Stella hurts sometimes

[Everhart216]

Hello fellow Ostomy people, I am new to UOAA and I have a few questions. I had emergency surgery May 30th, while visiting my father in Tampa. I stayed in the hospital for 30 days and it's definitely a life changer! I named my ostomy Stella and sometimes I feel pain or burning while producing and I just wanted to know if this is normal. I understand diet is an important factor, but I am just never hungry; is this normal? Another thing is, there is absolutely no schedule while producing and sometimes it takes hours to finish and afterwards Stella is sore and quite noisy. It is exhausting and I wondered if anybody has felt the same. Furthermore, I just came back from a consultation with a surgeon for a reversal and suddenly I am stressed out and so is Stella. Does anyone feel that the ostomy itself feels stressed out and
uncomfortable? If anyone has had a reversal, I would appreciate some knowledge on the subject aside from AI and Google. Thanks

[Shamrock4806]

Pain or burning?

Is it on the skin surface? That would indicate a leak and needs to be addressed or it just gets worse and harder to heal.

(If it feels internal then you need to get to an ER right away as it might be a clog or some other issue)

Perhaps your wafer hole is not correct, or on wrong or your stoma hole is covered and it's pushing output onto the skin. The stoma extends out and into the wafer. I didn't know that until I saw it happen when the bag was off.

Using alcohol based paste can cause stinging as well.

You can try using baking soda in water as a bag flush and leave a little in the bag to act as an acid neutralizer. Keep it all up around the stoma area while laying on your back. Not a cure but will assist in reducing the new acid burns some until your stoma quiets down enough and you can take a hot shower and put on a new bag.

The output contains stomach acids and although the stoma and it's interior can handle it, your skin surface cannot.

I think you should see a professional and determine if it's internal issue or an external one.

If your not eating, then the stomach produces acid in anticipation of food and this will come out as black bile in your bag. Very acidic. Leaves like a oily black film in the toilet. Antacids work on the bag while on the road.

I have a schedule that I eat small nutritious meals early am to about mid afternoon, then stop so stoma will be not over producing while I'm sleeping less I get a over filled bag and a blow out. However I've learned that going hungry all night produces the black bile so now I'll eat a very small snack after pm instead as it won't produce much output. Gives me a chance in the morning to schedule a bag change with a quiet stoma with a nice long hot shower etc. (applesauce) wait until it finally stops long enough to clean and dry the skin out thoroughly and get a good adhesive, paste or ring bond to the skin.


Quantity and type of foods is important to control ones output so one can get a lull period where they can change a bag out without the stoma spewing all over and ruining your attempts. Go light and small amounts on different foods to learn what will cause it a lot of spew.


So if your not getting a good adhesive to skin bond, it could be that everytime your stoma spews, it's dousing your skin with fresh acid and could be the source of your discomfort.

It's very hard at first getting the hang of it and often hospital staff are not exactly fully knowledgeable and experienced doing it, we really become our own experts.

Now there are some downsides to a reversal, one of them is you haven't been using your colon so it needs to learn again to start extracting water out of the output. Until then your going through diapers like crazy. May take a year or more before it finally starts working again.

I have cancer and unless I'm suddenly cured, I'm not in considering a reversal. But certainly felt I wanted this illeostmy reversed and this bag find out of my life right away when I first got it. But now realized I'm probably stuck with it until I'm gone.

I've included a couple of links here, one about diet and another about my particular appliance application process. Yours may be different but you can learn how important it is to get a good skin bond around the stoma.

Only eat soft, not fiberous type foods, hard stuff like nuts and tough meats can clog! Certain foods cause a lot of liquid flow or gas also. Some, like applesauce do the opposite and good to eat a while before a scheduled bag change to stop output long enough to get the job done right.

I can understand right after surgery your ravenous because your healing, but train yourself to eat less portions twice daily and only during the day, very little at night, like applesauce or a couple of cookies then.

See this list:

viewtopic.php?t=27653

viewtopic.php?t=27688

Hope that helps. Good luck.

[Shamrock4806]

Oh and you need B vitamins multivitamin as that section responsible for adsorbing was removed.

Train yourself to sleep either on your back or right side. You may need mattress etc. protection until you learn more about your diet and portion control.

