Hey ileo baggers – poop question

Kerry S

They have had me taking anti diarrhea meds from when they installed this bag. My poop is like pudding and I have to push it out of the bag. The doc took me off the meds and I went straight to diarrhea again. Feel real weak. I put myself back to ¼ dose of the diarrhea meds and back to pudding crap this morning. What the hell is normal???

Kerry

pluckey

Hey Poopin Padre....
When I was on my bag, I was liquid 24/7.....what finally started thickening it up was a combo of Tincture of Opium and Lomotil...and yes it ended up getting really thick so bag cleaning was a challenge. I think you should definitely play with the immodium and see if you can get to a right consistency. there is no Normal...sucks, I know

Here was my Bag Cleaning Method:

Supplies:
Baby Wipes
Large Syringe (a really big one I got from Doctor's Office/ER
Canister - kind of like a tall tupperware cannister...again, mine was from the hospital
Disposable gloves- cheap ones from CVS or Walmart

I always wore gloves to clean my bag.
I'd run the warm water, fill up the cannister and fill teh syringe with warm water. I'd shoot the syringe up the bag a few times to clean the bag. Then I'd use the baby wipe to get the bottom of the bag clean before I rolled it back up/closed the bag up.

That was my system I got comfortable with to deal with that bag/clean up.
Good Luck Poopy Papa!!

((Peggy))

kant_spell

diet?
Hi Kerry

For me, the consistency has alot to do with diet. Lots of protein = very liquid. Artificial sweeteners = also very liquid. Carbohydrates such as toast, cereal, rice, or pasta = thicker. So I try to have some carbs with every meal, and it seems to help attain that perfect consistency. lol. Hope this helps.

Grant

John23

Man....

Re:
"The doc took me off the meds and I went straight to diarrhea
again. Feel real weak. I put myself back to ¼ dose of the
diarrhea meds and back to pudding crap this morning. What the
hell is normal???"

These doctors don't know crapola about crapola.

First of all, as an ileostomate, that output will always be like
thick gravy at the best, and like water at it's worst. It's normal,
since that's what your ileum has inside it prior to being dumped
into the cecum/colon.

Second, taking crapola medications to thicken what usually
isn't thick, is only going to confuse your already confused gut,
and be as counterproductive as can possibly be.

If you want to slow down your output, drink some "high pulp"
Orange juice, or if it's OK with the meds you're taking, one
half of a grapefruit will do the trick. One Orange with pulp
is good too, but I personally found a glass of high-pulp Orange
juice takes care of the problem.

Third.... As an ileostomate, you -will- experience bouts of what
is called "the dumping syndrome". It's an unpleasant phenomena
where you eat and 15 to 20 minutes later, you're emptying what
you just ingested from the pouch. For any scans that require "contrast",
I have to drink the tint not more than 15 minutes prior to the scan.
The radiologist says they can see it going into the pouch!

That "dumping syndrome can last for weeks, and can occur every
month. Some individuals take "Lomotil" to control the output, but
do so at your own peril. The more meds you add into the equation,
the more of a mess your system will be. There was one fellow on
the UOAA board that insists that taking it does wonders, but he
also claims to be a "professional patient"; I personally prefer not
to be a patient at all. "The less you try to fix; the less you break".

Fourth of all..... When they take out that section of colon and give
you an ileostomy, they also remove the "ileocecal" valve. It's a built-in
valve between the ileum and colon, and has two uses.... It prevents
waste and bacteria from traveling from the colon and back into the
ileum, and it's used by your body to help control output into the
colon from the ileum. Without that valve, our digested food travels
without restriction through the ileum and into the pouch. If the
body is trying to get more out of what you've ingested, it is no
longer able to, by closing that valve and holding the product up
in the ileum longer; the product just goes into the pouch......

Fifth:
This is also why as an ileostomate, you -will always- be on the
edge of dehydration. Your ileum can not absorb more than it
was ever intended to absorb, and you no longer have a colon to
absorb what the ileum can't. If you drink too much liquid/water
at one time, it will go through quickly and you will not get more water
into the system by doing that. Drinking small amounts of water
(4-6oz per hour) will better provide your body with the ability to
absorb more of what it needs.

You -do not- want to get dehydrated! It happens quickly, and
without the usual signs of dehydration. If you get too dehydrated,
it will be very difficult, if not impossible, to get re-hydrated without
a visit to the ER for a jug of IV liquid. BTDT too many times.

Between the normal liquid output, sweating, and not having a
continual supply of water being ingested, your body will not have
enough to stay hydrated. You -can not- wait until you're "thirsty"
to go get a drink.. Your body no longer knows "thirst" as a signal
for dehydration. Even a temporary dehydrated state can cause
your kidney to produce stones. I am plagued with kidney stones,
and trust me.... you do not want that to happen. It brought me
into the ER twice. All they give are pain pills. (I now take herbal
capsules to destroy kidney/bladder stones when they form, and
yes, they work perfect)

Sixth:
Any medicines you take must be the quick dissolving type. As an
ileostomate, "slow acting", "Delayed acting", or "time release"
medications will no longer be useful to you. Make certain
you are fully aware of this, and that your physicians and pharmacists
are also aware of this. It is extremely important to know this.

And Seventh:
As mentioned, diet can do wonders (sometimes).

Keep in mind as you eat: Low or zero carb foods equal
liquid; high carb foods equal bulk/thicker.

Eat meat, output liquid; eat pasta, output is thicker.


I don't know if I left anything out, but that's the scoop about
your membership in the ileostomy society.

Take care, ehh?

John

Lori-S

Kerry
While I have a colostomy and not an Ileo I do have some info which may help.

