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Making the stoma rounder???  

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Kathleen
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14/01/2019 10:57 pm  

Has anyone had to try to reshape their oval stoma to be more circular?

As per some of my other rants. My husband has a new stoma that is more colostomy than ileostomy. Operation was performed on 20th Dec 2018. All seems healthy. New stoma is very recessed and I cannot really see where the skin ends and the stoma starts.  We are getting help from an experienced stoma nurse over the phone who works for one of the appliance companies. 

The stoma is very oval (it is now almost a month since the op). The stoma nurse who is helping us has advised that I gently pull the skin up from the top of the stoma to encourage the stoma to take on a rounder shape and then redo the measurements . She says that it will be a lot easier to look after if it is rounder. 
In all my "research" I have not read of doing this. It does seem to make some sense as the initial hole is likely to be oval from the gravity pull of the skin and fat .

Has anyone done this with a new stoma? Any comments?

 

 

Katy


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VeganOstomy
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14/01/2019 11:47 pm  

I have never heard of this, but I am intrigued! 

With flush or recess stomas, the general best practice is to use a convex appliance. With stomas that are so problematic that it causes ongoing problems, a revision is usually requested.

I'd be interested in knowing how things go for your husband. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
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16/01/2019 3:50 am  

Wow, Kathleen, my stoma is upside down D shaped. I tried an appliance once that pushed my stoma more forward but it really hurt and left bruises and I was very aware of it on, I tossed it with in hours of putting it on. No one told me what the bag was supposed to do and I did not even need it, regardless it felt more of a punishment then anything. I am not even sure why the consultant from the company recommended it for me. I would certainly request a second and third or forth or fifth  surgical consult to ask if this can be made  more normal. Keep in mind here that it was the 11th gastro guy who diagnosed a disease he felt was obvious. I really do not understand why some stomas are like this.  You may need to ask what kind of experience does the surgeon have have? Do all his stomas come out flush this way, and if so why???  I was told that a good healthy stoma should have  at least an inch protruding from the belly. Mine was sewn in place so it has never gone flush. When I first saw mine, it protruded a good inch and a half, maybe more as it was swollen.  I asked anyone who looked at my stoma if that was normal. I did not have a very good stoma nurse and only saw her once. I also certainly had no more then a lookylu apt. six weeks after being home and I felt even then that stoma nurse apt. was a waste of time, not to mention a waste of a perfectly good bag! I drove an hour to it and she spent three min. with me, then an hour home. I was exhausted. I would advise all new stoma owners to ask what you can expect when you see the nurse and how long the apt. will be?  Can she give samples? Can she change the amount of bags I require a month? We all know there are some not great nurses out there, some putting in time till retirement, so you should know what you are going into  your apt. for.  Also ask what is the purpose of this apt.?  If you pay for your bags, take that  into consideration. If you have no real concerns, maybe ask for a telephone consultation.  If anything looks odd or red, get it looked at.  If your in pain, see your doctor too.  Ask how much time is allotted for the apt. and time it from the time the nurse comes in the room, try not to go over.  I have a great respect for my doctors time and his busy schedule, so time your GP apt. also. Make a list of your questions and mark them off as you go. Try not to ask about more then two topics in your apt. and if you need more time with the GP book another apt.  Talk about your biggest concerns first. Also do not be afraid to ask if you can have a 20 min. apt. I do this frequently, and I time those also. If you do not have a friend or spouse to go along in the room with you try and record your apt. When my hubby had pancreatic cancer we recorded all the contents of his apts. on our camera, sound only, be sure and ask permission, the doctor should not have a problem with this. Set the camera to video. I have never heard of making the hole more round by pulling up the skin. Kathleen, in all reality, the stoma protrudes thru muscle and fat and skin. I would think that in order to make the stoma more round you would have to have the hole, or, whatever reworked. I would strongly urge you to go to a different hospital and get a second opinion for your sake and that of your husbands. You have that right. Plain and simple. The way I see it, this surgery is to make your husbands life better and once in place and understanding how to manage things, a lot more stress free and healthy then before the surgery. It should be relatively problem free. Once a stoma is in place it should be comfortable and not cause these kinds of issues. I gather you know nobody else with a stoma so are learning as you go. Is there a support group nearby?  Make contact with them. Have a stoma show and tell.  You may be your hubbies only advocate and that is a hard job. Have you asked if there is a volunteer patient advocate not associated with the surgeon or hospital available? Try calling your local health department or even a lawyers office to try and find one. You are doing an amazing job as it is and deserve a really big pat on the back for what you are doing. I am proud of you for going the mile here! But I would seriously try and get a second surgical consult in a different hospital two if you can. These are my comments and my opinions, not Erics or that of his site.  Forgive me if I have overstepped. 

