New to the Ileostomy world: Any tips?

I'm replying because of the importance of the paste and also because I struggled to find answers when I first came home from the hospital. If you apply the paste right it will fill in any gaps around the Stoma. Be sure to cut the hole in the pouch as round as possible or the shape of the Stoma. The best Stoma scissors are Coloplast with rounded blades. Also be sure the Barrier Ring is perfectly lined up with the hole in the pouch. My Stoma size is about 1- 1/16" which is an odd size. I use a 1" X 4" piece of stainless steel pipe and placed 1 1/2" clear packing tape wrapping it around the pipe until it reached 1 1/16" in diameter. I place my barrier ring on the pipe, slide it up the pipe about 1" then stick the pipe in the pouch hole. Then slide the ring down onto the bag which will line it up perfectly with the hole every time. I then apply the paste around the edges of the barrier ring. I haven't had a leak since and my redness cleared up. If you can't come up with a stainless steel pipe let me know what size you need and I will make you one. I don't know the rules about sending addresses but maybe Collen will see this message and respond.

I’ve had good luck using a skin protectant wipe. I change stoma every 4 days. Have found it helps a lot to take it off in the shower. The warm water helps with loosening the paste. It usually comes off clean. The less you have to rub stoma area, the less irritation you will have.

Thank you for your instructions. I am having my bladder removed next Wednesday and more than likely will have a stoma instead of the neobladder.

Good Luck...Hope it goes well.

@hmmm Praying that the surgery went well and you’ll be on the mend very soon. God bless, Rose xx

I use convetec two piece natura system, works great no leaks, have had very few rashes but stoma powder helps. I have found on Amazon flushable and biodegradable doggie bags, I always carry 4 in my pocket, empty my pouch in the bag deposit in toilet and I'm on my way. Alway in my car is a backpack with two complete applince changes, travel wipes, gause, tape, towel, gloves, toilet paper, extra roll of doggie bags, small water bottles and shorts ( pants) and T-Shirt just in case. I play golf so I take a similar back pack in my cart. Hope thqt helps. Terry

I had my colon removed + j-pouch in 1987, and a permanent ileostomy in 2003

1. It was easy to monitor his food in the hospital - how can I support him and his cravings at home?

Since he needs to gain weight, I would say get foods he finds appealing. If you need to track foods, a pen and paper work, but there are lots of apps out there that are pretty easy to use. I use(d) "Lose It" when I was trying to make sure I was eating enough calories when my CD was flaring.

2. He has a high output (started at 6-8 liters a day) we are now down to 2.5/3 liters a day - any diet suggestions?

I'm not sure what the "anti-dumping" diet is, but I have had success with foods with soluble fiber (banana, applesauce, peanut butter on bagels, etc.). Again, keeping track of foods that lead to more dumping is a suggestion (we are all different)

3. He is having some irritation around the wafer and stoma area. The Stoma powder is helping but any additional tips?

I'd schedule a visit with an Ostomy Nurse to check and get suggestions. It took me a while to find what was working for me, and along the way I had a very persistent yeast infection.

4. Any luck with a particular type of Ostomy belt?

I don't wear them. Some people like them, some people don't. I have the Nu-Hope belt, and I think that one is probably the most comfortable. An Ostomy nurse can measure him and order it.

5. When you go out in the world how or what supplies do you always make sure to carry with you? and how do you "carry" them around?

Once I was confident in my pouching system I stopped carrying supplies with me as I went out and about. But I did go through a period of time where I had a lot of leaks. Carrying supplies in a backpack, or fanny pack works well. I have a small zipped pouch that I put an appliance change into, but you can just as easily use a ziploc. I also keep a checklist of what I need for a change, so I don't forget anything (because that happened). Mostly, though, if I had a leak, I went home and changed it.

@hmmm Tanya, how did surgery go? How are you doing?

I would not write off fried foods altogether just because French Fries didn't work. Give it some time, I eat anything I want. If it causes me to empty my pouch more often so be it. I have always had a high output. Don't worry too much about slowing it down right now. Just go with the flow for a while and concentrate on his nutrition needs. Creamy Peanut Butter is a good source of protein.

Very good information
Just remember to chew very good so you don't get any blockage, and eat food that don't digest good in moderation and stay hydrated.
I have an ileostomy for 40 some years and very lucky no blockage.
Take care