@chelly  ... you know Chelly, you've got the right spirit and attitude & even patience for this new surgery & honey, I'm confident it's going to fix a lot of issues with your tummy and especially Your so called stoma, you know, the non-existent one! Ugh! You be sure & tell your surgeon that there's a whole bunch of ostomates here counting on him to give you an outy the size of the end of his thumb from the last knuckle on!,  and that we're looking forward to seeing much improved pictures of this new stoma this time around!  You can tell him I said so too, lol! 

The only thing I'd advise about this surgery for you Chelly, is to be very direct about your expectations for a new stoma & then ask him to please fix this thing so you can stop being homebound.  That said, Your surgeon sounds like he's on the ball and he's right about taking things one at a time.  He first has to get in there & figure out what the dickens that last guy thought he was doing to you in the first place!! Yikes! That stoma is atrocious & if your comfortable staying close to home & making fast trips, then it IS affecting your QUALITY of life in more ways then one!   

Its perfectly normal to get cold feet before surgery,  especially when you've been thru so much in a short period of time like you are going thru now. Its also normal to start to feel depressed too.  Just do your best to not let it climb on top if you & weigh you down.  I hope you've had several good cries by now, I nearly joined you reading some of your posts. I just hope you, and all of us here, realize how uniquely strong we are!!   You especially at this time, deserve to have the freedom of a good stoma.  My heart is in this with you & I am praying for you every step of the way!!  You be sure & let us know when surgery is and I'll be praying for you before you go to the O.R. & during your surgery too.  I'll also be praying for the Surgeon and in advance of your surgery too.  You're right, they are not God's, but I believe they can be led by Him. 

At this time, when you start to feel the hebegeebess setting in, take several goid really deep breaths & change the direction of the fear, into something else to distract you from it.  Try and stay as positive as you can and pamper yourself a bit.  I usually end up just trimming & filing my finger & toenails so I feel at least they look better if I cant! Lol! Its not like anyones looking them over anyways, but hey, its distracting for sure.  Bake a batch of cookies or something so when you're home, you have a treat from the freezer if you need one.  But most of all, hydrate well & get the rest your body is needing.  Oh, and that Church you're hoping to attend, contact them & ask for a Pastoral visit too if you're comfortable with that & maybe a couple ladies can come visit you in Hospital too. 

I'll be thinking of you & praying for peace & comfort for you in the days to come. Hang strong! 

@dlkfiretruck thank you for your kind words, sound advice and being there for me as all of you have been. 

So I'm here now in the hospital. He did not create a new stoma as he felt he may be able to revise this one. Now remember his fellow tried last time so I'm giving that a chance since my surgeon has much more experience. We shall see how it goes. I understand because I was just cut open and he'd have to cut me open all over again so soon to make a new one although I was willing to do it. The other thing is this stoma was there when my mesh was put in. Taking down would leave a hole and then a parastomal hernia may form behind the new stoma so I get where he's coming from and not only the safety of going in again, creating more adhesions etc   But I certainly hope this works. I'm trying to keep positive but it's very hard since this thing was already revised and it got worse once already. 

Yes situational depression has set in. I've been much of a trooper but then other problems arise in my life and that's when the tears start. It's all been too much. Yes I've done some really huge meltdowns with tears this past month. And extra sensitive. Looking to hopefully getting some relief from this revision. 

Thanks again Linda and all the others as well.  ❤️❤️

@chelly ... first, you're welcome, but, I don't think I said anything anyone else here was likely wanting to say, to encourage or to try to help you thru this difficult time you are going thru. And Chelly, you are going through a very difficult tear worthy time. Good for you allowing the tears to flow.  There are times in our life that, as you have done, that we need to resign to trusting the knowledge of a surgeon we feel most comfortable with & allowing him/her to put into practice what they have learned and experienced just as you are doing.  This waiting & healing game is so difficult to deal with & I admire your sheer honesty over all you're going thru. 

