Hey Chelly,  sorry to hear that they haven't been successful in revising your stoma , 

When i do my changes i do them when im lying down and it makes it easier for me to get a better seal ,that might help ,have you tried the soft convex wafers ? they helped me a lot when my stoma went flat for a while and combined with a support belt helped a lot ,

Really hoping you will get some relief soon and sending prayers and positive thoughts across the ocean to you ,

Maybe someone else has some better advice but don't give up hope because its positive energy and thoughts that help us through these horrible times ,

Tony

https://photos.app.goo.gl/QBR9ZMmQuycoJkq86

When i look at sunsets like the one above I feel better 

@tony-h 

Hi,

Please telll me how you are able to change while lying down.  I've thought of this many times but then I can't seee if im getting the pouch on right over this stoma. When I'm lying flat everything looks normal but when I stand I get this indented donut like thing going on. 

I've often thought if I could just lay down I'd get a better seal. The picture of the sunset looks beautiful! Thank you for sharing that. 

@chelly I think Tony’s idea of lying down is a good one. What about holding a small mirror so you can see what you’re doing, while applying your flange with your other hand? When I had my surgery, I got a starter pack from the hospital, and there was a small mirror included. I’ve never used it to put on my appliance, but if it was in the starter pack, I assume that lots of people do. I also wear a light convex flange; Tony’s right - it might be helpful for you. Maybe see if your brand will send you a sample. Good luck, Chelly.

 Laurie 

@tigerlily 

Hi,

I've thought about a mirror but I would be laying down which would mean I'd have to be holding it with one hand snd trying to get the bag on with the other. The soft convexity won't work because the stoma is flat and will not stick out far enough. I've been using hard convex so that it pushes down on the area enough to TRY to make it stick out. It seems to be that the stoma has no pull in it as if its stuck where it is and nothing seems to push it out. This has been ever since my first revision. Seeing the colorectal surgeon in a couple days. Hope he can help me. 

Hey Chelly, I use a two piece which makes it a bit easier , i don't lie down flat , but i half sit up and makes it easy to see what im doing ,

I also use flange extenders to make it extra secure and use the heat from the  palm of my hand over it for at least 10minutes to help it stick .

@chelly  ... I am wondering about few things here... first, I have done a fair bit of laying down changes and really, I don't find them that much different then sitting or standing but I dont have a,wacky result you do either, so I'm sure you'll give it a good try. I have a few tips from when I did them and when  do them in hospital. Some things I still do. I think I've had maybe 3 leaks max in the last few years or so.

I first used a mirror after our team leader here, Eric, said he used one to check the  underside of the stoma for skin quality. Let's face it, our skin care is HUGE to most of us!  Get your supplies ready on a tray, or designated cookie sheet.  Prop yourself up against some pillows but keep your back area flat on the surface of the bed under your stoma area...or..., bcuz my stoma is a leaky girl, be prepared with all you might need just incase.  I'd see if the red cross has a hospital food bed table you can use, beg, borrow or... no, I didn't say steal.

I'll go into a bit of detail for the possibiliry of any newbie reading this if it helps, grab a cup of coffee or tea, lol! 

Have a trash bag &all supplies handy.  Remove the pouch and clean the skin under it ever so thoroughly then use the barrier spray if you have it or at least the wipes. I wipe or wash off the skin after the adhesive remove spray/wipes. Shake open the folded cloth & apply it.  They seem to dry fairly quick. But I much prefer the spray in quick shots about 3 or 4 dependung on how much shoots out, to cover my skin under the wafer and then spray some extra on the cloth and dab it around your stoma on the skin.  Fan the area dry or use the blow dryer.  Then, I first warm the wafer with a blow dryer or if no dryer, I tuck the pouch with all plastics on it against my skin to warm the wafer helps. Do not make it hot, I heat it until the wafer turns glossy and is much more flexible. A cheap hair dryer works best, remove the plastic backing but not to the tapes.  Do not go slow putting it on.  I FOLD the wafer away from me, right to the bottom edge of the hole for my stoma.  Try it sideways for a good visual if need be, like an open book. Then, I place that bottom or side edge of the hole I cut against my skin. I do this very lightly at first and I sort of tip the edge to touch lightly where it's going to go, then if it's close enough to myvstoma, I stick it on  using a tightly rolled up square of toilet tissue folded into triangles until it rolled tightly in a twist it and have it ready in my teeth to make sure my stoma doesn't touch the wafer of the pouch when I stick my stoma into her bag. Then adhere it to my body holding it in place with 2 things, forst, thw heat of my gand for about 3 min. then I use the lid from the Skin Barrier or Adhesive Remover spray can to fit over my stoma, and bcuz it's still a bit big, I place it on the outside of my pouch, over the plastic and lay it just about on the edge of the hole I cute for my stoma and apply direct pressure there for a few minutes as well. My hand heat should have my index finger on the bottom edge of the hole I cut. This is to make sure that the lower edge hopefully gets the seal to my skin it needs, which is where fluids/ output runs the most.  Then, after pouch changes and adding on the C-shaped wafer extenders, I have a WARM, not hot water bottle ready wrapped in a towel, I place on a washcloth, over my pouch over my stoma area and I rest for a good 30 min. but never less then 15 or 20.  I remove the water bottle and then I allow my pouch to cool under the blankets/towel to room temp. before getting up.  Your hot water bottle rest time, should you choose to try this,  may vary depending on humidity.   IF... you see humidity building in your pouch it may build under your wafer so remove the hot water bottle & proceed to heat with your hands but allow cooling it , under a blanket or towel even before getting up. 

