Challenges of Managing a Near Flush Stoma with a Belly Fold

First off this is after the removed bag with just residue no-sting paste and wafer. As you can see for some reason the paste didn't harden after 24 hours (as it should have just peeled off) and didn't adhere to the damaged skin.

Apparently this is a product defect of some sort, quality control or some sort of environmental issue perhaps. A grave concern as I've been trying for months now and always getting leaks, even with just a regular coat and wafer like normal.

 

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I removed the residue paste using a coffee stir stick scraped sideways onto it, then removed off the stick using toilet paper. Then I use a rough side of a plastic sponge to remove the film. (No picture, but it shows a nice clean stoma)

 

What I did next here was mix some no-sting paste with stoma powder to hopefully get it to set more properly. Applied a thin layer all around and checked that it stuck onto the damaged skin first, if not I removed and discarded it, then blow dried the area further and tried again. Then applied cut extra large moon barrier strips all around the stoma and pressed down all around.

The cardboard is protecting my belly button scar tissue from the grabbing effects of the adhesive.

Edit: I have since switched to stuffing the belly button hole with toilet paper and replacing the cardboard, with no adhesive ability, with a 1/2 cut extra large barrier strip because I was getting tiny leaks in that area as that's a very weak side due to little downward pressure by the belt.

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I gave a topping of skin protectant on top of the barrier strips and dried as their surface is smooth and may not bond as well to the paste to marry to the wafer.

(Edit: In my lastest incarnation I put another layer of 1/4 cut extra large barrier strips all around on top and overlapping the other ones..)

 

Next I squeezed out two rings of paste about 1/3" away from the stoma and scored the top to create groves which I dusted inside with stoma powder, then mixed together and below you see the results.

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The paste looks thicker than it is, the lighting is causing a shadow. It's wide as to provide maximum holding power as I have a belly fold there and my convex wafer needs to bend some. It's also thicker on the left side to combat separation that always occurs there because the belt is weaker on that side than the other with the graneoluma. I did previously weaken the wafer so it will be flexible. I mean I really worked it as much as possible, even the convex bubble which many makers like to keep stiff it seems. But my belly fold goes right through the stoma so the bubble has to be flexible as well.

 

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As you notice the paste does not encroach over the stoma. I now make sure the paste marrying to the wafer is a bit more activated and is applied slightly away from the stoma so when the wafer is pressed on it doesn't cover the stoma which can cause a clog. Since I've previously protected the skin with the thin coat of paste and cut barrier strips, there isn't a need to get the wafer level of paste so close to the stoma and risk a clog.

 

And now the external barrier strips and the belt. For the finished product. 😊 

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I know I've got a good bag on because I will feel no pain. Not even on my tiny bump of a graneoluma. 

Now of course is longevity which I've had instances using this method lasting me up to nine days, but that was a fluke. It leaked on top of the stoma barrier strips and dried, grew mold even. 😆  So 7 day bag wear time is my limit regardless. The barrier strips under the wafer are protecting the skin from output in case there is a leak between the wafer, the external barrier strips connecting the wafer flange to the skin create a container pocket which small blowouts are contained and often I won't even know about it sometimes. Which is great for driving etc. where I just can't slap a new bag on at some gas station bathroom because of my high output otosmy.

Hopefully I'll get a good 4-5 days outta this bag and allow that damaged skin to heal up. That's been my problem, I drive and bending over causes strain and leaks because the convex wafer bubble isn't flexible. Now come to find out the paste isn't even setting up correctly.. 😢 

Hollister did come out with a rather flexible convex bubble and I aim to order some samples to try. Coloplast's convex bubble is stiff and I have to work it some. Because my belly fold goes right through the stoma, others may not have this issue. The convex with the belt is designed to push around a low stoma and cause it to pop up further, but by weakening the bubble as to flex in my belly fold that's no longer occurring. So I'm building a cone wall instead using the layers of thin paste and cut barrier strips.