Try to remember to take not just one day at a time but one second at a time too.  As you know, that changes hour by hour, minute by minute most days.  Be patient with yourself and your body, it needs your support right now & rushing things won't help. Going home happens, sometimes sooner then we are ready for, other times not soon enough.  I've told myself this on more then one occasion and in dealing with the impatience of the healing process, time, and how ridiculously slowly it can seem to take, that I just needed to stop trying to rush myself when it was my body that needed the time more then I did, lol! 

You've been thru a lot, so as swelling & pain settle down it may be hard for you to allow yourself that time, but you can do it. You're used to being a busy, hardworking person & going to a space in your life that requires patience, rest & even too much rest,  can be hard. One thing I always tell myself, especially when I am going thru survival mode is...  " I'm okay so far! "   If you like, I'll lend that to you for as long as you need it!  Stay as strong as you need to be and keep us in the loop. I'm very interested to see how this revision goes for you and I hope its everything you need it to be.  Rest easy Chelly! You've got this !!  

@dlkfiretruckHi thanks,

I was sent home the next day. I got to see the stoma area when the nurse came to help change the pouch. The pouch had been undermining and I kind of know that as I could feel that Burn, stingy feeling around the stoma under the pouch. The area looked normal again. So far it appears he was able to rid of that shelf, awning or whatever that dreadful thing Was. So now the skin around the stoma looks normal. No bulges, shelves or dips. Amen!! The stoma was sticking up so as the healing process continues I hope to see that it stays and no more complications.

I feel I was sent home to soon as I'm.not feeling to well. Need so many things from the store but no energy to walk up there.  

hey Chelly , great to hear that you have had some success , they really did send you home quickly , just take things as easy as you can and order in stuff if you cant get out , really praying for you and sending healing thoughts across the wild atlantic to you , I step at a time and every little improvment no matter how small makes a difference , try and keep your spitits up , we are all rooting for you ,

Tony 

https://photos.app.goo.gl/rFQEixNhesTruC3J7

something that always makes me smile 

@chelly ... lol, grab a cup of coffee! ... Tony is exactly right! Order in what you can and if you have to to get the brands you like, send pictures.  I have a file set aside that is for anyone buying something for me. This is so theres no mistakes in what I need & If it's not there, then my Son will text me with the next options I choose from there.  I understand that m8ght be harder for a stranger but if it means Ill be happier with my groceries, then He has realized it cuts the flack towards his choices too. 

I nearly fell over when I read you were sent home already! I know a lot of it depends on how deeply they had to go into your abdomen.  So if it's pretty surface surgery,  you did well under anesthetic & in recovery room,  one night  & they show you the door. WOW! I hope you are resting better at home!  You have a hospital type bed now right?  This seems to be the way things go in hospitals lately & maybe it's better for you this way too.  

I was so thrilled you could see your stoma!! That's exciting news.  Now, don't do any vacuuming, washing floors or anything Including shopping for 4 to 6 weeks.  Six weeks was always the golden number for healing from surgery & time off work, but that may be in the olden days now! 

How did you get home from the hospital this time?  Would someone take you shopping, but they push the buggy, unload, pack them into bags & do all the lifting (grunt work) for you, including putting bags on a counter not the floor for you? Your can unload but keep heavier things where you don't need to bend to get them.  Your poor little tummy has been cut into a fair bit & everything is swollen  & sore, so even doing laundry could jeopardize that unless your so careful to only lift small things,  avoiding a hernia.

