Tips For Loop Ileo?

Hi all, my loop ileo is driving me crazy! Stoma spout is on underside and flush with skin, so burns it's way through bag adhesive rapidly. It's also sat in a divot and has it's own little moat around it. I've tried paste, Adapt barrier rings etc, all to no avail. In fact, barrier rings decrease wear time to a couple of hours! I'm changing every day, with a soft convex bag, and still suffering badly excoriated skin.
I've never found a stoma nurse worth their paycheck and have no intention going back. They couldn't sort it in Hospital or at my first outpatients, so further visits are futile.
Maybe someone here has an idea I haven't tried?

Thanks for the suggestion of barrier sheets Eva Lou, but they're also something that lasted less than two hours! The trouble is, the skin is so bad around the stoma, nothing wants to stick there. I've tried stoma powder, but it's yet another useless hinderance.
I am literally a prisoner in my own home, only daring to leave for medical appointments, and then it's an excercise in stress.
Nothing I had previously read could have prepared me for the Hell that is a loop ileo, especially after 3 1/2 years of a well behaved end ileo.

Post Edited (Silent Lucidity) : 7/15/2014 9:11:05 AM (GMT-6)

Eakin seal?

Sue

Does your surgeon know about how bad it is? Sometimes they can do a small revision surgery that could improve your quality of life significantly. The other thing is that although surgeons like to have 8-12 weeks of recovery time for the pouch to heal, it is often fully healed within only a couple of weeks. Especially since you had your colectomy years ago (so I assume you've been off meds for quite some time??) it's possible you could be ready for takedown soon. I know a FAP patient who had a terrible loop and had her takedown in three weeks.

file://http://www.funnyjunk.com/funny_pictures/4524789/Metallicat/

I don't have anything more to add, but this super funny jpeg may brighten your day a bit!

 

Liz, the Hospital I'm registered at has four dedicated stoma care nurses. I've seen them all now, nor do I care for them or have any faith they'll sort this problem out. The best I can hope for, is to keep going back, in the hope they'll recommend an earlier takedown. The surgeons seem to rely on the word of the stoma nurses, in the determination of whether surgical intervention is the only solution.
The stoma care dept is also only available from 9am-3:30pm daily! That certainly didn't help the night I was in Hospital and did 16+ bag changes, with no help available other than the poor healthcare assistant that applied most of those bags for me, as I was both physically and mentally exhausted.

Caren, I appreciate your post, and I'm going to sound really stubborn, but I've developed a real chip on my shoulder where stoma nurses are concerned.

They told me about that today. No cutting of the wafer! It's moldable. She asked me what size I have been cutting for my stoma and now samples are on the way.

Don't give up on stoma nurses....you just haven't found the right one yet. The one I was assigned to in the hospital is INCREDIBLE! The one who has been coming to my house is very nice, but doesn't compare to my original.

I hope you get some relief soon!!!

Silent, have you tried all kinds of paste? Rings were useless for me as were most brands of paste. I eventually tried hollisters karaya paste. It contains alcohol so it will sting like a ba@t%rd for a few minutes but it is the only paste that works for me. I recently tried eakins paste and it was no good. The karaya paste is a LOT more fluid than the other pastes so you can spread it on easily and push it into the dips. I use the glue spreaders you used to get in school to apply it and it works great.

It took so long to try hollisters paste as the stoma nurse had been told not to advise using paste. I think some nurses when faced with problems just go to the 'big book of stoma' and work their way through the problems listed. I also think the ' big book of stoma' is holding a lot of people with ostomies back. I notice a lot of people on various forums blindly following it, and not thinking about what is best for them.

Definitely try the moldable Synergy. Convatec also has the SUR-FIT Natura Durahesive Moldable Convex Wafer. It's also moldable and 'turtlenecks' up to hug the stoma. The durahesive part of it is made specifically to help for high liquid output, such as the loop ileostomy.

have you spoken with your sugeon at all? Perhaps if you tell him/her what's going on, they may have some tips or advice. I used those Convatec Natura moldables right aqfter surgery, & for the first 2 weeks or so. I found them to be good, fit snug, no leaks, etc. But this was with a decent end ileo. Funny enough, I had to use Convatec when I had my leak at work, & the adhesive irritated my skin like crazy, itchy welts sprung right up.And this is after using Convatec for like amonth with no problem!

I always change in front of a mirror. It definitely helps in seeing all of the angles.

That is unfortunate that you have to have the stoma nurses approval. Yes, I would be much more assertive able how bad it is and how miserable it is. I'm not saying lie to them, but I would lay it on thick on how much it's impacting your quality of life, leaks every 4 hours, can't even make it to doctors appointments without a leak. I hope if they really understand how horrible it is for you, they'll tell the surgeon you need the revision. Try to get them to walk in your shoes!

I wish you the absolute best luck with this. Keep posting, and if nothing happens on the doctors end, at least we can keep trying with different products/solutions here. Hey, at least with the NHS you can keep asking for different ostomy products for free, right?

do you read the j-pouch.org forum? Most of the posters have a pouch, so there's got to be tons of advice on loop ileos. I wouldn't want a revision either, just get trid of the darned thing already! How horrible, being housebound again. Have you tried calling the various manufacturers, asking for advice or tips? Hey, at least a month has already passed since your surgery! So with the moldable wafers, is the opening of the stoma so low that stuff gets below the wafer? Can you try the moldable ones again, & sort of push it down hard on the bottom side, so that it edges right up to the opening? Kind of apply it at a slant? I'm just grasping at straws, really... Hoping someone has some sound personal advice for you!