New stoma!

My name is Sana and I'm about to turn 21 in a couple weeks. I just had my first surgery (the first one out of three!) last Wednesday and they sent me home on Saturday. I was only in there for 2 full days, and I expected my stay to be much longer. Everybody said I would be in the hospital for at least 5 days.
I'm doing alright at the moment (so happy to be rid of the UC), just trying to adapt to the stoma and the bag. They sent me home with 3 see-through bags (Hollister) which I absolutely cannot stand. Constantly being able to see what's going on in there makes me much more fussy and paranoid. Does that make sense? Also, the home care nurse came to help me change the bag yesterday and then last night it leaked and I'm not sure why. I also had a leak my first night in the hospital, right after surgery, and that left me kind of panicky.

I just have a few questions. The stoma nurse at the hospital gave me a tube of Adapt Paste to use when I change the bag. Does everybody use this, or maybe some other sort of adhesive? Also, what do most of you prefer, the one piece or the two piece? How about filters? If you guys could also let me know what brands you prefer, because I don't think I want to stick with the Hollister bags.
Is it normal to feel itching underneath the wafer, nearer to the stoma?

And this is a bit random, but did anybody have really sore shoulders for a few days after their surgery? So far the only thing that seems to help that is the percocets that they sent me home with, but I do want to get off of those sooner rather than later.

I have been reading through this forum for about a month prior to my surgery, but for some reason I can't seem to remember any of the information now that I need it. I'm just overwhelmed with everything that's out there and I'm not even sure where to start.

~Sana

Sana

Congrats on making it through the first surgery smoothly. It is a lot to adapt to the pouches etc, but you will experiment and catch on. Definitely get some opaque pouches, it's very nice to not have to see everything in there; totally get it that you don't want to look at it all the time.

Are you ordering from edgepark or some big supply company? They can send you samples of a lot of things. Is the skin around your stoma red and irritated? That can cause the itching. I use something called an eakin seal under the wafer -- it's a round sticky ring, and it protects the skin around the stoma. Some people use the paste for this too, but I find that the eakins are easier and they work better (there's also one called the adapt ring, that's similar).

Did you have laparosopic surgery? The pain in the shoulders is part of that, they fill you with gas and it migrates there.... it's very weird. Goes away soon.

The filters don't work at all with an ileostomy, but if you are getting a lot of air in your bag, you can use something called EZ vents, which are like the opening of a beach ball. You attach them and then can let out air without opening the pouch.

I like the one piece pouches because they are lighter, but a lot of people prefer two piece -- with a two piece it's easier to put on because you can see your stoma the whole time, and you can also swap between different sized bags (seems like more trouble than it's worth to me). I like the coloplast sensura one-pieces .... the ends of them are much easier to clean than the other brands. It's best to get a lot of different samples though, and try them. People have different body shapes, skin sensitivities, and stoma shapes, and different products work better w/each.

I second Dan on the "less is better." I had trouble at first w/leaks because I was using too much stuff. If you use adhesive remover (which you might not need to) be sure to clean it off w/soap and water, as it will compromise the pouch. Skin prep can also shorten wear time, I only use it if an area not under the eakin is irritated.

Another thing that a lot of us like is sure seals -- these are kind of like breathable saran wrap that sticks really well. They go on the outside of the wafer. If you have a leak, they can keep it in so it doesn't get all over -- very good for peace of mind when you are trying to figure it out. They are like the tegaderm used to hold IV's in place.

Did the stoma nurse give you a way to contact her, to call or email w/questions? I had a lot of them for mine, and still sometimes do.

Another good thing is to have something to put in the bag for deodorizer. You can get M9 drops that help, or I learned from this list about using 3% hydrogen peroxide, which you get at any drug store.... it works better for me, and it's way cheaper. Definitely nicer to empty the bag if it doesn't smell so awful

Good luck!

Ooh, another thing! When I sleep (still on my back at this point) it seems like a lot of the output stays at the top of the bag and on the stoma. Is this ok? Any advice?

the filters were work for maybe a day, i use a bag with filters, just cause thats what i use, not for the filters.
the shoulder thing is normal, another that may happen is really bad back pain, you wont notice it but you are probably leaning over because your stomach incision hurts, try really hard to keep your posture correct.
leaks can happen for lots of reasons, the hole can be cut too big, or you have messed up the application, or you had a faulty wafer, or bag. Usually, its user error. And at first thats really normal.
Usually, home health care nurses are not experts on ostomies, and nothing against them, they just dont know alot about it. My at home nurse suggested i take a pin and make tiny holes in my bag to let the gas out, i told her not to come back, lol.
You need to measure the stoma every single time you change for the first two months, at least. I cut my hole a tiny bit too small, and then i use paste, i apply the wafer, then the bag, then use the hairdryer on it for a few moments, to warm it, makes the seal better. dont do that until after your incision heals, it will hurt.
its a huge learning curve, but you will get it! And you are healthy!
good luck, and ask any questions you need to

