New ileostomy

[paula]

Hello there, already spoke about this subject, and "Button" and others have been very helpful. I went through two operations and from a colostomy, to an ileostomy, which has been difficult. There is a lot of output, unlike the colostomy, and the bag fills up frequently, to the point I'm afraid to go out anywhere, for fear of it filling up while I'm out. This has only been a couple of months, my question is, will it always be like this? or does the output get to be less? Any advice will be extremely helpful.

This is for "Button", as you've been following my journey. Feeling better, but still not too much appetite and lack of energy. Did not put on any weight, even though I eat. Hoping things are well with you.

Thank you everyone for any input.

Paula

[Lerbus]

Paula, I too have an ileostomy with significant output. Of course, the amount of output is reflective of the “input”. But like you I sometimes wonder if it is like mushrooming. I’m not sure what system you use, but I am using the Coloplast two-piece drainable components.It allows me to use a standard pouch and a high output bag. I use the standard out and about and trade in the evening and night. I rinse out the bag and hang to dry. The high output bag is a lifesaver for me. It allows me to relax at home and to sleep a little longer at night (I wish). My output is generally on the thin side. The high output bag accommodates a little longer between fillings. The longer you use the bag system it will get easier. Hang in there.

Ileostomy 2011, cerebellar degeneration, revision 2012 and 2013, “complicated hernias 2015 and 2017.

[Button]

Paula:
Lerbus has offered you good advice. A two-piece system with interchangeable pouches might serve you well. A high output pouch for when you are at home and during sleep. A regular pouch when you are out of the house.

I am a small eater. Even so, I empty my pouch about 6 times a day. I think most people with an ileostomy empty/drain their pouch 6-8 times, as an average.

I previously mentioned the use of Imodium to slow output. You can explore taking Imodium 1/2 hour before a mini-meal.

You can also employ a strategy of intermittent fasting to lessen output when you have a planned outing outside of the house where you do not want to be concerned about a need to empty your pouch. I will cease eating for 10-12 hours before an important engagement where I do not want to be bothered about anything dealing with a potential pouch emptying.

My ileosomy was in high output mode for about the first 8 months after my initial surgery. I was emptying the pouch at least 10-12 times a day. It was emotionally taxing.

I think it takes time to feel comfortable emptying the pouch away from home. When you do, take command of the handicapped bathroom stall. Take supplies with you and a small fragrant spray in case you are nervous and have an unexpected spill. And then continue your day.
Karen

[paula]

Thank you both for your input. It always helps. Will just have to adjust. Another problem I'm starting to have the last couple of days, is the appliance itself not sticking to the skin, and therefore, stuff coming out of the sides. Today, had to change about 4 times. Having a nurse coming in to see what's going on. Always something.

Again, thank you.

paula

[Mysticobra]

I can write what I do but details are hard for me to put down here. Not that I can't do it. But some here speak (write) so well.
Okay.
I go out everyday. I have high output. I empty 12- 15 times a day.
But if I know I'm going out to do something I don't eat. Your output is equal to your input.
At least in my situation. I'll eat a breakfast sandwich in the morning and that's it.
As soon as I eat it my bag fills. So. I'll empty it and wait. You know. Get dressed wash my hair and get ready to go out. By that time it's ready to empty again. So I empty again.
I goof around for another half hour or so and there may be more so I empty again. After that I leave. No more food until I get home. I'll be out two hours and by the time I get home there may be a little in there but not enough to worry about. But I'll clean it out and go eat. I'm home now but as soon as I eat it starts filling again.
As long as I'm eating it's filling. I had times when I was out it filled but I'll just stop and empty. I try and don't let it run my life on the outside.
Now as for night time. For some instinctive reason I get up. I have woken up after a unusually long period of sleep and find myself on my back. Bag will be at the bursting point. I mean one more little toot in there and I'll be floating away.. What's weird about it is I've never rolled onto the bag when it's been that full in my sleep. Weird. If I'm awake enough when I turn over I usually just tap it with my arm to feel how full it is. And sometimes I get the so full it's huge surprise. Lol. But I'm on my back like it's an instinct.
I've come to the conclusion that that as long as you minimize eating before going out and no eating while your out in my situation I can be out for hours without having to empty.
But if I eat. I can expect to empty.
Now you know what I mean by putting my words down in writing. But this is just my experience. And how I get along with it.
Confusing. Ya. Sorry. Lol. I gotta go empty. Watching Netflix and eating and emptying go hand in hand in hand.
Richard.

