Hi, my name is Eric and I am brand new to this world. I surrendered my colon after a 20-year battle with UC. A J-pouch was formed, but a temporary ostomy had to be put in place.
This ostomy is the hardest thing I have done in my life. My wife and I have suffered with appliance leaks and changes all week long while my stoma is active. My skin is raw and everything hurts.
I know that this will get better, but any advice would be appreciated.
Thank you.
Hello Eric
Yes, it will get better.
I have had 4 different stomas now, and I have always had trouble in the first one to two weeks until I get a handle on the different shape and size of each of them.
Don't mess around, get straight in to see the stoma nurse where you will find numerous options for your difficulties.
Having said that, the first week or two can be difficult as the stoma needs time to heal before using barrier rings or convex bags so as not to put too much pressure on the healing wound around the stoma.
Make an appointment now.
Regards
Axl
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Hi Eric and welcome.
You will find a lot of supportive kind people here, and many have been where you are now. I know I have.
Do you have a one-piece bag or two-piece? Is around your stoma flat or sunken? There are many factors to how to make your bag stick.
I have a sunken portion under my stoma, so I cut one of the wax barrier rings in half and stretch it a bit and put it under the bottom of my stoma (around the lower portion). There are many factors and differences with each person.
When I change my bag, I put a paper towel under the area for any unplanned mess. I start to peel the top of the bag open and pour the excess fluid out of the adhesive remover packet onto the adhesive, and it will peel right off without pulling my skin. I have a bag ready to put the old bag and garbage in. I wipe everything up with baby wipes, then adhesive remover wipe around where adhesive would stick. Then I use shaving cream and shave all around the stoma, then damp wipe with two or three wet paper towels (water only). If there is irritation or blood, dry and apply some stoma powder to affected areas, gently dust off excess with dry tissue. (Then hold a dry paper towel over the area to dry). Let air dry, (I then put half ring on) (then with the one-piece bag I have already cut hole to size) then I gently peel backing off adhesive, line up the hole (make sure the bottom of the bag is pointed downwards where you want it to dump), and gently stick the bag to skin (adhesive part).
I hope some of that might help. When we are turned loose from the hospital, we often find out what nobody has told us. Please update us, mtnman.
One more thing: you may find leaving a little room in the hole you cut around the edge of your stoma because a little jagged edge can rub and cut your stoma. Not much so as not to irritate skin from the poop. Mtnman
Hi Eric and welcome,
Mtnman has covered most everything there. I found that in the beginning, my leaks were about the pouch system that was recommended by my ostomy nurse. It was horrible. Most ostomy nurses don't have ostomies, so you may want to call each of the major makers for samples. They will send you three of each that you ask for. Convetec, Coloplast, and Hollister. You can even just go on their websites to request samples. Ask for both one-piece and two-piece pouch systems. Cut-to-fit, moldable, and pre-cut options too. I use a two-piece system. Meaning I put a flange on and attach the pouch to the flange. That saves my skin because I only change the flange every 8-10 days. I can change the pouch as often as needed. I have never had any skin issues, so you probably want to get those all healed first. I also use cut-to-fit. Your stoma may change shape as it heals, so the cut-to-fit did not fit as well as in the beginning. Lots of choices.
Ask any questions here. As you can see, those with experience will jump in there with what works for them.
Utilize that experience but also keep in close contact with your ostomy care nurse.
Puppyluv
Hi Eric, welcome to MAO. The advice you got from others is spot on. The one thing I recommend is getting a belt that attaches to the clips on the edge of the pouch. You will have to give us more of a description of what you're doing when changing and putting on a new wafer and pouch.
Hi, Eric.
Welcome!
You're getting great advice and tips from the membership. : ) If I may add to Mountain's tip?
After you have cut the circular/oval opening in the appliance for your stoma, run your warm fingertip around, over the just-cut edges. The warmth, along with just a little pressure from your finger, will help smooth out some of the more jagged edges, reducing the chance of injury.
Lily17
Welcome. Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. There you will learn about foods, skin care, clothing, products, activities, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember you are not alone on this new journey of yours. Best of luck.
Thank you all for your help.
Went to surgeon first for follow up.
He put on a Convatec flange and barrier ring which lasted 3 days and nights.
