Surgery Time

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

It sounds way better than you were before Kello! All of that post surgical stuff will pass, and it will get better and better every day. Really - just the fact that you want to eat now is a great sign! Glad you're home safe!

I made sure to not say anything funny so you wouldn't laugh. I know that isn't like me, it's really me though : p
 
I really am glad that you are felling a bit better. The post surgery gets better. I was walking like a hunched over old man for like a week after my surgery, although i didn't have any staples. It does get easier though i promise.
 
Hi Kello

I'm really glad that you're recovering so quickly. Hopefully the surgery pain will disappear in no time and your gut will return to functioning normally soon after.

I know all about waking up in excruciating pain. I woke up while they were still man-handling me to put my gown on - needless to say I tested out my lungs at this point. I also lose a lot of my inhibitions when I'm coming out of anesthesia, so I think I uttered every swear word under the sun while describing just how much pain I was in. When I realised what I was doing I said "I think I'll stop swearing now" in between screams of agony - it brought a laugh from some other patients in recovery. It's always good to know you can be a source of entertainment.

Anyway get better soon Kello.
 
Oh Kello, I am so sorry for what you are going through, but I bet once you get through this early post-op period, you will start feeling great, and it will all be worth it. Hang in there, sweetie. We are all rooting for you!
 
thanks everybody!

im feeling ok atm. the mucous has gotten better, definitly making less messes which is real exciting! still having the urge to go to the bathroom and pass some, but at least i am not dripping the whole way there.
the pain overall is better, ive been able to lay on my sides which is helping a lot. esp because it seems like im starting to get pressure sore type things on my tailbone and lower back. has anyone ever had something like that?
my tailbone has been sore for a while, like months, because i have been reclined in bed for most of that time. and i thought it was just because im so skinny that my tailbone sticks out and hurts to lay on. but i just looked at it yesterday and it is red and the actual skin hurts. idk, from what i read about pressure sores it seems that its an early stage.
ive been trying to lay on the side and use pillows to take the pressure off in any way.

well hmm so idk. not much else. been eating and eating!!! omg compared to the week before surg (im talking 2 bites of mashed potato a day), i have been feasting the past couple of days! lots of chicken, noodles, soup, eggs (yes they make my bag smelly lol, but im not going anywhere). ive been trying things slowly too. had a little bacon yesterday- chewed super well and it seemed ok! yay.

appt on friday to get my staples taken out. whew im looking forward to that too, i dont like them
 
I'm glad the surgery went well but I'm sorry you are in a lot of pain. Make sure you do what they tell you to do and don't work out for the full amount of time they tell you. Dingbat sent me a story of a bodybuilder who had a stoma and didn't wait the full three months to start working out again and his stomach split or something. Just make sure you follow their instructions. Also, ask for some pain meds before you get your staples removed because they hurt much more than you would think.

Best of luck
 
oh and just one thing, once you get to the point of eating fast food or any burgers..... get the buns without sesame seeds, they don't digest and can hurt when passing through the stoma sometimes. Past experience... NOT GOOD, just ask for 2 bottom buns or if you go to mcdonalds they can put it on the seedless buns.
 
i used to hold my breath when they were taking the staples out.. and it helps if you get the nurse to agree to stop & give you a breather when you ask for it (if you need it) between removing them.

you're already taking great steps Kello.. your appetite and being able to digest stuff without the pain, and it sounds like the mucous problem is righting itself too. well done honey!

re the sore tailbone... mention this to the next doctor or nurse you see, i'm sure they can give you something for it before it gets any more troublesome. can you sleep with your bottom on a soft pillow or cushion?
 
im still taking percs when i need them...is that enough to help with the staple removal or should i ask for something stronger?
ive only got 5 staples.....so i hope it wont be too horrific. ive seen pple with scars that are so long and full of staples and i cant imagine ah!

good info about the sesame seeds, mark, thanks. those cheeseburgers are sounding so tastyyy....

ok WHOA big question:
showering? umm i thought that there was totally no problem with showering. like, people shower everyday and i cant imagine having to bandage up your appliance everytime you are going to get wet, so thats why i never asked here before, i didnt think it was an issue. and also no one in the hospital gave any info about the wet/dry issue either.
BUT they set me up with a home care nurse and she isnt sure and seems to think that getting it wet will losen the sticky of the baseplate (i have a 2 pc system). sooo....do i need to tape something waterproof over it EVERY time?? (i have not showered/bathed since surg, too much movement still)
i had a picc line for 5 stright months and after ripping tape and plastic off of my arm every day...ughhh no more!

thanks guys!
 
you should be able to bathe and shower with the appliance in situ and not have to change it purely because it's got wet. sometimes just drying it with a towel is enough, or blow drying the base flange with a hairdryer set on cool from a few inches away, if you're going out soon after your shower..

you can always contact the stoma appliances manufacturers for specific advice on their product's adhesive properties and how it should react in water. certainly, i've never heard of having to cover it or tape it over.
 
