Newbie - need advice please

[LVPRLJM]

Hi there. Two questions. I am now 15 days out from hernia and "closed" ileostomy (is closed the right word? It's not open).

1. What can I do to help slow down digestion in order to absorb my medication? [Finding pills in my pouch. Not capsules, pills]

2. Is it normal at this stage (2 weeks) to have output more than once a day of over 400cc. Starts out gelatinous (because I'm on metamucil twice a day and loperamide once a day), but turns to liquid? I'm finding that I'm having to just stand over the collection container with my pouch open for about 30 - 45 minutes at least twice daily.
My output yesterday was 2660cc.
Yes, I was drinking Gatorade zero all day (I'm also hypoglycemic, so I can't have sugar).
I apologize if I am repeating things that have already been discussed here, but I'm quite scared.

[Shamrock4806]

Hi and welcome to the boards.

Yes it's quote normal to be quite scared at first with an ileostomy. There is a LOT to learn!

A closed ileostomy means that the ileostomy — a surgically created opening (stoma) from the small intestine (ileum) to the abdominal wall — has been surgically closed or reversed so that stool no longer exits through the stoma. Instead, intestinal contents are redirected back through the large intestine (if still present) and out the rectum normally.

If someone still has an ileostomy bag and is seeing undigested pills in it, that means the ileostomy is not closed. The intestinal contents are still being diverted through the stoma rather than passing through the full intestinal tract to the rectum.

At two weeks post-ileostomy, it’s not unusual for output to still be frequent and high, especially if the small intestine is adapting after surgery. However, an output of 2,600 cc in 24 hours is considered excessive (“high-output ileostomy”) and poses a risk of dehydration, electrolyte loss, and malnutrition — even if you’re drinking plenty of fluids.

You should contact your surgeon or stoma nurse today to review your volume and adjust medications or diet. Especially an otosmy dietician. Most important.

If your feeling nasuea, headaches or really bad, consider an ER visit or a doctor's appointment sooner. It might be something else more serious.



But going on if it's just your diet, that can be controlled.


You mentioned you drank a lot of Gatorade, this can cause a lot of what we call "diarrhea" to occur and washed your pills right out of your body before they had time to digest. The stomach has the acid to do the job, if you have diarrhea it just gets washed out into the intestines (less acidic) and thus not dissolved. Also certain medication designed to dissolve later in the intestines or colon should NOT be taken obviously as they can cause a dangerous clog. As so will nuts, hard parts of meats and nearly all vegetables and fruits depending.

What you have, which many of us illeostomy type have at first, is what's called a high output ostomy. It will take time for your body to adjust to not having your colon in play, (it extracts water and causes waste to cake up) which eventually the small intestine will uptake more water and you'll balance out some, but it can take many months until it does.

The trick is not to eat, drink or consume anything that can trigger a diarrhea episode. Even too much acceptable food can do it. The laundry list of culprits that can cause clogs (dangerous!), pancaking (too thick of stool that it doesn't drop down and forces the wafer off), diarrhea (too much water loss caused dehydration) and gas (carbonated drinks etc) is long, I'll provide a valuable list for you.

Since your only working with a partial digest system you need to consume smaller (like 4 oz) nutritious, high protein (whey isolate protein powder shakes in lactose free milk or Greek yogurt are both excellent), medium carbs, like as a side only, and almost NO FAT type meals more frequently throughout the day. This will slow down your digestive system so your body has time to absorb what it needs.

The whey isolate protein powder shake will give you at least half your RDA of protein right there, but you need other things as well.

Since so many fruits and vegetables cause issues with an ileostomy (clogs, gas or pancaking) I don't recommend them at first unless they are purried, as a juice or like pea soup consistency then in small amounts. However plain mashed potatoes with no skins or chunks works, just not a lot as it's a carb and carbs cause fluid loss in quantity. Some say just chew well but that doesn't always work. You'll find out later what you can tolerate but for now it's best to keep you safe and stable.

