@veganostomy I just returned from my surgeons office and he's admitting me to the hospital tomorrow. He's going to do a CT scan , have the nurses work with me for the pouching solution at least a temporary solution. I told him I want this fixed cuz I can't live this way. He says it's really too soon after surgery. I told him take this stoma down and make a new one lol!! But he says first let's see what the scan shows. He did not get to see the buldge That's like an awning over the stoma because I had my bag on but he will see it in the scan I'm sure. I have never seen a stoma that won't push out when pushing on a convex bag while applying it. I've had 3 stomas so far its almost like it's just glued onto my belly with no bowel behind it that pushes it out. So will see the nurses and yes I'm going to talk to them about an adapt ring. If I remember right, they are not so melty like the cera ring. 

Thank you for the replies. I'll keep you all.posted here as to what happens and what the findings and outcome are.its always something. 

@chelly    QUIZ to  follow...

This Is So Good! Chelly, im glad to know he's going to do the scan & try & figure things out for you!

Is your "awning" stoma only visible when your standing up??

On average, my stoma ALWAYS sticks out a good 1 to 1 1/2" inches. I have to use a small mirror to check under it so I can see and make sure my skin is good. 

Weird Stoma things..  one day my stoma took a walk & reached to the bottom of the pouch! I called my son to come look & help me make a decision. I ended up laying down to try & figure things out & what I should do next!  I knew darn well that I should go to emerge but hated the thought ofcdoing that! Lol! Ugh! Anyways, I fell asleep & when I woke up and hour later, my stoma was normal size again.   Another time & only twice since 2009, it became totally flush with my skin. And hour later it was sticking out normal again. These are the only issues I've ever had with my sticking out stoma. 

To anyone else reading here,  how big is your stoma???   I'm really curious if short flush stomas are a thing or if it's typical to have an sticking out one AND,  if so, whats the average length of your stoma?   Do you think the length of your stoma contributes to leaks??? 

@dlkfiretruck hi, the awning is there if I'm standing and if I'm.layiing down so I have to pull it up with one hand and try to get the pouch on that way. It's all crazy. So I have my left hand holding this awning up and then have the pouch in my right hand ready to be slapped on but all while trying to look down to make sure I'm getting it on right . Don't know if a mirror would help in this case be cause i still have a hard time seeing through the pouch I got so accustomed to just looking. 

That's crazy how your stoma went alll the way to the bottom of the bag .would that have been a prolapse?.

It sounds like you have had your share of crazy things happening in stomaland..I'm pleased that my surgeon cared enough to have me admitted  to see what's all going on. I'm waiting now on the call for them.to tell me my bed is ready and to come in.  Stay tuned, I'll come back here to put an update on thier findings. 

I think the answer to the question about flush stomas is that no , the stoma should be sticking out in the bag as why most people can wear a flat bag but then they can retract and go flat for certain reasons and then we have to go into a convex. I can remember having it sticking out when I got my proctocolectomy but then mine went flat after hernia mesh surgery..this is why they tried to revise it with this adhesions surgery but it turned out worse than what it was. 

@chelly I'm glad that they are taking it seriously and are willing to investigate before making the next move. And I'm proud of you for advocating for yourself!

@veganostomy thanks Eric as I have no choice. I had to advocate as there is no way to live this way like this comfortabley. I had to change 3 times the other day. This stoma and this shelf, awning, hood, whatever you wanna call it is just not right. I feel like I have to do acrobatics just to get this appliance on. 

I'm here admitted now. Got here this evening . I have a very large private room. They are hydrating me with ringers right now. So far I see he has ordered a type and screen on me so this may mean possible procedure or surgery depending on what the cat scan shows. Don't know if he ordered that yet or not. 

Have to remember he did not do my surgery because his schedule was full and he had me in for June but they needed to squeeze me in due to all the obstructions so therefore someone else who is not my surgeon did the operation. The guy did his best and I'm still appreciative for the effort . 

I know and trust my surgeon is going to try and make things better for me. He's such a great doctor. 

I'll come in and post further as I go along here. Thank you for your support and thanks to all who have supported me on here as well. You have a very kind set of people on here Eric. I've been on other sites and it's not this nice. Thanks for giving us such a good ,helpful and supportive place to come. 

