Stoma Revision - Frustration with Leaking and Pouching

Aloha all,

I have had my rosebud (colostomy) since '97.

The rosebud shrank in size over the years, I had troubles getting anything but linguine to come out, and a stoma revision was suggested by the butt-surgery bigwig surgeon in my network.

So I did that. Didn't receive much information beforehand, had to make an extra appointment because I wanted to make sure she understood that I had concerns about having enough colon in my fat layer to make a good stoma. I emphasized that I did not shy away from loosening it from the muscle layer to "pull more out" in order to give me adequate length. Going by a 6+yo CT scan, she assured me that there was enough. Ok, you're the doc, I guess you know what you're doing.

Surgery day - the pre-op experience was full of red flags for me; these people did not seem to be on the same team, there was a red/brown stain on the gurney sheet, the anesthesiologist leaned in to me to ask me if I had a problem with him (yeah I was cranky but seriously??), and I almost walked out. I wish I would've.

This new stoma... OMG. It's pretty, hole right in the center, good height to where it meets the skin, but the daggone thing is 2 inches below my abdominal skin!! It's like a cherry sitting in the bottom of a funnel! The edges go straight up - I can't get anything to stick to the sides and the stoma pulls under the wafer no matter how convex it is!

I have a bathroom full of samples, including some customs from Nu-Hope. No matter what I use, how much I layer rings/paste/etc, how tight I belt it, the peristomal area is constantly soaked in poop, itches/hurts, and I am pissed.

I voiced my pouching frustration during the post-op appointment and the only response I got is that the whole thing could be relocated - something I was very clear about NOT wanting to do from the get-go ("no problem, we can just make it bigger"). The only thing I can think of is doing lipo around the area to try to even out the area.

Yes, I know there are many difficult stomas out there and I have been very lucky throughout the last 22 years. I could wear a wafer for over a week easily, wore them for 14 days in my uninsured years when I was buying stuff from eBay. I could always trust the appliance and the ostomy was never in the forefront of life. Now... leaking all the time, having to leave work constantly because of it, getting more and more pissed about it.

Thank you for reading and letting me rant.

I'm curious if any of you with difficult-to-pouch stomas make some of your own supplies. What I need is a very flexible funnel flange and am going to make some silicone rings (although I have tried the Silvex rings and they definitely don't stick... but they're also way too shallow). Or: make some funnels out of hydrocolloid sheets. All in all, I'm super resentful that I have to go through such lengths... nothing prepared me for this deep hole in my belly.

'

Hi Bellily,

Wow, nightmare from hell, eh? From the way you describe it, and if I'm picturing it right, it sounds like you need a silicone funnel to bring your output up and over skin level into the bag without touching any side skin along the way. You mention the sides are straight up........are they literally, or are they even a little slanted (ie, funnel shaped). Again, I'm not working off a pic here, so if I'm seeing this wrong let me know. So what if you put a ring of Hollister paste or similar, around your stoma, stuck the narrow end of a silicone funnel that had a flange on the wide end (they make all kinds for baking purposes) around your stoma and into the paste....and was deep enough to put the wide end flange just above your skin level of your abs.......say less than 1/8" above. Then you could put a barrier ring under that wide end of the funnel (between the funnel flange and your ab skin, and a convex or non-convex (it won't matter at that point because the funnel flange is flat) over that. So basically the small end of the funnel is glued around your stoma with the paste and then floats on the sides. At the top the barrier ring under the wide end of the funnel takes up the space between the funnel flange and your skin (to keep the sidewalls from flexing too much and breaking the lower paste seal) and then the barrier and its adhesive bandage seals to the flange on the wide end of the funnel and keeps the funnel from moving around as you do your daily stuff. You digging what I'm selling?

If the sides of your hole that your stoma sit in are really straight (parallel to each other) than you just need a silicone tube with a single flanged end. I'm thinking of the nozzles they use to put cake icing on, but in silicone. I'm thinking they make silicone pipe liners, but not sure about the flanged end. I'm sure a little digging in the scientific or plumbing community could find what you need. And you probably need to talk to Bill..........he makes everything Stoma related..........he might just enjoy the challenge.