[Everhart216]

Thanks for the input. I found out the hard way regarding seafood, as I had a lobster roll 2 days ago and Stella was miserable. I am pretty much eating what they allowed in the hospital: fruit cups, Greek yogurt, Ensure, toddler stage 4 pouches, pizza, deli, bananas etc. I stopped taking all vitamins, but i have a B complex that I will begin taking. The Dr. said it looked good, but of course I forgot to ask questions because he was so gung-ho about the reversal, that I got all stressed out. I will go for one more consultation and I will write my questions down. I read the discussions, and I am amazed how long you keep the same bag. I change the bag every other day, sometimes 2x a day, is that excessive? I've been using a tiny bit of olive oil in the bag, along w the odor control stuff, so "it" slides easily. I have the powder, but sometimes it makes the ring not stick. I've been showering with no protection, is that ok because I hear people protect it, but Stella likes it because then I air it out for a bit before I put the bag on. I appreciate your knowledge on this, yet I am sorry for your condition. Thanks

[ot dave]

Every ostomy and every ostomate is unique. What works for one person, does not necessarily work for another. You're still recovering somewhat, so things changing for you should start to slow down as far as healing and stomal changes.
Peristalsis is the movement of the bowels that occurs during digestion, so your stoma is going to move in and out (those are muscle contractions, and are normal). With new ostomies, that movement can pull on scar tissue, making the process uncomfortable, but not harmful. I would suspect that that is what you are experiencing when the stoma "hurts". Sometimes being up all day, gravity will pull on my stomach, creating some discomfort for me as well. It helps to use a binder or an ostomy belt to support the area around the stoma. I use a big abdominal binder throughout the day that makes a big difference for me. NuHope makes a hernia support belt that provide support to the area around the stoma as well that has been pretty effective for me in the past.
From what you posted above, when using the powder, you have to cover it with a skin barrier, or it is essentially like trying to tape your towel down on the sand at the beach! I only use powder when I have some raw or weeping skin. Then I use powder, cover with a barrier spray, and repeat 2 more times to essentially make a "scab". The last layer always needs to be the skin barrier. I prefer sprays over the pads as the sprays don't remove the powder that I just put down.
I would avoid putting olive oil in my pouch at all. Even if it's in the bottom, with movement, it will find a way to get up around the stoma and under the flange creating a leak. Avoid anything on your parastomal skin that has oils or perfumes or moisturizers. Things with those ingredients prevent a good seal from happening. For odor control, I don't use anything. Once I have output, I simply rinse out the output with water after emptying the pouch. This removes the majority of odor causing bacteria, and for me, it feels like a new pouch.
Showering without a flange is perfectly fine. I do it every time I change flanges (I use a 2 piece system). If able, I will lay on my bed and let some air get to the skin for a while as well. I call them "naked showers", which is weird, but for me it makes sense!
I am a big fan of LESS IS MORE. If your skin is flat and healthy, try applying a flange without anything under it. The more things you apply increases the chances that something is going to cause a leak. Less is more. If the "dry" flange isn't working, then start looking to find answers. Again, everyone is unique. I apply my flange dry when my skin is healthy. I don't have any dips/divots/scars that get in the way, so I don't need any barrier rings or paste. BTW, paste is a misnomer....it has no adhesive properties. It's designed to fill in dips and divots to create a flat space for the flange to cover. Paste should be covered completely by the flange when used, otherwise, it provides an opening for output to leak through. I threw my paste away 15 years ago!! In the past I have used barrier rings with good success, but for me, under the flange, dry is the way to go. Now, my stoma was moved in 2022 due to a hernia, so now it is in a position that makes it susceptible to movement, so I use clear medical adhesive on the edges to keep the edges down during movement. Other than that, dry has always been my go to....
If you feel up to it, and your surgeon makes you feel comfortable with it, get the reversal. Ostomies are great when you have to have them, but if you can go back to original plumbing, I would definitely jump on that....but that's me.

Hope that helps some.

David

[Shamrock4806]

...I found out the hard way regarding seafood, as I had a lobster roll 2 days ago and Stella was miserable. I am pretty much eating what they allowed in the hospital: fruit cups, Greek yogurt, Ensure, toddler stage 4 pouches, pizza, deli, bananas etc.

