Help, suggestions and ideas

[Jeff Torres]

I’m less than two weeks since my surgery, I lost my bladder and prostate to bladder cancer. I’m with Kaiser and they have me with the Hollister system. I was shown how to cut and apply the stickers along with the wax rings, I’ve used jars and bottles of wine to help get a good seal, but I seem to go through 2-5 of the CeraPlus rings before I get it right. My confidence is taking huge hits. I’m a big guy, my stoma is recessed a little into my folds and fitting the cut hole around my stoma usually results in the bottom part of the sticker getting wet as the urine runs out of me, but I need to stand to see the stoma. Once the sticker is wet, I leak.

Am I on the best system?
Where can I find any better alternatives to try?
Any tips for me? Any tricks?
Am I missing something?
I’m starting to feel like I can’t do this

Thank you in advance.

Jeff

[Shamrock4806]

Hello Jeff and welcome.

It seems to me your stoma is like my illeostmy stoma (for stomach contents) recessed below skin level and compounded by a belly fold.

I think your going to need a urology convex wafer with otosmy belt, extra adhesive strips and horizontally fold the wafer section of the pouch and either heat the edge to bend more or use your teeth or pliers to get it weakened so it bends, is flexible and fits into your belly fold.

A convex is curved on the bottom and designed to put pressure around the stoma to get it to stick out more and discharge into the pouch. You use a belt and it applies downward pressure to do that and also makes a better seal around the stoma.

As soon as the skin or anything going to be applied to it gets wet with urine etc., it's essentially worthless to bind too. It needs to be cleaned with moisturizing soap and water and dried very well using a blow dryer so the skin is almost rough. Then getting the ring to the right size and pressing it down, heating it and pressing it closer to the stoma if need be.

I use paste myself because I have an abundance of it and it's very sticky stuff, even stickier than rings, but I may switch back to rings again when I run out.

I don't have any experience with urology bags but it seems to me your problem is very similar to mine and you should read my thread here about my latest successful bag. 7 days!

I think an illeostmy is harder as we have to deal with acid burns, but urine can cause fungus to grow also with an illeostmy so proper washing is necessary to prevent that.

I don't have any idea what to do or look for to get urine from not producing long enough to get a bag on, perhaps you can hold it? We can't hold it with an illeostmy so our problems are more difficult.

This thread might help because a lot of our issues are the same. I think the procedure will help you get a good skin bond, just ignore anything not related to urology.

viewtopic.php?t=27688

So if "I couldn't do it" with an illeostmy, but managed to do so after a year of patience, I think you can do it with what appears to me to be far easier problem.

You know they have little handheld mirrors and I usually lay on my back to apply. Not standing up, that's cumbersome. Some do it on the toilet, that may work for you. I use the shower, sitting until my stoma has quieted down. You'll get it.

[Jeff Torres]

Thanks for the reply Shamrock, before I could try anything, I ended up in the hospital overnight with some bleeding around my stoma and some fluids had built up, The doc drained and stitched me and wound care visited me with a belt and what I can only describe a “barrier volcano” that attached to the barrier and pushes down around my stoma and the seal here is working fine, having issues with the bag leaking, but overall this setup is looking more positive.

From what you mentioned, it does sound like the Illeostomy is worse to deal with and I hope your methods prove to be the best for you. I am hoping for a years worth of patience, but I have had a crisis of faith in God and Medicine and myself. Only time will tell.

Again, thank you for your reply.

Jeff

[Mysticobra]

Question.
Are you both talking about temporary ileos?
Or permanent ileos?
Be good to know to maybe help a little.
Richard.

[Bob Webtech]

Richard, to answer your question about what each of these posters has:

Jeff has a urostomy, not an ileostomy. His urostomy is presumably permanent (urostomies are hardly ever temporary). A urostomy stoma is similar to an ileostomy stoma because it's made from a piece of the ileum (ileal conduit), although a urostomy flows urine while an ileostomy flows stool.

Shamrock has an ileostomy which is intended to be temporary, although it isn't clear if he'll get it reversed because he seems motivated to avoid additional surgery. Shamrock's temporary ileostomy is apparently a "double barrel" ostomy -- similar to a loop ileostomy except that a double barrel ostomy has two separate stomas while a loop ostomy has just one stoma with two openings.

