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Posted 1/6/2018 5:28 PM (GMT 0)
I am 9 days post-surgery and have a loop ileo. Several times, pre- and post-surgery, my surgeon told me I would "hate" him until after take-down. Yesterday I began to learn about that!
The opening on the stoma is lower than the surface of my belly.

I did my own bag change solo for the first time yesterday.
I'd helped the ostomy nurse in the hospital change it 3 days prior. Well, when I took the old bag off yesterday, sure enough, the stoma had shrunk, and skin was showing inside the coverage of the wafer. (So... very red.)

I changed it first thing, before breakfast, but still there was a little liquid output (maybe because I drink water when I get up in the night.) So I thought I'd dried it all off, but 1/2 hr after my change I realized it was leaking.

Did it all again, and again, leakage. (I must have stood in the chilly bathroom for 30 minutes, patting up drippage, hoping it would stop for a few seconds so I could get the wafer on. Ugh. Now I have crick in my back from standing so I could see the ostomy in the mirror!)

Third time (and of course I had eaten by then.....) I seemed to do it and it has held. I remembered tips from here and ate a marshmallow before I started, which indeed stopped the output; I used a hairdryer to really dry my skin before applying everything.

That was yesterday and I have a home-visiting ostomy nurse scheduled day after tomorrow. What I am nervous about in the meantime (and of course it's the weekend):
- is output leaking under the wafer and further compromising the skin there? I do feel a stinging sometimes.
- How to balance the injury to the skin from this as opposed to the injury to the skin from so many changes?
- Would it be smarter to put the sticky wafer onto the bag (rather than my skin) and then press that all on at once?

At this point I am using Coloplast convex sensura mio and I have various other samples on the way. I am also using the Coloplast barrier rings (the putty-like rings.) I also have stoma powder and barrier spray.
Posted 1/6/2018 11:32 PM (GMT 0)
I’m sorry you’re dealing with this. The learning part- learning what works best for you and your body. It’s really trial and error. I remember being there doing my third change in one day, and then the anxiety the rest of the day, wondering what it looked like under the water and wondering if it would leak and when! It’s hard.

You may want to change it a little bit more frequently- your nurse might be able to tell you how frquently. My doc said this to me bc a) I’d be able to put more powder on it which helps heal the skin and b) you’ll be able to recut the wafer (or barrier ring) so they fit better in case your stoma keeps shrinking which it probably will.

In terms of putting it all together before putting it on, it’s really whatever works best for you. Making sure the cut fits the stoma is going to be key. If your nurse thinks it looks too red, s/he will prob suggest you call your doc for an appt. They usually want u to be better safe than sorry.

Also, you’ll keep keeping output even if you aren’t eating- it’s just the digestive system. Just wanted to let you know that.
Hang in there- maybe other people might have more feedback.
Posted 1/7/2018 3:28 AM (GMT 0)
When I did my bag changes I found it was easier for me to lay in my bed. I would lay towels on the bed and some extra pillows to prop my head up so I could see better. I would always do it first thing in the morning after I showered, output was minimal at best at that time. I would get all my supplies ready on the bed so after I dried off from my shower I would go lay and put my bag on. I used the moldable wafers which I felt gave me the best seal around my stoma. I also had to use convex as my stoma was flush with my stomach. I did have at times have a raw red ring of skin around my stoma due to it being so flush. The stinging is usually raw skin. Learn to do the crusting technique with the stoma powder and barrier wipes/spray. You do alternating layers of each until it's crusting over the skin to help protect it, ask your nurse to show you. Part of my supplies I had a small handheld mirror which helped if needed when I was laying to put on my wafer. I got it down to a science and took about 5 minutes.
Posted 1/7/2018 4:05 AM (GMT 0)
I never got a break with my loop. I could wait for that "perfect" time, but it would never happen. I had the same issue you have. I would go to put the wafer on and it would start going. Never a dull moment with that loop. I definitely think it sounds like you need convex. Also, one piece was actually my friend with the loop. Since I didn't wear the wafer/bag long due to leaking under the wafer, I would change often and one piece was quicker. The moldable wafers can be good to try too since you don't have to cut, you just mold it with your fingers, and it sort of closes up. Convatec makes a one piece moldable with a deep convex I think. If you give them a call they will send you some. They have great nurses who will speak with you on the phone too if you want. I used paste strips too. Another tip is to pull up on the skin above to get the stoma to stand out a little further. Mine always had a little stinging with the loop. It would make me nervous. I never knew how bad it was, but it was never much of anything, it was just around the immediate edge. I really hated my loop. I hope your nurse is good. They may have a lot of ideas for you. Don't stress, you will get better & it gets easier, but it's also temporary. Are you using powder and protector spray before applying the wafer?
Posted 1/7/2018 2:54 PM (GMT 0)
Songlady, so sorry you are having such a hard time.
You are only 9 days out since your stoma was formed and it will continuosly get smaller till that levels off at about 6 weeks. Because of this it could allow output to get onto your skin and under the wafer as she shrinks.
The fact that your stoma opening is is below the surface of your skin, unfortunately is the main factor causing the leakage.
You are doing the right thing by using convex.
You asked if you can put the sticky wafer onto the bag and then apply that to the skin......in essence what you would be doing is applying it as a one piece. I don't think that could do any more harm.

