It's time for a change . . . but how do I slow this thing down???

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Dijenga
Posts: 25
Joined: 2021-07-14 22:12:34

It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

I got my ileostomy January 15, 2021 and life changed. I'm used to being in control -- even of bodily functions most of the time.

I usually wake around 3:00 AM and empty my bag whether it is 1/3 full or not in hopes of resting the remainder of the night. Often I will have almost no output between that time and 7:00 AM. Get up, and (think of the Dunkin Donuts guy) "It's time to change the appliance!" I usually change my appliance on Tuesdays and Saturdays except when there is a leak.

On Tuesday and Saturday I get up, eat 8 marshmallows (the only thing that has EVER helped) after checking my blood sugar (diabetic) and start watching the time. I'm usually done with the marshmallows about 7:10. I check to make sure my supplies are laid out and ready. Then sit down and watch TV until 8:00 since it usually takes 55 minutes before the marshmallows slow things down. Then I head back to attempt to change everything.

Unfortunately, some days that hack just doesn't work. In fact, when the marshmallow trick doesn't work, I have the highest output of the month that morning, sometimes even spurting beyond the edge of the changing pad I use. I have been know to just put the disposal bag over my stoma while getting so angry I have had thoughts of harming myself.

Is there ANY WAY to slow the output so that the bag can be changed and I still feel like a human being??? Not a way that works sometimes or most of the time but every time!!!

Sometimes I imagine the doctors getting their jollies thinking about this happening to their patients. Such smart people, but did any of them ever consider devising a way to shut down the output for 10 to 15 minutes to allow people like me to keep some dignity?

About to go back on chemo (change from CHI St. Vincent to UAMS) Monday. According to my former oncologist this stuff may cause blindness and I can't burden any of my family members to fight with this stoma's proclivity to increase output as soon as it feels air.
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oliveoyl
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Re: It's time for a change . . . but how do I slow this thing down???

Post by oliveoyl »

Hi Dijenga I have an ileostomy also. Here's what I do. Stop eating the afternoon before the change. I usually stop eating around 4pm or 5pm at the latest. I drink water whenever I'm thirsty, but no food. Then in the morning I do not eat or drink anything until I change my gear, which I do as soon as I awaken. Just don't eat. It takes discipline, but doing a change without any discharge is awesome. If there is any output, it is only a tiny bit, very easy to handle. And after you change have a lovely breakfast.

It means going without food for 12+ hours, usually 14 hours for me. I think the marshmallow thing is a myth.
Olive
Crohn's. 2 stomas. Permanent ileostomy, mucous fistula
"I yam what I yam." Popeye
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Dijenga
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

As an diabetic, don't know how that's going to work, but I'll have to try it.

The marshmallow thing does work (for me most of the time), it just isn't consistent . . . likely related to the type of intake the evening before. Guess I'll have to chart that.

It has always confused me since the surgery how I can go for 4 - 6 hours at night with no output while sleeping, then (sometimes) as soon as the appliance is removed for changing, output goes into overdrive.

Maybe it was just playing possum?
Mysticobra
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Joined: 2016-01-20 23:25:36

Re: It's time for a change . . . but how do I slow this thing down???

Post by Mysticobra »

Ok.
I've got an ileo also.
I've had it six years a d tried the no eating before changing which works. But at times I'd eat right afterwards and get a leak. So I stopped doing that.
I noticed that when I ate about 15-20 minutes later I'd have to empty two to three times because it's pushing the last food out.
So.
I change once a week.
When I get up I eat a breakfast sandwich as usual and wait. I empty several times a d wait about 45 mi minutes. Most... ".most" of the time it's done for about an hour. So I get up strip it off and get in the shower. Clean it all up. Of course I have everything ready to go.
But I also put a towel down. A single towel I use for accidents. And a trash can with a shopping bag in it and I aim or my stoma is aimed at it for accidents. And they do happen.

But using this method may not work for everyone. Probably won't. But it works for me to eat first because I know it will flush out prior stuff and then stop for awhile.
It takes awhile to find a groove. Trust me. I've had Yellowstone geysers happen.
I also keep a few qtips to get the slight oozer.
Watch what happens when you eat and how long it takes to go through and when it stops keep track of how long its dormant. Seems to me even marshmallows will push out stuff before it plugs things up. I've never tried it.
My two cents .
Good luck. Keeping track on what it does dhri the day. Not at night is your best option.
I only empty once at night. Then nothing for a long period..
Give it time. We all have to figure it out. And it does take time.
Richard.
Mysticobra
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Mysticobra »