[paula]

Thank you, Richard. Yes, I've found that to be the case, eating creates more output, even though, it seems mine is always filling. As far as going out and not eating, etc, again, I used to have a colostomy, and was able to really do anything, go to dinner, etc. without worrying about emptying the bag, so I'm a little discouraged at the fact that this is totally new and different. But, I will in time get used to it, as with anything else. I've only had it for about a month and a half, so I'll have just to give it time and adjust. Again, thanks so much for your input.

paula

[Mysticobra]

Your welcome.
Just (you won't) don't let it hold you back.
I go out and eat. We had our 40th last year.
15 family members. I didn't think twice.
Thing is we were at the restaurant two hours and an hour after eating I still didn't have the need to well... you know. Go.
You've probably had to deal with the whole situation alot longer than I. You mentioned a colostomy. I neve had one of those. I had a pouch. (that didn't work. made things worse.)
But it seems to me you will adjust well. I didn't think I would but it's so easy for me compared to what it was. I would much rather be out and have to empty than what I was doing.
I carry a bottle of water with me to rinse it. Messy if I don't. Seems to get all over. But if I put water in there first and everytime it cleans it easier than having the goop. Then I just wipe the end with tp and done. Just water at the end and wipe it dry. That's my method.
I've had to do it without rinsing and I seem to make a mess. And everyone here who has one here knows what I mean. Cause that stuff gets all over. Lol.
I'm rambling so I will leave.
Good luck!
Richard.

[paula]

Hi Richard, glad to know you were able to go out and celebrate your anniversary, without mishaps,as that is my biggest fear, we're on our 43rd, . Yes, I had a colostomy for 16 years, and it all was fine, no problem going out, as the output was different, and I only had to change bags, a couple of times a day, and now its about 6 or 7, but as I said, I will get used to it.

Again, thank you for sharing. Always welcome new tactics. Have a good day..............paula

[Diane C]

I know this is hardly ideal but I'm still wearing a 2-piece Convatec system because the irrigation sleeves are the strongest I've used. (I used to irrigate when I had a colostomy.) For now, I don't wear dresses or skirts so my slacks hide the loooong irrigation sleeve. If I don't eat, I get VERY gassy and feel unwell. Not just food is in the output -- but bile from the liver and other bodily toxins. Yes, I hydrate but require food -- for many reasons as we all do. Since I'm trying to heal a post-surgical wound in my "posterior," I must eat much protein. I've cut back on veggies and fruit and they're important. The irrigation sleeve gives me needed comfort. I didn't think Medicare would cover the purchase of them (5 in a box) but it did -- when I had an ileostomy -- as ileostomates can't irrigate.

The Convatec high output pouch did help. But over time, it sort of lost its "integrity" or structure. I should have asked for a sample without a filter as filters are now useless to me. It became kind of stiff and noisy.

As for leakage above the stoma and under the wafer, I'm now using the material from the Durahesive wafer when I cut out the circle for my stoma. My ileostomy was created on a scar from a previous surgery and the abdominal skin sinks in on both sides of the stoma. Durahesive wafers without tape are usually kind to my skin although I do think I'll have to rotate soon as others have mentioned. To make them adhere more, I use a hair dryer sometimes and heat them before applying. I also use a piece of Stomahesive Strip on top of the material I cut from the Durahesive wafer. These seem to do better for me than an assortment of seals but I'm still experimenting.

I do find that chewing (thoroughly) almonds helps. The stool becomes more "crusty." Oatmeal and grits (no bacon) do the same. The wound care nurse suggested I take Metamucil to thicken the outputr with more fiber. I still equate Metamucil with laxatives so I'm a bit leery. Also, I checked the ingredients of Meta Mucil (is this the same product?!) and it now contains psyllium. This USED to give me terrible cramps when I suffered from constipation although one must hydrate quite a bit when one takes it. I'm fearful of gas so for now, avvoiding it. I gave my Metamucil to my elderly mother and will ask for it back as she relies on Miralax when she needs help. I am certain that did not contain psyllium so maybe the ingredients changed... unfortunately.

Life is definitely a journey. When we fail, we keep trying! Wishing you successful trials! Me, too! And all!

Diane C.