Because there is so much height involved I often suffer with pancaking issues as thicker output often just clumps there and starts forming a bubble which I feel puts pressure on the paste connected to the skin. I also feel for the bubble begining to form as to catch it before it gets worse. 

I dump and use a couple of drops of antibacterial liquid soap followed by water bottle to wash and flush the bag. Then rinse with water but close up, then head to lay on my back to get the water up around the stoma and massage the pancaking loose. I've learned NOT to squeeze the bag less that pressure forces under the paste causing a leak to occur. So I rinse again if need be and usually the leftover residue soap does an acceptable job of mitigating future odors. But sometimes not, which then I add just a drop of the soap and a little water to the bag to mix with future output. At least the odor is not horrific as not doing anything at all or using just cover up methods like mints.

However I've mitigated the pancaking issue mostly and likely the stoma extending itself out much, if any, by altering my diet to eating only foods that always turn to liquid upon exit, so output just drizzles out instead of creating pressure to squeeze out. Meats with no hard parts, potatoes, soft rice, pasta and so forth. Avoiding eggs, vegetables (unless a juice), or drying foods like bread, crackers and cookies etc.

Near flush stomas with a belly fold are not easy to handle and my method requires a lot of prep time with a quiet stoma.

I've partially solved that problem by fasting long before a bag change is due, then if just bile is entering the bag (a thick dark syrup void of anything) then eating something like applesauce and waiting until nothing enters the bag, then go to work removing, showering (using just liquid antibacterial soap to sanitize and wash) blow drying well and applying nothing else. Any oils, lubricants, ointments etc cause the paste and even the adhesive not to stick. I only use no sting paste, the skin will heal itself just fine by itself given enough time from being attacked by digestive enzymes and that can't occur if the paste won't stick, especially to wounds.

My problem is when I get a leak or blowout requiring the bag to be removed immediately, regardless if the stoma is quiet or not..I have put a plastic milk crate in the shower to sit and wait it out, water running off my chest to flush output away. Then after awhile I think it's calmed down, towel dry and even blow dry the area well, start the prep and then the stoma starts going off, causing me to abandon the process and head back into the shower. 😢 

So I'm working on something customized that I can lay on that seals around the stoma and collects output using gravity until it calm down which can take hours. 

 

 

 

 

Looks like a hassle and pretty gross, glad I don’t have to deal with any of that. 

G-Day Shamrock,

After seeing your photos, I reckon you need to get a resiting of your stoma and have it made longer. If you start from scratch, you will be 100% better off. This is me trying to help you, Shamrock. Regards, IGGIE

What is nice about this design is if a leak between the wafer occurs, the stoma barrier strips and the external ones make like a pocket to contain the output. There is an area of clear skin that I may feel it, or sometimes a little leaks through a crack somewhere thus letting me know there's a problem.

I likely need a revision, however, this was a temporary ileostomy depending upon a biopsy of what occurred to my intestines and colon which came back cancerous by mesothelioma (asbestos). I'm kind of glad actually because I got a settlement and doctors etc. got paid, however, I'm disabled, can't work much (because of the stoma being difficult) and they say I require chemo etc and 3-4 more surgeries over 3-4 years. After such hell on the first one, I declined any further treatment as essentially worthless as it would only prolong my life they say by about another year. Since I declined, they said I only had less than a year to live. But I started thinking, what if they were wrong about the biopsy? Could the damage to my intestines have come from another source, like coffee and/or too much driving? So since I'm taking a wait and see approach, it's been over a year now and I'm still alive. Having no other complications other than this problematic stoma. They say they can reverse the ileostomy but wanted to wait until the cancer was eliminated first.

So anyway, I'm considering a second opinion if I truly have cancer or not. I'm at this point, being a tough stick, that I don't even want to see a needle ever again.

So a revision, based upon current information, is about worthless at this point. Because if I go under the knife again, I could just have them fix it at that time but hopefully not at all and I'll pass peacefully in my sleep.

The last hospital, ER+ for 10 days, PET scan and seeing the cancer doctor over a few months cost well over $63,000.