UGH..  I'm just remembering how after another big surgery I needed as an immediate emergency,, how my sister inlaw came for a few days to help with the kids.   I was sitting on the couch folding a few wash cloths & with 2 hours I started to feel like death warmed over & headed to emerge.  Up to that point, that was the most strenuous thing I'd done. Suddenly,  back in surgery!!!  I had apparently torn open sutures deep inside and was slowly  hemorrhaging.  Sis-inlaw stay for 2 weeks after that. I felt so angry at my body for being so week as to let that happen & then about a month later, likely the last time I looked at my body as a whole person,  bcuz of how my brain told me, hey, somethings wrong here & all the other symptoms I was experiencing in my body, made me realize how strong we humans can be & how fearfully & wonderfully made we really are.  God had given me a brain & though exhausted, I knew something was amiss & my brain said, hey, react women!! So I did!  Now though, I feel it's more like my soul living in this disaster of a body, feeling so disconnectedfrom the rest of me, lol.   I have learned to compartmentalize my body & I've simply disowned and then,  other parts, I marvel at! Lololol! But I still see myself in  sections, my guts, my bladder, my lungs, my stupid numb feet & hands.  Sure, I look all connected & put together to others, but I still compartmentalize my whole body! That likely sounds terribly strange! Lol!  But in doing so, I know exactly what is good, what is bad,  and, how to care for it in whatever state of wellness or inflamation it may be in.  

My point in telling you this is so that you might be able to say "I feel great and my pain is hardly noticeable", but I did have surgery so I need to let that heal before I start doing Cinderella style house keeping. The thing is, floors can wait, shower stalls can wait, a major grocery shop can wait, even laundry if you have enough clothes. We always tell newbies about eating, "everything in moderation," this goes with healing after surgery too. 

Spoil yourself a little & as hard as it can be to not get behind, let it be! It will still be there when you're healed up enough to do it without almost crashing afterwards.  I'm pretty darn stubborn... when it comes to staying on my self implemented & cleaning regulations schedule, I want to stay on it & not get behind bcuz it just makes for more work later!   But Chelly, you are the only one who knows what needs being done in your home & IT WILL BE OKAY to let those  things go, don't even look at them, while you allow yourself time to heal first.  I get its hard to NOT DO these work things, but YOU ARE MORE IMPORTANT right now.  You deserve the healing and patience that  your body needs right now. 

You can do this, let it go... rest, heal, get lost in a good book, recover, ASK FOR HELP where you need it most. Don't even drive, it's to close to anesthetic, not just once but twice... I do wish I could come and help you. If I could, please, know that I would be there. Stay strong! 

@tony-h thank you for your kind and healing words. Yes I've been mostly sleeping but I had to do a 2 mile walk to the store as I needed toilet paper and it's so hot here that I dehydrated and landed myself in the ER to get fluids but I'm.ok. I caught it in time. It's so dreadfully hot here right now. It's 91 degrees and all I can do is lay in my bed. It's even hot at night with The AC going. I wake up sweating in this hospital bed. I need to get a nice thick cotton mattress pad for it as you know they make these mattress plastic. 

@dlkfiretruck I've been getting home from the hospital through my insurance. They give free rides home for discharges. This is how I've been getting home each time. 

Yes it's a struggle after surgeries isn't it? I'm glad you had help. All of my family lives in other states far away. My one son lives in the vicinity but it's an hour drive and he works two jobs. I just basically am managing myself as there is no choice. I do feel they sent me out too early. It would have been nice if they could have kept me over the weekend but I feel it was my insurance. I think they have to have a real good medical reason before insurance agrees to keep paying. Therefore they felt I was stable and all my blood work came out good except magnesium but they replenished that. So I'm pretty sure that was the reason.

The week prior they had me in there for 5 days with no surgery. It was because I could not keep a bag on and he wanted to do blood work and CT scan etc , plus I was dehydrate and to let nurses try to help me secure a bag to stay on. But makes no sense that they kept me that long for that and sent me out the day after surgery when I most needed to stay a bit longer. 

At any rate I'm home and doing my best that I can. I'm very weak, probably from anethstesia and just the jar to my body. I'm trying to sleep a lot and catch up and trying to heal my body. 

I did walk to the store to get toilet paper as I was out of it. It was hot and I dehydrated but I got my toilet paper. ER fixed me and went home to sleep.

Thank you for sharing your experiences and your advice. Really appreciated. I certainly hope after I heal from this that this chapter of my life will be closed and over with. It's really been quite the ride since December. I hope not to have to see a hospital for a long while. 

