ileostomey

Hi Toritoo,

The new stoma goes through a phase in which it shrinks, and during this time the bags will leak. Everyone with an ileostomy goes through this phase. Also very important is to find the right kind of bag set up that works for your mother. There are different systems, one-piece and two-piece, both can be flat or convex, and then there are other helping products like eaken rings, skin prep products and powders to heal irritations. Best is to have the stoma nurse come over with samples that your mother can try out until she finds the one that works for her. You can also call the various companies and order samples yourself, but it helps if the stoma nurse comes and sees your mother's stoma, because she will get a good idea of what is most likely to work for her.
Good luck. I know it is really rough until you find the right system, and everyone with a stoma goes through this. Important is to take good care of the skin around the stoma because the leakages can be very irritating, and very irrittated skin can cause the bag to not stick well enough, and leak again. Probably best if she starts using skin protection products right away, like stoma powder, it worked for me. Other people will suggest other skin protection.

We all feel / felt overwhelmed by the situation. I remember I was having 2-3 or even 4 leakages per day during the 3-6th week after I had the surgery and it made me feel chaotic and unstable. I thought it would never work out in a way that I could rely on, but it was really just a question of working out the right system after the stoma finished shrinking. For me, it was a convex-light coloplast one-piece bag with an eaken ring, and I never needed anything else for the 12 months I had the stoma. There were a few leaks after that, sometimes during the night. These were caused by stuhl building up on top of the stoma and not falling into the bag. This could happen if the output is too thick, or if I was wearing something too tight. Still, even when it happened once in a while, I treated it in a practical way, got myself to a bathroom and did a bag change. Leakages stopped being an emotional issue. So it is also important, once your mother knows what kind of system works best for her, that she always carry enough supplies with her for two changes. I never left my apartment without it, not even just for grocery shopping. In the twelve months, I only needed to change bags maybe four times at work and maybe six times at night. It will happen sometimes, like I said, but just took care of it without getting upset. I always knew I had enough with me to dispose of the leaking bag, clean myself off and put a new bag on.
Here's my list:

2 bags with the hole cut a bit too small.
1 pair of manicure scissors for cutting a bit more out to fit exactly.
Several disposal bags
3 eaken rings
Stoma powder
Compresses
Neutral baby wipes, fresh underwear and pantyhose
I managed to get all that very compactly into a small zippered case that was always in my shoulder bag or backpack.

Thank you one and all. I and my sister and brothers like I said are just so overwhelmed it's scary. We all have so many unanswered questions. Last night Mom had to go to the ER where she found out she was low on hydration and her kidneys were affected so she is back in the hospital again. I hope I can come back here with other questions that we all have. Like how do I make sure she get the nutrition she needs when everything she eats goes through her within a half hour or so? Even medications come through the bag before they are absorbed into her system. Thanks again all. Toritoo

Hi NASCARonm,

Thanks for the tip. I guess that part of the problem is they only sent us 2 different bags to try in the beginning and then 3 months of the one we chose. But there was nothing called Eakin Seal and I've heard that quite a bit since I started looking into this whole thing. I guess I have a lot to learn and a lot of different things to order or buy. But again
thanks for the help.
Toritoo

Ok, here's how we do it. First we remove and clean up the area around the stoma. Next we connect the new bag to a new to what I think everyone is calling the wafer, the part that seals the bag to the flange. After thouroghly cleaning the area we use the stoma powder and then a little bit of the spray before placing the bag over the stoma. We try our best to make sure to get a good seal without any creases which is tough since my mom is 78 and her skin is not taut. Then we pray that it will stay on. The "wafer" has the hole that is supposed to be the same size as the stoma so before we connect it we mold it with our fingers to what we hope is the right size. This was working well for a few weeks but not so much the last few weeks. Any help would be greatly appreciated it. My mom is a very outgoing woman and we're wondering when or if there will be a time when she can do this for herself? Thanks again.
Toritoo

Toritoo, where are you using the stoma powder? Are you putting it on a specific irritated place, or over the whole wafer? Stoma powder definitely interferes w/the wafer sticking, so you don't want to be using a lot of it -- only if it's necessary on red, weeping skin. Otherwise brush off the rest. If possible, don't use it at all.

Also, if your mom's belly is soft and/or rounded, you might be better off with a convex wafer. This is kind of bowl shaped, and it can be stiffer and just hold better.

Do you know where she's going to order supplies from? If it's one of the big houses, like Edgepark, call them up and have them send you a bunch of samples -- of everything, Eakin seals, different types of pouches etc. You can also call the manufacturers -- the main ones are convatec, hollister, and coloplast. Many have nurses on staff who can help you. They will send free samples too. All of these places deal w/newbies all the time.

Another product you might like is called safe and simple peristoma wipes. These are special wipes that don't leave any oily residue -- very good for cleaning up when you can't do it in the shower. They have a bit of adhesive remover on them, but not one that interferes w/the pouch sticking (do you use adhesive remover to get the wafer off? That can be deadly if you don't wash well w/soap and water.... removes the new pouch too).

Also, do you have a good stoma nurse? They can be incredibly helpful and will be able to be more specific seeing your mom's stoma and skin around it. This is a specialty (called WOCN or ET) nursing, and they know WAY more than most regular nurses.

With things passing through so quickly, is your mom taking lomotil or immodium to slow down her system? It would be good to ask the surgeon about that -- sometimes right after surgery they don't want you to take this things, sometimes they do.

You will get better at this! It's a lot of info to take in at first. Sounds like your mom is lucky to have the kids she has....

Oh sigh, sorry about the leak, but it sounds like you're learning, slowly but surely.

The companies themselves will send samples -- they want to hook you early on the products, as many people don't want to change after they find something that works.

Hope things get better soon.