Think about my suggestions and let me know where I'm going wrong or not understanding the physics of your stoma situation...........we can figure this out!

Regards,

Bob

A silicone funnel? For baking purposes? I'm very intrigued by the possibility of using plumbing/baking/scientific supplies and all you're saying.

You got the shape right mostly. It's straight-up with a tiny bit of flaring for about 1.5" from stoma edge to where a normal convex flange could reach it. The sides of the funnel touch the body of the stoma most of the way around.

I hope this Bill fellow sees this thread because I'm very curious how he makes everything stoma related and would like to pick his brain.

Thank you for replying and making my head explode with new possibilities. :)

Hi Bellily,

I just sent Bill a message, so he should be on here as soon as he can. I was thinking about your situation while I was out digging a new pond for my ducks. So basically, all we need to do is protect the skin on the sides of your hole that your stoma is sitting in. I'm almost picturing putting a rubber tube down over your stoma and filling in the area between the outside of the tube and your skin with something like barrier paste, probably easiest applied with a syringe without the needle on the end. The tube would keep the paste from losing shape and closing off the stoma hole, and the tube just needs to stick a little above the skin level. Then a regular barrier ring and barrier would work just fine. When I finish up outside, I'll start hunting around online. The hardest thing with such searches is knowing what things are called. I'll be back in a bit.

Regards,

Bob

Hey Bellily....Mush here. Could you post the picture here that you used on FB? Have you ever considered a one-piece bag? I use one with a convex barrier ring on the bag and a flat circular ring that I stretch out over the stoma. I get a good seal using these two rings.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hello Bellily.
Thank you for sharing your situation with us and providing such a graphic description.

I do like all of Bob’s comments and suggestions, so will not go down the route of repeating what he has already said.
I have done a fair bit of experimenting over the years, but your problem is not one that I have envisaged before. What I would say at the outset, is that many of my experiments with readymade objects such as manufacturer’s products and plumbing equipment have not been suitable because they never quite fit. Thus, I am relatively convinced that the most effective thing to do is to make stuff to fit the specific set of circumstances, rather than stomas in general. I like your idea of botox but have heard so many bad outcomes that I would be reluctant to go down that route.
I have a relatively normal set of circumstances with my own stoma, so I have been able to make and shaped baseplates out of flat plastic (obtained from the sides of 1 & 5gallon containers) cut and shaped by heating and bending. I should say that I have made a number of these before I managed to get ones that are a comfortable fit, and suitable for my needs.
With regard to your problems, I would probably approach it in a different way and, fortunately, I have also been experimenting with making a nose pad for my CPAP machine. This has similar challenges to that of making a device for a stoma, in that the area up the nose is very sensitive and it is not advisable to be making moulds out of such materials as plaster of paris (which gets too warm as it hardens.)
What I use is Siligum moulding paste, which comes in two separate containers. The substances are mixed together to form a paste, which is then applied to the area you want to mould. It sets in about 5 minutes. Once you have an accurate mould of the area, you can use that to make silicone castes of the shape you want to cover/support/protect . The silicone needs to be what they call ‘skin-safe’ and fortunately, they produce this for the make-up industry for false faces etc. I use Polycraft ZA22 Skin Safe Thixo Body Silicone.
If you did not want to use a mould, the silicone could be applied directly to the skin as this is what it was designed for. In fact, I think I would give this latter way a try first. Think of it as an external botox solution, except without the side effects.
The reason I use moulds, is that it is much easier to shape, cut and add to the experimental designs if I am working on a bench rather than trying to struggle with my own body. (it’s the reason they have professional make-up artists to do this type of work.) In fact, if you can find a make-up artist and explain your problem, they might be able to make you a silicone ‘mask’ for the area without too much difficulty.
If you can make a silicone ‘mask’ for the stoma surround, then a medical adhesive should hold it in place. ( I use a spray-on one from Coloplast). The ‘mask’ should include a flat surface upon which to attach whatever ‘normal’ bag you use.
Again, I make my own baseplates out of thick plastic so that I can attach two adjustable belts , you can see an example of this on the photos on my profile.
In the background, you might also make out a 90% waste bend, which I attach to the baseplate when irrigating to guide the output downwards into the sleeve.
As you say you have a colostomy, I would definitely recommend looking into irrigation, as it makes life a whole lot easier.
I hope these suggestions are useful
Best wishes
Bill
PS: If something doesn’t quite work out first- second -third time, etc. don’t give up if whatever you are making looks as if it has promise. I have sometimes made up to ten version of the same thing before getting it right. I think they call it research and development, and it can take even the best of companies years to produce something that is suitable for general use.