I totally understand about the M9!  THIS to me was my hugest issue. I WAS SURE that I stank!! Yet my dogs never paid attention to that area unless I had a leak or was coming into one.  Then it's time to change the pouch. I think I was 6 years in with my stoma before I heard about M9, till then I made my own liquid deodorant  for my pouch which did help, but it wasn't as good as M9. I'll TRY & remember how I nade it & let you know.  In the mean time save a gallon size milk jug and a bottle to transfer liquid into for dripping into your pouch. It was a recipe my son found on line.  I remember crying watching the video Eric had about M9. Just widowed, having never worked outside the home as a young wife & mother, and I worked in my home, I only got paid in hugs and kisses and I love you too, lol !! I had no contributions to old age pensions either.  At the time, there was no buying M9 then or in my future. I had Holiister send my 2 bottles of M9, sample size, I think they are 1 or 2 ounces.   On trying M9 the first time I was shocked at the difference it made for me. So, one day, I cut out some groceries and I bit the proverbial bullet and ordered my first bottle of the 8 ounce M9. I felt like I had spent all my grocery money on it. But really at the time it was around 15 or 20 bucks a bottle, it's now anywhere from 30 to 50 a bottle depending on where you find it, so believe you me,  SHOP AROUND and all over the internet to find it cheaper from pharmacies.  If buying 3 means eliminating the delivery fee, then in my mind, I've saved money on it and bough one bottle minus delivery costs. 

After one particularly hard year and not being able to afford the M9 for regular use, only using it if I left the house, and counting the 20 drops I need to go in my pouch to make one 8 oz. bottle last a month do it's job for the foods I eat, then you can be sure I count the drops. I remember a friend sent me a box of SIX  bottles!! I'll never forget her kindness & gererosity! NEVER!  NOW, I just consider ordering M9 as part of my SANITY regime.  It does make a gigantic difference! I don't just mean in odor, I mean confidence too!  Chelly, I know it can be hard, but maybe, just maybe try and find a way you can cut some expence out to use it.  It may eliminate your stink worry, and if 8t dors give yiu peace of mind then its worth the expence and doing without something else.   I placed the home made solution  in the sample bottles or the washed out stoma powder bottles bcuz they expire quickly, to have for portable reasons and I get a more accurate count of drops. 

Also, ask Hollister or Coloplast if they still have a zipper cloth type bag they can send you for your supplies. They sent me a beautiful rectangular bag a few years back & it goes great in my go bag.  I also have been sent new scissors from to time when I ask them where can I get the ones with the rounded end on them. I don't like using a computer so shopping around on these phones is my computer and with my vision issues, I can't spend long on them.  Even texting here, I takes breaks. I gave recently found a company that delivers within 3 days of ordering and delivery is free with ordering around a 100 dollars of supplies. 

Chelly, I hope some of this is helpful.  Also, are you using the l adhesive remover wipes/spray AND the skin barrier wipes/sprays and are they covered at all?  I'm sure I asked before but my memory is scrap for about 2 months after anesthetic...lol!   Ugh, the things we go through.  I'm so grateful for our community of stoma buddies here!  Thank you all for all you mean to me & I can sure tell that Chelly is just as grateful... 