Sunday.
Just changed.
No matter what Ya do if it wants to get busy it gets busy.
If you know what I mean. I stay in the shower until it slows. And it did.
Dried off as soon as I could and applied the components.
It happens to all ileo people when we change.
Most times I'm lucky it will be dormant. But I don't get angry if it does.
I just try and do the best I can.
I use a ring. I swear as soon as I applied it it leaked now I do not know if it went under it. So I kept going. Those things are sticky and hard to remove if you just put one on. So I left it and I will fi d out if it went under. Because it will leak and I'll have to change it.
Even after just six years I've become pretty good at changing. So it doesn't bother me.
I don't want to do it but Ya have to.
Don't get angry. Get even.
You can't let it control you. You have to control it. That takes time a d your new to this.
I know its not easy to hear but time is your best freind. You'll look back after you figure out what to do and what works. A d we arw all different in what works and what doesn't.
Cheese. Mashed potatoes. Slow me to a crawl. But the downside to eating either is it causes leaks because it pushes under my wafer and ring. But they will slow you down.
So be careful. Too much will block it.
Richard..... My two more cents. You can pm me if you like. Its hard at the beginning. And that's where you are.
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To Dream a Dream
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Re: It's time for a change . . . but how do I slow this thing down???

Post by To Dream a Dream »

Have you considered talking to your GI provider about medication? I detest taking any sort of drugs, but generic Imodium has helped me. I cut the tablets in half & adjust the dose accordingly.
Thank you for posting on our board. And thanks to all of the above for their timely informative comments. That is what UOAA is all about. Reaching out & helping each other.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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Dijenga
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

i am on chemo (irinotecan, 5fu, and leucovorin) so I have to take Immodium and diphenhoxalate (? it is an opioid) and under doctor's orders, take more that the box shows I should take in any 24 hour period.The irinotecan causes hand and foot syndrome (resulting in broken / peeling skin on the soles of my feet and my palms) plus I am a diabetic. Shower thing is kind of out of the question especially while on chemo. I shower the afternoon or evening before a change. External moisture doesn't bother the appliance.

My new oncologist gave me something at my infusion yesterday that they said would help with the early onset diarrhea (first 24 hours) and I am going to have to find out what that was and see if I can get some for home use occasionally. It shut my stoma down from midnight to 8 AM. Then had one semi-solid movement and still waiting for the next round to start.

Change appliance 2-3 times / week depending on how active I have been. As I said earlier, external moisture isn't a problem . . . sweating, on the other hand,is for me. I have trouble getting anything to stick to me. Cardiologist and others who have hooked me up to EKG devices hate me. Those little sticky things wont stay more than a few minutes -- even if I shave. Same with the area around my port, and I still have to add tape most times to keep the plastic sealing cover from falling off.

Marshmallows must take different times to work with different people. First person told me 30 minutes, another 15 minutes. Neither work for me. It has to be 55-60 minutes before it kicks in. When I time it right, not even a dribble. If I have to change any earlier, its not going to help. Much longer and it won't help.

I don't know how anyone could deal with this for 6 years. If they tell me they are not going to be able to put my colon back together it's probably over for me. Especially since the chemo sometimes causes blindness. I'll not burden my wife with having to take care of this. Bad enough to be ripped away from my photography, art, webdesign, etc. without having to curse my best friend with something like this on me.
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ot dave
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Re: It's time for a change . . . but how do I slow this thing down???

Post by ot dave »

Chemo is going to play havoc with your GI system. Once you finish chemo, things should start developing a more consistent routine for you. What works now, may not work after and what doesn't work now, might work after. Hang in there and let the chemo do its job. The GI system is just going to be unpredictable until you finish.

David
stage III rectal CA 12/08 - colostomy 3/09
"Gatoring since 2010"
Psalms 91:2
JerryNYC
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Re: It's time for a change . . . but how do I slow this thing down???

Post by JerryNYC »

Hi Dijenga, As you note, diphenoxalate is an opioid. Was it prescribed to control pain or to slow down bowel function? If it is to control pain, then it is appropriate but if it is to control diarrhea, then it would seem to be overkill. There are more effective and less toxic ways to control bowel movement. The last thing you want is to develop an opioid addiction, especially if controlling pain is not an issue. I have pretty good luck with drug store, over-the-counter loperamide to shut things down (start off with 1/2 tablet because sometimes to works too well). Don't change any of these drugs on your own without checking with your doctor, especially with your new oncologist, who seems to be on the ball. I've never had any luck with marshmallows, although they seem to work for some people. They are made up of gelatin and sugar, neither of which might be expected to slow down bowel activity. And as a diabetic, you need to control your sugar intake. Hang in there and keep us posted. (Gotta share something with you: when I wrote "loperamide to shut things down",my computer, who seems to have a mind of its own and a weird sense of humor, changed the "u" in "shut" to another vowel, which it maybe thought was more appropriate.
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rickmurtagh
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Re: It's time for a change . . . but how do I slow this thing down???