@chelly  ... Good for you taking back your sleep & rest.  I often need to re-adjust my sleep pattern with a fierce purpose.  Its hard bcuz with my ostomy & especially. the last several months, I've noticed I'm in the washroom a lot over nighttime when I'd much rather be sleeping.  I need to re-adjust when I eat again too, as that seems to be a part of it.   My guts have become the opposite now, busy all night very quiet in the day.  So I'm frustrated with this shift but, I'll figure it out again...!  

Ugh! Needing the medical help frequently while you adjust after surgery is hard.  I got so tired of going for bloodwork that I just took 3 months off of it. But now, I can feel somethings screwy with my blood work again & I need to goʻ again.  I talked to my GP about it & bcuz of my history he's given a new requisition for me with repeats bi-weekly again.  The trouble is those silly little doors the blood veins make when they rebel from too many pokes. They become terribly painful when the lab techs poke for blood draws.  Last time they were down to using the veins near my knuckles. Its relatively painless there & they use the butterfly style tiny needles to do so. 

So... I'm really hoping that as all of your swelling goes down, that you can you still see your stoma Chelly.   I just want this surgery to have worked for you so well.  I hope it changes so many things for you. 

Do you use a hairdryer to warm & soften the wafers before you put them on?  It really helps my adhesion to them a lot.  Also, keep the hole in the wafer as dry as possible as your stoma goes thru it.  Pressing on the opening for several min. to add extra sticking  encouragement there, before pressing on the rest of the wafer.  I actually use the lid to the skin barrier spray bottle over the plastic & over my stoma & press evenly.   I then concentrate on the area where there's a scar that's a little lower then my skin under my wafer, going away from my stoma , kind of at the same time.   I use a one piece & I do add the osto-e-z-vents to my bag so I'm determined to make that expense last at least a week of wear time.  I have even gone back to placing a hot water bottle & washcloth over my wafer & lay down with it on my tummy for 20 min.  I just find that I'm getting 10 days out of a pouch that runs at night, but when I'm around more people, I'll change it every 6 to 7 days depending on how busy my guts have been & if there's odor from the pouch coming thru.  With most output at night & very little all day, it's been easy to go about 12 days, but then I'd much rather be sleeping at night so re-adjusting this is in demand! Lol!  Then I'll go back to 6 to 7 days with a pouch. 

It can all be so challenging but Chelly, I'm reading your post with a new sense of determination in them.  I think you're on the path to good or at least better days ahead!  Stay strong! You've got this!! 

@dlkfiretruck hi Linda,

I could never get a pouch to stay on for a week. Mine needs to be changed daily. On the rare  occasion I've been able to keep one on for 2 days and anything beyond that it starts leaking around the stoma and I get broken down. I don't have a hair dryer anymore but I used to do that why you said about using a hair dryer to get a good seal. Sometimes stoma nurses give you a hot pack to hold on it for a few minutes. 

As this healing has progressed this poor stoma has gone flat again but only on one end of it and only noticeable when standing. So it's flat on one side and sticking up on the other and of course the flat end is on the bottom of it.  It appears the shelf is rearing it's ugly head again when standing. Today I went in to get measured by the nurse and I'm now at 1 1/8. My poor peristomal skin is so broken down around the stoma from the rings melting and the shape this stoma is in again.  The stoma keeps sinking behind the hole of the bag and compromising my seal.

In my 8 or whatever years I've had stomas, I have never had such as issues like this with peristomal skin since the early days of ostomy. Over the years I've learned so much about any issues and thought I can handle this,  but this specific problem is proving to be very difficult. My bag the nurse put on today is already compromised. I'm too tired to do anything about it. I didn't get much sleep last night. I was up all night deep cleaning the house and doing laundry. 

It was a horrible day at the nurse. I had diarrhea to start with and even though I took Imodium and ate nothing, the whole visit was my stoma pouring out diarrhea and I was freaking out because I was lying down and it kept running into my side and down towards my pants line. Everytime we'd get it cleaned up and ready to put the bag on his thing would start pouring out output. After about 2 hours she got one on but it's already compromised. Most likely due to the area not being cleaned off well enough due to we had to just hurry to get the bag on.