@chelly  ... So, you've got your hospital bed & they are running IV!  That's a great start!  I always feel so much better after IV.   I am rooting for you Chelly. They need to get this sorted out for you somehow. 

How do you feel if it leads to another surgery?? I know how taxing that can be on the body when you're already fighting for some sense of normalcy. 

Yes, I don't really like to think of it much bcuz it was a very difficult time in my life for all that I have gone thru with my guts & all.  I ONLY ever talk about it here. Family & friends have no clue what I've gone thru & that's okay, they wouldn't believe it anyways! Lol!!  Only friends here totally get it!  I think talking about it helped me accept it better, but I never talked about it until I was about 6 yrs in with my stoma & that was here & there first several times thru tears. At any rate, I'm living as well as can be & I intend to stay as normal as possible doing the best I can for my situation.  I know 100% that everyone here fully understands that!  This is my safe place, so yes, again, THANK you Eric! 

In 6 months of my 13 1/2 month hospital stay, I was septic twice,  had 7 major surgeries leaving me with SGS, (short gut syndrome) & the last surgerie they could not close the incision from just under my sternum to the top of my pubic bone. You could have placed a long thick novel in the area left open. I was hooked up to a vacu-pak for months in hospital to heal from the inside out & on a pic line for 11 months of that time.  The dressing was changed every 2 days so I got to have a peak at my innards when I dared look, lol! My abdominal muscles healed about 6 inches apart from each other leaving my guts with only skin covering them & no muscle or ligament protection over them, lol, its like one giant hernia & when I'm gassy or dealing with a blockage depending on where it is, I get an  intestinal bulge, much like you'd get thru a smaller hernia, only down the center of my tummy. It looks real attractive when that happens & the only way to get thru it is to lay down. Sometimes massaging my tummy helps, other times mattres Olympics, as in flip flopping,  I just have to wait it out & lay a hot water bottle on top as the water weight helps my guts to relax a bit &  even the bulgeiness out too.  

You have no idea how proud I am of you for fighting thru this wonky stoma business.  There's three words that I learned that clue some doctors in & that's  "quality of life!" So, don't be afraid to use them if they become negative towards what you're dealing with.  You can also ask for a patient advocate if need be. That's usually in the way of a social worker, but they can also help you with other things when your dealing with prolonged health issues like this.  They can help you with paying bills, the extra cost of groceries & thru a prescription in Canada, the cost of the Boost & Ensure type drinks can be covered thru the pharmacy too bcuz buying the extras for ostomy needs can be harsh financially .  

I understand about the cost of M9. After my hubby died, I was on such a limited budget it was almost painful & buying an 8 oz. Bottle of M9 was not going to happen.  I know in  B.C. Ostomy Nurses are trying to get Gov't Medical to cover M9 bcuz of the emotional baggage around not being able to enjoy being in public & to afford it.  The " Do I stink?" factor is quite huge around Ostomies.  I just bought another 3 bottles bcuz it saves delivery fees spending over $100.00.  $100.00, at $39.99 for an 8 oz. bottle, I can get one month out of it so they 3rd boþle is $15.00 cheaper if you factor in no delivery fee. I have to take the time it takes to count 23 drops going into my pouch.  So I'm very careful with each drop.  I save empty stoma powder bottles ( covered by medicsl), they expire rather quickly & I rarely use it but I always have it on hand, so I wash them out & save them, bcuz of the drop tip & put the M9 in it. 

You can also ask for samples of it from Hollister & ask for 2 bottles.  Just tell them straight up that you can't afford to buy a big bottle & then use the samples only when you go out & need the confidence boost.  Also, shop around!! Prices vary from 30 to 80 bucks an 8 oz. bottle. It's  none less then down right shameful!! I don't know why Hollister doesn't just sell the 8 oz. Bottles when they already have the sample size there to send out.

I truly hope you get this stoma fixed up the way it should be.  I'm pretty sure I lucked out having an experienced stoma surgeon.  He retired about 6 months after I was out of hospital & I joke that I made that possible for him!  

Yes, do keep in touch & even if you just need to chat about those lovely hospital gowns, lol, we are here for you! Remember too, you are so much stronger for what you have been through! 

Wow LK! You certainly have been through a whole lot. Your a strong women to endure all that you have disclosed here. 