The one where I got the surgery and 4 weeks in the hospital, plenty of CRT scans etc. only cost $45,000.

Certainly got better treatment at the second hospital than the first, but not a whole lot of bang for the buck. But they do cancer and told me what the story was which the first hospital was just a trauma hospital and sent the biopsy off to Chicago someplace.

So if anyone likes to keep ballpark figures, a week in the hospital costs around $10,000-$13,000 per week based upon my experience.

So it's at the end of the year and I have to use the Affordable Healthcare site to get a new plan for next year. I'll get a $1900 tax credit so I'm only paying a few hundred dollars a month for full coverage. Unfortunately, I was on Medicaid and the new Affordable Healthcare insurance with tax credit at the same time and they didn't inform each other, so the second hospital bills are stuck between two policies and one isn't trying to pay because I had the other one.

So the hospital is going to try billing the first policy and seeing what they pay, then try the second one and any leftover I have to pay. It's such a racket. 😔

I'm off the Medicaid as Affordable Healthcare told me I can't have both. So that's done. With Medicaid, they can just take stuff from you to pay the bills like they did with part of my settlement... proof. But now it looks like I'm going to live and be disabled so my income stream is as well.

However, learning these lessons is vital and I'm going to pick a plan accordingly as not to be hit financially if I have to go back in for something. There is a $200 a month plan with a $7000 deductible with 5% copay after that. Or a $100 a month plan with a $7000 deductible with a 50% copay after that.

So it's complicated and then these insurance companies just refuse to pay for certain bills, or only a certain amount or not even all of them. 😒

But if you go without insurance, the hospital sends you bills at a much higher inflated price, like $5000 for two ER visits for 7 stitches and a shot. That 10 years earlier only cost $600 at another hospital.

 

 

 

 

Hi Shamrock, I sure admire your tenacity during such a difficult time, and probably the hardest part is dealing with insurance companies. Good luck.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

After seeing your stoma, I took agree with Iggie. Suggest a revision or a relocation.

I agree a revision is in order, but I'm waiting to see if and when another surgery I wish to undergo can take care of it then.

If I perfect this method (I'm getting better at it each time), then I can function more or less like normal and become more productive, get a job, etc. 😊

I do think, since this HealthCare Dot Org insurance company refused to pay any of my second hospital's submitted bills due to this snafu (they are only taking a loss of $34,000 overall), that I should look at other insurance companies' plans.

Why don't you just reapply for medicaid and stick with that then? Medicaid will pay for everything. 

Because I got a somewhat substantial settlement of $1M.

The lawyer got $400k.

Medicaid clawed back $40k before I got anything. Thinking I was dying, I gave away $50k and a week trip to Disney World to a needy family. Which I found out later, Medicaid does a five-year look back and that disqualifies me as they think I'm trying to hide money they can claw back legally in Florida, it seems.

I only made $17,000 last year and expected to make $18,000, which just barely disqualifies me for Medicaid and allows HealthCare.org tax credit of $1900 a month to kick in. So I did that $18k estimate again this year as I should be healthier now that this stoma is better under control. (My only hang-up really).

So now I signed up for a Bronze plan of $240 a month, covers about every major cancer and surgery hospital in Florida, with a $6500 deductible and a few dollars here and there for coinsurance over that. (Last year it was only $83 a month, $7050 deductible only). The aim being not to be slammed with $40k-$60k+ hospital stays and specialist treatment if I change my mind and want to live. 😆

So I don't know what's going to happen with this insurance company conflict, one says they won't pay because I was on Medicaid, Medicaid won't pay because they know about my settlement and thus not qualified as indigent.

Healthcare.org says I may have to pay for all of 2024 tax credit given because I was still on Medicaid, that's $21,000.

I tell my insurance company they have to pay because I shouldn't have been on Medicaid once that policy kicked in. It will likely cost me $7050, but that's a lot better than $21,000 or even $63,000 if Medicaid goes and claws money out of my bank account or something. They have a lot of power.

