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Step 2 scheduled March 19 will my bags still fit my stoma

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Posted 2/9/2018 5:29 AM (GMT 0)
Just found out today I am booked in for my step 2 out of 3 |"the making of my J pouch'. First surgery was Dec 12,2017. I have read a great deal about step 2 and the major problem with the Loop ileostomy is leaking, very restricted diets, dehydration, anal mucous leakages plus more potential for blockages and high output compared to the end ileostomy only leaked once with my end

I have about 40 bags from my visiting home nurse so I was wondering after step 2 did you have to change the type of bags you were using ?

ps so scared to have another surgery I just started recovering fully about 2 weeks ago and now its about to start all over again.

rolleyes
Posted 2/9/2018 5:51 AM (GMT 0)
I didn't necessarily have to buy all new stuff, but I ended up doing it anyway because it was more convenient to do so. My supplies were covered at 100% since it was the end of the year and I had hit all out of pocket costs, so I got what i needed, and donated the old supplies. With my loop, I had a lot of issues getting long wear time, at a certain point, I gave up on 2 piece systems and wore one piece and changed it every day. It wasn't great for my skin, but it was the only way to have peace of mind. I never had anal leaking, or embarrassing pouch leaks, I had burning around the stoma that felt like a leak, even when there wasn't one. I tried rings, pastes, a variety of wafers, nothing helped. Some people are 100% fine though, so don't think the worst. My end ileo was short in comparison to many, I needed convex supplies, but my loop was even shorter, and it was dome shaped and tended to point down. I still needed convex, but it wasn't as effective. If I remember correctly, it was a tiny bit smaller after, so anything precut I had didn't fit how I needed it to, but I could still cut to size. I was the smallest wafer in all the brands before and after. I actually bought precut, one-piece with my loop since I changed it so often. I can see if you have an ileo for a while, and things were stable, it's pretty easy to buy those and pop them on as needed. I always carried those in my emergency kit too, even with my end. I had one issue with a blockage, but it passed without any treatment. I had fast transit and more trouble with hydration, but you can manage it with diet and fluids.
Posted 2/9/2018 2:23 PM (GMT 0)
Valli, I can definitely relate. I had step 2 surgery two weeks ago. My first surgery was last May. I was supposed to have surgery 2 in October but had to delay because of a blood clot. I spent months dreading surgery 2. I felt SO good after surgery 1, and I didn’t want to feel bad again, didn’t want to deal with a hospital, didn’t want to go through another recovery. And a lot of people say step 2 is a harder recovery.
It hasn’t been as bad as I feared. The post-surgery pain was minimal to nonexistent for me, and I didn’t have the learning curve of caring for an ostomy again. But recovery is no fun, because I want to feel better now ... don’t have the patience to recover slowly this time.
My main issues in recovery have been fatigue, nausea, and some skin/pouch issues, and I’m happy to report that I’m starting to feel much more normal now. I am having anal discharge now, but it’s not a big deal. Just some discharge sometimes when I urinate ... no pain, and it seems to be getting clearer in color.
As for ostomy stuff, I had to get mostly new supplies. I had been using a flat wafer and a two-piece Coloplast system, and now I need a convex wafer. I had a lot of leakage initially because my stoma is so much closer to my skin and points more downward. Changing the pouch was hard, because I couldn’t find a time with no output, and it is really liquidy. I got a yeast infection under the wafer, and then getting output on that skin burned so much. But eventually I found a good time to change (first thing in the morning, without drinking any water overnight), and I found a new pouching system that works for me (still a two-piece setup by Coloplast). The coupling opening for the bag isn’t the same as with my previous wafer and bag, so I’m not able to use any old stuff at all. I donated it to my ostomy nurse.
I can tell that things go through my system a lot more quickly, so I try to eat more smaller meals throughout the day. I make sure I drink at least 70 oz. of water a day so I don’t have to worry about dehydration.
From your signature, it looks like you have been through a lot in a short time. Surgery is no fun, but the sooner you get it over with, the sooner you can get back to your life ... looks like it’s been a while since UC took it over for you. You must be pretty strong to power through all this. If you can do 5 weeks in the hospital, you can do surgery 2 no problem!
Posted 2/9/2018 4:13 PM (GMT 0)
Do you have 1-piece bags or 2-piece bags?

What people really need are convex wafers. It pushes the stoma out further and gives more support, it will help with some of the leakage issues that you've read about. I'd recommend adding accessories like a belt, protective barrier sheets (these helped me a lot) and barrier strips.

Many of the things that you are reading about are the first few weeks after the new loop when your intestine is still in shock from the surgery. The loop will start acting better as you heal, towards the very end it was acting like my end ileo.
Posted 2/11/2018 5:23 AM (GMT 0)
Thank you for the replies everyone. I am wearing a few different ones right now. My home nurse supplied me with a few boxes of hollister 2 pieces with a convex wafer i believe i have around 20 left. I have had no real issues with them plus a few other samples for other companies.

I just talked to a friend tonight that had his done a few years ago and he said talk to the surgeon about it before because some people have no problems so is it the way the surgeon fits the stoma is there anything she can do during the surgery that may eliminate this problem.

Also,I read after a loop ostomy is constructed, a plastic “bridge” or rod is often kept under the stoma to prevent it from pulling under the skin. Has anyone had that done

Just wishing this year to be over with
idea
Posted 2/11/2018 2:51 PM (GMT 0)
The rod is temporary, they removed mine after a few days or weeks (can't remember). Mine was metal.

The first week or so is the worst, things get better. You don't hear about the good things while people are recovering; they normally just when they are looking for help with their Loop problems. I was able to go back to work with a Loop and it did start functioning like an end ileo as I healed.

Get the protective barrier sheets. I had no leaks after I switched to those with a convex wafer. A 2-piece setup is the way to go with a Loop Ileo.
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