Linda


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john68
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16/01/2019 6:40 am  

Their does seem to be an issue with ostomates who have a badly formed stoma. Is this due to problems during surgery, or surgeons not knowing the problems that it can cause afterward. A nurse raised this point with me some time back, my stoma is like a strawberry on my tummy. During a check up she said we don’t see them like this any more 

ileostomy 31st August 1994 for Crohns


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Kathleen
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16/01/2019 11:17 pm  

Thank you everyone for your interest, concern and support. Most appreciated. Well, despite my doubts, I tried to pull the skin up gently at the top of the stoma, but it did not change the shape at all. I have yet to relay this to the nurse who suggested it. 

We live in a fairly remote part of Australia so support groups (apart from online) and trying different nurses and doctors is not really an option. Today I measured the stoma (Linda's tips helped) and after a couple of measurements I think I got a pretty good fit around the opening. I am  attaching a photo of the new stoma - apology for it being a little messy - couldn't clean it up any better this time without hurting him. The Eakin seals, which are the only ones I have , leave a bit of residue I think. You can see stitches on either side of the opening which don't want to come out yet so I left them there. (Just 4 weeks since the surgery).

As you can see, the stoma does not look like any of the images of stomas I have seen on the internet and that confused me a little. It just looks like a hole in his belly. Would appreciate any comments as to any special care I need to take with this new stoma.

We have gone 4 days before changing this time so I think we are doing OK.  Will only let it go 2 days next time until the skin looks a little better, but I don't think it is too bad. Moister around the opening than I would like but think maybe that is because the surrounding skin is yet to toughen up? Will try to do a better clean up next change.

BTW I think that our surgeon is one of the good ones, but just doesn't explain why he does what he does very well.

1547698629-Our-new-stoma.jpg

Katy


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john68
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17/01/2019 1:38 pm  

Hi Kathy, yes it’s a very recessed stoma and the fact you have got 4 days wear is very good and shows you are doing a good job. I would agree changing every 2 days until it heals would be a good idea. You said previously you had Ostomy removal spray, spray some on a cloth to help remove residue while cleaning 

ileostomy 31st August 1994 for Crohns


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LK
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18/01/2019 9:05 pm  

Kathy...I am glad I could help. If you have a store you can buy some cheap terry cloth towels in, buy a couple and cut them in two inch squares. They help to massage to skin a little when you are cleaning up. I would also like to suggest  that the next time you change the pouch, that you take a warm rather damp cloth and just sit it on top of that stoma and skin area to clean away the crusty yellow that is happening. It will encourage healing and rid of anything that may cause an infection to the skin. I use two or three small squares whenever I change my bag and gently rub it around to help give the skin a bit of TLC in the pouch change. I did this with mine and it helped that tender area toughen up a bit.  When the skin is under the adhesive all the time like it is, getting a bit of blood flow to that area is a good thing. I did not like the sticky thing left behind from the eakin seal, and I no longer need to use it. It is hard to get off, but I used a warm wet cloth to help soften it more and then role the residue behind. Ten years now with my stoma and my skin under the  pouch is actually softer then the rest. I feel badly for the men that have hairy tummies like that. You are doing well and when the yellow is gone and healed up, I think your only battle is a good fit. Have you tried flattening the seal more in your fingers to cover a wider area? It may help with avoiding the white raised area from pressure we can see in the photo. How is your hubbies health aside from this? Is he accepting of his stoma? Encourage him to name it.  I gave mine three names at first. I have settled on R0se...corny, but the name is because it really is a beautiful thing compared to how things were before for me. Thanks for the update and the picture. I still have no idea why a stoma would be made like that but if things are going good and you are okay with it, that is what matters. your doing well Kathy!  Keep up the good work! 