@tony-hhi,

Thanks for clarifying. Yes the 2 piece would seem easier as I'm assuming your putting on the wafer first and then connecting the pouch after? 

I might try this half sitting up. I have an adjustable bed so this might work. I'll let you know. Thanks. 

@dlkfiretruck 

Hi, thank you for your very descriptive change regimen as I've picked up.a few things from it. 

Yes I'm going to try this in bed but the problem is this stoma is constantly acting up during changes lately. Even the marshmallows no longer work. 

I do use adhesive remover sometines. I can usually get it off with soap snd water on a paper towel carefully. I do not use barrier wipes any  longer as no need for them. 

I have already tried to think of a way to buy  the M9 but there's no way. Im.already purchasing things now that I need that my insurance will not cover. $200 worth of things per month.  I've racked my brains about it. If I think of a way I could probably stretch to using a bottle per month. 

My peristomal skin is in good shape because if I  feel anything getting under my barrier I change the pouch in time. 

Oh yes, convatec did send me one of those little  bags  to put supplies in just last week. 

Coloplast mio soft convexity im.allergic to the adhesive and i find that the bottom velcro closure leaks odors 

@chelly This has been such a long chain of events for you, and it's really not fair that you have to go through any of that! 

I do hope that your two surgeons will be able to come up with a plan together, as it sounds like this level of complexity would benefit from a more specific plan moving forward.

Lots of good ideas for appliance changes being given, so I hope they'll provide some relief while this gets sorted out by your doctor(s).

I hate that you have to fight with your insurance to get supplies that would really benefit you. If you have a local ostomy group, they may take donations, and could probably help provide you with extra supplies.

@veganostomy yes, it really has been a long chain of events and not an easy  fix due to mesh inside me. I saw the original colorectal surgeon today we have surgery scheduled for December.  Since i was just opened up in May. We have to wait unfortunately so I have to deal till then. Stoma nurse gave me some ideas to try with the laying down method that Tony and LK mentioned that may just work. I just need to buy some things. 

Will see the other surgeon next week. 

Yes its a shame that we have to.pay for some things . It's crazy. They cover adhesive spray but not wipes won't cover deodorant but I am.thankful for all that they do pay for. 

I heard in Isreal ostomy patients do not have to pay for supplies at all. That would be nice if it were that way everywhere . 

Posted by: @chelly

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I heard in Isreal ostomy patients do not have to pay for supplies at all. That would be nice if it were that way everywhere . 

There are countries that have such good coverage that I often hear of people being able to get far, far more than they need. It's a different extreme! 😱 

This stoma really getting the best of me the past 2 days. It just keeps sinking below the hole of base plate. I just cant believe this is a convex Bag and it sinks below. The sinking stoma. 

@chelly Is it sinking before output comes? Like with peristalsis?

My stoma (at least, it used to) retract when there was a blockage happening, or when output was hard to pass through.

Even with my protruded stoma, it would retract below the wafer line, so output would get under the wafer.

I can only imagine that it's much more frustrating when the stoma is already starting from a flush state. 

Yes it sometimes does sink in before output even starts in a new pouch. Im thinking its that donut around it and maybe I'm not getting a good seal.  I did some researching on remedies for this and found that loose dkin from losing weight can cause this type of problem. I also read that a tummy tuck can correct the problem. I think my insurance would cover it if i have a good enough medical reason and this surely is a good enough reason. I read that sometimes they can can just revise the stoma and others may have to get the stoma relocated. At any rate I thought this will be great questions to ask during my general surgery appt in a few days. 

Update: I saw my general surgeon and he agrees to let the colorectal guy do the stoma and move it. Says he will be around the day for the surgery and will be able to address any mesh issues. But, I will have a good chance of getting a hernia in the new stoma area,  as a stoma is actually a hernia i was told.

  If i get a parastomal hernia in the new stoma area and then he will have to go back to fix it if that happens. Does not want to fix it all up for that surgery because there is no guarantee this new stoma will work properly ,so they have to make sure it's in good order first before any mesh re-enforcement. I really feel this old stoma has poor placement as I've seemed to have nothing but trouble with it. 

I was looking at my old notes from old operations years ago and I once had an ovarian cyst and was never aware until i read the OR report yesterday that they had to lyse adhesions inside of me back then and that was in 1996 or so and way before my stoma. 

