Need Resources: How to Manage All Variables with the J-Pouch

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Duke
Posts: 1
Joined: 2013-10-07 21:43:59

Need Resources: How to Manage All Variables with the J-Pouch

Post by Duke »

The surgery to close my ileostomy and use previously the created internal J-Pouch was on 9/16/2013. I am having issues! My surgeon does not offer any help on how to balance diet, constipation, diarrhea, severe gas pain, and the medication (such as Milk of Magnesia, Imodium AD, Maalox etc. or prescription Rx’s) that can help counter these symptoms not to mention the frequent (20 times/day) bowel movements, urgency, leakage and lack of sleep.

Can anyone recommend books, or other resources that would explain how to implement some type of systematic approach to get things in balance? Everyone says that “you will have to experiment” but I don’t know how to balance this mess with so many variables.

Thank you,
Duke
bmnavarro
Posts: 10
Joined: 2013-10-30 16:34:36

Re: Need Resources: How to Manage All Variables with the J-P

Post by bmnavarro »

Hi Duke,
Sorry to hear about all your troubles. I too had an ileostomy for 3 years with a J-pouch before I had my reattachment. I received my ostomy my senior year of high school, and just had the takedown procedure a little over a year ago. It was hard adjusting but I have developed a passion for ostomy care haha kinda weird, but it works perfectly since I have been in Nursing School.

I would suggest, joining a support group. This can be really beneficial because you can get great tips from other people, and they can tell you personally how they managed things. Also get in touch with an Ostomy nurse, and Dietitian, they could also help.

Right off the bat one of the most important things I want to tell you based on how many times you go a day is that it is important to DRINK WATER! You need to drink about 64 ounces a day. You need to drink so much because the large intestine absorbed majority of the water and electrolytes that sustain the body, and now you do not have that. I know this is hard to keep up with, But if you get some crystal light drink packets, lemonade or what ever is you favorite flavor. This makes drinking so much water a lot easier, because water can get boring. You are loosing so much fluid from the diarrhea that it is extremely easy to get dehydrated. Also I know a lot of people say that you should drink Gatorade for the electrolytes but, DO NOT DRINK REGULAR GATORADE because it contains to much sugar and that will cause your stool to be more watery. INSTEAD DRINK G2 it has less sugar and will still give you the electrolytes.

It is always going to be a challenge controlling how severe the diarrhea is, but there are some things that you can do. One thing that I would definitely start up on is taking FIBER! Normally fiber would cause diarrhea, but for us it has the opposite effect, the fiber will help absorb some of the liquid proving more thickness. You can find fiber in eating Metamucil crackers that you can get at Wallmart. They come in a package of 2 and you should eat 3 packages a day especially before you go to bed. I know it takes some getting used to. Also there is Benefiber powder that you can put into your drinks, you can usually find this at Costco. Also you should see about getting a prescription for Lomotil, this medication help treat diarrhea.

One of most important things that you need to start doing is creating your own personal Food Diary. Because foods affect every person differently. And its true what everyone says that yo have to experiment. It seems like an impossible thing to do right now, so just start small, one food at a time, it takes time. You should right down( Word document, or paper) what you eat, how long it takes that food to go through you, if it causes gas, how it affects the consistency of the poop ( does it make it thicker, more watery, formed), any color changes that it brings, and If the food was digested at all. This is where it can get a little grows because it involves looking at your poop every time. But this is one of the most important tools, because then one you can determine how these foods affect you, you will know what to stay away from, and what will help you.

You can experiment with the times that you eat. because Output tends to be high in the afternoon and increases in the evening. So that can interrupt sleep. Also try and make your last meal at least 4 hours before you go to bed, and also take a Lomotil and Metamucil cracker before going to bed. This should help with your sleep.

To help with the leakage you can do kegel exercise (pelvic muscle exercises)- this helps strengthen your anal sphincter muscles, that allow you with control.Pelvic muscle exercise involves: - Tightening your anal muscle or sphincter as though you are attempting to prevent a bowel movement.You should get the same sensation as you do when you stop your urine stream when voiding. Don’t just squeeze the buttock muscles.
• Hold to the count of ten while squeezing tightly, then
• Relax for a count of ten.... Repeat each step ten (10) times to make one set of exercises. You should complete
four sets a day. They may be performed any time during the day and while you are in any position. For example, you may do them while watching television, riding in a car, sitting at your desk, or while talking on the telephone.

Here are a few sits that might help you.
http://www.mc.vanderbilt.edu/documents/ ... keDown.pdf

This article talks about the After Ileostomy Take-Down and Home care instructions for IPAA (ileal pouch anal anastomosis) patients

Here is a list of some foods that you can use as a starting guide. These foods may affect you differently but for the majority of people these foods fall under these categories.
Bulk Forming foods- Chew carefully
-beans dried, string or sprouts
-carrots, raw
-celery
-cereals, whole grain
-Chinese foods
-Coconut
-cole slaw
-corn
-dried fuits (apples, figs, raisins)
-fresh fruits
-meats in casings
mushrooms
-nuts
-popcorn
-skins with seeds

Gas Forming Foods
- beans, string and dried
-beer (All Alcohol)
-broccoli
-cabbage family
-carbonated beverages
-corn
-cucumbers
-dairy products
-melons
-nuts
-onions
-radishes
-rhubarb
-spicy foods
-yeast

Gas Forming Actions - (EATING SMALLER MEALS 4-5 TIMES A DAY WILL REDUCE GAS)
-Air swallowing
-Drinking through a straw
-Eating fast
-Eating ice
-Gulping liquids
-Gum chewing
-Skipping meals
-Smoking

Foods with Laxative Effect
-beer
-bulk forming foods
-chocolate
-coffee
-concentrated sugars
-fried foods
-juices (prune esp)
-licorice
-spicy foods
-raw foods

Stool Thickening foods
-applesause
-bananas
-black tea
-boiled milk
-cheese
-peanut butter
-starchy foods (crackers, pretzels, rices,)

Odor Combating Foods
-buttermilk
-cranberry juice
-orange juice
-parsley
-spinach, fresh
-tomato juice
-yogurt

Odor Causing Foods
-asparagus
-broccoli
-cabbage family
-cheeses
-eggs
-fish
-onions
-spices
-turnips



I hope this helps you! You are only about a month and a half out of surgery, so this is all still new. Give it time, you have a lifetime to perfect everything, its hard at first but things get better. And the more research you do and things you learn it will get easier.

Briana
UC 2008
TPC ileostomy J-pouch 3/2010
removal of anal sphincters 12/2010
takedown 5/2012
User avatar
Lynne
Posts: 508
Joined: 2005-10-01 06:04:13

Re: Need Resources: How to Manage All Variables with the J-P

Post by Lynne »

Duke,

I highly recommend you visit the www.j-pouch.org website. There are many more people with j-pouches there than there are here. I also can put you in touch with someone who will talk to you via phone or email. Let me know if this is something you would want.

Lynne
Lynne, CDN Chair
Mickeya
Posts: 2
Joined: 2021-12-20 17:29:17

Re: Need Resources: How to Manage All Variables with the J-Pouch

Post by Mickeya »

Hi. I’m new here and this may not be the correct place for my post. I am a 70 yo woman with an ileostomy since 2017. They left enough rectum to reattach and I’m scheduled for this surgery but I am very apprehensive. I don’t love my stoma but I have learned to manage and lead a very active life. I’m afraid that I will have to deal with pain, urgency and incontinence for quite a while, and I don’t have that many years left! I’d appreciate input from fellow ostomates, present and former! Thank you!
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