 

Linda


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Kathleen
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19/01/2019 12:45 am  

John and Linda and Eric and everyone - you guys are excellent and I am taking all your tips on board. As far as the seal is concerned I am just trying out a different one to see if I have a better result with less residue to clean up. 

I tried to pull up the skin again and the hole became round while I did it but, of course, went back to the oval shape when I let go. Don't see how that can work but anyway I gave it a go.

Will let you know how I am progressing. Linda - my husband has named the new stoma twice now. The first name was "Farty McFarty" and now he has renamed it "Gaseous Clay"- have no idea where the inspiration for these names came from.

Katy


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Dona
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19/01/2019 5:13 pm  

Hi Katy,

Thanks for the update. From the picture you posted it looks like the area around the stoma is in good shape. The skin looks good. I see that the stoma is pretty flat. That happened to me too during the healing process, which lead to some leakage. I use a convex wafer AND a barrier ring now, and that really helped with the problem.  Since your husband has just had surgery things may change with respect to how far the stoma protrudes. And, as he heals it may push out more. I think it takes a while to get to a new normal state. 

Always talk to your doctor or stoma nurse before you try convexity in the wafer ( or base plate...people call it different things).

My stoma is round , so hopefully more people like  Linda who posted just before me will add to the conversation.

The best of luck and healing to you both.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Kathleen
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20/01/2019 12:08 am  

Dona, Thanks for that.  We are using a convex wafer and barrier ring and that seems to be working perfectly.  Having looked at images posted on the internet I am pretty sure that this type of stoma is called a flush stoma. Seems to help me a lot when I know what to call things.

The only products that I want to experiment with at the moment are different barrier rings to avoid so much mess and a two piece option so it can be burped which might help with the build up of gas. The nurse that we managed to see at the hospital suggested convex Adapt Cera Rings. Personally I think that that would be overkill and maybe a little uncomfortable. The convex wafer with a thin flat barrier ring, seems to be working well for us.

Thanks to all the kind comments I am feeling a lot more confident about everything. 

Katy


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john68
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20/01/2019 10:27 am  

Hi Kathy, Can I suggest the Salts barrier ring, I have used the Eakin in the past and yes it’s a great product but I found the salts very flexible and left less mess when removing. 

ileostomy 31st August 1994 for Crohns


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Dona
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20/01/2019 1:52 pm  

Hi again Katy

I use the convatec/eakins barrier rings. They are hard to remove ... very gluey. But i think it might be that very stickiness that makes them work for me. Everyone has different skin so? I remove them in the shower and gently scrape and wash them away ( they can make a mess of the tile or shower floor). But its good to experiment with only limited things at one time.

 

The gas! Ahhh yes. I can see from the names that your husband has given his stoma that it is an issue.

 I would highly recommend the Osto EZ- Vent. There is quite a lot of info here that Eric has, thankfully, put together. Also lots of post on the forum.

I rely on these.

You can get them from Amazon ( at least here in the US).

 

Good luck and let us know if you have further questions. Be well.

I think they are easier to install on a two piece bag, so that might be a  consideration for you.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Kathleen
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20/01/2019 6:22 pm  

Hi John and Dona,

I have just ordered samples of the Salts barrier rings. 

I have seen reviews on the Osto EZ-Vent and they look like the thing we need. However, they are not available in Australia (amazing when you consider all the products we can get here) and I have tried to order them through Amazon and Ebay but the companies will not deliver to Australia. I have just sent a message to the company in the USA to see if they can suggest anyway I can get them.