Good morning Mush and Stateside folk, good afternoon Bill,

Mush and Bill - thank you for writing. I'll attach the graphic I had on Facebook.

🔒 Login to see image

Bill - thank you for the extensive reply, full of ideas and stories of what you've been doing.

Firstly, not Botox, but lipo around the area. Botox would do nothing for the area.

Irrigation: I have tried it to make that work a few different times since I had the original ostomy and came to the conclusion that my colon wasn't having any of it. It likes to produce when it wants to produce, in the morning, the motherlode, and trying to control when it does its thing made my whole body feel bad (light-headed, cramps, malaise). I never got more than 24 hours out of it anyway, plus it takes forever, makes a mess with lots to clean afterwards (the sleeves, etc), so I abandoned that. Still have my kit though and find that those irrigation sleeves are fab for when I have to do a colonoscopy bowel prep. Haha. My impression is that ileos really wish they could irrigate... This leads me to believe you two also have ileos because every ileostomate I have talked to brings up irrigation with a gleam in their eye.

So I had another experiment with silicone yesterday, just trying to make a barrier insert, not using one yet, and continue to run into snags in my process. I'm using the funnelly top of 1-liter plastic bottles with another insert to make the hole. Try one: failure, didn't use any release agent, couldn't get the daggone things out without tearing them to pieces. Try two: mostly failure, used adhesive remover oily stuff as a release agent but it's not working well. Need a different substance... I intend to use them just the way you describe: use some adhesive, plop it in there, put my usual wafer on top. Yes, I'm using skin-safe silicone, sounds very similar to what you described, Bill. It's 00-10 hardness/softness, and seems to be the same stuff that the Trio-Ostomy Silvex rings are made of. A possible complication that could happen... My body might not like the material, I know this is weird. Of the plethora of samples I have tried, the Coloplast Mio, also made of a silicone material (although pretty hard, not nearly as pliable as they advertise it to be), gave me a strange claustrophobic feeling... I had to get that stuff off my skin ASAP. Strange, I know.

Here's a picture of my mold making approach thus far (sorry... it's on its side):

🔒 Login to see image

Thank you for the tip of using heat/bending to create a mold out of plastic; that might work and I'll keep you posted on how it does. I'm not keen on making a mold of the actual area and think I can get a good approximation another way. Very hopeful about the silicone.

Another idea I am going to try is use hydrocolloid sheets to make a 2-ply funnel, like the way Bob describes. 2-ply for (hopefully) longer wear time. Make a funnel, stick it on (funnel would flare out enough for the wafer to stick to as well), cut wafer hole bigger and apply, then add another funnel hydrocolloid sheet (so the edge of the wafer hole would be sandwiched in the hydrocolloid sheets).

Mush, regarding a one-piece: I have that right now and I don't like it. I am like Goldilocks, need to have everything just right, and just right is being able to snap a bag on and off easily without doing a whole change. I don't like filters either. I prefer being able to burp the bag from the top of the coupling. But... for now it's one-piece and lots of tape and ridiculous belting.

Thank you again for the thoughtful and detailed replies full of excellent ideas - means a lot to me and I send you a cyber hug from afar.

Hello Bellily.

Thank you for the diagramme, which is very helpful.

I can only say what occurs to me as being potentailly useful in these circumstances and you will need to assess and ascertain for yourself whether it might be worthwhile persuing. 

