New ostomy, lots of questions

[casy0909]

Hello -

I'm only about 3 weeks dealing with this and unfortunately I have not gotten a lot of guidance or education from my healthcare providers, so I have a lot of questions and would appreciate anyone taking the time to answer some of them. I'm sure most of them have been asked tons of times and I know a lot of them will seem really stupid, but here goes. I also don't even know the correct terms for things, so I hope you can figure out what I'm referring to.

Is a barrier ring necessary? And when you put one on, is it supposed to touch the stoma? I'm pretty sure that the bag/wafer itself is supposed to go a little bit away from the stoma and not touch it, but I'm not sure about the barrier ring.

Why use a barrier ring instead of paste? All the nurse told me at the hospital about paste was "Oh, don't use that." Does paste not hold up as long as the ring would?

Do people prefer drainable or disposable bags? One-piece or two-piece?

How much pressure can you actually apply to the stoma when trying to clean it? The gunk from the barrier ring is really hard to get off and I never feel like I'm getting the stoma itself very clean because I was told to barely touch it because you aren't able to feel how hard you might be rubbing it.

How many days do people get using the same drainable bag? The nurse in the hospital told me to change it in 5 days, the visiting nurse said 3 days.

Before all my recent health issues, my usual state was always slightly constipated and I'm trying to figure out what foods are "safe" to eat to help with constipation. I haven't branched out to trying too many things that are off the restricted diet list because I'm still in the phase of being too scared to eat too much and have problems arise. Does anyone have suggestions for helping with constipation?

I'm also having a hard time dealing with the mucus and pressure sensation in my rectum. I wasn't told that this was something that was going to happen and it happens very frequently for me, like at least every hour I have to run to the bathroom. Any suggestions on how to cope with that?

Do you leave your bag hanging outside your pants or tuck it in? Does tucking it in put more strain on the adhesive or restrict the output flow at all?

I'm sure I'll probably think of more questions as time goes on, but if anyone can offer any help on the ones here, I'd really appreciate it. Thank you.

[ot dave]

Hi Casy. Welcome to the boards. You'll find a lot of information here. I'll answer your current questions in order.
No, barrier rings are not necessary. But, if you are having leaks they can be very beneficial. If the skin around your stoma is flat, and your stoma is not flush, but above the surface of the skin, then a barrier ring may not be necessary. I'm a big believer in less is more... I however have a divot at 7:30 around my stoma, so I use half of a barrier seal to fill in that space. Works for me, and as an irrigator, I'll get a weeks use out of a flange...I'm a two piece fan. When applying anything around my stoma, I allow at least 1/8" of clearance around the stoma to account for movement during peristalsis. The stoma is constantly secreting mucous. Adhesives don't last long when exposed to constant moisture.
A common mantra on the boards is that "paste is waste". It's a bit of a misnomer as it has zero adhesive properties to it. It should be used to fill in dips and divots when you can completely cover the spot with flange. There are some who have success with using paste, but for the most part, folks avoid its use.
Stomas are actually pretty sturdy. I frequently lay on mine. I've been hit in the stoma when playing softball and other activities. The stoma has a lot of fragile capillaries that cover it, so it will easily bleed, but that is normal. You can touch it all you want....but, you probably won't want to that much!
Extended usage of a pouch will vary from one ostomate to the next. Several factors play a part such as output, insurance coverage, amount of pouches on hand, filter effectiveness, etc. Some folks even rinse and clean them out and reuse multiple days. I like to put on a fresh pouch each day...for me, it's like putting on a clean pair of underwear!
The typical response for constipation is the use of stool softeners. There are multiple ones to choose from. If you have a colostomy, you can usually get back to eating your regular diet within a couple of days. If you have an ileostomy, you're system may take more time to adjust.
I had a total APR done, so my rectum and anus were removed due to cancer, so I don't have any experience with mucous production and pressure in the rectum, but others will be along who can answer those types of questions.
I prefer to not walk around in public with my pouch hanging out of my pants. As a colostomate, I can irrigate which mostly keeps me from having any movements throughout the day. At home though, I will leave the pouch out of my waistband. It doesn't get heavy enough to cause any issues with tension on the adhesive. Tucking the pouch in can impact how far the output will go into the pouch. You can just tuck in the tail, which will allow you the full capacity to be used. However, it's usually wise to empty the pouch when it is at least 2/3 full. A completely full pouch has it's own set of obstacles to deal with!
Hope that helps some. Like I said, others will be along to provide their experiences.

David

[casy0909]

Thank you so much for all this great information! It's very helpful and I really appreciate you taking the time.

