i'm having so much pain around my new stoma (a permanent end ileostomy)...it feels kinda hard above it and is sore and it has an ulcer beside it and it leaked there! i got a burn from the leak and it hurts so much when i peel the bag off...not sure what to do or how often to peel the thing off now. help!

did i mention my ostomy nurse is gone for the month of may?!! oh ya, and it hurts when stuff comes out of the stoma...i can feel pressure and pain build up until it comes out. it also hurts when i get up out of bed, and when i get in and out of the car....i can't bend around or lift my left knee towards my chest (my stoma is on my left side). if i just lay there on my right side or on my back i can get comfy and it's just the stuff coming out that bothers me...do you think i'm having that much pain just from a 1' by 1' area of red raw skin and a little ulcer by it.......or is there scar tissue forming? (i do feel like it is muscle spasms sometimes...) or should i be really worried that something more serious is going on? i'm a month post-op and having so many issues....my midline incision has split open about an inch at the top and the bottom and is draining stuff...and my nurse just discovered that the two holes are communicating - she squirted saline into the top hole and it came pouring out of the bottom hole....and since that incision is so close to my stoma i worry that all this pain is something more sinister...that it is all connected or infected...i dunno what to do....i hate going to emergency because every time i go they admit me and poke me and then send me home without really helping me........the wounds i have look scary to every new nurse or surgeon i see and they freak out and then my surgeon sees it and sends me home...it keeps happening...and i have no veins left to poke! the last time i was there and they took blood it was from a tiny twisting vein just under my thumb and that hurt! i've never had so much pain getting blood drawn! they said i need a pic line next time probably...never had one and don't want one! and i don't really think they can do anything for me...and my surgeon is also gone til may 19th when i have an appointment to see him. *sigh* why does everyone go on vacation when i need help...if i had just kept my original end ileostomy instead of trying the jpouch i would be fine. back then i had zero skin issues for a year and a half, even after i got a loop ileo half way through when they created the j-pouch (i had it in 3 steps)....no leaks hardly ever, no raw skin EVER, no problems at all....so i didn't expect this. i used the same bags then too (convatec moldable wafers and drainable pouch). the only difference is that now i don't use adhesive and paste, i just use an adapt barrier ring. my dad says that i might be allergic to the glue on the wafer and the adhesive i used to coat my skin around the stoma with was like a barrier that saved my skin and it is gone now....and the paste probably helped to stop leaks better than this adapt ring.......this week, the stool went over top of the ring and under the wafer so the area covered by the ring is okay but beside it is red and raw in a patch....it is so weird that it was probably leaking for a couple days but it stayed contained in one spot and didnt leak out at the edge of the wafer so i never dreamed it was leaking....ugh...i won't make this mistake again- any pain and it is getting changed right away...sorry to ramble on sooo much. i'm freaking out cuz i've never had so many stoma issues and i am scared it will get worse. my dad said he used some cream that really helped heal his skin but it was so long ago that he threw it out and he doesn't remember what it was called...any ideas?

Niki,
I wouldn’t want to venture a guess as to what you should do as far as going to the hospital or not. It sounds to me like more than just skin issues and I’m sorry you are having such pain.
When my son had a very excoriated area of skin under his wafer we used plain (do not use mint) old Mylanta/Maalox on it. I let it sit first and then poured off as much of the clear liquid as I could and got to some of the thick white stuff which we put on his skin and let dry. It cleared his skin right up. We have learned that he cannot use anything with alcohol in it like paste, certain adhesive removers etc.. and that some wafers cause problems.
I hope you are feeling better soon and that it is not too serious. Having blood drawn under your thumb sounds awful!

I would definitely consult with your surgeon, just to be on the safe side. Esp wiht the ostomy nurse away, you should have an expert see what is going on; if all is okay technically, then you can go about fixing the external skin issues. If not, the sooner you get to fixing the problems the better.

Hi Niki,

I agree with Jill. The sooner you see your surgeon (or whoever is covering for him) the better. Your skin issues sound identical to the ones I had post j-pouch removal. I had several peri-stomal ulcers which were so bad that there was no healthy skin between the ulcers and Wee Willie. A couple of the ulcers were sinused to an abscess next to the stoma and they all showed signs of pyoderma (blue tinge around the outside of the ulcers).

You need to get these skin issues addressed before they break down altogether. If you need any further information on how I treated my ulcers then just let me know.

I hope things start to resolve for you soon. Please let us know what your surgeon says.

Luv & hugs

Shell

there is no one filling in for my surgeon and he is gone ...i have an appointment to see him on the 19th....im going to call the fill-in for my ostomy nurse on monday and see what is going on because my nurse was trying to make an appointment with a dermatologist ...last i heard he was having no luck and every time he called the dermatologist was a busy signal but he said he would keep trying...but then he went on vacation....everything is so much less painful today with my new wafer on. i got some "Sweeny" cream to put on the red area of skin and I'm keeping my eye on the stoma and ulcers...i'm very worried. i'm not even 100% sure it is pyoderma...it's not blue but it is purple-pink and my nurse said it might just be poor healing...it's probably an ulcer though because it hurts. i'm just getting impatient and want to be good enough to get out of the house already. and my bday is this month and i wanted to throw a bbq but i dont think that is going to happen...at least i have home care nursing coming to see me every day now....and i am going to their clinic this week to see a wound care specialist and she is going to probe around and measure stuff...see how my holes are all connected and where the tunnels are..i think what i really should get is an mri to see if i have abcesses and connections ...especially since shell had her ulcers communicating with an abcess! but i know from experience here that it takes forever to get an mri unless you get admitted to hospital and even then it can take days. boo.