[Bob Webtech]

A note to Shamrock:

You've written many times about getting acid burns. Actually, the output of an ileostomy isn't acidic. It's true that part of the digestive system, especially the stomach, is highly acidic. But the small intestine, whose contents form the output of an ileostomy, is actually slightly alkaline. So, the output of an ileostomy is slightly alkaline, not acidic. This means that by adding antacid, you aren't neutralizing acid; you're actually making it more alkaline.

Even so, it's possible that it may reduce the tendency of the output to burn your skin. The reason why ileostomy output burns skin is because it contains digestive enzymes, which try to "digest" your skin like they would digest food passing through the small intestine. And it's possible that changing the pH from slightly alkaline to still more alkaline might decrease the ability of the digestive enzymes to work efficiently.

[Mara]

Bob, thank you very much for clarifying the acid issue. I haven't been aware of any type of burn on my skin when I remove my faceplate even though often a little output - not nearly enough for a leakage - comes through under or around my Eakin seal.....I just wash it off with soap and water as I take my shower with my appliance removed.

[Shamrock4806]

Thank you Bob!

Wonderful post, I truly appreciate it.

So what I'm doing is actually killing the digestive enzymes by making their environment too alkaline for them to exist and they die. That and the antibacterial dish soap too right?

You know there may be an even easier way to kill the digestive enzymes as soon as it comes out of the stoma.

But I think what I'm doing is sufficient and the burns have decreased quite a bit with my newer application method.

BTW they say I have peritoneal mesothelioma and require 3 surgeries and chemo, then a reverse illeostmy if I'm cured which they say I can't be, so I guess they are leaving the option open. All the surgeries just for the cancer will take 3-4 years and only buy me another year after that. Was given less than a year when I refused all this, but it's been a year and I'm healthy as heck. So maybe they are wrong on the biopsy and my intestines were damaged from too much driving. So either way I'm looking at a year of free life without being tortured but I'm still going strong.

And yes I'm dead against any more super invasive surgery which an intestinal bath is needed they say, no way, being gutted like a fish once was enough. And since I didn't die in pain the first time, just passed out, rather go that way if offered another opportunity.

Thank you so much for this site and the insight given here, it's helped me out quite a lot.

[Mysticobra]

Thanks for explaining Bob.
I have no suggestions for a urostomy.
As for a double barrel.... I don't know... Temporary ileo.
No knowledge on that either.
A regular ileo. I could suggest.
As for a temporary ileo. I had one and they are miserable.
I'd do anything now in hindsight to get a permanent ileo.
I've been fortunate with it. As in no issues. Leaks occasionally.
But that's all.
So. All I can do is read. And it is informative.
Your comment on acid was too.
I remember the burns I got from the temporary ileo.
Omgoodness that was miserable.
Richard.

[Shamrock4806]

Stomach enzymes (e.g., pepsin): Highly acidic, optimal pH around 1.5-2.

Antacids neutralize the acid in your stomach by stopping an enzyme that creates acid to break down food for digestion (pepsin).

Small intestine enzymes (e.g., trypsin): More neutral, optimal pH around 7.5-8.

Reason for different pH levels: Different parts of the digestive system have different pH levels, which allows specific enzymes to function optimally in their designated area.

The optimal pH for digestive enzymes varies depending on the enzyme, but generally ranges from 1.5 to 8.0.

Baking soda, also known as sodium bicarbonate, has a pH level of around 8.3 when dissolved in water.

Antacids, like TUMS, have a pH level that ranges from 8.5 to 10.5.

Normal skin pH on average is between 5.4 to 5.9

Killing digestive enzymes

Heat to boiling (impractical next to stoma)

pH: Each enzyme has an optimum pH range. Changing the pH outside of this range will slow enzyme activity. Extreme pH values can cause enzymes to denature

Enzymes are suited to function best within a certain temperature, pH, and salt concentration range. In addition to high temperatures, extreme pH and salt concentrations can cause enzymes to denature.