Fats are bad because they can cause diarrhea, so I eat very small amounts of chicken or turkey with no skins, very little seasoning and certainly not brined like KFC or rotisserie chicken is as excessive salt or seasoning can cause diarrhea also.

What you need to learn how to do is create your own oral rehydration solution which is quite easy. What happens with large water loss if your washing out necessary electrolytes out of your body then drinking more plain water with absorbs more salt etc. Salt is the biggest one that can endanger your life (either too much or too little) so just a tiny pinch that you can barely taste it in water shaken up and sipped slowly will help. Provided your diarrhea wasn't caused by excessive salt. If it was then don't consume more salt obviously.

A ORS won't cure your diarrhea, it only keeps you from having severe issues with dehydration. The best way to stop diarrhea episode is to stop eating or drinking anything, (except very small sips of the ORS) until it has finally stopped. Then find out what the heck you consumed that might have caused it and scratch it off your diet. Too much magnesium (like a supplement) will cause diarrhea regardless, you just have to wait it out. Artificial ingredients will do it also. As well as caffeine (produces more stomach acid,) alcohol and many other things. Even too much fruit juice at one time will cause it.

It's a lengthy trial and error process as not everyone is exactly alike, we do have some similar culprits though.

I'm going to get the links that will help you so refresh the page and my updated post with the links here.


Okay this list was as copied from what my ostomy dietician provided, it's just this or that may cause this or that.

viewtopic.php?t=27735


However if you want to get to a stable diet right away, then you can try my ONLY list instead, it may save you a LOT of work and time. Then experiment after that to see what you can tolerate. Over time tolerances can change as you gain more experience.

viewtopic.php?t=27738

[Shamrock4806]

Oh and important thing is to ensure your taking multivitamin gummies are best, that cover your RDA especially B12 as usually the part of your intestines taken out are responsible for its uptake.

If you're feeling tingling or pain in your fingers or toes, that could be neuropathy and you need B12.

However watch you don't take too much magnesium as it will cause diarrhea episode that don't stop for several hours. About 30% of ones RDA at a tim in a gummie, then use other sources of magnesiumine in foods.

Keep an eye on both your protein intake and your vitamins but from safe separate sources (like whey isolate and Greek yogurt) and various gummies vitamins because if you take too much at once, it can cause diarrhea. Like a huge multivitamin multimineral can.

So I break up mine but ensure I cover my RDA daily.

[Sanco]

Nice recommendations!

Be careful with the multiviamin gummies.... They may have 2-4 grams of sugar.

Maybe is better same vitamins other way.

[LVPRLJM]

Oh My Gosh @Shamrock4806 I cannot begin to tell you how grateful I am for your response(s) to my post. I have been utterly terrified and Facebook Groups only offer somewhat so-so advice. I mean, everyone is kind, and their hearts are in the right place, but I felt like this was the place to go for the real nitty-gritty advice. I am not going to knock Facebook completely, they gave me the advice to get Bananatrol, and it has been helping. I wish I had it before the Ileostomy. I might not have needed the surgery (honestly, doubtful).
But they have me on Lomotil 4x a day, Metamucil double dose 4x per day, plus the Bananatrol twice per day.
I decided tomorrow is the day I cut out caffeine, and try that for 3 days and see if that works. I am not going to start today. I got up at 3am to do homework, and have been at it most of the day.
I swear, I checked this board every day since I posted and never saw a response. I don't know what I was doing wrong. Maybe not refreshing or something, but I had all but given up hope on someone responding to my cries.
The reason why I was asking about open v. closed is I thought open v. closed was somehow linked to temporary v. permanent. My apologies for being ignorant. I have an open ileostomy and I will just blame it on the pain meds.
Once again, thank you so much. I am very humbled by your knowledge and overjoyed by your kindness.
P.S. I am at an impasse. I am hypoglycemic. I cannot have natural sugar. Or only 5g (all sugars) at a time, and 20g carbs at a time. So I have to have artificial sweeteners. I don't even know what I am going to do.

[Shamrock4806]

Artificia.