Firstly, I would accurately measure the diameter/circumference of the stoma, which is very important for sorting out what would be the right size 'ring'. There are some very useful measuring charts from almost any manufacturer for this purpose. My own stoma is conveniently 35mm ( 1.3/8") and it is more or less circular, which just happens to be ideal for adapting water waste pipes. However, I would point out that 5 LITRE liquid containers such as those used for shampoo in hairdresser's shops, have screw lids which are about the right size and have a very convenient flat flange for making attachments. There are a load of different sizes on these types of containers and I found the larger ones are on the Karcher  pressure washer soaps and the smaller ones can be found on all sorts of containers from liquid fertilizer to soap dispensers.  As you may have guessed, most of the containers I have around the house or in my sheds, However, I often walk around the shops, examining all the would-be suitable containers for potentially suitable screw tops with that flat flange.

It must be born in mind, that I am usually making my devices to fit a stoma that connects at 90% to the skin. In your case I am envisaging turning the whole thing the other way around to slot down into the groove between the stoma  and the skin, but the principles remain the same.  Once the diameter is right, then the screw part needs to be cut to the right depth, or even slightly shorter, to allow for the softer covering so that the hard plastic does not do any damage. Before I would add the covering, I would pad out the screw-thread to the average shape of the stoma, so that the whole of the gap is likely to be filled, or at least that side of it that presses up against the skin. almost any filler can be used for this, as it will be covered by a protective layer. The silicone rubber is a useful material because it is soft and pliable, which means it will have some movement when the stoma changes shape. I have used electrical tape and plumbers tape for this job  but a more permanent and 'prettier' job can be done with plaster of paris or modelling clay, which can also be paired down to the right size if it doesn't quite fit first time. 

With regard to the outer layer. In the past I have tried and old bicycle innertube to be quite a nice cosy fit for my sized screw thread and it has the advantage of being able to bend onto both sides of the protrusion with quite a tight fit. However, I have also found that a (new) condom will do much the same thing and the rubber is much softer and more maleable. The silicone rubber moulding material (mentioned in my previous post) would also be ideal for this purpose. But it would depend upon your own preferences. 

The 'normal bag' can then be stuck to the small flange and, if necessary, a belt system can be used to keep it all in place. As already mentioned, I use medical adhesive to keep mine in place because the mucus from the stoma tends to make the plastic slide around if it is not stuck down. I have tried double sided carpet tape for this, but it is likely to set up a reaction on the skin, so I don't recommend it.

One of the things about trying to share thoughts with other people about experimentation, is that not everyone wants to try the same or similar experiments and I don't blame them for that, as some of my own have not been worthwhile in the final analyis. However, there is one thing that I would try, if my output was continually liquid, as is often the case with ileostomies. Before my stoma, when I was faecally incontinent, I used an anal irrigator which had a small  inbuilt pump-up balloon which stopped the output while water was being pumped in. Looking at your diagramme, I could see some potential for using an adaptation of such a device to insert an inch or two into the stoma so that the output would come through the tube and the balloon would provide the necessary pressure to the skin to hold it in place. I do not think these anal catheters would be available without the authorisation of someone medical, but it might be worth considering if everything else fails. Alternatively, something could be made to immitate that catheter: I have made several devices like this but with larger outlets and thaey have worked reasonably well. However, because I have had no real need for them myself, they remain tucked away to remind me that I have already tried these things. 

Also, some time ago, there was a post on here about an internal device which had a valve which could be opened to empty and closed again when the process was finished. That might be worth looking into for your particular situation?

Best wishes

Bill

Hi Bellily,

Yup, your pic is what I was envisioning. So here's your pic with the silicone funnel and the barrier ring to bond it to your skin. Also shows the paste around your stoma.

🔒 Login to see image

Here's 2 ideas from Amazon..........they make thousands of silicone funnel shapes, they just go by all different names. The accordion nature of the one on the right would allow it to move in and out with your body. The red one on the lower left has more flange area to attach a barrier to. And I'm not suggesting silicone is the only material to consider. The funnels on the left might actually be a little too flexible for what you want, and the red caulk tubes on the right might be too stiff. But you get my drift on how to approach this. And thanks for the image.

Regards,

Bob

🔒 Login to see image

🔒 Login to see image

I'm liking these accordion funnels, Bob.

Kudos on the excellent diagram. :)

Bob.

