New to Ileostomy and leaking!!

First: Let me say I COMPLETELY understand your frustration, disappointment and aggravation. I have my Temp Ileo sugery on May 1st. Alot of people on this forum can tell you the heart pour messages I wrote with all of my leaking issues..and there were MANY..

Second: I can also relate to your husbands feeling of "never leaving the house again"... I felt the same way! Once the leaking gets under control he will feel SO MUCH better, I promise! One thing I found that helped my spirits was(once I was aloud too) I am a bath girl, and they only way I feel like I start the day off right is with all this s*it off my body in a bath tub, I could sit for hours! You need to find something that your husband liked to do prior to surgery and slowly get him interested in it, something else to focus on. It really helped me alot...and it was just bathing.

My Story: As I said I had my surgery on May 1st. Everything went smoothly. I am a bigger girl so I have a retracted ileostomy(kinda like an Innie-belly button. It makes leaking a nightmare, especially when stool is basically water. No one could help me and to be honeslt my WOC nurse was useless also. I was in the same situation as you as far as supplies. I went through a months worth in a week. I changed my bag and wafer about ever 2 hours if I was lucky and one day it got changed every hour. I couldn't handle the stress of this and I would have horrible mental breakdowns because of everything. I would get so mad Id cry they start crying about everything. I really regretted having the surgery and with I had "me back". It wasn't until about 3 weeks ago where I finally had alot of my leaking stop and can now go 24-48 hours with the same wafer on. I still need to change it more then most but I can deal with it like this. bc I can change it when I want to instead of being forced to and that helps alot.

Here is my routine: After my bath(if it is in the am before breakfast) I dry off in my bed and just hang out I love just hanging out, kinda like a happy naked baby! Anyway they I do all of this standing up. I get everything set up and put a peice of gauze over my stoma. I use convex wafers by convtech. Next I take this stuff, its called coloplast, It comes it strips(Rectangle shapped) Its kinda like play-doh. I strech it a little bit so I cant make it go completely around the outside edge of where the stoma sits(there is about 1/2 in gap between the stoma hole and the coloplast. In that area I fill it with stoma adhesive. I let it sit on the counter for 1 min as I apply my ostomy powder to the broken skin I have under my stoma. Then I line everything up and push my wafer and bag on with firm pressure on the plastic that holds the bag on. I hold it for a good 3 mins. Then I lie back in bed with a heating pad for 5 mins. Because of the way everything is set up on my body I have a hard time getting the outside of the wafer to sit on my skin and seal itself down. But what i just recently found out. If I lie on my right side(where my stoma is) with a pillow supporting it and lean into the pillow and just hang out for 20 mins it helps bc it gets pressure from all around. Also..I do NOT use the adhesive paper on the sides. It caused to much irritation. I have actually been debating about cutting it off(sometimes it make me itchy) but also when I was changing it alot I had tons and tons of irritation. anyway I also wear on ostomy belt when I go outside of the house. It helps pull the wafer to the stomy...give me added support and I feel better.

I don't know if I do any of this "right" or not. but it gets me through a day or to this way and that make me happy. Last weekend was the real test when I went SWIMMING every day for 3 days in a row! I would change my bag and wafter in the morning and swim all day. It was fine and had no problems.

I promise you and your hubby will feel so much better when you can get the leaking fixed or just subside it a little. I know it doesn't feel like it now but it makes such a big difference. If you need anything feel free to ask. we are all hear for eachother. I know first hand how important this site it! it helped me so so much. I found your message at 2am when i had a leak and needed to change everything. I couldnt fall back to sleep so I ended up reading some posts...I wish you the best and will keep your husband in my prayers, your both stronger then i ever could be