The only abdominal surgeries I had before that were two C sections. I actually feel.like adhesions are coming back now after my last adhesion operation as im getting that feeling of the intestines getting locked up and painful when bending down again. It's like a never ending battle here but I do soldier on and try to do the best I can with the situation ,although at times it really gets the best of me and I wind up in tears. 

I hope im making the right decision to go in and fix this thing as the downside can be hernia, more adhesions, and possibly the stoma might not work out. So far im on the list for surgery in a couple months but I really need to think this thing through. Not sure if I should leave well enough alone or go forward. I have to decide quick though because i dont want to hold up the doctors schedule. It is really hard to.keep.the bag on right though with this stoma sunken into a donut all around it.

I did ask about getting a tummy tuck or skin removed,  if that would help but that would be a plastic surgeon and yet a separate operation and a new different doctor. My surgeon did say he wants me to gain some weight though and I do need to. Maybe it will fill-in the skin.

Im not sure even if the weight loss caused this as with my first revision and adhesions lyse,  I got that shelf above the stoma and then after the second revision i got this donut thing  im assuming it could possibly have to do with messing with it with that mesh in there. Not sure. This is a big decision for me as I have mesh all across my abdomen. I will be devastated should something worse go wrong. Im getting too old to be going through all these surgeries and im not sure what I should do here. Im.not happy the way things are right not for sure but I'd surely be highly upset if things dont work out. 

I'd welcome any input from you all on this matter.  

I did go against my budget and get a bottle of m9 in the meantime. It's helping a little but the stoma sinks under the hole of the pouch and that is where some of the smell is coming from I think.  The skin thst is sunken in the middle of that donut may be what's causing this 

Posted by: @chelly

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But, I will have a good chance of getting a hernia in the new stoma area,  as a stoma is actually a hernia i was told.

Yes, a stoma is technically a hernia! But an unwanted hernia isn't always guaranteed, so you may need to be extra cautious as your body heals.

Posted by: @chelly

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I really feel this old stoma has poor placement as I've seemed to have nothing but trouble with it. 

I think we can all agree on that! I think your new stoma will be an improvement, even with other risks.

Posted by: @chelly

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Im not sure even if the weight loss caused this

Weight change, both up or down, can sometimes have an effect. Not saying that's what caused your issues, but it can result in physical changes which negatively impact the stoma and the surface that the appliance adheres to. Age has the same effect, unfortunately. 

We can only control so much!

Good luck with everything. I think you've got a solid plan moving forward.

@chelly ... Grab some coffee...lol!  I'm  Sorry I've been absent here, but I see you've been in the  golden hands of our leader, Eric & just as well. Bcuź I think trying to better our situations and  makInig them much more livable is worth it!  As we age or before we get too old to feel afraid of aging & surgery,  as many of our elderly do at times,  it's better handled now while you have the gumption to fight for change and are more ready to deal with a big surgery.  Good on you for spending the big bucks on M9, I know it hurts, the price is horribly rediculous from where I am. I can cry over that!  I just bought 3 bottles with free delivery over 100 $$, it came to $178.00 rounding up. With prices like that, shouldn't it come with company shares too? I was actually nauseated paying for it.  To add insult to injury, even though I was at the website for the three day delivery had I 'phoned' it in as usual but their line was busy all day and I tried easily 40 times, I placed my order online. After not yet receiving my precious 3 - 8 0z.  bottles of blue gold 5 days later and a family wedding to go to,  I went to my receipt and read that it's coming from Ottawa and will take 10 to 12 business days to process and another however long for it to actually reach my doorstep thru 🐌 snail  mail,  made me want to cry... UGH!!!!! 

Please, lets all share where we order M9  from and the cost & delivery time. At this point I' m thinking even living in Canada and ordering from trump would be cheaper! Lol! 

I'm wondering something regarding your concern for another hernia... maybe those who wear a hernia support belt can answer this... would wearing one after surgery,  if your surgeon okays it, be beneficial to you in avoiding another one, especially in the 6 to 10 weeks following surgery?

I hear all your concerns loud and clear & I would still say that bcuz of all the stress this has caused you & all you've gone through & on doing all of your homework on , GO FOR IT !  I know for myself that I recover from surgery very well & it's all so much safer with anesthetic now then ever before.  I think having all you've gone thru that you would regret not doing this, and I honestly don't think regrets is a way to live.  You would always be questioning your choice to not have it. That hood over your stoma, ask the doc if he can at least speak to a plastic surgeon and see if there would be any adverse affects to removing the fleshy part of it?  This was caused from what I can tell, by the last surgeon anyways and he wasn't in plastic surgery. Is relocating your stoma a promise?? I SURELY hope it is. It would be crazy not to at this point. Xan he gaurentee you a goid inch out stoma?? Mine on average comes 1 1/2" out.  Has anyone else reading along, now or in the future, had a stoma redirected to a whole new area? How did you find that afterwards & how was it for healing too & functioning? 