Thing is, I need the measly $400k I have left because I'm disabled and not working, don't quite know what's going to happen to me next. I may need long-term assistance in a nursing home.

So I'm going to see about setting up a trust, it's supposed to protect in situations like this. Because if not, I could find myself broke and living under a bridge begging for change at stop lights. 😢

I've had cancer victims with exactly the same thing telling me they are still alive after 20+ years!

Everything was fine when I was supposed to die. 😆

I am a bit confused. 🤔 If you're on disability, automatically you have health insurance with your state. And you can have a second insurance while on Medicaid, but you can't use the tax credit. You have to pay the full regular amount, not the amount you would on healthcare.gov. As far as your surgeries, whichever insurance information you have given them and on all your paperwork is the insurance that should pay.

I can't afford $2,000 a month for secondary insurance, and that's $24,000 a year, well over the $17,000 and under for Medicaid qualification.

However, last year I was essentially broke when I went in for my first surgery and got disability, as it's a package deal.

The new tax credit thing didn't take effect until 2024, so I applied for that as it was something I could afford.

But it didn't matter; when I got my settlement, Medicaid was there to carve off the $40k I used. So I basically paid for my first surgery out of pocket. 😔

Just because now I have some money doesn't necessarily mean I'm rich; my income is rather low.

 

Oh, I am not saying you're rich just because you have money. I went through the same thing. When you're on disability, you don't pay for health insurance. You get on Medicaid because you're on disability. So, you can't get the low-income insurance because you already have Medicaid. You can, however, pay the full amount out of pocket and have secondary insurance, but it can't be the low-income and tax credit. Which is why we are talking about you paying it back because you applied for the tax credit and for low-income insurance while you are on Medicaid. You can't have both.

But to stay on disability, I need to make $17,000 or less per year. Medicaid can legally claw back any money they choose.

There are companies that specialize in grabbing the money; in my case, they grabbed $250k and held it, then gave me $210k back once I told my lawyer I'm quitting Medicaid.

If I have $18k or more in estimated income, I don't qualify for Medicaid and qualify for the tax credit plan.

I only grossed about $16,500 last year but could have easily made more if I wasn't hampered by this problematic near flush stoma and undergoing recovery. After my accountant is done, I certainly will show I've made less than $12,000 actually.

So I figured I'd give it another try next year and estimated $18,000 because I usually make about $24k a year, then with interest income properly invested, more or not depending. If I make too much, I'll have to pay some of my tax credit back.

I might have to pay some of last year's back because of Medicaid not being cut off at the first of the year.

SSN disability is only giving me about $600 per month. Can't live on that today; it won't even pay rent anywhere.

The system is designed to force one to go back to work, else everyone would be on disability forever.

I'm going to give it a try and if I'm unable to do the tax credit plan, it won't get paid anymore and I'll have to reapply for Medicaid.

If HealthCare.gov or the IRS screws me, then f em all. I'll quit playing their stupid game and let them figure out who's going to pay because I'll just go dead broke.

They had to go and complicate the heck out of the entire system even further, creating more problems than they resolved.

If one doesn't shop carefully on that Healthcare.gov, they try to push one to Silver plans that have no coverage, not being accepted by very many hospitals, etc. When one falls out or gets into a car accident, say, the ambulance takes them to the closest ER first, then they are transferred after that. So when they come to collect insurance information when you're in your bed, your plan isn't covered and you're stuck paying the bill in its entirety, then they charge whatever they wish.

Many of those health plans on that site don't cover cancer or surgery.

Who knows what you're going to need? I didn't know I had cancer. The trauma hospital only told me; couldn't do anything about it as they didn't do cancer.

It's a real clusterfsck. 😒

Thank God I live in Australia.  IGGIE

I second that IGGIE

I feel for those that not only have to do battle with their condition but also with finance issues

So blessed to be living in the UK 

I think you're misunderstanding what I am saying. When you're on disability, you get Medicaid; it goes hand in hand. And since you are on disability and have Medicaid, you can do the low-income insurance and use the tax credit. Since you did receive the tax credit while on Medicaid, that is why they are saying you owe money. If you want to have secondary insurance, you can't use the low-income tax credit (because you're on disability); you have to pay the regular price for insurance, which, because you have an ostomy, is going to be higher in price.

