAP machine, and when all is working well, I have less gas output...Sigh... sometimes, I never know what is causing what, so I just "burp" (open the bottom spout and let out the air) the pouch. It does stink up the room, but since I live alone, I don't worry about it. If it's really a nature call, then I use get up and go to the bathroom....and let the air out there. I don't spend much time worrying about it...I just try to adapt to the changes as I've gotten older...

I'll look for updates.... and hope to hear that you're doing well.

BTW, I was on chemo for a year, about 13 years ago, and none of the chemicals affected the health of my stoma....But again, everyone is different, and I basically check for any abnormalities....when I change my appliance. Small irritations, some occasional bleeding from the stoma site, is not unusual, and generally heals quickly. If not, consult your doctor.

Best wishes to you for a very happy and healthier New Year

Marsha

Immarsh proves a very important point, use common sense and don't let a stoma define who you are.

I realize I have been extremely lucky, although a bit upset since my radiation oncologist told me: nothing personal but he doesn't want to see me anymore, after a lengthy association you sort of hate to lose contact. Then my chemo oncologist who moved me up to every four months tells me she only wants to see me twice a year, since there is no reason to see me more often, ergo I am cancer-free.

My experience with chemo and radiation has been totally "useless" meaning no side effects a few after-effects. I have to pay for supplies and as such I keep experimenting with different methodologies. I am currently on my 8th day on the same sample Convatec flange and bag with no ring or paste and no leaks, the only thing I paid for is the four strips of medical tape to provide extra adhesion.

I don't hide the fact that I have a stoma, and will make jokes about having one.

"It is biologically incorrect to call me an a..hole, even though I may be one." And "I can go to the bathroom standing up".

You can check my profile for more information.

Good luck,

Ed Maste

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