Plus, I felt that you were very active rather soon after your last surgery, but I understand needing to get groceries too,  pushing a grocery cart can not be easy on the abdomen... can I suggest you start a meal plan ahead of time,  being as prepared in advance as you can be so you are able to avoid pushing a cart home or even carrying a bag of groceries and if need be, walk to the store but allow funds to at least take a cab home.  Get in touch with a local ostomy support group and see if some there can be of help for you this time,  or through a local church outreach group again. Even if you can't now, at some point in the future you may be able to give back in some way.  

I don't know about you, but I discovered with this recent sinus surgery, that I heal so much better if I just live in my pj bottoms at home. Its easier for me, being alone, after surgery to remind myself that "I'm trying to heal here," and to give it my best go at healing by staying in them, it truly helps me to remember this especially on my good days where I want to clean a bathroom or to be doing all sorts of things I shouldn't be doing!!! Sound familiar? I get that like me, you're on You're own too. Sure my sons in the basement with his family, but he's got a management job that requires more of his time & by the time he's home, the last thing I want to do is take that time he has away from his family, so I just don't ask for his help if I really don't need to.  The juds and wife are honestly useless in the help department and I despise made up excuses, especially those I can check on so I just can't be borhered asking! My dad maybe but it saves a poop load of frustrations. 

I hope some of this is helpful to you hon! I'll come back & check for spelling errors later, my eyeballs aren't happy with me right now! Lolol

@veganostomy thank you for your input.  It means a lot. I trust your judgement. I guess I will be brave and go forward. It would be counter productive to stay as is i suppose.

@dlkfiretruck I got the m9 from carewell. I think it's in the united states. I live in the US so not sure if  all the places i have ordered would help you if your in Canada.  There are a whole lot of places order it. I usually call my order in so that I have a person of reference and a documented call in should something go wrong. Also I refuse to.put my card online any longer after a hack I had. I have ordered through several places and I look for medical supply companies as they are most legit.  

Yes big difference with the m9. I had forgotten how well it works. I have to fit this in monthly somehow. If I go on autoship I can get it for $19.99. Thinking about that. I was really having a huge anxiety attack about smell because people here were complaining about a smell and because I got bullied twice before in the past ,  it set in in pure PSTD mode but I'm still on high alert. I literally gave no confidence anymore  after those incidents. I think the smell was actually coming from outside though and with us opening windows it gets inside. Im thinking the drainage ditch and the dumpsters. Not sure. There is senior assisted living type places  behind us as well and of course their dumpsters and the wind carrying smells. 

Thanks for giving me confidence in moving forward. Between you and Eric.  It sounds the logical thing to do as I cannot go on this way with these bags not wanting to hold on  right. So you both knocked some sense back into me . It's no way to live. In fear to eat or to leave my apartment ya know?  Worrying about smells and bags falling off. People talking etc. .. 

I decided to forget about the plastic surgeon thing to remove that skin because it was never there until after my adhesion / revision surgery in May.  Plis would be a whole other consult and a whole other surgery. Yes they will be creating a whole new stoma this time. Taking this one down and making another, but this time my colorectal surgeon will be doing it. He does a whole lot more stoma than general surgery does. I just hope the mesh does not cause to sink in or some other weird issue. I guess I have to chance it at this point.  

Yes I was walking to stores and such back then but I am in a new apartment now since end July. It's a much bigger and cleaner/ nicer place, its in the country by nature which I prefer,  although still some issues. The stores and bank  is much closer here for me and i now have a collapsable wagon. It only takes me 5 min to get to the store and 12 minutes to the bank verses the 20 mins and 1/2 hour at the other place.    ive received some help from an unexpected source for rides here and there. I think out here I have a much better chance for surviving on my own since I have a bit more help. Im so much closer to help resources here. There is also the local grocery thst delivers  free to seniors one day per week. I will make sure my cupboards and fridge are stocked this time. This way I can stay in my pj's too.

Thank you all who have chimed in here. 

I've just received my sample of enzymatic rain stoma cleanser and im excited to try it out next bag change.