Sana,

Yes, when you have homecare, they order supplies for you, forgot about that. Definitely talk to the nurse about what you're ordering -- she can get samples for you too. Do you have a regular stoma nurse at the hospital too? When I got discharged I was sent home w/a piece of paper and a name to call at edgepark. Of course, you can order from wherever your insurance will take, but it was easy w/edgepark, they know a lot, set up the insurance for me etc.

I didn't know about the rod, as I have an end ileo, interesting.

You can insist on having a WOCN (ostomy nurse) come from the home health place.... depends on where you are, but I was disappointed in the nurse who came, I got poop all over me and the bathroom when she was "helping" me change the pouch (she was supposed to be holding the paper towel over my stoma). When they finally sent a WOCN, she was very good.

It is overwhelming at first, but remarkable how fast you can catch on.... I've learned so much about this new ostomy world.

with loop ileostomies they always have to place the rod and they take it out after 10 days-2 weeks. my dr never explained to me about the rod either and i saw it only after the surgery. you're supposed to have this rod, unless there's a new technique to do loop ileostomies w/o a rod..?

When I had my ileostomy surgery almost a year ago I had the rod thing underneath the stoma as well. Surgeons definitely didn't wait 10- 14 days to take it out though. I think they removed mine about 3 days after surgery.

oh and blueglass, yes, they don't use the rod with end ileostomies.

guess you don't. just read somewhere that some surgoens do loop ileos w/o the rod. if you don't have the rod, then def use adapt rings or eakin seals, those are the best for sealing around the stoma. does your stoma stick out enough? if not, a convex wafer should help with that too. also, an ostomy belt. that helps a lot too to hold everything nice and tight. i never thought the belt was needed, but started wearing it few weeks ago and it's a big help.

Sana - hope your shoulder pain is better. As stated above, hubby had that and complained more about that than anything else. His butt area having been sewn up due to removing his rectum and anus took awhile to totally heal and was tender but that healed beautifully in about a month or so.

He needed paste in the beginning due to a crease at the right and left sides (like 3 o'clock and 9 o'clock positions) to prevent any leaking. As he gained some of the weight back he lost those creases kind of disappeared and he needs NO paste now. So as you heal and go along things will change a bit from what you were shown in the hospital.

Plus I honestly feel as great as the Ostomy nurses are -- I find and get a heck of a lot more insight and info right here on the forum with the "been there done that" approach of our fellow ostomates. It has helped me greatly figure things out for my husband.

Just take each day as it comes - try not to get too overwhelmed and be prepared to make some changes along the way if by chance the system you are sent home with from the hospital isn't ultimately the right one for you which could happen. Hubby had good results for 3 months with the hospital assigned appliance and had to switch to something else that seems to be perfect for him now. Good luck and keep us posted and ask away.

Ooh, and I have a random question!
Are we still able to get a significant amount of nutrients from raw fruits and veggies without our colons? I love eating them and have missed them so much, I just have no idea if I'm getting anything out of them.

Hi Sana and welcome!
(I teach 5th grade and have a student named Sana this year :))

I'm glad to hear you're doing ok!

As for what brand to use, I like Hollister and some hate it. I hate Convatec and some love it. It is really an individual preference. Try as many as you can and use the one you like best! Most companies are happy to send you a sample. Call around!

I also use a 2 piece. I like to be able to look at my stoma if something feels weird, or switch bags if the bag gets gross or I want a different size. Again, that's individual preference.

If you have a loop ileo, you may be having leakage issues because it is not sticking out far enough. That is common. You may need to try a convex wafer. When you're calling around for samples, ask for that too.

I used to use paste and then tried the Eakin rings/adapt rings and I really like them. You really can't mess them up, and if you're really nervous to try them, just try it on a day that you're going to be home for a while. The first bit of having an ostomy is really about trial and error. Each person and each stoma have different needs.

Hope that helps!! :)

Stephanie, one more question since you also use the Hollister bags. When you empty the bag do you worry about getting the end really clean before closing it? I tend to get OCD and paranoid so it takes a long time every time I empty and I go through a lot of toilet paper.