Post by rickmurtagh »

I took several combinations of things like Imodium and Lamotil - one or the other every two hours. I was even on Opium for 6 months to slow things down (yes your doctor can prescribe that). Eventually (it has been a lot of years since the start of this ride) things calmed down. I get into rhythms that work for eating what I want or changing my appliance or not ruining "date night" by changing it early. I know things. Even a slow poke like me can learn a little. 20 minutes after I eat output starts and continues for 10 or so minutes. Early on loaded nachos gave me thick easy to manage output - later on, not so much - okay not at all. Dunno why. But I do know years on I manage to keep my routines flexible depending on what my ileo is doing and how my body is responding to just about anything I do or put in it. For example peanuts could kill me, quinoa also, and as it turns out 9 thinly sliced cucumbers from a cucumber salad is too many and will cause a blockage - likewise, too many pickles - surprise.

I know when I do have a blockage, a heating pad will help move the liquids along (only slightly advancing the blockage) but I become extremely dehydrated and cramps become a HUGE issue. Incapacitatingly huge. Eating when I have a blockage is NEVER a good idea - at least for me. After three days with a blockage medical intervention is required, fever usually starts and I assume sepsis may start.

I know usually my worst blockages last three days (happens several times a year). I have a hernia that can aide me in telling if my blockage has begin to move. Sit ups don't help. Neither does my wife gently walking on my stomach. It has been years since I have had a major blowout and seldom get anything more than a small leak.

Barrier rings, strips, stoma powder, hy-tape (that's right look it up), belts, abdominal binders, are all things that can help, but they are not always a permanent solution.

All this rambling to say remain flexible, try everything, try anything, if you really think it may help. Nothing has been a permanent aide, except maybe the hy-tape - go ahead - look it up, buy some in 2" width.

Lastly - listen to Dave - he knows things...
Ileo, colectomy 06/09
Takedown 04/10
Sacral infect. 03/11
Perm ileo 04/11
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Dijenga
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

JerryNYC wrote: 2021-07-31 20:33:15 Hi Dijenga, As you note, diphenoxalate is an opioid. Was it prescribed to control pain or to slow down bowel function? If it is to control pain, then it is appropriate but if it is to control diarrhea, then it would seem to be overkill. There are more effective and less toxic ways to control bowel movement. The last thing you want is to develop an opioid addiction, especially if controlling pain is not an issue. I have pretty good luck with drug store, over-the-counter loperamide to shut things down (start off with 1/2 tablet because sometimes to works too well). Don't change any of these drugs on your own without checking with your doctor, especially with your new oncologist, who seems to be on the ball. I've never had any luck with marshmallows, although they seem to work for some people. They are made up of gelatin and sugar, neither of which might be expected to slow down bowel activity. And as a diabetic, you need to control your sugar intake. Hang in there and keep us posted. (Gotta share something with you: when I wrote "loperamide to shut things down",my computer, who seems to have a mind of its own and a weird sense of humor, changed the "u" in "shut" to another vowel, which it maybe thought was more appropriate.
Irinotecan causes diarrhea almost immediately (except yesterday's treatment - I'm slowed way way down, almost stopped up, only two movements in 24 hours).

Ran out of diphenoxalate so I was having to use loperamide to control late onset diarrhea (Irinotecan has early and late diarrhea episodes) which this time was later than usual. Following the chemo instructions I treated with the loperamide except the 6 single pill doses after diarrhea stopped - I did 2 and increased the time between from 1 pill every 2 hours to 1 pill every 4 hours after a normal stool). Almost like I hit a brick wall. Oncologist suggests miralax stool softener and said dulcolax stool softener is too harsh. Don't know about that but if the miralax don't work, we'll be taking the dulcolax when next dose is due.

Former oncologist's instructions were : "Take 2 loperamide wait 2 hours. If diarrhea persists, take 1 diphenoxalate (following the instructions above) alternating loperamide and diphenoxalate." Usually, after the first diphenhoxalate, diarrhea was gone for several hours. Since I began my chemo in April, I have taken 25 diphenoxalate. Way more than I want, but I have other opioids designated for pain which I have never taken. Right now, Tylenol does the job for my minor pains. Oncologist said diphenhoxalate were strictly for help with the diarrhea.
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Dijenga
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

ot dave wrote: 2021-07-21 07:53:51 Chemo is going to play havoc with your GI system. Once you finish chemo, things should start developing a more consistent routine for you. What works now, may not work after and what doesn't work now, might work after. Hang in there and let the chemo do its job. The GI system is just going to be unpredictable until you finish.