How do I feel about Other surgery? Well, I feel I want this thing fixed. Today they took me down for a cat scan and waiting on those results currently. 

I had a really bad bout of diarrhea today and put out 900 ml in 30 mins. Horrible! I Asked to be taken off the fluids for a little while in case that was causing it. 

Stoma nurse came and measured and I have gone down a size again. I'm thinking of going from a one  piece convatec convex active life to a convatec 2' piece convex natura appliance. They don't carry my active life pouch here at the hospital but they do the natura and it seems to feel more secure somehow. I do worry about the bag pooping off but all in all it seems like a sturdy lightweight option. It's still going to be a struggle applying it with the awning and has no suggestions how to get around that. They have only cera rings here so I may have to ask hollister for samples.

Both the active life and the natura has the same adhesive which is durahesive so no allergy issues. I will have to get enough from the nurses to get me by so that I Can get a prior authorization the new pouches. I still want this fixed because this is not going to take care of the whole issue. Hopefully I won't have any pouches popping off the base plate but I have to do something in the interim to at least make things a little better. 

This is my situation. I've been butchered.

This photo is exactly what I see when looking down. You cannot even see the stoma. It's underneath a shelf , hood whatever.

Chelly , I really hope they sort out something for you soon , Like Linda you really have been through hell and yet ye can still come on here and give others like myself great support despite this , this really is a safe place for us all and once again thank you Eric for the advice , videos and just a kind word here and there which means a  lot , we truly are blessed to have this site ,

Linda you were asking earlier about stoma size , mine is about an inch and a half and staying that way at the moment , it has gone nearly flush with the skin a few times and prolapsed a couple of times as well , but once i used a proper support belt everything settled down nicely , it changes width a lot though , goes from 25mm to 32mm , but thats easy to cope with .

@tony-h thank you although I dint see a solution other than surgery to take this down and make a new one in a different spot..

@chelly  ... oh Chelly, your poor tummy!  That's an awful stoma! In my eyes, no stoma should be flush with the skin.  Everyone here who has had trouble with it, their stomas have been flush & it takes so much time & frustration for them to figure things out for what works best, and often, its just more surgery to repair an awful one. 

Needing a prescription to change to a pouch that might work better is stupidly rediculous! I know you all in the States that this is a common issue bcuz of health insurance coverage, then often limiting a client/ patient to such pettiness as to how many pouches can be used in a month is also in the same category. 

Remember when Covid first happened & we were all home bound ? I don't know about anyone else here,  but one of my first fears was will I & others be able to get our  much needed ostomy supplies?? As it was, I had built up a supply of several months, but my worry was also for others on those limited supplies & with not working, how were we to even pay for them!  Like your present stoma, it was a huge concern. 

Chelly, those pictures do help but I think you described it very well.  They need to fix that thing for you! Its not even a hood, it's an umbrella & you can't see to put a pouch on correctly & that's vitally important to skin health & healing. Even I can see that from here! I can well imagine the future skin issues bcuz of how your stoma is formed. 

I look forward to hearing what the surgeon will do for you. Stay strong! Don't be shy about it & speak frankly to them!  Even ask, would your wife be happy about a stoma looking like this & all the issues that arise from it, including time to deal with it this way,  like skin health & care, leaks and finding a pouch to go with this stoma. You may never get out of the washroom for anything but to eat!  Usually if you force them to look at things in a personal matter that's when they start to get the big picture. I never had to go thru what your dealing with, but turn on the "reflection switch" & ask if even they would be happy about a difficult useless stoma like this. Haul out your fearless lady & calmly make them look at it standing & laying down too! They need to see it from your point of view & don't shy away from asking for an outy stoma verses a non-existent one. Your quality of life is important Chelly & there needs to be accountability from someone to fix this. 

Remember the saying, "the squeaky wheel gets the grease," well,  squeal like a stuck pig would squeal Chelly!  I'm rooting for you!!  Be as strong as you need to be. You said it yourself, you have to be your "own advocate" & sadly,  I know from surgeries before anything bowel related how hard that is, but I have full faith in you to get this stoma situation out in the open, literally. Here's a big virtual hug from across the miles, you can do this! 

@chelly Now that I can see the challenges you're facing, I would push for a revision, too. Surely, even your stoma nurse can vouch for you on this one. 