Do the crusting technique as suggested. The powder used along with the barrier wipe/ or protector spray create like a protective layer. Just make sure it is good and dry before applying your wafer.

Yes marshmallows are a great help. Sometimes Immodium (over the counter med ) can be helpful when you need to do an unexpected change lets say after you have already eaten. Of course it takes a little time to kick in. In desperate times I have used both at the same time.

Hang in there till you see your ostomy nurse. She should be very helpful.

Also have some solace in knowing this is only a temporary situation for you.....and it will get easier dealing with it as you go along.
Posted 1/7/2018 4:53 PM (GMT 0)
Thank you, thank you for your tips - some really helpful info there! - and also I appreciate the sympathy and the "I've been there."
So far my bag has lasted 2 days (it was my third try that day when I vented.) I am having intermittent stinging, so I imagine there's some raw skin right around the opening, but.... unless I develop a leak, I think I'll leave it be until the home ostomy nurse comes tomorrow. I have emailed the ostomy nurse associated with my surgeon. I met her pre-op, and have an appointment with her several days after the home nurse comes. So, knock on wood, I'll not do damage to my skin with all this upcoming support.

The "crusting" - I certainly used the powder and the barrier spray; part of my frustration the other day was that then, as liquid would leak on it... whether to wipe it down and add more? Or just add more? Or not - just dry it off and keep going? (Hearing the advice "less is more" echoing in my head....)

You folks are the best. Again, thanks!



I have more supplies and samples coming; I hope there are come convex ones in what I receive! (I had enough mental fog when I put in the requests, I just don't remember. >.<)
Posted 1/8/2018 1:46 AM (GMT 0)
Song lady,

Yes, this was a great thread and much needed. My home health appointment is Tuesday, hope I make it. I am feeling a wee bit better tonight about everything but it will take time. I hope to return to work in the next couple weeks but am so worried about the unexpected gas that comes at any given time.

I look forward to following your threads.

May
Posted 1/10/2018 3:20 PM (GMT 0)
Sorry to have been MIA for a few days. Technical difficulties, not health difficulties.

A home ostomy nurse came to my house 2 days ago and gave me a lot of pointers about trimming the wafer to accomodate the bridge (the little plastic pipe the surgeon left in my stoma to keep it from recessing any further). Also she used some barrier creme that she thought would really help heal my skin - but also told me that my surgeon's ostomy nurse doesn't like this particular creme. lol. (These nurses are women of a mature age, have been in this profession - or frankly, I'd call it a "calling" - for a number of years and they all seem to know each other. wink )
The creme stung like heck for a few minutes but I believe it has helped immensely - I haven't had that raw skin stinging feeling on an ongoing basis since. Brava? maybe? was the name?

I have a dull ache near the stoma surgery site much of the time, and a few times a day it all just becomes general belly pain. I am learning that if I time my Tylenol and one of the prescription meds for when that is just starting, I am overall better off!