David
I am hoping that this thing can be reversed. Surgeon - in agreement with the oncologist in the hospital -- said that they should be able to do that in 3 - 6 months if tumor shrinks and detaches from spleen as expected. I'm over 6 months out and no hint that this is happening. I attribute much of that to a lackadaisical attitude on behalf of my assigned oncologist in the satellite infusion center. He wasn't in a hurry to get my chemo cranking.

Because of my personal convictions, there are some things I won't take. Discussed this on my initial visit, and he blatantly lied to me about two different medications which I will not take because Avastin contains blood (will not accept blood products) and the other (a biosimilar called Mvasi) contains human DNA (Cannibalism in my mind). He tried to convince me that I would die because these are the only two that could be used.

I did research and found that Irinotecan is plant (Chinese "Happy Tree") and oxaliplatin is platinum based. He did not want to give me the oxiliplatin because of my neuropathy, so it was decided in the last cycle in May to start the Irinotecan. Had a reaction, they feared I was having a heart attack so I got to spend 3 days in ICU. Was released about noon on the third day. Called oncologist to try to get the 5FU and Leucovorin infusions and he told me come back in 2 weeks.

Then I had the same reaction to the Irinotecan, but knew it wasn't a heart attack. If he were familiar with this treatment, he would have known to simply slow the infusion. This almost always stops that reaction. Instead of slowing it down, he actually cut short my infusion that day as well, reducing the leucovorin by 1/2 and halting the irinotecan completely. Came back in two days to remove my 5FU bolus and have never returned. My primary care physician was able to get me a referral to UAMS (which would have been my first choice, but could not get in because of Covid protocol in early January.

I actually missed 3 more infusions before I was able to get my referral to UAMS and get scheduled for infusion. I can talk openly with both of my oncologists, and when I presented the option of a slightly slower infusion, they thought it was a feasible idea and have found that it actually works. Learned that trick from a young woman named Brenna whose oncologist had taken her off avastin and oxiliplatin after some life threatening reactions to both. When she had the same reaction as I did, her oncologist immediately slowed her infusion after a brief pause.That set me on the path to researching the effect and it is a recognized way to work around the reaction.

To be honest, I don't know if I can deal with this for a year or longer. Between the chemo, the ostomy, being unable to work, and Social Security not seeing where my stage 4 colon cancer with mets to liver, spleen, pancreas, and lungs could possibly keep me from working I have had about all I can take. Add to that I am 15 months out from paying off my home and cannot make my current mortgage payment and it is a recipe for implosion.

Be well, the alternative sucks!
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Dijenga
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

Mysticobra wrote: 2021-07-16 20:17:04 I noticed that when I ate about 15-20 minutes later I'd have to empty two to three times because it's pushing the last food out. .. . Watch what happens when you eat and how long it takes to go through and when it stops keep track of how long its dormant. Seems to me even marshmallows will push out stuff before it plugs things up. I've never tried it.
I think that makes a lot of sense. Gotta make room for the new crap I guess.

Thanks for giving me something to think about and experiment with.
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ot dave
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Re: It's time for a change . . . but how do I slow this thing down???

Post by ot dave »

If I'm not mistaken, a side effect of 5FU is vasospasms. It's been awhile, but I think it was the 5FU that caused me to have vasospasms every Wednesday around lunch time....felt like I was having a scheduled heart attack every other week! UAMS? You in Arkansas? I'm heading to Little Rock next week for a 5 year colonoscopy. UAMS is where my surgical oncologist is located. My medical oncologist is much closer to home in Fort Smith....
stage III rectal CA 12/08 - colostomy 3/09
"Gatoring since 2010"
Psalms 91:2
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Dijenga
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Re: It's time for a change . . . but how do I slow this thing down???

Post by Dijenga »

We are about as far apart as we can be and still be in Arkansas ... Crossett, to be exact. Tried closer to home (Monticello - wouldn't take a sick dog to Crossett hospital). Last time I took my daughter there they tried to re-educate me. Doc told us that your spleen is on your right side of your upper abdomen and gall bladder is on your upper left side.

Walked out and told admiting nurse to call the sheriff's office because if my daughter was not released in 15 minutes they were going to need them to protect the doctor. Back then they knew I not only could, but would. "But I'm not that way anymore" . . . not since 2015.

2 weeks before her 18th birthday and they tried to take ny child away over a pulled muscle in her back that they blamed on her gall bladder.
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