[fapope]

Casy. So much is trial and error and a good stoma nurse. I always used a convex bag to place a bit more pressure on the seal. This worked with my Colostomy but not my Ileostomy, where slight leakage burned my skin. I tried a barrier ring and stoma paste. But found the stoma paste to be more effective when combined with a convex bag. You may well find the opposite. I eventually settle on Hollister ceraplus bags which have a second adhesive band around the base plate. If anything slipped past the base plate this second ring would contain it. I always used a drainable bag and would get about three days or change when it felt a bit itchy. Rectal mucus is discussed frequently on this forum if you want to do a search. It may clear up or reduce over time, it may not. There are two basic options. Irrigation or suppositories. The suppositories were magic for me and I eventually only needed one every couple weeks or so. For my particular sensitive skin I generally used Hollister products and found their reps and their site very helpful. You may need to sample several different makes to find your particular one. There are also several facebook groups in the UK and Australia which are very informative if you join them. You just use the search function they have to find all the answers. PS Showering without a bag is heaven.

[Snowgoose]

Casy,
Here's my input. Everyone has a different situation, my answers may or may not fit your situation. I'm a bit unique in that I have a loop ostomy where feces comes out of one side and urine out the other.

Is a barrier ring necessary? And when you put one on, is it supposed to touch the stoma? I'm pretty sure that the bag/wafer itself is supposed to go a little bit away from the stoma and not touch it, but I'm not sure about the barrier ring.
Not sure what you are asking here. I use a two piece system and the wafer has both a barrier ring surrounded by a tape band.

Why use a barrier ring instead of paste? All the nurse told me at the hospital about paste was "Oh, don't use that." Does paste not hold up as long as the ring would?
I tried pastes, they never worked for me. I cut barrier rings in quarters and apply a strip over an old surgery scar.

Do people prefer drainable or disposable bags? One-piece or two-piece?
I have used a drainable two-piece since day one.

How much pressure can you actually apply to the stoma when trying to clean it? The gunk from the barrier ring is really hard to get off and I never feel like I'm getting the stoma itself very clean because I was told to barely touch it because you aren't able to feel how hard you might be rubbing it.
OT Dave described this perfectly

How many days do people get using the same drainable bag? The nurse in the hospital told me to change it in 5 days, the visiting nurse said 3 days.
I vary according to what i am doing. From 3-5 days

Before all my recent health issues, my usual state was always slightly constipated and I'm trying to figure out what foods are "safe" to eat to help with constipation. I haven't branched out to trying too many things that are off the restricted diet list because I'm still in the phase of being too scared to eat too much and have problems arise. Does anyone have suggestions for helping with constipation?
Can't help here as the urine mixed with feces is usually an easy drain

I'm also having a hard time dealing with the mucus and pressure sensation in my rectum. I wasn't told that this was something that was going to happen and it happens very frequently for me, like at least every hour I have to run to the bathroom. Any suggestions on how to cope with that?
I have that occasionally. I believe it will diminish as your system adjusts, that's my opinion, I could be wrong

Do you leave your bag hanging outside your pants or tuck it in? Does tucking it in put more strain on the adhesive or restrict the output flow at all?
I have worn mine outside since day one. Wear all shirt tails out to cover it and suspenders to keep loose pants up. I am an active person, plus I have a prolapsed stoma, so I avoid any pressures on the system. Tried inside the pants once and had a mess when a full bag ruptured before I could get to a restroom. Never again!

I'm sure in time you will find what works best for you. Good Luck

[casy0909]

Thank you everyone for all the information! It has really helped. I'm experimenting while trying not to waste too many supplies and hopefully soon I'll figure out what works best for me.

[Lerbus]

You have received great input. I will attempt to just share my perspective. I use a barrier ring which gives me a little longer wear time. I warm the wafer and barrier ring in a heating pad and then I apply it to the wafer molding and thinning it so it will adhere so it is away from the stoma by 1/8”. Obviously that means I use a 2 piece appliance which allows me the most flexibility. I change every 3 (occasionally 4) days. Don’t get too excited if you have breakthroughs occasionally. It just happens to all of us.

I do best when I keep my output a little thinner than my specialist likes. MY diet is quite restrictive. This isn’t the case for many ostomates. I have been cautioned to eat a very low fiber diet. That includes no veggies and most fruits, as well as no rice, pasta and beans, etc. I use pure grape juice and chicken if I become thick/constipated.