The home ostomy nurse on Monday did a bag change with me and suggested I try to keep that bag until Thursday (tomorrow). On Thursday I should try it solo, and then, if I have issues, I am seeing the surgeon and his ost. nurse on Friday. But I am tempted to try to change it today, because the peristomal skin is beginning to sting a bit on and off. Hmm, decisions, decision. If I change it and it doesn't work well, I've got 2 days of difficulty until I see the pro. Hmmm.
That's my big judgment call for the day, lol.

May, luckily my workplace is very flexible, so I have not had to give them a date for my reappearance. I work a lot with the public, so I need to be able to focus on others when I reappear, and also.... I am nervous about all the germs around right now! So we'll see. Hang in there! And my gas seems less. Even foods that caused my bag to balloon a few days ago are causing less gas now. That's probably because the system adjusting and healing? Hang in there!
Posted 1/10/2018 4:00 PM (GMT 0)
That all sounds good. My home nurse wasn't an ostomy nurse. She was an RN with ostomy experience. You're lucky to get a real ostomy nurse. You need one with a loop, since it's so difficult. I always had that burning shortly after placing a wafer with the loop. The end ileo is so different. You can wear the same wafer for literally a week and not have burning/itching. I am sure if I had the stinging I'd probably try to change it, but it is risky. I guess it depends how much it's burning. If it's tolerable, it may be best to leave it alone. With my loop there were times I'd change it and it would be worse, & end up burning again a few minutes later. With the end, no question, I would change it, but it wouldn't be likely to happen. It sounds like you're doing really well. Now it's just 7 weeks until reconnection! It goes quick. Let me know how it goes tomorrow.
Posted 1/10/2018 4:18 PM (GMT 0)
To me it sounds like you're changing the bag too much. Sounds like you are changing the waver with it. I changed my bag roughly every 5-7 days and never had a leak with mine. There was some of that stinging around the stoma with output "burning" some of the skin some days but if I changed it more frequently my skin would have hated me even more tearing off that adhesive all the time.
Posted 1/10/2018 8:21 PM (GMT 0)
Thanks, all. Bull, I didn't explain well; I have only changed the wafer when output has been leaking and running out under it onto my clothes!

My surgeon's nurse is quite convinced I need some especially convex pieces and a good belt and she has those for me. So, two days from now I should be singing a happy song!

I'm not having much stinging at all, I'm just a little oversensitive to it, having had such a bad experience last weekend with leakage every hour or so in the middle of the night. I'm learning!
Posted 1/10/2018 11:54 PM (GMT 0)
Sounds like you’re getting some great support and advice. GLad to hear it!

I’m glad you’re doing the belt too- I forgot to mention that was super helpful.
Posted 1/11/2018 4:21 AM (GMT 0)
Sorry to hear of your difficulties. I had a loop ileostomy and although I had no leakage or irritation issues I hope my advice/experience is helpful.

For me, I needed to change out my bag in the morning before eating or drinking anything. I gave my body an hour to wake up and let any output out before doing a bag/wafer change. I always attached the bag to the wafer before putting it on. I also did my bag changes sitting down and tried not to move too much as to not activate the stoma. I also made sure to eat a dinner of thickening foods the night before my bag changes. That way if "stumpy" wanted to be active during a change it would be thicker like apple sauce instead of all liquid. Makes it easier to clean up and then try to quickly put the bag on. For me, I did the changes every 3 days as suggested, but could have gone longer. I did have some minor irritation on the skin under the stoma, but doing the crusting method in that area helped a lot and the off and on of the irritation is what kept me doing bag changes every 3 days so the irritation wouldn't get too bad. My stoma was about an inch sticking out of my body and stayed that way the whole time. It did shrink but very little. This could be why I never had any major issues and never had a leak. The placement of it on my body may have also helped too.

Best of luck to you with your ileo. I would also suggest you look into an ostomy support group. You'll learn new tricks and get lots of advice from people who are going through the same things. Your surgeon or hospital should have some information of one near you.

cmfdrama
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