[Diane C]

I know this is hardly ideal but I'm still wearing a 2-piece Convatec system because the irrigation sleeves are the strongest I've used. (I used to irrigate when I had a colostomy.) For now, I don't wear dresses or skirts so my slacks hide the loooong irrigation sleeve. If I don't eat, I get VERY gassy and feel unwell. Not just food is in the output -- but bile from the liver and other bodily toxins. Yes, I hydrate but require food -- for many reasons as we all do. Since I'm trying to heal a post-surgical wound in my "posterior," I must eat much protein. I've cut back on veggies and fruit and they're important. The irrigation sleeve gives me needed comfort. I didn't think Medicare would cover the purchase of them (5 in a box) but it did -- when I had an ileostomy -- as ileostomates can't irrigate.

The Convatec high output pouch did help. But over time, it sort of lost its "integrity" or structure. I should have asked for a sample without a filter as filters are now useless to me. It became kind of stiff and noisy.

As for leakage above the stoma and under the wafer, I'm now using the material from the Durahesive wafer when I cut out the circle for my stoma. My ileostomy was created on a scar from a previous surgery and the abdominal skin sinks in on both sides of the stoma. Durahesive wafers without tape are usually kind to my skin although I do think I'll have to rotate soon as others have mentioned. To make them adhere more, I use a hair dryer sometimes and heat them before applying. I also use a piece of Stomahesive Strip on top of the material I cut from the Durahesive wafer. These seem to do better for me than an assortment of seals but I'm still experimenting.

I do find that chewing (thorughly) almonds helps. The stool becomes more "crusty." Oatmeal and grits (no bacon) do the same. The wound care nurse suggested I take Metamucil to thicken the outputr with more fiber. I still equate Metamucil with laxatives so I'm a bit leery. Also, I checked the ingredients of Meta Mucil (is this the same product?!) and it now contains psyllium. This USED to give me terrible cramps when I suffered from constipation although one must hydrate quite a bit when one takes it. I'm fearful of gas so for now, avvoiding it. I gave my Metamucil to my elderly mother and will ask for it back as she relies on Miralax when she needs help. I am certain that did not contain psyllium so maybe the ingredients changed... unfortunately.

I've increased the amount of liquid Immodium I take before meals. I don't think it's helping too much -- yet. May increase. The wound care nurse was leery but this is NOT causing constipation or an obstruction in ME. It might in others if they over-do it.

Life is definitely a journey. When we fail, we keep trying! Wishing you successful trials! Me, too! And all!

Diane C.

[Mysticobra]

Hi Richard, glad to know you were able to go out and celebrate your anniversary, without mishaps,as that is my biggest fear, we're on our 43rd, . Yes, I had a colostomy for 16 years, and it all was fine, no problem going out, as the output was different, and I only had to change bags, a couple of times a day, and now its about 6 or 7, but as I said, I will get used to it.

Again, thank you for sharing. Always welcome new tactics. Have a good day..............paula

Paula.
Are you changing bags when they fill?
If so that's not necessary.
Sounds like you are using a closed system.
I don't know. I have a two peice with a velcro closure and empty.
I don't use but two bags a week. And just change the wafer and bag.
I could probably go seven days but I'd rather just give my skin a chance every 3-4 days.
And it also give me a chance to check and make sure everything is ok. And now that I've been doing it awhile it really doesn't take me that long. I'll leave it off for ten or twenty minutes if it's behaving. Feels good too! Lol.
43. Long time. It will be 41 in August. It's along time. Doesn't feel like it.
Good luck to you. But you shouldn't have to swap out bags that much. I don't know your methods.
Richard.

[paula]

Diane C., thanks again for all the information. I will try some of those methods. And yes, we all will be Ok.

Richard, yes, I do use a closed disposable bag, that's what I always used with the colostomy. I did try the open bag once, and it was quite hard and messy for me. However, I know I have to start using those, going to today, and just have to get used to it.

I haven't really been out too much, just for short periods of time, taking walks in the park, etc, still not ready to go out for long periods, as the output is quite a lot, couple of hours, or less, and its full again, being home its Ok, but out on the street, still confusing to me, but I'll get there, especially with the help of all of you.

Have a good day......................paula

[Diane C]

Keep the faith, Paula.

You might ask your doctor re Metamucil. I don't feel this is the right "move" for me right now but definitely could be wrong. If you take it, HYDRATE afterwards. I can see that the fiber may make the output more crusty. However, if not careful and without hydration, it can act as a laxative.

