Haha, complain away Richard, I feel your blah. I don't like changing mine and yet I am SO happy once it's changed. It feels good and I know I don't have to do it for a few days. My trepidation stems from wondering if I'm going to have to fight an active stoma. I also like to wake up, stumble into the kitchen, make a cup of tea and read the paper. Changing my ostomy bag first thing before all THAT wakes up is not fun and not how I would wake up if I had my choice. 

Yep.  I try not to eat 12 hours prior to a change.  At least wait an hour in the morning before I start.  Which means no coffee!  Arghhh.  And you go in hoping it won't  act up and it doesn't the whole time I'm showering.  It waits in silence until I sit to air my skin for a few minutes before applying a new wafer... Like today... And then gets a bit active.  Sooo... I have to get up with limited airtime and put a wafer and bag on because it won't behave.  Sometimes I can sit there for ten or fifteen minutes and air it out.  Sometimes not.  

Definitely no coffee before.  I found it limes to shoot out, 

Lol. 

Wow an hour, that is a lot of time. I am getting ready to change right now. But it rarely takes more than 5 minutes plus shower. I clean and shave the area in the shower, I have everything laid out and ready to go when I get out of the shower.  Mornings are typically quiet but also I have a fairly quiet period in the late evening.  Both work with times I can shower, so not a big deal for me. I have been at it for a few years now.  I keep it pretty simple, I dont have skin issues or other problems. I  certainly dont enjoy  the process  but as was said I do like the feel of a new pouch.  Twice a week for me also, its just routine. 

I have to wait in the morning after I wake for it to get done being active.  But once I take it off and have my shower and shave done I want it to air out for as long as I can get away with it.  But once I put one on I put a heating pad on for ten minutes to get a good stick.  Seems to work.  

If I had to change in five minutes I could.  But I don't.  I will get better at it.  

Biggest thing is I want to make sure it's not active when I get out of the shower and just sit and let it air out as long as I can.  I have sat for 20 minutes and nothing happened.  I don't have skin issues.  It's red when I take it off but that goes away quickly.  Ya.  An hour.  Minimum.  I just don't get in a hurry as I have time before work.  I do like having a fresh wafer on.  Of course. 

Good to hear others opinions.  I have only been at it eight months. I'm sure I will get it down.  I am pretty thorough. 

Richard. 

Hmm, I do the exact opposite: I move through the routine very quickly. I have everything ready, too, so I can get it all done post shower in five minutes tops. I need to get right to my hair products and makeup ;-)

I do have everything ready to go.  But I guess my problem is I want to air it out awhile.  But even if I don't it still takes awhile.  I have never been one to hang around the bathroom getting ready for anything.  I guess I better look at what I am doing.  I just want to leave it off awhile.  It may be because it's not something I look forward to doing.  I don't mind wearing it.  No problem with that at all. It's made me better so I am grateful for that so it's not something I find disgusting.  It's like shaving.  Just another thing to do.  Lol. 

Richard, it's so interesting that your stoma behaves long enough for you to air everything out. I wish mine did.  I rush through because the window period for good behavior is, or at least was, about twenty minutes including my shower. I just started a preventative migraine med that causes diarrhea and my stoma is  weeping more frequently so bag changing is becoming a little more challenging and that window period even slimmer.

Hi guys! 

Im 6 mos in now and change 2x wkly unless an unlikely leak happens. It only takes about 15min with shower. I have everything ready on the counter then after shower it's done! Not a fan of changing but do like a clean appliance too. Still adjusting to it all. 

I could change it in fifteen minutes but as I said I wait an hour after I get up. I work afternoons so I don't get up till 10 30 am.  About eleven fifteen I start.  I wait to make sure it's not busy.  So I go in empty it for the last time and shave,  take the appliance off,  get in the shower and of course clean up well,  especially where everything sticks and I have everything I need in the shower and everything on the counter when I get out that I need.  Wafer is warming up by a heater on the floor.  Anyways by the time I get my hair dryed and such I go out with a neked stoma if it's behaving and sit on the couch for awhile. With a wash cloth of course.  I don't trust it that much.  But even after all that it's noon before I sit down.  Surprises me when I see the time.  I don't like being in there that long. 

Lambie,  I don't eat anything for 12 hours before I do this.  Or when I get up.  I tried coffee before.  But.. That just made it into a fountain.  Lol. I like my coffee.  I hate waiting to get a bag on to wear it.   It's the not eating for that long that gives me the time to air out.  Doesn't work every time but it works. 