[ot dave]

Hey LVPRLJM,

Welcome to the boards! Sorry to hear about your struggles. I have a colostomy, so my experiences are going to be different. That said, everyone's experiences with their ostomies are going to be unique to each individual.
From being on here for a few years now, I have noticed that what you are experiencing sounds pretty typical right after surgery. Our bodies and their ability to adapt never cease to amaze me though. I know it's a struggle right now, but give your body time to heal, and then allow it the opportunity to adjust to your new normal.
You've been given a lot of precise, down to the calorie suggestions, which are fine. But note those are one person's experiences. Many others have noted that it just took some time to get back to a more normal eating routine. Search the boards, and you'll find a ton of other experiences and suggestions. Find what works best for you. I know we live in a microwave society, and we want a fix right now, but in all reality, it can take upwards of 6-8 just for your body to recover physically, not to mention the emotional/mental components that go along with this new normal. And then, add in the fact that your body is figuring out how to get the nutrients it needs from what you are consuming.
My suggestion is experiment and see what works best for you, and learn how to eat an elephant...the best way is one bite at a time.
Hope that helps some.

David

[22Sunpuperwolf22]

Hi LVPRLJM,

It is very normal to have output several times per day, I have output approximately 7-13x per day and very large amounts of cc's. Though everybody is different. I have read in the Phoenix Magazine the average is around 4-7x per day. As for the medicine pills flowing into your wafer whole, I had the same situation happen to me for several months after having my ileostomy surgery in 2007, and I had to crush all medications before ingesting them so they would absorb. CVS, and other drug stores sell pill crushers for approximately 10.00 that last a good couple of months. For meds that you can't crush, different forms of those meds can be prescribed like liquid. At the time I figured my food wasn't absorbing either as I hadn't put on any weight after my surgery that I had lost for several months, though in time, several months later, my food absorbed well, I gained a few pounds, and then my pills absorbed when taking them whole without having to crushing them. I hope that helps. Good luck with your situations after surgery! David's suggestions are excellent too, to read the different discussion boards and learn from a lot of ostomy recipients.

[Suezq1]

Is there an “in person” support group near Albany NY? My husband is scheduled for colostomy the end of September and doctor has been helpful but support group would be wonderful

[Bob Webtech]

Suezq1, try our Support Group Finder at https://www.ostomy.org/support-group-finder/

[Shamrock4806]

I should say now I've sort of changed my position on whey isolate protein powder mixed with milk.

Although it does pack a lot of energy, too much protein at one time causes the body to draw more water into the intestines, a liquid protein even worse.

So now my regiment is solid proteins like lean chicken, fish, pork, steak etc. in smaller amounts mixed with more starches like rice, pasta and a little fiber. Loperamide of course. Which combined slow down the digestion process so the body has time to absorb things.

I now only drink a homemade oral rehydration solution of 4.5 tablespoons of sugar (you can't have unfortunately), 1/2 teaspoon of salt, 1/8th teaspoon of Lite Salt mixed in 64oz water with two shots of sweetened red cranberry juice. (Also you can't have unfortunately) I sip this through out the day/night as needed.

Illeostomy types loose water and salts (electrolytes) every time they dump on account the colon is being bypassed. So they need to be replaced. A slow drip ors has worked wonderfully well for me.

The sugar water combination creates the ideal solution to draw the salt into the body through the intestines but since you can't have sugar you need another solution and drinking sugar free (with artificial ingredients which causes the body to dump excessively) is a recipe for severe dehydration. Why one was seeing pills in their bag the dumping was so excessive the pills were not dissolving. That's the artificial ingredients doing that.

Sports drinks are NOT ideal medical oral rehydration solutions for those with an illeostomy. The only thing that can work is the original formula of Drip Drop, which unfortunately contains sugar. Finding a prepared ors that's both sugar and artificial ingredient free is like trying to find the Easter Bunny, doesn't seem to exist.

I wish I knew this long ago when this was first posted is why one SHOULD NOT totally rely upon advice given by others online but from doctors and nutritionists who specialize in this sort of thing.

We are each in our own respective learning curves unfortunately and really can only relate from our own experiences.