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Loopers - advice needed

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Posted 6/8/2013 8:09 PM (GMT 0)
Ok, I am seriously hating this loop right now. My output is all liquid and foamy. I have taken Imodium, which did nothing. Metamucil helped for maybe 2 hours. Even my normal thickening foods are not helping. And I have had 2 awful leaks today. My skin is totally raw and the area around the bottom, where the working part of the loop is (and very flush), hurts badly - I can't see it well, but my husband is worried about a separation or abcess. My MIL is here and is a nurse, but has never dealt with a loop before, so she's not sure whst she's looking at. And my home care ostomy nurse can't come until Tuesday. Ideas, advice would be much appreciated. Oh, and I'm using a flat wafer right now - they said I needed to wait until 2 weeks out to go to convex this time brcause it was in danger if separation.
Posted 6/8/2013 10:23 PM (GMT 0)
I wish I had some advice to offer. I do know the convex worked much better for me so hopefully that will be helpful when you can use them. But in the meantime....

Are you using powder and barrier wipes on the skin that is raw and hurting?

How much Imodium are you taking? Is it possible for you to get the lomotil (? - prescription stuff from the dr)? I know for me, it has taken quite a while to get output thicker and is still quite liquidy often, but less so as time has gone on. Are you finding any correlation between foods and liquids with the output?

Sorry to not be of any help. I hope that things clear up for you soon!
Posted 6/8/2013 11:14 PM (GMT 0)
The only advice I can offer that a nurse told me to do is to dab Mallox on the broken down skin around the stoma. Apply a coat, let dry, apply another, let dry ect. It relieves the burning and itching temporarily to get some relief. I had a horrible time with my loop because my stoma was flush to my skin and no matter what I did I had pure liquid output that ran like a running faucet. Takedown couldn't have come soon enough!
Posted 6/9/2013 12:39 AM (GMT 0)
Marianne, that's what mine is like right now. I'm now at 4 leaks today and feel like tiny razor blades are cutting into me. We put some nystatin cream on the last time - it's prescription strength diaper rash ointment, and helped when I got some weepy skin with my end ileo. And I found some lomitil in my cabinet and took some if that. I may have to call home health care in the morning and beg for an ostomy nurse to come help me if this doesn't get better. Right now, I'm beat. Taking pain meds and going to try to sleep.
Posted 6/9/2013 5:37 AM (GMT 0)
There is a skin protectant product called Marathon Liquid Skin Protectant that is awesome.

It is designed to heal even macerated peristomal skin. Think of it as a superior Cavilon Skin Protectant.

It is available on Amazon.com (isn't everything available through Amazon?). There is also a Marathon web-site that explains the unique virtues of the product.

I cannot recommend it highly enough.
Posted 6/9/2013 12:23 PM (GMT 0)
Sadly, I didn't make it to morning with that bag change. After 6 changes, I was bleeding badly and screaming in pain. Went to the ER, and one of the docs from my CR practice was on duty. She said the stoma is definitely not sitting quite the way they would like, but not totally collapsed. They admitted me to try to thicken my output and have the WOCNs work on the best bag system and trying to clear the macerated skin. And they gave me pain meds since I feel like I have tiny razor blades attacking my stoma and the skin around it. So far, the 2 bags they put on have also leaked - ugh. At least on IV pain meds, I don't want to kill them when they clean it up again
Posted 6/9/2013 1:23 PM (GMT 0)
Ugghhh Alison I'm so sorry you are going through this but I'm glad you're in the hospital where they can help you and you're not so alone in this... The loops are really so hard to deal with compared to the end. Perhaps the pain meds will slow you down a a bit too and reduce the liquid.

Keep us updated! Rooting for you :-)
Posted 6/9/2013 2:33 PM (GMT 0)
Sorry to hear things are so bad. Glad to hear that they are taking care of you!
Posted 6/10/2013 2:59 PM (GMT 0)
Wow, I am so sorry to hear that you are having a difficult time. The only "issue" that I have with my loop is that the mucus discharge from the bottom was deteriorating my wafer because I wasn't cutting the bottom big enough. Since I have really focused on that, I seem to be doing ok. I am envious :o) of those with end ileo's. I would love to be able to cut the wafer the same size every time or buy ones that actually are cut to fit but no luck for me!!

I hope they take good care of you and that you get some good advice while you are in the hospital.
Posted 6/10/2013 3:04 PM (GMT 0)
Thinking of you Alison. Just did a change myself here at home and dealt with the typical "leaning over a garbage bag for 10 minutes waiting for the liquid output to stop" loop ileo nonsense, but knock wood my skin seems OK (better since I added the dreaded ostomy belt).

Hope you're doing better and on your way home soon!
Posted 6/11/2013 10:25 AM (GMT 0)
Hopefully heading home today. They have me taking 4 lomitil and 2 doses if Metamucil, and added probiotics too. I was very dehydrated and they have pumped me full of fluids and magnesium. And the WOCN angels came and decided to put me back in a convex wafer - and Liz, they gave me the dreaded belt too, but if it helps, I'll be happy. Will have a visit with them to check out the seal and skin condition later this morning, then hopefully home by dinner. CR surgeon said if I bounce again, she may consider going an early takedown and keeping me in on a drain for a while until the j pouch is healed enough to use ... not optimal, but we'll see how but goes.
Posted 6/11/2013 11:55 AM (GMT 0)
So glad you had professionals take a look, the convex wafers work so much better, I've heard the dreaded belts are good too for extra support...hope it all sorts itself out ...
Posted 6/12/2013 12:21 AM (GMT 0)
Glad to hear you are supposed to be going home. Hope it happened and things go well.
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