I never wear my bag on the outside my pants. Your output will find its way out into the bag and will not be restricted unless your pants are very tight. I use adhesive remover wipes before applying a new wafer. Having an ileostomy isn’t fun but the alternative isn’t either. Good luck and welcome to the club.

Cellebellar degeneration 2011, revisions and hernias-several,

[ron in mich.]

Hi Casy i have a flatter stomach so i use a convatech flat wafer with a little paste at the bottom of my stoma as i have a dip there but thats all i use, i beleive less is better. good luck

[rbennatti]

I was very thankful to see this topic when I joined this group today. I am 71 years old but a relatively recent ostomate. I have been home about 6 weeks after three months in two hospitals, where I arrived with severe dehydration, acidosis and kidney failure due to two days of diarrhea. All I knew was that I was tired but my wife forced me to the ER. (and probably saved my life).At these hospitals they ran multiple blood tests,scopes of the entire GI tract, CAT scans, X rays, MRI's to determine the cause of my problems, After all these tests results were still inconclusive.During one evening CAT scan they observed my colon rupturing and they did emergency surgery (iliostomy). After an extended periods of PT and OT I was able (thank god) to come home. Their guess is that it is Crohn's disease. I use the Hollister Ceraplus Barrier and Pouch, their barrier ring, ostomy powder and 3m Cavilon barrier wipe. While at the hospital I was told the pouch/barrier should be good for a week. I did get it to last a week once but am usually lucky to get 5 days before a leak. Before reading your comments I was wondering what I was doing wrong. At first I had large amount of liquid being produced every morning requiring multiple emptyings of the pouch. I have experimented with foods to thicken the output but it seems that a very thick output can also produce problems,this has happened multiple times (including this morning a 4 :30, I wake up every two hours at night to check the barrier and pouch (and empty it if necessary). This morning I could tell by feel that the output was traveling from the stoma to the edge of the barrier as well as going into the pouch. Is this a result of output being too thick?? I know all about thickeners...would a thinner be needed (such as apple juice?) Well, I have gone on too long...I do have other questions/concerns, but these will wait for another day. Thanks you all for being there.

[Meli]

Hi there!
You've gotten great feedback. Here's what works for me.
First, it took me a good 6 months to really get mine to work with me, not against me so when it busts in the middle of the night just know it will get better. Be kind to yourself.

I'm allergic to a lot of adhesives so I had horrible reactions and irritation so the barrier ring (donut) really helps me. Yes, get it close to the stoma. It won't hurt you. The reason for the room with the wafer is stoma irritation and your stoma (mine does) can change size during the day so barrier ring protects the skin from irritation from output directly on it.

I hate paste. Tried it and failed miserably. It also didn't stay on well for me and got messy.

I use cardinal removers and they're great. I mostly use coloplast for the rest. When it's irritated, I blot flonase on the bad spots and it clears up.

I also use the antimicrobial moisturizing spray to clean it because I love the extra clean feeling. So remover, wipe, moisturizing spray, wipe, flonase (if needed), barrier spray, skinprep, barrier, then wafer and bag. I put the barrier ring in my underwear (out of package, but with strips still on it) to warm during the process so it sticks better.

After putting on the wafer and bag, I warm with my hands and then add the elastic barrier strips to ensure no leaks or busts. Then wrap my hands around to warm.

I use a 2 piece so I can use drainable bags and closed depending on the day.

I use the liquid deodorant, but I also have the deodorizer pills that thicken the output and they're fantastic when you're out and don't want a bag of liquid slapping around. It really helps when traveling.

I wear my bag both ways. Out and use a pouch cover (on Amazon) or long shirts, etc. If it's a slow output day or time, I tuck it in. When exercising, I tuck it in or wear the band.

My mucus took 7 months to show up and I do suffer from intense pain from it so I use enemas to clear out that section of my intestines. It helps. For constipation from stomach to stoma, I like shots of pickle juice, stomach massages, heating pads, and after several doctors did it, I realized I can put my finger in my stoma to see if it's something close and struggling. It helps, too. Some drink a coke to get things moving. I have found yelling profanities at it does little, but I still do!

For pain, I get nerve blocks because I do have trouble with absorption. I also take baclofen or my body doesn't move the output.

I'm not one to listen to about diet because I'm rebellious. I was strict and still miserable so I tossed that plan out and I eat salad and I'm miserable, but happy with my choice.

Good luck! I hope this helps! Let us know how you're progressing!

[fapope]

The are a number of Ostomy Facebook groups which are worthwhile joining. The Australian Ostomy Support Group is very good. There are UK ones as well. Once a members you can search any topic with in the group for very practical remedies.