I too like the funnel shape, and your diagramme is excellent for describing them. In the past I have cut the irrigation cones into this shape, but found that material was too thick and stiff to be of much use for my needs. However, it might just work for Bellily. Maybe my concept of padding out the perpendicular of a container spout to fit the gap more precisely  would be too fiddly compared to the cone shapes. However, the size, depth and shape of the hole will determine what you will, or will not be able to use. 

I have also looked at using calving teats which are approxinmately the right size and shape, but the only ones which were anywhere near what I wanted were only available from Denmark and I would have needed to buy them by the dozen. (I only needed one for experimentation purposes!) 

Some of the teats used on babies bottles are wide enough if the stoma was relatively small, but they would not be big enough for me!

There is a product called a stoma collar, (by Salts Healthcare) which I have used in the past to good effect,  but I did not think it would be suitable for inversion to accommodate the needs of Bellily. Nonetheless, I have also used it a cover for some of my other devices and uit worked quite well. 

It's all about looking around to see what 'might' work and then going for the best option. After trying as many options as possible, I plumped for making silicone ones to fit my own stoma. 

Please keep us informed as to how your efforts to find a solution progress as I feel sure that each and every idea might be of some use to someone, at sometime in the future. 

Best wishes

Bill

Hmmmm.............calving teats...........gives me an idea. Check these out......rubber and they compress. Not perfect, but another category to investigate. Also on Amazon.

🔒 Login to see image

And these are Wildlife Nursing Nipples, also on Amazon

🔒 Login to see image

And these scupper plugs would work if you cut out the center... plenty of flange area.

🔒 Login to see image

Ya know... now that I think about it... if you end up making your own mold and pouring something like the photos above yourself, just make the mold have a large rectangular flange that you can tape over and cut the ring off a barrier that the bag attaches to (from a 2 piece system) and mold the rubber over the ring. With that ring now part of the flange, you can attach your bag directly to the flange and bypass the barrier altogether. You just need to tape the flange to your skin at the periphery.

You got me thinking about making something similar for myself... hmmm...

Later,

Bob

Y'all are awesome... calving teats!

A little while ago, right after I replied last, I got to Googling some more and found breast pump inserts (for big stoma-sized nipples), which got me thinking... then my brain maxed out and I took a nap. Now look at the craftiness that you've come up with. : )!!

I think I need to focus on mold-making first; the next step there is the release agent/substance. Don't want it to be some crazy toxic stuff, that's why I tried ostomy adhesive remover first, but that didn't work at all.. Wait, what if I used barrier spray? Can't waste any more of my silicone to try though because the super-soft 00-10 is "currently unavailable" (.. you can tell my brain's going to max out again any second).

Hi Bellily,

I was out at the supermarket and checked out the baby section for bottle nipples, etc. The replacement nipples are made of silicone and are a good medium soft, so not too soft where they barely keep their shape and not hard enough to not flex when needed. They were good. And the size seems just about right, depending on where you cut the end of the nipple off. So if you want to play with something cheaply before you invest in something substantial............just grab some replacement nipples for formula bottles or for pacifiers and have at it.

Uhh.........we fully expect to see pics of prototypes by the morning. JUST KIDDING!! I'll keep my eyes peeled for other suitable solutions, but keep us abreast of your progress.

Regards,

Bob

Aw, you checked out the nipples for me, Bob. I planned on doing that but then got sucked into trying to boil and freeze my existing silicone molds to make them let go of the plastic bottle molds (didn't work).

Will definitely keep y'all abreast of the progress... I can feel that something is going to work. : )

Hi Bellily,

They make silicone mold release in a spray can in many varieties. But if you don't feel like going out, you can use Vaseline. Just a bit, not slathered all over the place, should do the trick.

Regards,

Bob

Was trying to avoid a grease... just in case I didn't wash it off all the way. You know, stickiness.

But appreciate you adding the suggestion. Grinnin' atchoo

Hi Bellily,

Petroleum jelly is easily removed with either Dawn dishwashing soap and warm water... or rubbing alcohol. Just FYI.

