Where to start with all of these ileostomy supply choices?

Hi All,

I'm 2 1/2 weeks out of a total proctocolectomy with permanent ileostomy and things seem to be going well. Of course there is still some post-op stiffness and pain and a little butt pain but things with the ileostomy are going well. I'm eating pretty much whatever I want and not having any problems. My output is thick and very much resembles what would otherwise come out of a regular UC-free bowel.

I'm having some issues with my urine stream as they removed the foley catheter twice while I was in hospital and I wasn't able to get things flowing, so they sent me home with it for a week. After it was finally removed I have a stream but can tell that there is still some retention in the bladder. If it doesn't clear up in the next week or so I guess I'll go see a urologist.

Anyway, I've received oodles of free samples from the hospital, the home health nurse, and from manufacturers where I've requested samples. I'm vapor locked as I don't know how in the world to use most of this stuff. I'm working my way through various different bags to see what I like and will get that narrowed down in time. My home health nurse, who I think I only get one more visit from, is big on all these extra sprays, wipes, etc. At this point though, since I'm through the very liquidy first week of output, am anxious to pull back and just see if I can get by with a minimum of fuss....maybe just the 2-piece bag without all the extra seals, pastes, sprays, etc. I wish I was going to have an ostomy nurse to bounce all sorts of ideas off of but after many inquiries and much searching there doesn't seem to be one within less than an hour and a half drive of me. All the doctors I've asked say they just refer people to home health organizations and since I'm relatively young (43) and not home-bound for the long term my insurance won't continue to pay for visits from a home health nurse. This isn't particularly convenient but I'll manage.

What works for you guys as far as all of these different supplies? I know I'm going to need to have some of these extra sprays, etc, in the arsenal for difficult occasions but what do you generally use to stick these things on and get them to stay? Do you find that you need a bunch of extra stuff or do they do okay by themselves? If you are traveling what extra stuff do you take just in case you get a blowout or a gusher?

<<<As I was typing all of this the rep from Coloplast called so I've got some more stuff coming :) >>>>

Thanks for your input and help with my output! :)

Brent

Glad to hear things are going well for you! I hope your urinary problem clears up soon.

With regard to supplies, I like to keep everything as simple as possible. I change my bag almost every day, but I think I'm the exception. It just what I prefer; whenever I shower, I take everything off & put a new bag on when I get out.
All I use day-to-day is adhesive remover to take off the bag, non-woven swabs to clean the area (I only use water, then shower) & to then dry my skin around it afterwards - & to place over my stoma as I'm drying myself in case he decided to act up! Then I put an Eakin seal around my stoma. I like these as my stoma isn't fully round, so I feel like they close any gaps that the wafer might leave. Then I put on the bag. And that's it!
I have powder with all of my supplies too, as my skin was sore at the beginning. But now I only put it on if I feel a little itch, which is quite rare.
I was given wipes & sprays etc too, but I think it's easier to have it as simple as possible, especially if you aren't having any problems. I'm actually using the first bags I tried, the ones that I was given in the hospital! I did try one other type of bag about 4 months in, and really didn't like the change, so I thought if I'm getting on with zero problems, why bother changing! You'll settle on what bag you prefer, everyone is so different in that regard.

If I'm going anywhere, I have a small emergency pack in my handbag, which has basically what I use for changing my bag, and a spare pair of underwear in it too. Though I think if output got on my underwear, it would get on my trousers too, but anyway! I also have some Imodium, in case I randomly get a lot of diarrea & want some peace of mind. It always slows down my output.

Going on holidays, I take at least double what I would use in the time I'm going away for, and keep it in hand luggage, close to you at all times - your supplies are something you most definitely do not want to be lost or stolen!!

Good luck! :)

Excusemeineedtopoop! Great name!
I'm in the same boat as you. Had my surgery on the 17th, I remember your post about your problem with you bladder. Mine doesn't sound as bad as your but it still hurts when I urinate myself. I think a lot of it at this point is we had an incision so close to our bladder and the surgeon probably knocked it around pretty good and made it sore. As of last week I finally don't dread having to pee! Hopefully yours clears up soon, it's very bothersome I know.
As for products they sent me home with the convetec moladable two piece and it seems to work just fine for me with no extra products at all. I think all those seals are really only needed if you have a problem with your flange by itself. Less is more in my opinion when it comes to all this stuff. What's your stoma like? Is it round and does it stick out far or is it flush with your stomach? I think the more flush it is the more apt you'll be to try things like the Eakins seal or any other number of seals and pastes they make. Or if your stoma is oblong I think you'll like the seals too.
I got a sample from coloplast and I really liked the 1 piece system I tried out. Haven't used their two piece system yet cause I want my stomach to heal up a little first. Coloplast seems to be less preferred to hollister and convetec for some reason, no idea why I though the coloplast bag itself was far superior to the bag I use with convetec moldable two piece. The flange is much different though, I wore it for three days but I was a little nervous about a leak. Didn't get one but it doesn't seem as secure as the convetec flange. I called a supplier to quote me on them and they are much more expensive than any other product too.
Coloplast also sent me a travel bag which was very nice! So that's my little travel kit when I leave. I have a pouch, flange, measuring guide, tape and some adhesive remover wipes in there as well as a bunch of paper towels. Everything I use for a change out at home.
I too shower with everything off when my stoma seems least active and use a blow dryer to dry the area really well before putting the flange on. Seems to be working for me just fine with no paste or powders as of now. Best of luck with your bladder, hope that clears up for you...try and get some rest. That should help

I don't use a lot of products. I use adhesive remover wipes to remove the old wafer, but other than that, I could just cut and slap on a new one. You won't have to cut forever though, eventually the stoma will settle at a size and you can buy precuts. I like the convatec moldable but the wafer is so big. I like the coloplast mio but there is no convex so it's not an option for me. I have been using hollister convex and it seems to be the happy medium. I hate the pouch that goes with it, too long and difficult to open but I have to sacrifice for the wafer that works for me. You really just have to go through the process, try things and learn. I was using powder in the beginning, I needed it because I was using flat wafers and I kept leaking. now that I am using convex i don't really need any of the products. I change my bags a lot but I only change the wafer when I need to. I change the pouch every other day+

Brent - one good tip I have is to use silicone-based adhesive removers rather than alcohol-based adhesive removers. The silicone-based removers don't sting! I use the Convatec Sensi-Care Releaser Spray (comes in a can) and the Convatec Sensi-Care Adhesive Remover Wipes. Both are (finally) available on Edge Park and they work great and painlessly. There are some other silicone-based products as well (Coloplast Brava has some, for example).