He won't listen to you, Beth.

Iggie, I guess not. I'm just trying to help.

Yes, I know that.

However, nothing was said about Medicaid when applying for the Affordable Healthcare tax credit, only Medicare.

Later in August, I received the notice from Healthcare.gov that I can't be on two tax-subsidized insurances at the same time and the threat. So I immediately called Medicaid and canceled, which I got the letter on November 4th.

So now I'm only on a tax-subsidized insurance policy only, which I have a deductible of about $7000 or so, which currently I can afford due to the settlement.

With the settlement, I'm no longer indigent and with Medicaid, they will just garnish whatever they want to pay it off, like the $40,000+ they grabbed from my settlement before I even received a check.

So you see, I'm better off on a tax-subsidized insurance policy than paying for everything out of pocket under Medicaid due to their clawback laws.

Eventually, if I'm fine, then I'll be going back to work and certainly have to earn more than the $17,000 Medicaid limit in order to survive.

The problem is both policies were active at the same time and I didn't know that would be a conflict, but as soon as I found out I took corrective action.

This is entirely the Federal Government's fault for not immediately notifying Medicaid or even contacting me via phone or email if necessary so I can cancel Medicaid. Heck, it should have asked me when I applied, but only said Medicare, a totally different policy.

And then there is only a short window to apply for the next year's health insurance, so I was forced to act to get it.

According to my insurance app, they paid off the bills and I have used up my $7050 deductible. But some bills are pending results from Medicaid's response of some sort. I don't know what.

However, they let me apply for a 2025 plan for $230 a month and a $6050 deductible with some low coinsurance. I picked yet another Bronze plan that I can afford the monthly payment and not get devastated by high bills, yet covers the good cancer and surgery hospitals in Florida as well as a national network.

Quality of care is very important as well as a plan that covers as many hospitals as possible as one doesn't always know where one will end up if they fall out and get rushed to the closest ER.

I chose to go to the better hospital if I'm able, but it's luck of the draw if I'm passed out. I need a cancer hospital that also does general surgery and if able can transfer to one that I know I'll get appropriate treatment.

The problem is out of my hands and between insurance policies and agencies. I've done my part and due diligence.

I have received no bills.

Okay, I've read the image of the screenshot taken last year when I signed up for the tax credit plan.

"I understand that I'm not eligible for a premium tax credit plan if I'm found eligible for other qualifying health care like Medicaid..." etc.

However, I was approved because my expected income was going to be $18,000+.

"I also understand that if I become eligible for other qualifying health coverage, I must contact the Marketplace to end my Marketplace coverage and premium tax credit. If I don't, the person who files taxes in my household may need to pay back the premium tax credit."

Okay, I was already on Medicaid in 2023. With 2024, I expected to earn more than $17,000, $18,000+ actually, and basically just did that.

I expected that current Medicaid would be canceled because 2024 expected income would be higher than the Medicaid allowance. Plus, I was supposed to renew it every year; I didn't know it was supposed to be renewed at the time of application, not at the beginning of the year.

Notified of the problem, I remedied the situation immediately with Medicaid.

The question is, why did the Marketplace plan not check if I was on Medicaid or make me first quit Medicaid before going forward? Why wait so many months later?

There is only a very short, limited window to apply for the Marketplace plan. In fact, the screenshot was taken on Dec. 3, 2023, just 12 days before the deadline.

The situation changed when I reported my next year's income as $18,000; thus, at that point forward, I didn't qualify for Medicaid, so I shouldn't have been found eligible.

The problem is that the Marketplace plan, insurance companies, and the tax credit all start at the beginning of the year, and Medicaid goes year to year based on when it was applied for and approved.

So, an overlap of coverage occurred, but my Marketplace plan should take precedence.

No biggie, unless they come after me. 😆