The Ensure may be causing excessive output. What we call diarrhea where it just won't stop spewing and makes it hard, even impossible sometimes, to put a new bag on..I had that problem using another brand.

I stopped taking all vitamins, but i have a B complex that I will begin taking.

Take a multivitamin with extra B's. So your getting a good coverage as other vitamins needed also. I use Centrium Silver and it works great. However as a precaution you should chew it up first. A undigested pill can clog, but usually they digest fine. But best not to take a chance.

The Dr. said it looked good, but of course I forgot to ask questions because he was so gung-ho about the reversal, that I got all stressed out. I will go for one more consultation and I will write my questions down.

A year learning how to get used to an otosmy life with bag issues or a reverse and having diaper issues. I would say the diaper would be a heck of a lot easier to change.

I read the discussions, and I am amazed how long you keep the same bag. I change the bag every other day, sometimes 2x a day, is that excessive?

The 9 day was something of a fluke. It did leak, but on top of the protective sheet and contained by the extra adhesive strips. It dried and grew black mold.

I've been trying to improve my methodology and currently on a four day bag with no issues.

I've been using a tiny bit of olive oil in the bag, along w the odor control stuff, so "it" slides easily.

You can control the liquidity of the output simply by watching what you eat and mixing foods together.

For instance I eat plain chicken that's been grilled and is still juicy, never fried or rotisserie style. No KFC etc. for my protein. Then with plain white rice for my starch. Output is liquid and easily flushed, little smell. Small portions also.

Pizza outputs well also, but watch the toppings. Veggies can clog or smell. Mushrooms can clog..Meats seem to digest well into liquid output.

I rinse using my antacid + antibacterial dish soap water combination and it works to kill what causes the smell, bacteria.

I have the powder, but sometimes it makes the ring not stick.

Yes that's a problem using stoma powder. It's only supposed to be used on oozing wet damaged skin and then just a tiny amount to dry it out.

You may opt for this method instead.

1: Wash and clean area with moisturizing soap. Dry.

2: Use tincture of iodine and the applicator to dab (will sting bad) little spots at a time on the damaged skin.

3: When that's done (and your done crying), wash with moisturizing soap to remove it or you'll suffer.. Then forgo the stoma powder. (You only should need to do the iodine step once to kill the skin infection, not each time.)

4: Dry thoroughly using a blow dryer until the skin is very dry to the finger tip touch and slightly rough.

5: Apply skin barrier, if you can pour it, (spray into the cap even) then do that around the stoma so it's thicker there and spread it out thinner where adhesive sticks. Blow dry well and repeat just around the stoma with a second coat. Blow dry well again. Important!

6: Expand the ring about a smidgen larger than your stoma. Center the ring and press down and heat the ring edge with your fingers and thin it out until its next to the stoma all around. (If you have unevenness, gaps or scabbed skin, then perhaps paste would be better until you heal up more and skin around stoma is smoother)

7: Then apply your appliance and heat with your palm or a heating pad with pressure (use a tube through the bag) to seal everything together. Especially around the stoma where the ring or paste is. Very important!

I've been showering with no protection, is that ok because I hear people protect it, but Stella likes it because then I air it out for a bit before I put the bag on.

I find no problem showering with a bag off and stoma exposed, in fact I keep a chair in the shower to sit until it's done spewing if need be.

Just use moisturizer type soap in that area doing one final wash and rinse before drying to remove stoma oils as that can mess up a good skin bond.

Showering with a bag on is possible as well, those small bags for used pouches with some waterproof tape. Shower water on your back mainly. It's the heat of the shower than can cause one to sweat a bag off, so keep the temps down unless it's off then as hot as you want.

[Shamrock4806]

.. BTW, paste is a misnomer....it has no adhesive properties

Ah I wouldn't say that.

Maybe the paste you were using didn't stick, or it was alcohol based and took time to evaporate, but it does stick if you ever allowed some to dry on your fingers.

I use a non-alcohol no sting paste and as long as the skin around the stoma is bone dry and not oily, it will stick hard right out of the tube.

The problem with rings is they are not good for dips, gaps or unevenness. If one place it doesn't stick, then the whole ring has to be tossed whereas with paste just that section can be removed, the area addressed and new paste put down until it does stick.

