Medication options for slowing ileostomy output?

I'm very depressed in my morning routine. That's what starts my day. I need to get up 5 hours ahead of time so I can make it to work. I just focus on time, and stress if my stomach will slow down in the shower or not. I need to know what meds when combined slow down osteomyelitis output. Right now I'm on loperamide 2mg tabs 13 in am and 13pm, I'm also on tincture of opium and I take 1.2ml in the am and 1.2 at bed. Nothing seems to be working. I also tried lomotil. I was taking 13 in the am. I really need help. This is overtaking my life causing depression and no quality of life.

First... try not to stress. I'm an ileostomate for only 1 year plus some and have extremely high output. I cannot shower without my application on, as soon as I shut the water off, my liquid flows. I cover it with cling wrap and tape first. Second... I've tried many drugs to slow it down, but seem only to affect my body in a negative way. I occasionally take liquid Imodium... 2 tablespoons of it prior to being in the car without stopping for 2 hours. I found not stressing it helps overcome most issues. I typically have to empty my bag every hour, but I must drink liquid all day otherwise hospital here I come from dehydration. I'm sure you'll obtain many solutions on here, as this is where I turn to.

But open your dialogue with your surgeon or an Ostomy nurse. I'm sure I didn't help much, being a newbie, but don't get depressed or discouraged... you're alive.

Hi, I need help. I use food to slow me down more than drugs, but I do take one Imodium in the morning. I eat toast with peanut butter for starters, then for a snack later, half a banana or some applesauce. After lunch, I might have some canned fruit, pears or peaches. In the evening, after supper, I'll eat the other half of the banana. I think what works for me is to keep my system full so as not to have much gas or the fluids I drink during the day from just flushing through into the pouch. Hope this helps.

Hi, I need help!

I hear ya sister.........I'm in the same boat....sort of. I assume you're either short-gutted or have severe disease activity. If you're a shortie, you'll find the motility meds just don't do much. They can't. It's not a question of motility, but gut length. As I've said previously, it's like a velvet-lined garden hose. If it's 20 feet long and you dump a quart of water into it.....not much will come out the other end. But if it's 3 feet long, a whole bunch of water is going to come out the end. I don't know how often you eat, but assuming it's not constantly, you should find that when your stomach is empty, your bowels will be empty shortly thereafter. During that time, your bowels are secreting bile (it's a pretty constant process). Your bowels will hold that bile for a bit, and then dump it out when it's built up to a point. It's a cycle. Knowing the timing of the cycle will allow you to do things like shower, change your barrier, drive without having to stop to empty your bag, etc. For me, my cycle is about an hour on an empty stomach. When I get up in the morning (after stopping eating by 1:30 am and drinking my quart of ORS from 2:30 am to 3:30 am), I'll have some bile in my bag. It usually happens around 8:00 am if I eat and drink as previously described. I usually get up at 7:45 am, prep for my barrier change, and wait until it gets done dumping the bile into my bag. That dumping bile process from start to finish is about 10 minutes, but I give it 15 just to be sure. Then I know I still have 45 minutes until it dumps out bile again. So I pull off my barrier, jump in the shower, dry off, and change my barrier. Right around 9:05ish, she'll dump again, so I need to be done with my barrier change....or be standing over the sink with a good book and let her do her thing again for another 10 minutes while I read (how's that for a good visual). Then I have another hour without output. My point is you need to know your cycle, as everyone's is different. Once you know yours, life gets easier.

In terms of motility meds, I've tried them all and they're not much help. As I described above....they really can't be. The Tincture of Opium did absolutely nothing other than get some weird looks from the folks behind the pharmacy counter at my CVS. You'd think I was asking for crack cocaine or something. Of them all, what works best for me is Diphenoxylate-Atropine (Lomotil), but be warned that it can numb your stoma and if you take it for any length of time and then stop taking it, your stoma may feel discomfort from the acidic nature of your output. Been there, done that......not fun. Diphenoxylate is similar to opioid pain relievers, so be warned. After my short-gut surgery, I was taking 16 Diphen-Ox tablets a day (4 tabs 4 times) AND 16 Loperamide tabs (4 tabs 4 times) a day. I've slowly weaned myself down to 4 Diphen tabs (2 tabs 2 times) and 8 Loperamide tabs (4 tabs 2 times) each day..........but routinely miss doses when I'm busy and really don't see much difference. My goal is to just stop using them altogether, but going cold turkey is NOT the way to do that. Don't ask how I know that.