The consistency of your output is dependent on how much of your intestinal tract is being used. The less available for processing and absorption, the more liquid your output will be. It really helps to know exactly what your working with. Unfortunately, pudding may be what you get ... sorry.

With a conventional ileostomy the stool is liquid to semi liquid or paste and may contain particles of undigested food residue. The flow cannot be controlled and elimination occurs periodically.

With a continent ileostomy the stool is semi-liquid to a toothpaste consistency, containing undigested food particles.

With a j-pouch ileostomy the stool is usually a soft formed consistency.

You may find that you experience intolerances for food that you didn’t have previously. For example, lactose intolerance is common. If you notice gas, abdominal bloating, and increase in liquid output or diarrhea ten minutes to several hours after the ingestion of a dairy product, eliminate it for several days. You can try adding milk, one ounce at a time, to determine your tolerance point or change your diet to include non-lactose items such as soy milk etc.

Important Tips:
• Eat regularly-don’t skip meals. Empty bowels produce gas.
• When adding new foods to your diet, try a little bit with other foods.
• Small frequent meals are best. Try to divide your normal 3 meals into 6 and chew, chew.
Not choo choo. As soon as I typed that I heard a train in my head -
• Rice, potatoes or pasta once daily may solidify and reduce frequency or irritation.
• High potassium foods will help offset the effects of diarrhea. Try bananas, apple sauce,
• Limit foods containing simple sugars – they aggravate diarrhea.
• Drink six to eight glasses of fluid each day – but not with meals.

For what it's worth, you can almost throw it out the window if you are doing chemo as it all is complicated by Chemo. Hope you are feeling better soon. ... Lori

PS: I only have this info because I also had to have a small bowel resection along with my rectosigmoid colon resection as my tumor had grown out of the colon, into the abdominal cavity and then into my small bowel. (mean lil devil!) What you get really does depend on what they take.

Kerry S

Thanks guys
Thanks guys. This is just another prime example of how important this site is to me.
I will have the scary old woman read this as she is the one that feeds me.

I hope the soon to be bagged folks learn from this also. It is a big change, but no where near as bad as I thought it would be.

Love you all
Kerry

RickMurtagh

Experience
Kerry,
I had my ileo for nine months and like the others all I can do is relate to you the things I learned and experienced along the way.

First, proteins like chicken and meat gave me thicker output. Pasta was great too. Red sauces where unusually not cool. Asparagus still made my pee smell like asparagus, except then I liked it, as it made me feel normal.

What John said is true, the output from the small intestine is normally liquid. Over time, if you have no colon it can begin to do some absorption, not it's normal thing, but very limited.

The best output I ever had was after a Newcastle Brown Ale and Mile High Nachos with Chili from Champps. I know, go figure. I used to joke that if I out a pastry tip on my bag I could have made roses.

Fiber can help clump things together and slow things down a bit, providing more solid output and the illusion of control. What I found was pudding crap was easier to clean up than totally liquid crap.

Take care not to eat seeds, skins or things like peanuts or raisins as they can cause blockages that can put you back in the big house.

Drink lots of fluids since you can't easily tell when you have diarrhea you will always be fighting dehydration. As John said, little bits at a time. I never had clumping/dumping as John mentioned, but from what I had seen from friends with that problem, you are especially susceptible to dehydration then.

Best wishes my friend. I hope you find yourself pooping out your butt in no time and at the very least that you do not get discouraged from "blowouts!"

khl8

Kerry S said:

Thanks guys
Thanks guys. This is just another prime example of how important this site is to me.
I will have the scary old woman read this as she is the one that feeds me.

I hope the soon to be bagged folks learn from this also. It is a big change, but no where near as bad as I thought it would be.

Love you all
Kerry

Pudding is supposed to be
Pudding is supposed to be good, I had to take immodiem every day to keep it this way. As for cleanup, I carried a small plastic sippy containter in my purse and bag, and when I emptied the bag I would fill the containter with warm water and pour into the end of the bag and swhish it around, then empty it. I felt cleaner doing this every time. Then again, I was getting about 5 days out of each wafer and bag. I also got some deoderizer from the surgical supply store, a few drops in the bag and Viola! the odor was diminished alot!
I could smell the bag constantly, my husband insisted he didn't, but the smell must have imbeded itself in my nose, I think this was the worst part, thinking I stunk to everyone around me. I got so nuts about it, I would carry a small travel size bottle of Febreeze and aould spray my clothes a few times a day.

Kathy

Crow71

Poopy sparks!!!
"What the hell is normal?" Great question. In general, I have no idea what normal is anymore. Specifically for ileo poop, apple sauce to thick liquid. I ranges all day long for me (and all night). True watery diarrhea is not good. I've never had this, but I don't think I'll escape folfiri without having to deal with it. The posts on this thread have been great. I learned a lot myself. Only 2 things to add.

Pay close attention to what foods you eat together.
Pay attention to how you system changes after surgery.

After my surgery in April I couldn't eat any vegetables at all for a few months. Chicken, steak, hamburgers, pork - I could eat any meats, and crackers. Even after my system got straightened out I couldn't eat raw vegetables. I would just take the salad bowl and dump it in the toilet to save myself the trouble. I love raw vegetables so I keep trying. The other day I had a huge chef's salad for lunch. There was lots of cheese on the salad, and I ate several pieces of bread with it. Everything came out normal.I think the veggie, cheese, bread combo was just right. Or maybe my system is still changing from surgery.

I "discovered" a little trick a while back you may find helpful. I used to get frustrated a lot when emptying the bag. The ileo splashes a lot more than the colostomy did. It was always splashing poopy toilet water on my junk. Now, I start out by putting several pieces of toilet paper in the bowl and then emptying the bag right on the paper. It cuts down on the splashing.

I'm glad the bag isn't getting you down.