Once I have it aired out it only really takes me a few minutes to put one.  

Definitely not complaining .  Just explaining.  Because it is what it is.  I am fortunate my skin seems to be handling this as well as I is.  

Richard 

You've got a good routine, Fosty! I love the feel of a clean appliance, too. Richard, do you air out your skin to keep it in good shape? Could using a hair dryer cut down on that time? I wake UP thinking of my coffee or tea! And having had an eating disorder in my early twenties and then UC and a cranky jpouch in my forties, nothing will tell me not to eat for extended periods of time ever again - I just couldn't intentionally not eat for twelve hours. I keep two squares of toilet paper ready for when my shower ends. As soon as I turn the water off, I stick them over my stoma onto my wet skin so they stick. Then I dry off (with a red towel - stoma sometimes bleeds a tiny bit.) So if anything weeps, the toilet paper catches it at least long enough for me to get out of the shower and be mostly dry. Then I hang up the towel and have two hands to work with and move quickly, dabbing, blow drying until I know my skin is dry enough to put the ring in place. By then I'm STARVING! Such a delicate procedure!

I don't work anymore - retired I guess lol. So I change mid morning after coffee and breakfast. I also shower with appliance on as well. Then remove after shower and clean the area well. My skin is healing nicely and only red and sore if I try a new type of appliance. I have what works well now for me. I don't use dryers just dry area put on everything and lie on my bed with hand over top for about 10 min.  All good after that (: 

Also wanted to ask you guys if you had joined or researched an ostomy support group. I'm considering it just to get the support in my community. Thoughts? 

Well, Fosty, I went to two different support groups.  The first I attended right before my surgery and they said, "Wow, we've never had anyone with a jpouch much less a jpouch removed with perm ileo!" I guess they were all simple colon removals/ostomies. I felt a little like an alien creature, but they were really nice, seemed to have good speakers, etc.. Also, I was the only one squirming in my seat from my cranky jpouch; seeing them sit quietly, listen, ask questions, contribute info and, most of all, eat the goodies that someone brought in sealed the deal for me in terms of being sure about my decision to go ahead with the surgery. The only problem was that they were located over an hour away and during rush hour. The other group I tried was made up of all much older folks with very different life stage concerns. At that point I hoped that online support was enough for me and it has been, thanks to all of you kind folks!

Hello all. 

Today was change day. 

Took an hour.  Really. 

I guess because I do so much else that doesn't involve the change it just takes that long. 

I shave... Peel it off.  Jump in the shower.  Clean the area very well.  I do not shower everyday.  When I get home from work I usually use the tub.  I just don't want to get the wafer wet.  I know it doesn't affect it's adhesion.  But it makes the outer tape stiff like dried paper.  It's a Hollister wafer.  I work outside in TX! But I am fortunate that I don't really stink.  My wife doesn't know how I don't stink after working outside.  But I guess it's just my body chemistry.  I don't have alot of body hair.  Almost nonexistent.  

But I do wash up the important parts in the tub. 

I only shower with the appliance off.  I have tried many methods and they all leak and get things all wet.  Yes I have used the cling wrap with water proof tape.  Works to an extent. 

Anyways.  An hour is not bad.  For me.  If I were to just change things out and not do anything else I could get it done in 15 minutes. 

Just throwing this out there. 

Thanks for listening. 

Richard. 

Lambie. 

I have never been to a support group.  Sounds like a weird experience. 

Very weird, mostly because I walked away feeling no better than I did when I walked in. The second group actually made me feel worse. I guess I went because I thought I owed it to myself to try it. Turns out I can navigate this strange world just fine without one....

I wish I could get by with bi-weekly changes. My surgeon placed it where I wanted, which is to the left of my bellybutton down a few inches. My abdomen is fat with zero muscle tone. Up around my waist level would have driven me crazy. 

That said I got diverted last fall and this spring I had my j-pouch removed and she upgraded my ileostomy. I had a hernia under it....never heard of that but we are all trailblazers here. 

After 10 months I am still changing around every other day, per my local Stoma nurse.  I quit trying to time my showers to go with changing it. I was going overboard covering it and protecting it from the water, if showering without changing it, at the same time. What a waste of time. I shower with it on and it doesn't bother it. I blow dry it with the low or cool setting of the hairdryer.  Mine has always been most active after dinner/supper.