The average pH of salt water, or ocean water, is around 8.2, but can range from 7.5 to 8.5




So it seems Tums is the better choice for a bag wash/digestive enzyme neutralizer over baking soda.

Salt water could be a another option.


But depending on the enzyme, it might not work on all of them. Why I'm likely still feeling some burn, but not as serious as without the neutralizer. Of course the neutralized output isn't in constant contact with the stoma with the current bag design neither.
.

Thank you Bob!

[Mysticobra]

All I can say is if you can or if that's your only option is a permanent ileo shamrock.
I'd go through the surgery and get the permanent.
Unless you can have it reversed.
I had as pouch and had it removed and got the ileo.
It was the easiest surgery of the four I had and I healed really fast.
Having the permanent and having it work well stops all the problems
your having.
I barely even think of mine. Just move on with my day.
Richard.
P. S
I don't know and won't go back and read. Too lazy.
To see exactly why you have and if you are reversing it.
I do admit. And you must admit. You made alot of reading.
Lol.
Not a complaint!

[Shamrock4806]

Antibacterial Dish Soap contents:

Ph of .3% Chloroxylenol 9.76

The pH of sodium lauryl sulfate (SLS) in a 1% aqueous solution is between 7.0 and 9.5

The pH of lauramine oxide can range from 5.5 to 8.5 for a 10% aqueous solution.

Rubbing alcohol can have a pH ranging from 6 to 8, and can be slightly acid, alkaline, or neutral

The pH of tetrasodium glutamate diacetate (TSGD) is 11–12 for a 1% solution

The pH of sodium chloride (NaCl) is 7, which is considered neutral

Hmmm, I might be better with a just Tums + water solution as the neutralizer and another bottle for the anti bacterial dish soap washing solution.

[Shamrock4806]

All I can say is if you can or if that's your only option is a permanent ileo shamrock.
I'd go through the surgery and get the permanent.
Unless you can have it reversed.
I had as pouch and had it removed and got the ileo.
It was the easiest surgery of the four I had and I healed really fast.
Having the permanent and having it work well stops all the problems
your having.
I barely even think of mine. Just move on with my day.
Richard.
P. S
I don't know and won't go back and read. Too lazy.
To see exactly why you have and if you are reversing it.
I do admit. And you must admit. You made alot of reading.
Lol.
Not a complaint!

Thanks Richard but I'm not opting to any more surgery, not even a needle, no chemo etc.

According to what the doc says, it's pointless.

I hope I go in my sleep. I hope I live another 20 years.

God gave me a second chance, I really didn't want to live but unfortunately He had other plans.

[Mysticobra]

We all have different reasons for having an ileo.
I had uc. No cancer thank goodness..
But I do know what you mean by no more.
After my third most miserable surgery. Nope.
But I had to do it one more time. Had to. Last one was a breeze compared to. The others.
But I still don't even want to go near a hospital.
Unless I'm dying. I ain't going.
Richard.

[Shamrock4806]

We all have different reasons for having an ileo.
I had uc. No cancer thank goodness..
But I do know what you mean by no more.
After my third most miserable surgery. Nope.
But I had to do it one more time. Had to. Last one was a breeze compared to. The others.
But I still don't even want to go near a hospital.
Unless I'm dying. I ain't going.
Richard.

I got a DNR, so if I pass out and die, they can't (or they aren't supposed too) bring me back.

The first time was great, I just turned off with no pain or notice. If given that opportunity again I'll gladly take it over waking up with my chest ripped open again and a pipe down my throat, them sticking me with needles all day and night. My bag hurting constantly and always filling up because they are overloading me with IV fluids.

So now I wear a medical bracelet and a card explaining my condition etc. with a doctor signed DNR in my wallet.

But I don't think I have cancer, I feel great.

If look at it this way, if it took 40-60 years for this cancer to get so bad that it almost killed me, then they cut nearly most of it out, what's left may not get strong enough to do anything else before I die of old age or something else. So why bother going through chemo and 3-4 years of more surgery and pain?

This one surgery made me really age quickly, these other ones would surely do me in before the cancer would is my guess.

Plus I think they are wrong. I really need another biopsy to find out for sure. But I'm scared to even see them for a blood test.