@chelly This is really good news! I’m so sorry for everything you’ve been through, but because of your perseverance, your stoma has been repaired. Finally! I know you need to rest and recuperate, but I hope you can see how strong you are, Chelly. Take solace in the fact that your strength and courage helped you get what you needed. Give yourself a big pat on the back. You are a role model, Chelly. I hope you can see that.❤️

Laurie

@chelly  ... I'm so sorry!  You've been thru so much!  This is just crazy!  I want to say, "what doesn't break you, only makes you stronger!"  But Chelly, there must be a solution for this stoma & skin issue out there somehow, somewhere.  

Stay in close contact with that Stoma Nurse, she can be a good advocate for you, so be sure and use her strengths 100% !  Try every possible bag and product.  Don't loose heart in this battle Chelly,  you've proven to be much stronger then that. Talk to Hollister and get as many free samples as you possibly can for everything from wipes, sprays, M9 & even their room odor spray. Allergy free products included. Tell them you are desperate and as your going to be a life long customer, you need their help to find a solution too.  Its very okay to fall apart & feel badly towards what's going on but I want to encourage you here, to keep going back.  Don't settle for mediocre. You may need to wait the 6 to 8 weeks or even 3 months, ugh, for swelling to settle down before more can be done, but be as patient as you possibly can here and with yourself.  I know my first few years or so after my stoma arrived on scene, was very difficult, add the fact that my emotional support was dieing from pancreatic cancer, well, I was a secretive mess!

  I have had the acidic burns from output so badly beneath the entire wafer bcuz I had slept thru a bad leak. Exhaustion on top of dealing with all this is painfully hard to deal with. I'd changed a pouch hourly and lay very still until my skin healed just to not irritate the burning skin any further then it already was.  Sleeping slmost sitting up for days. Somewhere after finding VO, I dug up a quiet determination to beat this skin thing like you wouldn't believe.  Ugh, the things I tried to heal my skin. I still sleep on a slant at night to avoid that watery acidic output from getting under my wafer & eating away at my skin.  

I'm wondering if you would walk me thru the process you go thru when changing a pouch, right down to how many adhesive remover pads & skin barrier wipes you use. what you do after a bag change right down to product names as well.  I want to help you the best way I know how.  I do realize that your stoma and skin are a good part of the issue, but please bare with me & try & do this step by step.  Its just there has to be a solution out there and if I can, I want to help you find it.   I did this for myself and I used video to record my words & count of everything I used while changing my pouch, then I wrote it down too.  I have it written down somewhere what my solution was but I need to find it. It was something someone said here that clued me into what helped me.  

After I found VO, very much by accident, I learned something that changed my pouch changing process & it helped tremendouly for me and the skin I'm in.  If you can handle walking me thru your process & products, maybe there's something there that needs a bit of tweaking.  

I'll check back later... hang in there!!  

@tigerlily hello Laurie,

In the past couple days it appears when I'm standing that this thing is starting to revert back a bit to what it was but I'm not going to jinx myself.

It's not my or the surgeons fault if it does as we spoke at length about trying to fix this one or making a new one. He felt he could possibly fix this one. With my safety and possible complications in mind.  Im just kind of watching it day by day to see what's it's doing.  Ya can't really see the whole picture till things are all the way healed. 

The doctor did say that if this did not work that we can later go in and take this one down and start a new one. I trust his judgement in this due to so many factors. 

Thank you for the message!! Hopefully it does not totally revert to what it was. It's a bit reverting. The shelf is somewhat back but only in standing position and the stoma is flat only on the bottom half of it. The top does stick up. When lying down it he whole stoma sticks out. It's crazy! 

I may need to have to figure out how to put a bag on lying down but it will be hard to see how to get the bag on just right. No chance of a mirror be cause I need 2 hands and no one to hold a mirror. I'll figure this out God Willing! I have to! Lol! 

