Hello All:

On Feb 8 my surgeon is going to eliminate my ileostomy and allow my J-Pouch to begin doing its job.  I have to admit I am a bit concerned about the future. 

I am 72 years old, currently going to the gym most days and playing golf when it is not freezing outside. 

First I had my colon removed with an ileostomy, then a second operation for the creation of the J-Pouch and now the takedown in about a week.This week and next I am scheduled for a Fluoroscopy Barium Enema and a colonoscopy to make sure everything has healed properly. 

I have read some horror stories about the first few months with a J-Pouch with leakage, especially at night.  This concerns me because my waste has been watery sometimes and thicker some days.  I have not been able to figure out what I have been eating that makes it watery. 

At any rate any suggestions would be appreciated.

Nick

Original Post

Hi Nick,

I had my takedown at 62, about 2 1/2 years ago and find that my output varies.  One thing that is very important in the beginning is to follow the low residue diet. I did have some night time leakage for a while, but rarely ever have any now.  If I do, it’s minimal.  Just in case, it’s good to have pads for the bed.  I had some of the washable ones from the hospital from my Dad.  You could also use the disposable ones that can be bought at your local pharmacy.  I just remember the first night I got home, I had terrible leakage and was pretty discouraged at the time.  But over time things got better.

 In the beginning, I did not use any thickening agents, or anything to slow things down, but after a little while, my surgeon recommended Lomotil, Immodium, Pepto, and Benefiber.  At this point, I take Benefiber in the morning, 2 Lomotil when needed during the day and 2 before bed.  My output does vary depending on what I eat and to be honest I haven’t really figured things out completely in that area.  You’ll be able to see what works best for you through trial and error.

Not sure if I answered your questions.  Just be prepared before your surgery as much as you can.  I’m assuming you have butt cream already.  I brought mine to the hospital with me and started using it right away.  And, for me, the butt burn was the worse of it all.  That also got better after time and now I rarely if ever get any.  Calmoseptine worked for me but there are others you can try.

Anyway, good luck with your surgery!  

 

Hi, Nick. 

If you are prepared with supplies, and know what to expect, you will be okay. You will probably experience frequency and resulting butt burn, but it will get better. As soon as I got my frequency under control, it was so much better. I wanted to try managing my consistency and frequency through food. I ate a lot of pasta, but no tomato sauce during recovery -- too acidic. Sweet potato, white potato, peeled roasted zucchini, cooked spinach, white rice, chicken, lots of fish, one egg every morning for protein and B12.  Bananas, or ripe avocado on white toast. Your body will need protein so that the tissues and wounds inside can heal. Peanut butter on white toast will thicken output. Sweet potatoes are easy when you're hungry, just poke holes all over the potato and microwave for 5 to 10 minutes.

Try to limit or avoid insoluable fiber foods because they don't break down and can cause constipation or pain on exit, or a rush of diarrhea as it works through. If you strain and push, this can cause fissures and leakage. Soluable foods will be better for you in the first few months. Chew everything very, very thoroughly so that your new  j pouch receives food that is already pulverized. Drink lots of water, soups. Know that food will move through you quickly and that is normal for j pouchers. Some members are four times, some are eight times in a 24 hr period.

If there Is leakage, or you develop fissures or have pain, get a sitz basin, or a bath, filled with the warmest water you can tolerate. Hot water will encourage blood circulation to the bum area and heal your fissures. When away from the house I carried wet wipes in a zip lock baggie or a baby wipes' snap container. For butt burn I used gentle Zincofax. Eight months after takedown I no longer needed creams or Cipro, and I could eat almost anything I wanted, but I still avoid nuts, seeds, all raw vegetables.

If you have nighttime leakage, check with your surgeon if it is pouchitis. You could ask your doctor for a prescription of Cipro so you always have enough on hand, take as soon as you suspect pouchitis. It works fast, on the second or third dose but you need to complete the 10 - 14 day course. Don't shorten the course; it can come back stronger.

If you are worried about accidents at night, eat dinner early and avoid big meals. If still hungry later, have toas, or an egg. Prepare supplies in advance: buy some washable bed liners (Walmart? Amazon? Home delivery?) and also old towels to sleep on to protect your sheets and mattress. I used old white towels, easy to put in the wash with bleach. If concerned about leakage during the day, use underwear liners or disposable underwear. Who's going to know?  No one. It's okay. You're healing, and doing your best. Being prepared will let your mind rest. Sleep, food, and peace of mind will be important to your healing. Stock your fridge, freezer, and cupboards with suitable food and drink. Make big portions and freeze into meal sizes. Try not to worry because that will activate your stress hormones. Take one day at a time. Best of luck for February 8. 

Best advice after takedown (in my opinion) is to not let the butt burn get out of control. Some skin barriers work for some people and not as well for others. I tried Cleveland Clinic's special paste (just OK, not great), Calmoseptine (better than CC's paste, but also not great), Desitin, Budreau's Butt Paste and others. The only paste that worked for me is iLex and I still use it 15 months post takedown. My insurance also covers the cost -- ordered through same medical company as my ileostomy supplies.  Just FYI, I'm now approaching 64. Best of luck to you. Stay focused on one day at a time, then one week at a time, and then one month at a time.

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