I don't know how much the staples hurt kelly but my girlfriends mom had staples removed from her ankle a few months back and she said she wish she had something to take to at least calm her down. SHe said it hurt much more than shs thought it would. Good luck you are in my prayers
 
Wow, lots I missed and still catching up Kello, sorry I couldn't support you right before, but I see the forum did it's thing and there is always plenty of that. Glad things seem to be "on tract" (little anatomy joke, but not funny enough to make you laugh) for a recovery....great news that it's been more or less as planned. You were going through too much to have to continue enduring that if surgery can do what the meds weren't able to...Take it slow, you'll be glad you did, if you're not sure of something, ask someone here who knows or your doc/nurse, no sense in assuming anything, better to be bothersome asking questions (perceived as such, rather) than to be saying in the ER "well I thought........"

Excellent news in the big picture I believe, take care of yourself.:)
 
hmm thanks for that bit about your mom, jeff. i hadnt really been expecting it to hurt, so im glad that i can be ready for it at least.

LMAO bens your dumb jokes do make me laugh!! haha seriously, i did crack up. so unfunny that its funny. and dont worry, the support is there whether one is able to post it or not :)
 
Re the staples, tbh I never found it that painful. Just make sure you stay nice and relaxed and don't clench your stomach muscles while they're pulling them out.
 
Kello,
So glad your over most of the pain. And yes, it does tickle to poo....!!!!

About the showering, Don't worry. The baseplate can get wet and still be sticky. I was advised to use shower gel that didn't have moistureiser in it, this might affect the stickyness. I can shower everyday.
I usually wait untill after my shower before I change the pouch, (I use the 2 piece as well), so it doesn't matter if it gets wet.

Throw any questions my way, no matter how silly they may seem. I'll try to answer them.
 
And RafHam is right about the staples. I had a Tramidol an hour before getting them out.

If your relaxed, it's much easier. It's actually not as bad as you think. The nurse taking mine out was very good. I barely felt anything. It was mostly the fear in my head that was the worst, but I now know for next time, that it's not soo bad. (I usually had stiches/sutures before).
 
one thing that i found that helps with the cleaning of the bag, and also for any itching that may occur around the stoma... Get one of those water pic things... use it to spray water into the bag and also can scratch the itch for you
 
Hey, Kello, I dreaded getting the staples (22 of them on the underside of my breast) out from my pericardial window surgery, but it was nothing. My hubby (he's an RN) took them out at home, and I felt NOTHING! I also had some sutures from the chest tubes, and they did hurt, but not too much. Try not to worry about it. Hopefully yours won't hurt either. Glad you are doing better!
 
hmm well now i am feeling more relaxed about the staple issue! thnaks for sharing your positive experiences about it. i also just talked to my aunt on the phone and she siad that when she got hers taken out after c-section it was no biggie. well, i will be prepared in case it is real painful, but now i have more hope that its a cake walk :)

oo mark thats a real good idea. i am soo itchy right now even, i keep poking around my stoma but no relief! im set up to change my bag tmr (the hospy set me up with a home care nurse to make sure im ok with it). its gonna feel so good to have a fresh set i think. add water pic to my list of things to purchase.....

dan--thanks for the shower advice. i think ill wait till after the staples are out to take an actual shower or soak in the tub, but im glad to know its no prob.
question bout the 2 pc thing- when you change your bag, do you clean out around your stoma? i havent changed my bag without changing the baseplate as well yet, so im not even sure how plausible this is. but just looking at it, i can see that the stool collects a little bit around the stoma right? i feel like i would wanna wipe that up on a daily basis if i had the chance when my pouch was off.
i figure ill wait till i am back at work and out and about to go with the fresh pouch every/every other day route. i see not much point in it now to use up the pouches....doesnt matter if im a little smelly in my house haha.
also ive only got 5 bags, the hospy sets you up for 5 changes, so i need to order more pouches before i can start using em up like that.

im gonna look into mini pouches....i have the 12 inch right now and its like the size of half my body lol. and it doesnt get very full before i need to empty because of the weight, so i feel like i have a bit of space to play with as far as pouch size.

today was weird. i am extra gassy today and the stool is more liquidy than it has been, but i havent eaten anything different at all. sticking to noodles, mashed potato, sandwiches of egg salad or chicken salad, and seasoned skillet cooked chicken. thats about it.

oh hey i know that corn kernels are a no-no. but what about corn chips? i just ate some tostitos and then i wondered if they were ok. and like corn flour? muffins and bread and stuff? is it broken down enough? i do chew my food to absolute mush now lol
 
Re the itchiness. You may want to look at the diameter of the nozzle (is that what it's called? I've forgotten). I found that if it was a little too large some of the stoma discharge caused itchiness and irritation when it came in contact with the skin. I got more snug fitting nozzles which solved the problem.