I have 2 different kinds, a one piece Hollister and a 2 piece Convatec. I stick the bag onto the wafer of the Convatec before putting it on so it's like a one piece. I've had so much practice that I can put it on quickly. 5 minutes is doable. You might need more practice, like I have because of changing it so much.

I wear them longer if all looks a okay. I just quit with all of the things, like rings, putty, paste and so on under the wafer.  I'd rather change it more often and my skin is doing better than when I was putting all of that stuff on. 

I am glad I had the surgery done as I've spent the Last 2 + months helping to take care of my dad. He was in the hospital telling me I was sicker than he was.  I was fortunate to have my father for 60 years. Now dad was a real problem. This bag, not so much anymore. 

Hi Everyone

I am now just short of 4 months post jpouch reversal and I have a few issues. But firstly, let me say that my bag change rarely takes more than 15 mins, with my best being in and out in under 5. To achieve this I prepare everything first:

1) Remove the plastic backing from the appliance and seal the open end

2) Prepare the Adhesive remover wipe

3) Prepare the Skin barrier wipe

4) Ready with 2 cleansing wet wipes

5) Open my Stoma Powder (as I have skin lesion issues under the stoma)

I then remove the old bag (no that is not a reference to my wife actually I called it Bill-see below). I wipe the excess output from Mal (my stoma) and then all the skin around Mal until it is clean. I then use the adhesive remover to remove the edges where the Bill has stuck, and sometimes breaks up, and from around Mal as well. I take the barrier film wipe, apply it liberally to the skin lesion below Mal, and then around the area where the Bill will stick. I then have to apply the stoma powder to the lesion to dry the area, otherwise Bill wont stick there. After this, I simply take Bill and stick him over Mal.

When that is all that there is, it takes less than five minutes, but in high output times, I am continually removing the output until I get a break to do the rest.

Interestingly, my stoma nurse said that until I get the skin thing sorted I should change everyday, sometimes twice if necessary. She also suggested to not use a wafer so that I can get the convexity under the stoma as much as possible. So far I have only had to change twice in a day on one occasion, but I would be snookered if I had to do it everyday, simply because in Australia, we have a limited supply of goodies we can order each month under the government support scheme. 30 bags a month is my limit, so I would prefer to stretch the change out to at least 2 days to build up a supply, to cover the 2 a day scenarios.

Anyway, that's my 2 cents worth... and for those wondering...

Mal - our current Prime Minister - always spurting SH*T

Bill - the Leader of the Opposition - always full of SH*T

I also named by JPouch (still intact but disconnected) as Tony, the former Prime Minister - still has output but nothing of substance!

If anyone is still reading, I would love to hear if you have had any experience with peristomal skin lesions. My stoma aperture points to around 20 to the hour and down below the skin level. As such all output is directly on to that part of the skin. It also means there is a place under the convex opening of the bag where output always tracks. I am resigned to the fact that I will always have issues, but I would love to hear anyone else's experiences, solutions, rants and raves....

My surgeon said he could probably fix this, but it would be a major operation, similar to the reversal op, and there is a chance he wont be able to improve the situation.

Still, you have to play the hand you are dealt, so I am doing my best

Cheers to one and all!!

Richard

I know most of what you are saying. I only get 20 per month and have double change days too. I am to change mine everywhere day or when it burns. Every now and then I try to stretch it 3 days and get into trouble.  I am 6 months out and still seeing the stoma/wound care NP. There is still a tiny opening in my not yet Barbie Butt too.

I have a bad place too. I call it aa bad spot that has never fully healed too. I go through your same routine except I wash the skin and stoma with warm water and sometimes the soap. I bought a dozen white wash clothes before my surgery. These are what I use and I wash them and don't mess up my regular onest. I also use powder before barrier wipes. I use a pump spray barrier instead of the wipe and that is how the stoma nurses at the Mayo Clinic and here have said. The powder might be making things worse for you. I get the spray from Amazon.com and pay for it out of pocket. It isn't expensive.

I also roll up half of an Adapt ring into a worm like shape and place it on the wafer before putting the wafer on. I tried doing it without, as you are doing but it made things worse. 

I have times that it is almost healed up to have it get worse. My Stoma leans towards that area too but is better since it was revised during this last surgery. I tried just diverting from my j-pouch, a year ago, to an ileostomy.  That stoma was awful. It was like I started over from scratch with this new one.

I have named mine "bastard" as it feels better when I say the bastard is causing my skin to sting and so on.

