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Posted 7/11/2009 9:20 PM (GMT 0)

Hi to all,

I posted a message on this topic once before and got very kind and helpful responses from flchurchlady, peggy113 and summerstorm.

As I said before I have a temporary ileostomy with plans to reverse to a "J" pouch in a month or so. I'm off the antibiotics I was on at the last note and have had all the abdominal drains that were in me, removed.

My current problem is that I'm still having to emptying my ostomy bag 6-8 times a day (24hr.) Is that a lot of times during a day?  I here about people emptying just 4 times a day.

6 times a day is somewhat manageable, but still alot of food and water is passing right through me. And I'm trying to put 15-20 lb's back on. I'll empty a couple of times in a day and the material is thick and pasty and the very next dump will be all watery. Then it will switch back to pasty. Very frustrating. I'm trying to find a pattern so I can plan out a day and know what I can eat and do.

I've tried both imodium and lomotil, and really can't tell a difference in reduction of output. I'm trying chewable imodium today. I think the tab's were passing right through without dissolving. Anybody have and more ideas on how to make your body retain water?

I have found that sweets and artifical sweetners exaserbate the problem. (marshmellows are mostly sugar, so they don't seem to work for me as a thickener)

 

I've been told about a food suppliment called Enlive. Has anybody tried or used that stuff?

Also, the in hospital enterostomal therapy department, where I had surgery, have recommended an amino acid suppliment called "Glitimine" to restock my intestines from the antibiotic blast. Has anybody used that stuff? I eat plain yogurt and am testing acidophilus, to get good bacterial.

I very much appreciate any input. All of you out there are a blessing. I hope nobody is having as much trouble as I am.  All my doctors and advisors keep telling me to "hang in there" "this will all get better " but after all the stuff I've been through and the assurances that I got in the beginning, it all seems empty. I read most all the posts and am glad that things have worked out for some people.  As  one of my doctors said, there is not enough of the people who have had things work out ok, sticking around to encourage those who are struggleing.

If this works out for me, I plan to be available...

Thanks to all...

Posted 7/11/2009 10:20 PM (GMT 0)
Cliff--6-8 times could be your 'normal'...I know personally, I have days that I empty 4 times and I have days I empty 10 times! My output depends on my intake and if I want something I eat it, but I know the transit time for the foods I 'splurge" on, so I know that I'll have to empty more...

Some foods I eat when I want to thicken up my output are mashed potatoes/hummus/bananas/apples without the skin...everyone is different so these may not work for you, but you could try them smurf

I've used immodium but you really have to take it at the optimum time before you eat to have the best results...I found that taking a daily fiber supplement works best...for me... and I don't have to take it 30 minutes before I eat! If you go the fiber supplement route, don't rush it...I started with one capsule and increased it until I got the results I wanted. You have to drink plenty of fluids when you take them and I always take with food once a day. Some people may use more, but for my system once a day is perfect.

I also use probiotics on occasion, when my gut doesn't feel right, but not everyday. Some people do use them daily.

Hang in there...you'll get the hang of it!
Posted 7/12/2009 1:21 AM (GMT 0)
6-8 is really not a whole lot of times. I dont know how full you are letting your pouch get before you empty it though. If its completly full each time thats a bit much.
As for it being pasty and then watery mine does that all the time. Different foods change it, but sometimes it doesnt seem to matter about the food, lol.
And different foods have different effects on different people. But potatos, and other starches usually thicken itup pretty good.
As for the immodium, like Ohio said, you need to take it before hand to make it slow down. You can also take a few gasx in the morning when you first wake up and then two more midway through the day to keep gas at bay.

I dont know the answers to your other questions though. Im sorry!
Posted 7/12/2009 2:18 AM (GMT 0)
Hello Cliff,

Sorry you are still having output problems.. it can be really frustrating.  Ask flchurchlady -- she just went thru having 2 ileostomies for a couple of months and one of hers was a really high output.  I'm sure that she will come along and maybe give you some really good suggestions.

A couple of things.. 

  Imodium - I take 3 before my breakfast at least 15-20 minutes before I eat.  My first meal of the day is my worst as far as travel time.  It goes thru me pretty quickly. 

  I recently stopped drinking my decaf coffee with cream (1/2 milk, 1/2 cappucino... more like a latte, I guess), and found that my travel time has slowed more in the morning.   {I miss my coffee!}  I did this because I was dropping some weight again that I really didn't need to lose, and I believe it has helped me some.  I still miss my coffee.  Been drinking herbel teas - more healthy, I know.

  Also, if you know that you are eating something that has a quick travel time, if you cut back on your intake of fluids just prior and during your meal, it helps. 

  And limit high fat foods.  That doesn't just mean fried foods, but foods with a high fat content, lots of oil or butter in them.  Pie crust is a perfect example, muffins too.  And some cakes.  If you eat fruit in them, the fruit counteracts the amount of fat since fruit slows my output! 

  A few bites of banana or eating applesauce with your meal also helps.  Sweet potatoes or yams work for me, as does butternut squash, spaghetti squash.  Like a potato but a little more consistency.

  You are exactly right about the sugar and artificial sweeteners causing problems.  I think some of us get sugar "dumping" with that.  It doesn't stop me from eating sweets, or drinking sweet tea once in a while, but I just know what to expect.

  Sometimes eating fruity desserts, like peach cobbler, apple pie, pumpkin or squash pie or muffins, will help your consistency and satisfy the sweet tooth all in one.  Muffins for breakfast is one of my favs. 