Later,

Bob

Bellily,

Check this out... it's designed to be worn with the collar outward to protect a stoma. But if you flip it over and wear it with the collar down, it should be exactly what you are looking for.

http://www.stomawise.co.uk/ostomy-pouches/salts/salts-dermacol

Regards,

Bob

Hello Bob/Bellily. This is the same stoma collar I was mentioning earlier. I think they are really useful and very soft and floppy. That will probably be the problem when trying to invert it for Bellily's situation, as would predict that Bellily will need something a little more substantial to hold in place between the skin and the stoma.  

Nonetheless, I would recommend anyone to get samples, as they are very useful for experimentation purposes.

Hello Bellily. 

One of the things that I use daily is a 90% bend attached to one of my baseplates. It is a bit bulky to wear but that doesn't matter in my case, as I wear it during irrigation and then in the evening and overnight , so it doesn't interfere with anything else I am doing.

This concept might well be useful to guide the output away from the stoma area and avoid all those problems associated with output affecting the skin. I can imagine that the skin fold onto the stoma as described in your sketch might be a problem in that regard.

If it is of any interest to you, I incorporated a very short piece of waste pipe into the baseplate and shortented one end of the bend to decrease the amout of protrusion. The bend can be easily detached for if and when I happen to be going out anywhere and don't want the thing to show. 

Just another idea to consider.

If I was as talented as bob and you at drawing sketches, I would do so. Unfortunately, I don't have that talent.

Best wishes

Bill 

Bill, thanks for the input on that last idea I posted. Understand about the tube part being too flimsy, but maybe the whole thing could be used for a mold and more substantial silicone can be used or the wall thickness increased. I think there's a lot of possibilities.

Regards,

Bob

Waking up to more crafty ideas from Bob and Bill.. hehe

Bill, you're in the UK and the time difference makes sense, but Bob, do you sleep?

Nope, not wearing a 90D bend pipe, but it makes sense for irrigation purposes.

I looked at the salts thing and first frowned but then it made more sense as a part of a mold, so thank you for that tip. You know that thing costs about 0.02 cents to make and I wonder how much they charge for it.

But as I said earlier, I need to figure out if my bottle molds will work before going on to the next thing, which will probably be the accordion funnels (their flexibility doesn't daunt, that's actually good because I don't want something rigid in there tearing up the stoma/skin connection). The reason I want to pursue the bottle molds is that they are solid (and squishy), so there's no empty space (except for the stoma hole) that can compact or slide away (in theory.. proof will be in the pudding). Keep your fingers crossed.

The work week begins... My job entails a lot of movement and stooping and lifting, so that's another consideration for whatever solution there is: it needs to move with me. I'm belting up and pray I don't leak today.

I'm wishing you both a fab Monday, where everything goes perfectly.

: )

Hi Bellily,

Cool... sounds like you have a plan. I'll keep my eyes peeled for things that might be of interest to you. The accordion shape is also called a "bellows" when you search. I'll leave you to it... just shout if you get stumped.

Regards,

Bob

The cone itself can still be viable even if flimsy if you put a bead of stomahesive or such around the "lip" on the skin side. If you use your finger to push the cone into the stomahesive and skin below (and perhaps a qtip towards the end) I think you might achieve a pretty good seal around the lip.

I have to admit that with my stoma revision in January, this particular post hit home. Since my stoma is at or below skin level around the perimeter, it's been difficult to fully protect my skin. Who doesn't enjoy the sensation of a cigarette being put out on their belly? While I still hope for the rosebud, now that I'm aware of other products, I at least don't entirely feel I might be going from bad to worse....

Dave

Yup, Dave, who doesn't enjoy the sensation of a cigarette being put out on their belly.. Man, are you mad like me? When they put in stomas, they make them level with the skin, so what makes those docs think it's okay to put it in a cave if you need a revision? It burns me up ... bad.

If you don't mind me asking, how deep is your revised rosebud? The edges of it? And what brought on this revision? Maybe we can be belly-cave buddies and share what's helpful and what's not.

My revision is in January. My understanding is that the opening in my abdomen will be widened to reduce the threat of stricture. He didn't offer much hope in advancing my stoma out to get that ever-desirable rosebud look.

Dave