Katy


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Dona
 Dona
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20/01/2019 6:41 pm  

Hi again,

It is surprising that you can't get them in Australia. Maybe you know someone in the UK or somewhere that could send some. Good to try the manufacturer.

I hope some of the big ostomy supply companies will start to make something like this that is already attached to the bag.  The so called filters that come pre installed really don't work.  I used to get them, but became frustrated when after about 4 or five days with the bag they begin to leak FROM THE INSIDE OUT THROUGH THE  FILTER! ...Not what I was looking for. I began getting the bags without filters and then adding on the EZ- Vents which work great. It does save me getting up at night to 'burp'...ha. And, I found I can do it discreetly on an airplane or in a car.

Let us know how you do.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Kathleen
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22/01/2019 1:30 am  

I contacted KEM Enterprises who will send me some samples of the EZ vents. They have told me that they are currently in the process of making OEV available in Australia.

They did give me the name of suppliers that will ship to Australia. When I attempted to order from two of them the postage and handling costs to Australia were extraordinary. Well in excess of $60 on top of the cost of the product. I have bought items online from USA sites and not paid anything like that for items that weigh a lot more than these would.

Anyway, I cannot wait to try the samples and if they work well, hope that they get approval on our stoma scheme soon.

Katy


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Dona
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22/01/2019 5:21 pm  

That sounds like progress anyway.

Just for comparison they are 16.50 ( US$$) for ten from Amazon.

https://amzn.to/2G7V7BU

They weigh next to nothing so it does seem that shipping SHOULD be minimal.

Good luck. I hope you get samples at least and try them out. Gas can be a real problem , as you know.

I also think when my bag gets full of gas ( like at night) and I don't vent it, my output can't get into the bag as easily and I wake up with nausea. Not nice. I wish you well ( and your husband!).

 EZ-Vents are much like the part that one uses to blow up a beach ball...  a kind of funny image is brought to mind.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Susan5
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27/01/2019 9:46 pm  

Hi Katy, My stoma is very similar to your husbands.  Flush and oval.  My nurse also suggested I gently pull up the skin to make it more round before I place the wafer. I find no problem doing this.  I also tried the adapt CeraRing and now I use it all the time.  I’m very happy with it and feel more secure. Just make sure that if you decide to try it make the opening of the ring wider then the opening on the wafer before sticking it onto the wafer.  They do shrink some.  Also I do a complete change every 2 days and use 4x4 sterile gauze to soak in warm water for easy cleaning and then just throw them away.  Alcohol free adhesive removal pads are wonderful.  Good Luck!!

 

 


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Kathleen
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27/01/2019 10:24 pm  

Susan, thank you so much for all of that information. I did order some sample adapt CeraRings oval in the smallest size that they have, but they are just a little larger than my husband's stoma so I was reluctant to try them. If I try pulling up the skin again for a rounder shape I think that that just might work. Will then make the wafer hole larger to match the new size.

I also ordered a sample of the smallest Salts Barrier Ring (we had great success with these rings with the previous ileostomy) but again the smallest size was a little large for the opening. I know you can stretch them but not sure if it is OK to try to make them smaller.

Do you use a convex wafer as well as the CeraRings?

Does the hole keep its shape after you apply the Ring? Really worried that the ring may not cover the skin if his opening shrinks back, but the Ring stays the same size.

Still having trouble cleaning around the area as my husband gets very concerned but I am getting better at it and once I stop using the Eakin rings I think I will find cleaning easier. 

Katy


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john68
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28/01/2019 4:53 am  

Hi Katy. The barrier ring can be shaped pulled broken and even squeezed and rolled to work to the size or shape required. Even just a part used to say fill a dip or hollow. Try taking one and just practice with it before doing a change 😀

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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28/01/2019 3:31 pm  

Yes, John! Good point. You don't have to put it on as a ring!

Some people roll them, some stack them, whatever gets the job done!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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