I'm glad that the support here is helping you. We've collectively had so many challenges, so as a community, we "get it"!

Please keep us updated. I'm happy to have a private room, so that's one stress out of the way.

• @veganostomy surgeon came in today and he put me on his surgery schedule for next Wednesday. He must have had a cancellation.m. I will be going home tomorrow  and coming back on Wednesday to do the surgery. Let's pray I get no ileus. I think we just need to take this stoma down and make a new on the other side. That's what I'm.shooting for anyhow as long as he feels it's safe. Yes I felt compelled to post the pics so you could all see why I'm having such a hard go at it. Says I can wind up with hernias but he can fix them.later. you know, I still have that mesh inside but he's very experienced and I feel he's going to do his best to fix me up. 

@chelly That's great to hear, and yes, while there are risks, you really need a better stoma moving forward anyway. 

Take things one day at a time, and good luck! 

@veganostomy yes the risks are giving me cold feet now. I keep messing with this thing and it just keeps getting worse. Last night a big blow out from gas .first time in a long time they have me on a convatec natura and I feel it's not as strong as my Active life. I'm also smelling more odors I had to get these from the hospital because the stoma shrunk again. I have none this size here in the active life. But yes a blow out . My stoma has been sinking Into the hole of the ostomy pouch also and major, major melting of the ring. 

This is such a struggle and Im growing weary and tired. Getting depressed about it all. 

@chelly It overwhelming to think about (another surgery), but your current experience has been overwhelming, too. And you deserve better!

I think a revision, without the "hood", and a slightly protruded stoma, will make your life eaiser.   

@veganostomy i want him to.put it into a different spot because this stoma has gone flat on me twice now. The first time learning how to bag it right worked for a long while. The hood on this one is no good. The stoma is  actually sitting inside of a sink hole. Therefore the hood is actually around the whole stoma any way you look at it  like it's sitting inside of a donut hole with a wall all round it. He really does not want to change the area and wants to revise it but I feel like we have tried already and it's worse. I almost feel like I want it on the other side. To take this down and. Make s new one. 

My temporary ostomy used to be on the other side and I was told before my end ileostomy that if need be i may wake up with a stoma on the other side and I did so I'm not sure if there was a problem on that side or not that one could not be hooked up on that side. He also said if he takes down this stoma there will be a hole there. This stoma feels so tight now though. You know how of your using a convex bag and you go to put it ion you. An push and you see the stoma push out longer.?..well this stoma is tight and it does not push out anything from behind almost like it's a stoma glued onto my belly. 

He says we are most likely going to have to do some hernia surgery at some point again as well but first he has to make the stoma right and once that gets right and then a little time he can go on n and fix that if needed. I believe the hernia is back. He says it's not showing up on a CT scan but my belly looks 6 months pregnant. 

I know that mesh is letting loose from.them slicing into it. My belly is sticking out in my baggy tshirts and it was not like that before this but they had to go in and do something about all those adhesions I had. Just a really frustrating ordeal all the way around 

@chelly I will be thinking of you as you approach your next surgery, Chelly. You have been through so much, and as Eric said, you deserve better. It’s sounds like you have faith in your surgeon, and he has listened to you, and he wants to make things better for you. I can only assume that all of those factors will result in a better outcome for you. Stay strong, Chelly. It feels like you’re getting to a resolution, even though it hasn’t felt like that lately for you.

 Laurie 

@tigerlily hi, yes he listened and I think he feels bad that he could not be the one to do the last surgery. I do have faith in him. He's very experienced but even with that, they are not God and can't promise us it will work out. I'm willing to give this another shot with him this time. We know even after this revision that I may be having more hernia surgery in the future as well since my mesh was cut into,  but he says one thing at a time. He told me don't worry he will fix things as they come up but in the right timing and has to be in the best interest of my health as not to rush things and make things worse. 

I'm going for my pre op appt on Monday. I thank you and all of you here for the support and not only , maybe my posts here can help someone else out in the future if they have these same issues. 

I love being house bound these days with this stoma so that if something happens at least I'm here in my apartment. I get anxious only when I have to go out. I make those trips really fast lol!! All i can say is that I'm really glad I'm retired right now because I could not imagine having to worry about blow outs if I were working.