Now, these 'hints' may not work for everyone.  We are all soooo different, some may work and some may not work at all.   After 25 years, I am still experimenting --- and surprise myself.  But I like different ethnic foods and am always trying something new. 

Let me know if any of these sound like something that you might try or that doesn't work for you.

Best of luck,   

Posted 7/12/2009 10:57 PM (GMT 0)

Thanks for your ideas,

The pattern that is emerging is that in my mornings don't have much output. And then in the afternoon and evening I'll have to empty my bag roughly every 2 hours. And that's mostly water.  I am really thirsty from over night. So I'll often put away 1000cc's of water and juice or smar***er by noon. I empty the bag when I get around 150 to 200 cc in it. By then it's getting heavy. The chewable Imodium doesn't seem to make much differance. I mean does it completely stop you up? When I had a colon it used to stop my output. I cannot figure out what, if anything, I am eating that triggers this afternoon water shedding. I've been hunting for some relationship between the heat of the day and water shedding. It's getting hot very day here in the afternoon, and instead of retaining water because of the heat, I'm dumping it. My surgeon, early on, wanted me to try and limit my output to 1250cc a day, max. I push that limit every day and sometimes go over. I am really concerned about getting dehydrated. The surgeon said not to worry about it if I go over, that I can make up the next day. Well I've had several days right up to if not over the line. I do not want to go back to the hospital. My wife says I'm obsessing about this food and water intake vs. output and that I should calm down and just empty the bag when I need to and get on with my life. I've had someone say that I should not let the ileostomy change my life, but just be a new part of it. Easily said for someone who doesn't have one. Thanks for the tips. I'll send you a note about how things work out. I wish I could email you directly. Thanks for your help.... 

YF

Cliff

Posted 7/13/2009 3:28 AM (GMT 0)
I will check back with you this week to see how you are doing... Best of luck to you.
Posted 7/13/2009 5:06 AM (GMT 0)
immodium usually stops my output completly but then when it wears off i have more output. BUT i take mine only to stop the output when i am going somewhere adn dont want to have to empty much
Posted 7/14/2009 12:03 AM (GMT 0)
when did you have your ileostomy? I had mine 3 weeks ago. I had the same problem as you just last week but I am doing much better.
What worked for me was stopping the antibotics plus taking Imodium with every meal helped after 3 days.
Break open the imodium capsules and swallow the powder to better absorb the contents. The over the counter stuff might not work well.
Imodium will certainly help to thicken up your output. I think your wife is right, don't let the scary internet posts make you believe that you will need to return to hospital.
I was dumping a whopping 1600cc of pure green liquid output a day freaking out and thought something was seriously wrong.
I had the same fears you are experiencing. Just relax and hang in there, you gotta believe things will slow down and get better. The doctors don't help much in settling your worries because they are so scared that you will dehydrate. I have never got to the point of dehydration. For dehydration the symptoms are mostly the same for everyone and even if you have 2 out of the 4 symptoms (look them up) it does not mean you are dehydrated to the point of needing to go to hospital.
The best drink for dehydration is like Gatorade or Propel and you need to drink a liter or more.

A short list of things I did to reduce output:
1. No antibiotics.
2. Take Imodium-liquid kind is the best but u need a prescription.
3. Drink at least one boost supplement shake a day (chocolate with protein seemed to thicken output).
4. Oatmeal to start the day (this makes my output thicker).

The culprit for my high output was the antibiotics... stop taking them (ask your doc first) since these medicines cause diarrhea- watery output.
Give your body some time to get rid of the medicine and absorb the imodium (it took me a week).
feel free to email me at [email protected] and I can better assist you ostomate! turn
Posted 7/14/2009 6:01 AM (GMT 0)
I'm still trying to figure it out myself. I empty about 5-7 times a day. I'm lucky (I guess) because I got laid off and still haven't gotten a job, so it doesn't really bother me going to empty. Also, it is less than the 20 times I was going with UC.

Creamy peanut butter thickens mine up. Also bananas. I love Peanut butter and banana sandwiches. My doc told me every time I have a liquid out put empty, I have replace that water... not easy to do.

I too am worried about my weight. I have been about 15 pounds under weight for the last month or so and that is after gaining 5 pounds! I just hope it gets better after my reversal. I mean, I'm not complaining about my skinny frame- I just don't want to look too freakish!
Posted 7/14/2009 5:02 PM (GMT 0)
Mike ,Liza, Summer, Peggy, Ohio, Thanks for the input. I had my Ileo 12 weeks ago, 10 if deduct the 2 weeks back in for surgery+ infection. Been off antibiotics for 2 weeks now. I'm taking 2 Imodium (chewable) 1 hour before my main meals (per directions on the box) + citricel 10 min. before the meal. As soon as i start to chew food the parastalsis kicks in and I start moving output. Seems like the Imodium isn't working if it's suppose to stop output completely.I was on Lomotil for a long time. It didn't seem to make a diff. either. All my out put has thickend up, for the most part. It's just because of the drugs and citricel. I'm trying to eat a lot of salty stuff and take psyllium capsules with water intake. I still get 1 or 2 watery bags a day. Mike I'm really gald things are working for you in such a short time. What a blessing! The protein drinks seemed to go right thru when I tried them. We think it's the sugars in them. I'll mail you mike. Liza, I don't know what to say to you other than I'll keep you in my prayers. You can mail me if you want. My address is in my profile. Does anybody know if the Tuesday night chat room is still up?
Thanks to all,
Cliff
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