I have the change time down like you do. I remember 6 hours up with it spewing in the beginning so am pleased.  I use a contest once piece Hollister appliance. The Convatec one I was using is not as flexible. You can tell this by holding it and bending it by squeezing it from 2 sides of it. The Convatec one is not very flexible as the Hollister. That was an exercise my nurse had me do. 

When I get IV fluids my output is more watery. 3 days ago I had 2 bags of IV fluids and still don't have it back to a good consistency.  I take 8 Loperamide, imodium, plus 2 servings of Metamucil mixed in applesauce everyday. The Mayo nurses told me to thi m know of it as the lopermide is the appetizer and Metamucil is the dessert. That'said the best times to coordinate them so they work the best.

I feel for you and it feels like I need to change mine again and it'seems not even been 24 hours, sigh. The bastard just won'the settle down.

Regarding your stoma, I had a similar problem when my j pouch was disconnected. The tension from the remaining pouch did not allow a "good" stoma. Mine was virtually fush, I had leaks and seal failures regularly, your situation sounds a bit worse than mine was. I could have lived with it, as it sounds like you are doing but I had increasing and difficult to control excretions from what you call "Tony" and so Tony had to go and when Tony was relegated to the dust bin of history the stoma was fixed and that took care of all my issues. I  now change every 3 or 4 days with few issues.

TE Marie posted:

I know most of what you are saying. I only get 20 per month and have double change days too. I am to change mine everywhere day or when it burns. Every now and then I try to stretch it 3 days and get into trouble.  I am 6 months out and still seeing the stoma/wound care NP. There is still a tiny opening in my not yet Barbie Butt too.

I have a bad place too. I call it aa bad spot that has never fully healed too. I go through your same routine except I wash the skin and stoma with warm water and sometimes the soap. I bought a dozen white wash clothes before my surgery. These are what I use and I wash them and don't mess up my regular onest. I also use powder before barrier wipes. I use a pump spray barrier instead of the wipe and that is how the stoma nurses at the Mayo Clinic and here have said. The powder might be making things worse for you. I get the spray from Amazon.com and pay for it out of pocket. It isn't expensive.

I also roll up half of an Adapt ring into a worm like shape and place it on the wafer before putting the wafer on. I tried doing it without, as you are doing but it made things worse. 

I have times that it is almost healed up to have it get worse. My Stoma leans towards that area too but is better since it was revised during this last surgery. I tried just diverting from my j-pouch, a year ago, to an ileostomy.  That stoma was awful. It was like I started over from scratch with this new one.

I have named mine "bastard" as it feels better when I say the bastard is causing my skin to sting and so on.

I have the change time down like you do. I remember 6 hours up with it spewing in the beginning so am pleased.  I use a contest once piece Hollister appliance. The Convatec one I was using is not as flexible. You can tell this by holding it and bending it by squeezing it from 2 sides of it. The Convatec one is not very flexible as the Hollister. That was an exercise my nurse had me do. 

When I get IV fluids my output is more watery. 3 days ago I had 2 bags of IV fluids and still don't have it back to a good consistency.  I take 8 Loperamide, imodium, plus 2 servings of Metamucil mixed in applesauce everyday. The Mayo nurses told me to thi m know of it as the lopermide is the appetizer and Metamucil is the dessert. That'said the best times to coordinate them so they work the best.

I feel for you and it feels like I need to change mine again and it'seems not even been 24 hours, sigh. The bastard just won'the settle down.

Hi Te Marie

thanks for your reply, and sorry if my Australian slang is not easily understood. It has been said that it is like English but.....

anyway I use a Dansac firm convex bag, the nurse reckoned that the backing plate should be firm not flexible. I also use Coloplast Brave remover wipes, 3M Cavilon barrier wipes and Hollister powder. I have just seen my stoma nurse today and she said now I should use an Adapt deep convex barrier ring, cut in half, to push the skin back to get under the stoma aperture. Sounds logical so I will give it a go. She also said my wound may have a 'thrush' type infection, but to wait and see if the barrier ring works.

I don't have any other treatment and I am on full diet, so the Imodium etc that I used to have to take is now a thing of the past. My output is quite thick 90% of the time.

thanks again

chiromancer posted:

Regarding your stoma, I had a similar problem when my j pouch was disconnected. The tension from the remaining pouch did not allow a "good" stoma. Mine was virtually fush, I had leaks and seal failures regularly, your situation sounds a bit worse than mine was. I could have lived with it, as it sounds like you are doing but I had increasing and difficult to control excretions from what you call "Tony" and so Tony had to go and when Tony was relegated to the dust bin of history the stoma was fixed and that took care of all my issues. I  now change every 3 or 4 days with few issues.