I'm not really recommending an irrigation sleeve -- it's quite long and you must wear slacks and it's NOT a pouch but for irrigating a colostomy -- but I'll admit I'm glad I purchased the Convatec ones They give me freedom from worry right now and allow me uninterrupted sleep -- which is healing. If I'm at the theater or ushering -- or in the future, on a long car drive -- I don't have to race to the ladies' room. Frankly, I only fill maybe 1/5 of it quickly and that amount of output would fit in a high output pouch but require more frequent emptying which isn't always so easy. I'm going to suggest the home health nurse order me more high output pouches until I can order my own products (probably Cymed Microskin 2-piece to care for my sensitive skin although its irrigation sleeves are adhesive and definitely not as secure). I'd not be wearing an irrigation sleeve if I were in a relationship. They are clear and you can see the output. There's almost no odor but rather unsightly except perhaps to non-queasy ostomates.

DO try Immodium liquid. Maybe discuss with your doctor although ducmy wound care nurse was not for it. I agree with Karen/Button on this one. You can titrate the dose. I've increased the amount a bit this AM.

Rotation of products sometimes seems like a VERY good idea. 3 wks ago I thought that Convatec's Ease strips were especially kind to the skin. This week, I'm back to Coloplast's Brava straight and curved products to "square" off the ostomy wafer. Who knows? Maybe next week, it'll be the Pink Hy Tape. Somehow the body rebels against these foreign "agents" at times -- so a change can help.

Also, Convatec has a product called Diamonds and Cymed offers Ile-sorb gel packets. These are small packets to insert in the pouch that make the output more gel-like and less liquid. They help to minimize output and I want to use them myself. They really seem helpful. I THINK Medicare covered the Ile-sorb; am unsure about the Diamonds.

Keeping our spirits up is more than half the battle. Experimentation is good. Share your info -- positive or negative -- to help yourself and us. Enjoy today!

Diane C.

[Mysticobra]

Paula.
As for emptying the open end all the time. Ya. It's.alot and can get.messy.
This is how I do it.
Because just emptying what's in there is messy.
I never let it get more than one third full. That's recommended anyways. (of.course there are times it has more or just gas.)
I add water from a bottle. I keep one in the bathroom.
I use it every time. It thins it out and really makes it easier for "me".
This is just how I do it. I have had to empty without adding water and yes. It is and will get messy fast. The water just dumps. I'll do it 3 times and then wipe the end with T. P.
Everyone has their own way. That's mine.
I take no thickener. No thinners. Nothing. I just eat.
Hope it helps.
Just add water lol. It truly makes it easier for me.
Richard.

[Button]

Paula:
Richard has given you excellent points to make draining an ileosotmy pouch less of an onerous and messy process.

A. Emptying and draining the pouch when it is 1/3 to 1/2 full.
Emptying and draining a pouch sooner than later is my preferred strategy.

B. Add water to the pouch prior to emptying and draining.
This is a key point. Adding about 1/4 cup of water to the pouch helps to loosen fecal matter that may adhere to the pouch. Adding water helps liquify the fecal output even more which makes emptying and draining easier.

Like Richard, I use a small squirt bottle and add water into the pouch through the opened tail. Carefully close and secure the tail. Then slosh the water around the pouch, mix and shake. Position the tail over the toilet bowel or use a plastic receptacle, open the tail and empty.

You can repeat the process 1-2 additional times - adding water, sloshing and mixing, and emptying - as needed.

In time, the process will become second nature. It takes me about 2 minutes now to empty and drain my pouch. It is simply no big deal.

3. Cleaning the end of the tail of the pouch before closing
I clean the tail with an additional few squirts of water. Some people use a few squares of toilet paper to clean the tail and the lower end of the pouch. I usually use an antiseptic towelette to wipe the outer surface of the tail and lower pouch at the end of the process.

You can find personal-sized squirt bottles on Amazon. They are stocked as perianal care squirt bottles (hemorrhoids, anal fissures) and for women following child birth.

Most local ostomy support groups provide “ostomy ambassadors” who provide 1:1 friendship and support to people with new ostomies. A real person, in-person, 1:1. This might be a nice support for you. Being able to meet and talk with a person with an ileostomy. For it is true . . . the care and pouching of a colostomy is different than an ileostomy. You are undergoing a huge change from what you are used to. Having an ostomy ambassador might be a welcomed support as you continue to learn and navigate your new ileostomy.
Karen