@dlkfiretruck hello again,

So after my shower when I took the bag off the skin around is almost all but healed up. It got me thinking here and what you say. When I left the hospital they gave me bags to use because my bags at home would not fit due to swelling. Those bags were 2 piece bags and now come to think of it the stool kept collecting in that cup around the stoma. The part where the bag attaches to the wafer is like a cup around the stoma. So see I think all that stool collecting there and being it's acidic was breaking down my seal. That whole little cup would be filled with stool. I do rinse but I mean even some stool would be stuck on my barrier ring you could see inside the bag. 

I been wearing my own one piece pouches the past two days now..well yesterday morning and now this morning. It does look like it's healing pretty good. Fingers crossed. 

I don't know what these bag makers are thinking? They must think everyone has extra long stomas or something be cause my stoma does not reach past that cup on a 2 piece  where it attaches. I dont  know if others experience this or not. 

I'm still experiencing my rings melting but I'm wondering if it's not the oxy in my new laundry detergent causing this with my cloths up against my bag. I'm trying to figure it out because I'm not really doing anything different. I bought my old detergent and going back to it to see if my rings stop melting. Just a trial because it's the only thing I changed when they started melting. We do have shared laundry here at the apartment so it could even be others residue from previous wash. I mean face it, these new soaps and the new washers don't seem to rinse out everything. It could be a possibility. 

So, my bag change you asked about. I shower with it on because it's will not stop pooping if I take it off. I'm trying to be clean about this all. I used to do it with it off and the showers would not be fun trying to catch everything in a strofoan.cup throughout the whole shower. It just was not relaxing at all. 

So anyhow I get out of shower and use either a paper towel or a non woven absorbant gauze  to clean the area.

First I take the pouch off with just a soaped up paper towel or gauze very carefully and slowly. I use dial white soap. I've found that I can use dove sensitive and ivory but I think the dial works out best.  If it seems I can't get it off with that I use adhesive remover. Smith and nephew unisolve  wipes. It's one of the few I'm not allergic too. I do not really like the spray cans. I feel it's too messy the spray gets all over and I just want it concentrated. If I only have spray I will sometimes put it in gauze and wipe. My insurance will not pay for wipes and only the spray cans. If I get wipes I have to buy them. Hollister adapt universal wipes are my favorite! No scent, gets everything off and not allergic to them. They are expensive though. 

After getting it off I will soap up the area with soapy paper towel or gauze.  Then I rinse with paper towels or the gauze and wet with hot water . I will go over it a few times with fresh ones to make sure I've gotten all the glue, adhesive remover if used and soap off the area. I even change gloves with every step as if not to get anything in my clean area. 

After rinsing very well I pat dry the area with a paper towel or a gauze. I then put my ring into my bag and put the bag on.

I have not changed really anything that had been working before. it's just the stoma itself has changed. I don't use barrier wipes due to my allergies and due to the residue they leave after you keep using them.i found in my case that less is more. Sometimes I might use a cavillon  if the area will get too badly broken down.  I didn't feel it was ready for that yet. I figured since my stoma shrunk and I was able to get back into my one piece, I wanted to see if that solved it first cuz I only have one cavillon wipe here at home. Saving for extreme emergency. Lol 

I'm hoping I figure this melting barrier ring thing out because that seems to be an issue. 

I hope the stoma will be workable after it's all healed up. 

Thanks for your interest and concern. If you have any ideas let me know

I came back to answer questions you asked that I had forgotten to answer.

The supplies I use

Convatec durahesive convex active life one piece precut pouch. 

Hollister cera ring

If I use adhesive remover it has to be Smith and nephew unisolve or resolve wipes or Hollister universal or just plain alcohol if I have nothing else. None of these irritate my skin. 

Soap dial white

Non woven absorbant gauze or paper towels

Gloves

Also reading about your experience as a new ostomate, I can totally relate to what you went through. I had no support either besides my ostomy nurse. I, like you found vegan ostomy and learned a whole lot from reading in the site and watching Eric's videos. I then found other sites as well. If it had not been for the online info and support I'd still be in that position. It was a tremendous help! 

I like this site the best as it has a personal appeal with Eric being the owner and that he makes videos and interacts .the people here are very nice and I like that we are from all over the world!!