I had a 1 piece but I assume the part around the stoma is similar.
 
I did clean around the stoma when changing the pouch, but I don't bother now. It just seems like a waste of time.

When I change the baseplate, I give it a proper clean.

Have you tried the little circular slims to seal around the stoma?

Don't worry about the discarge, it varies from day to day anyway. Also, I was told that it would remain liquid for a week or 2, and it was after a week and half that mine settled to more solid.

On my pouch, the filter is at the top, straight infront of the stoma.
You can see a little hole on the outside.
If you look inside a new/clean pouch, you can see the filter part inside.
 
well i went to the surgeon today to get my staples taken out, and now i am home with an open incision packed with gauze:(

yesterday i noticed the skin surrounding staples was pink and a little swollen, also stinging pain. i chalked it up just to moving around(i cleaned my room yesterday). but before i went to bed i decided to take a look and peeled back the adhesive on my baseplate which revealed a little bits of pus and light red near the staples. i didnt think it could be a big deal bc my home care nurse had just seen the staples on wednesday when we changed my appliance and it looked totally clean to her (and me).
heres how the appt went today:

dr-how are you feeling?
me-overall better, but my staples dont feel too good. noticed redness and a little pus, etc.
dr-(peels adhesive off of incision) oh nah youre fine. it looks good
me- then whats with the pus?
dr- thats just from the staples being in. its ok (pulls out staples 1 2 3 4 5)
me- ow ow OWW! ow OWWW FRIK!
dr- all done!
me- god that hurt
dr-ohh come on
me- um, IT DID :ymad:
dr- (lightly poking incision with giant q-tip) hmmm....
me- what?
dr- (big poke)
**PUS EXPLOSION*
dr- oh man, there was pus in there....

YA THINK?!?!?

so then he pulled the entire incision apart. i didnt really know what he was doing, i just felt the burning of the hydrogen peroxide. before i knew it, i got see how it feels to have a giant q-tip swimming around inside your body. it doesnt tickle :(

so now it has to be swabbed out with hydrogen peroxide twice a day and then packed with a bit of gauze to drain. we are working on getting a home care nurse out to help us this weekend, the one whose been taking care of me is away.
i didnt look at the wound, i was too afraid to so i still dont know what it looks like. ughh im pretty freaked out right now.
i know its not really a big deal and like, it happens. but this is just one thing that has always freaked me out. the whole open wound packed with gauze thing. im not a squeamish kind o girl, but for this i am.

i felt so bad for my mom. i never looked at her face either while this was going on, but i could still tell how horrified she was as she watched my belly explode into pus and then saw it get peeled apart and a giant stick shoved into it. at that point she stopped squeezing my leg and walked around to my head. ughh i couldntve watched it, i know that.

my imagination is the worst thing right now. i imagine this giant deep hole into me, but i know it doesnt look like that. i know i need to see for myself but im so scared ughhh frickin.

any input would help please :(

so now the question is....how many percocet can i take at one time without dying?.....not really. but seriously, if i could not be aware of what happens these next few days would be nice.

:voodoo:
 
Hey Kello,

Sorry long time no post. Sorry you're having trouble with your incisions. My surgery was done laproscopically so I didn't have an incision (but I got every other complication known to man :). Are you eating normally yet? ITs a great feeling to be able to eat a whole meal.

Oh...and don't OD on the percocet....that's no good. But I remember they told me I can take two at a time, I'd always just take one and still be in pain. Two works pretty well. :)

Feel better.
ERin

P.S. Didn't see if you got an answer to your filter question. Its on the top of the bag...however, in my experience the filters are pretty much shit (hah). With an ileostomy our output is so liquid that the filter gets clogged the first time you lie down. I think they work alot better for people with colostomies. Honestly, I don't bother with them anymore. My advice for cutting down on gas and thickening output is white bread with peanut butter. It works like a charm every time, plus its delicious. ;)
 
aw :( sorry it happened Kello.

if it's any consolation, the exact same thing happened to me too.. approx the lower 3inches of my scar opened up, and yeah i was grossed out at first too. actually i had two 'holes' with a bit of healed scarring in between, and the docs in their wisdom decided it would heal better if it were one big hole so they cut the middle bit. without any anaesthetic whatsover :(

i had the gauze packing thing, then they changed that to silastic foam, and it didn't take long before the cavity began to heal upwards.. now it looks a bit different from the rest of my scar but it's fine, strong, healed and no neg effects.

the pus had to come out of you i guess, and it's better out than in.

on the pain thing.. it shouldn't really hurt when they change the gauze, other than maybe a little soreness, especially if your nurse is gentle. i think it's more an unnerving experience than it is painful.
 