 

Hey Chiromancer,

thanks for your reply.

Tony is here to stay, unless he causes life threatening issues. That is because he has adhered himself to some vital bits down there, and the doc said it was too risky to remove him. A bit of a bummer (pun intended) as I really wanted to see the end of him (oh really... That's even worse!).

Still, It could have been worse for me, at least I am still independent and working!

thanks again!

Hi Richard, 

I had some typos!  Sorry, I  change every other day. I tried the deep convex barrier rings. I call them "lips". I used around 2/3 rds of one. These were prescribed by a Mayo Stoma nurse. I have a flabby abdomen and the more rigid wafers don't work as well as the ones that bend with me more. 

I use the 3M Cavilon too it is just in the pump spray form of delivery. I have used a different powder for what sounds like the thrush your nurse is talking about. You apply it the same way as the stoma powder. 

I don6know why I can't get my output thicker on it'so own. I eat a diet that doesn't vary much and the output changes for no reason. I have had IV fluids about monthly since my removal surgery. Last Friday I had 2 bags via  IV and that really affects my output big time. I up the Metamucil and am lost to figure out how to stay hydrated. My Internist has referred me to a cardiologist as my BP decreases too low while my heart beats too fast. This is when I  stand that it goes wacky. I am using electrolyte supplements,  which he has suggested, and when tested they are fine but I still need the IV fluids due to my low BP. 

That is totally off your subject. Is anyone else here having such a difficult time since j-pouch Removal? I have other health problems and am disabled.  Managing my GI system et al is a full-time job. It is depressing as well.   

Thanks for reading. 

Paulette

Te Marie

I have a very high output permanent ileostomy and used to have a terrible time with dehydration and would sometimes end up in the ER weekly for fluids. I was up to 16 Immodium daily at one point, and it didn't do a thing Lol! Have you tried using the World Health Organization's recipe for Oral Rehydration Solution? I saw a GI Nutrition Specialist last year at Cleveland Clinic, and she was very helpful. A lot of tips for what to eat and what not to eat. There are a lot of variations for the ORS recipe, but the one I like the best: I take a 32 oz. bottle of G2 and pour 16 oz. of it into another 32 oz. container. Then I add 16 oz. of water to each container. Then add 1Tbsp. sugar to each and 1/2 to 3/4 tsp. salt to each. Put the lids back on and you've got your 1,000 mL of daily ORS to drink!! There is also a product called Drip Drop that is very tasty and comes in single serve packets that you can just put into a bottle of water. But my method is way cheaper and the easiest way for me to get the 64 oz. in. If you're interested in learning more about what else the Doctor told me, do a Google search on "Sodium Glucose Co-Transporters." It's very interesting stuff and makes a lot of sense. My dehydration used to get so bad that my stoma would hide away into my abdomen like a turtle does with its head, and then I would get horrible obstructions that required hospitalizations. Let me know if you have any more ques - happy to help!

Hello all. 

Well.  Now that I'm into it a ways I just take maybe a half hour.  That's a shave and a shower with it off.  I am not having any skin issues.  Kinda weird to say.  Now.  But I feel better just getting it back on and going in with my day.  I cannot believe I am even saying that! But it's true.  I had one accident while leaving it off.  It gives you no warning.  Soooo.  Best just to put it on. 

Richard. 

Great progress Richard woohoo!! How come you don't just shower with the appliance on and change it after the shower? 

I have all sorts of hydrating fluid additives etc. The WHO like packets off of amazon.com and another liquid concentrate work well. NUUN tablets are fantastic. When I get the IV fluid my electrolytes always test on the low side of normal so you can need IV fluids and normal range electrolytes. 

I bought a stoma cup.  I put it on with an ostomy belt. This is placed over the stoma to catch any output that might happen while getting your appliance ready. I put toilet paper or part of a paper towel in the cup. I did a search for stoma cup online to purchase it. It looks like a 2/3 measuring cup and is hard plastic.  

I like to wash it without it on.  It just feels good and it's a safe place to be if it starts acting up.  I clean all the skin where the barrier sticks so by the time I get out and dried off all I have to do is apply it.  Convetec has a tape around it that if it gets wet it's just not the same.  Best just to shower with it off.  I'm comfortable with it. 

Richard.