Since I have a convex, the adhesive areas of the wafer don't touch the skin surface until I place final pressure and my extra adhesive strips are down, then to keep it down with my belt.

So I can say (after removing the pasted wafer a few times due to mistakes) that the paste definitely has some adhesion to it.

I think a lot depends upon what kind of paste, alcohol or non-alcohol and how long it's been on. How dry the skin was etc. In other words, curing time.

[Shamrock4806]

... I change the bag every other day, sometimes 2x a day, is that excessive? ...

Yes, either you don't have the right appliance and/or your not getting a good skin bond.

A good wear time is about 3-5 days according to everyone I've talked too. I'm trying for a consistent 7 day wear time. And it's been hit or miss, sometimes it's been every other day, especially if I made an error. But I keep trying, improving and getting better at it. Currently at day 5 on this bag.

You could be stuck in a cycle where the acid is harming the skin, it's infected and trying to scab up and can't, the ring can't bond and causes more leaks etc. this is why I suggest the painful unfortunately iodine step just once, then washing it off before doing the bag process.

If your requiring olive oil that means your likely pancaking (output so thick it stays near stoma and can push a bag off causing leaks). This can be controlled with diet and using a 2 times : baking soda + antibacterial dish soap + water combination neutralizer to flush the bag completely (get it up around the top by laying down briefly) then leave about a fresh 1/4 cup or so of it in the bag. When you go to lay down it can be made to sit in the pancake area and mixes with the output. It also neutralizes the acid to assist in reducing pain and damage. The antibacterial dish soap eliminates the bacteria responsible for a lot of the odor.

Try a beginning diet of just only small portions of soft (not fried) meats, a cup of plain rice or potatoes and liquid real fruit and veggies juice (about a small glass occasionally) water all the other times. Do this twice or three times a day starting am when your up (and after fresh bag on if needed) then stop about 3 pm. Eat only applesauce (or skinless apples) after that so your not hungry and stoma output will subside by morning so you can put a fresh bag on with a hot shower.

Greek yogurt is excellent as it provides probiotics and soft. Bananas for potassium, chew well. Key word here is soft (and nutritious). Eventually you'll find a right balance. Just avoid quantity and experiment in small amounts until you see the results, you want to avoid flooding your bag and becoming dehydrated. Avoid everything hard and fiberous. Avoid salads and hard veggies. Like I can eat the flowers of broccoli but that's it, not the stems. I can eat green beans if soft cooked and I chew it in tiny bits first so not swallowing potentially larger clogging pieces. Spinach is a no go, but I can drink the juice which is very nutritional.

You'll get the hang of it.

You need to get an idea of what type of foods and their quantities will cause bag issues for you. Drink water during the day until your urine is a light yellow. If dark or no urine that's a sign of dehydration which could be a cause of your pancaking issue. (Vitamins can cause darker yellow urine, so take every other day). Especially if your unsteady on your feet. Don't drink too much water or it flushes out the bag, just bits during the day to keep a balance of hydration.

If your feeling pain in your nerves that could be neuropathy and caused by not enough vitamins especially B. An illeostmy removes a section responsible for absorbing so you need supplements occasionally.

Finding the right appliance for your body contours and stoma type is a lengthy journey process. There are flat wafers and convex (curved) types designed for near flush to the skin surface type stomas. I have a near flush stoma with a belly fold right there so I use a convex and then fold it in half horizontally to fit and be a lot more flexible. I also use extra adhesive strips and a stoma belt with four hooks to maintain pressure to pop the stoma out more and keep things in place when moving during sleep. Which I only sleep on my back or right side.

In the hospital they just use generic across the board supplies and it takes buying small samples (or talking to the appliance companies rep about your body type etc and getting free ones) and trying different ones out until you find a right match.

Learn the different stoma types, conditions of skin around the stoma and how to properly address is important. You slowly and methodically learn and improve until your symptoms disappear and you can get into a routine and live a near normal life.

It's been a one year journey for me and I've documented some of my experiments here, but I'm learning and getting better each time.

I can say this though, a good skin bond around the stoma is vital. I just so happened to have a roll of tape that the tube hole was just large enough and the tape on it the perfect match to cover the skin area around the stoma where the paste/ring is and used that to press down hard for awhile until everything bonded well. I think this has been responsible for my latest bag success.