So what I'm saying is don't rely on motility meds as your primary means of living your life. Get to know your body's bowel cycle and work with it. I know....easier said than done......but it pays large dividends in confidence once you know what's going to happen and when. I've looked high and low for motility-altering meds or food, and my conclusion is with such a short bowel, there is no easy answer. I wish there was. To be honest, I haven't fully explored the diet and what to eat and when aspect, as I'm sure there are gains to be made there........but my lifestyle and lack of self-discipline (i.e., willpower) sort of limits me there. If I take a sip of ice water.......I'm drinking the bottle.......it's just how I roll. If your issue is more related to diseased bowel, then all bets are off because there's so much going on there. Let me know if that answers the mail and if not, provide a little more info about your condition so others with similar circumstances can chime in.

Regards,

Bob

Hello

Is there a reason you remove your appliance to shower, you can just leave it on. Just pat it down to dry afterwards or hit it with a hair dryer.

You also say you eat first then shower in the morning, shower first then eat. You don't say when your operation was, but it sounds recent, don't punish yourself, you will find your way, you'll see.

Axl

I've had short gut for just over 4 years now, with just 1 meter of bowel left. I don't take any motility drugs as I found they don't make any difference. I try to control my output to a degree through my diet. If I only ate the foods that transit slower through the bowel, it would have knock-on effects on other areas of health. Challenging to find the right balance, but as a rule, adding white carbs to every meal will slow down output. I personally don't enjoy eating loads of unhealthy carbs, so I just fill my bag with fluid-absorbing sachets, which greatly cuts down the number of times I have to empty my bag and eat what I feel like eating (with restrictions to avoid bowel blockage).

Hi Axl,

Not sure who you're talking about.......but I don't eat until after I've changed my barrier, which I do after I shower. So for me it's get up.....wait for bile dump....then take motility meds....remove barrier and get in shower. Then I get out of the shower, change my barrier.....and then eat breakfast. This whole thing can take as little as an hour and as long as two hours.....just depends if I dump my bile when I get up or if I have to wait for it.

Regards 

Bob

Hi ya Bob

I was responding to "I need help"'s introduction blurb where she covers eating then showering.

Cheers

Axl

What a desperate situation you describe INH: you poor thing. I can't offer any ideas, but I just wanted to express my sympathy, and my hope that you find some viable strategies and answers to enable you to live normally again. Depression would be natural with such a situation, but you must be just completely exhausted as well.

Has a doctor told you to take that much loperamide? 26 a day? I'm not a doctor (my job involves burying their mistakes...), but I understood that loperamide taken over a long period actually weakens the muscles of the intestine and can build up other problems. Not judging you when this is what you need to do to get through your days, but it seems like a dodgy long-term strategy and I wonder if your doctor knows what he is doing (or what you are doing)?

All good wishes, and hoping that things are getting a bit better. Please keep us up to date on here. Chris

I saw this post on LinkedIn and sadly, high output is a common problem for anyone with a short bowel/gut, and it is not a one-size-fits-all answer. There are so many options to try this med or that med and hearing what works for others, but the best recommendation I can give you is to get as educated as you can on the actual root issue. There are numerous websites that can go into as much detail as you are wanting to learn. Look at treatment and meds for short bowel and short gut.

I would recommend going to

www.shortbowelsyndrome.com; there is a place to request a free book on "Patient's Guide to Short Bowel Syndrome"

www.ostomy.org; (previously uoaa.org) and has a great new nutritional guide to download

Crohn's and colitis website has some great info also-

Try to get as informed about the different meds that may help to talk to your doctor about at upcoming visits

The best article I have ever read on the topic is "A Clinician's Guide to Short Bowel Syndrome" written by Carol Rees Parrish RDH. It talks about meds, and she is the author of the above free book and seems to be one of the foremost experts on short bowel treatment. Just google it, and it will come up for you to read.

See if there is a dietician in your area that can be a valuable resource in this topic- www.healthprofs.com

Look into some of the new ORS (oral replacement solutions) on the market. Liquid IV/Nuun/Drip Drop/SOS/Hydrant/Vitalyte/Pedialyte and many more found on Amazon and even at Walmart/Target to get more of the needed electrolytes. Drinking more and more water is not always the answer and can actually cause more dumping- you need to find more hypotonic solutions to drink to get the balance back (the book and articles explain this)

On Amazon, you can search Banana flakes, and some have had good success with these

I know this is a lot of information and hopefully, it will help you find some relief and peace with your GI system.