This morning we tried a sample from Coloplast.
Will see a real WOC nurse this week for her best recommendations for my situation.
Again thanks to all for responding.
Eric
2 weeks in is not really that long. It does take time to get it figured out. If you have a nurse, call her. If not, call the doctor and ask them to advise someone to call you. One thing that helps is air. At a time, you can use a towel or a good idea is non-chemical puppy pads to hold under the stoma and let air get to it. There are several things to use after you heal. One thing too is to make sure the bag is clipped on all the way around if you use a two-piece. Most of my leaks were for this reason. If you have several leaks with one box, I also learned not all bags are made well. I have this very rarely, but when I do, I call the company and they've always replaced a box for free. I have a urostomy for 20 years, so if I can help, let me know. Give it time and don't get discouraged. nbsp
Hi, my name is Marsha, and I've had my ileostomy for over 50 years. Although that was a long time ago, I still remember the trial and error applications, leaks, and shortage of "good supplies". Today you're lucky to have stoma therapists available, and if you don't have one, it's relatively easy to find one. Another option is to contact other ostomy supply companies and ask for samples...
I'm not sure what product you're using. I much prefer a two-piece appliance because of the ability to place the wafer more accurately. I use Convatec moldable wafer and pouch. That comes in a flat wafer and a convex since I have a very uneven belly surface...
The most important issue besides fitting a wafer is treatment of your skin. I gave up using soap under the wafer years ago, and for that matter, I don't shower with my appliance off. Soap or body lotion residue impedes sealing the wafer and can cause leaks. I was told by some young stoma therapists that I was using the products in the "wrong order". I didn't argue, but I tested the damn products back in the day!
I use a solvent remover (Smith and Nephew) to get off old adhesive. Next, I use Safe and Simple peristomal cleaner wipes. Although it's duplicating the Smith and Nephew cleaner, I find that this one really cleans up any leftover residue. Next, I wash the skin with hot water followed by cold water and dry well. I then use Smith and Nephew Reg (as opposed to no sting) skin prep. The sting makes me feel like I'm "healing" whatever abrasions I might have around the stoma. I then dust the area around the stoma with stoma adhesive powder. (This is what the therapists thought should come before the skin prep. I humbly disagree.) Stoma adhesive powder has wonderful healing elements in it, and once I place the wafer around and on the skin, I can add additional powder to any gaps around the stoma. If I'm not active, changing takes 5-10 minutes. If active, good luck. For me, the best time to change is first thing in the morning before eating or in the evening before dinner. After the wafer is on, you can follow the directions to attach the pouch...
Everyone develops a procedure that works for them. Back when I was a "kid", I found that taking baths shortened the time my wafer stuck, so I rarely take baths. And while I love to shower without the wafer and pouch on, I don't like to expose my skin to the softeners in soaps, so I leave my appliance on when showering. If it's a day I have to change, I'll take it off in the shower and just let the hot water do its work. Just a simple luxury. The best advice to you is to try different products to see which ones work best for you. Best of luck. Feel free to write if you need more suggestions. Marsha
Hi Eric,
I'm a fairly new ostomate myself (9/25/2020). I'm learning that for me, achieving a good seal was key in preventing leaks. Also, the Hollister products with ceramides, CeraPlus, seemed to help my irritated skin heal. Lastly, remover and barrier wipes with no alcohol are best. I currently use a two-piece. I attach a CeraRing right on the flange before I attach the flange to my skin. That seems to be giving me a good seal, which prevents leaks, and leaks are what irritate the skin. I hope this helps. I learned everything by trial and error with no assistance from a stoma nurse and no advice from the hospital. All three major ostomy manufacturers are very good about giving out samples. I actually just found this website recently, so kudos to you. Good luck, fellow ostomate.
Hello all,
It has been a month since I posted my troubles; and using the Coloplast 2-piece system with a barrier ring has worked out for us. My wife, who I refer to as my stoma nurse, has it all figured out and our routine is now consistent. I keep the system on for 3 days/3 nights and change the appliance every 4th morning.
Thank you all who responded with your suggestions and words of encouragement. It was so helpful during my darkest moments.
Ironically, while I have other health issues to deal with, the ostomy is the least of them.
Very best regards,
Eric