@ding-well, im sorry the samer thing happened to you, but im glad that you can tell me from experience what its like. and i am really glad the pus came out. it feels much better, i had no idea that it was that bad until it went away. i went to blow my nose this afternoon and started to cringe waiting for the throb, but it never came. all this darn time it was the pus bubble that was hurting. how was i to know? never had a staples before, i thought that pain was normal! im glad to hear that the gauze doesnt hurt too bad too. just freaky :( im still scared to look, but i know i must. and the qtip in my belly is the worst i think.

oh and i wasnt referring to the percocet b/c i am expecting pain, more so i wish to just escape from all of this for a bit cause this is all so creepy and i have had just about as much as i can take atm. but i would absolutely not take more than it says to, lol dont worry erin! ive been taking 2 about every 5 hours.
and thanks for the advice with the filter. dan had commented on it too. i think the pouches i have now dont have them, i cant find it lol. so idk, i think i will order some just to see if i like them, but i see how it could just be more annoying than helpful.
i actually find my output to be not as watery as i expected. when i empty, it doesnt really come out of the pouch on its own...i gotta squeeze it out lol. and i have been drinkin lots of water, so i know thats not the case! but on the occasions when i am liquidy i will keep the bread and pb in mind thanks.
 
ok the home care nurse came and we swabbed and tucked gauze in there.

and i saw it and did some of it. so its a little better now cause my mind isnt digging my belly wound deeper and deeper. i know how it looks now.

bah.
 
My girlfriend says she hopes you feel better and that you get well soon and I say the same thing. I'll be praying for you. I'm sorry you had that happen to you, it sounds horrible. Feel better soon
 
Hey Kello! What an ordeal!! :eek2:
My bro had busted his tailbone and had a big hole in his butt, well two if you count them all :lol:
He had to pack his full of guaze, we had a table full of med supplies for his butt for a changs...lol
It didn't look pretty but he felt better after they did the surgery. They had to slice him open and cut out the pus bubble.
I haven't had a bag yet, but I really admire your courage and fun attitude. My thoughts are with you.

{{{HUGS}}}
 
thanks ladyb!
oof the tailbone? i guess he spent a lot of time laying on him stomach, huh?
thatn sounds really difficult, you cant see back there! at least my hole is right up front where ive got a good view lol
 
hey kello! i haven't been on the forum for a while, but i wanted to let you know that i am definitely thinking of you! it sounds like you are being a REALLY good sport and keeping a positive attitude through all of this. best wishes!
 
thanks a bunch rhov :)

question-
do you guys (ostomy people) have days where barely anything comes out? i had almost no output today. its not like im plugged up i dont think, i mean a bit has come out here and there, and some gas has passed. and i dont feel "stuck" or anything. its just weird! im putting the food in one end and its not coming out the other!
 
Hey Kello,

I've had days like that...usually it just clears up on its own, drink lots of fluid, etc. If it lasts more then 12 hours or if you start getting abdominal (sic?) pain, nausea, or distention of your belly, then you should contact your doctor immediately or go to the ER (those are the symptoms of a blockage, ileus, or similar problem). Most days I have little to no output in the morning and afternoon and then lots of output in the evening, it may just be your body getting onto a schedule.

Erin
 
ok thanks erin. my pouch ended up being pretty full this morning when i woke up, but usually i have to empty in the early am before i fall asleep and still nothing was in the pouch at that time. pretty weird for me.
i am a night pooper i know that already! lol its like as soon as i get in bed around 11 or 12 the tickle of the poo begins! and then i have to empty at least once or twice before i fall asleep.
same for me though, not much comes out in the morning. kinda nice to have a quiet time to change the appliance.
 
Oh Kello, I am so sorry about the pus episode at the doctor's office. I'm sure that was awful!! Everyone is right, though, you have such a wonderful attitude about all of this, you are truly an inspiration to all of us!! Hang in there. It will get better!!
 
hi Kello - yep the output can change in frequency and consistency, depending on what you eat, & how much.

i think, like Erin said, your digestion might just be settling into a pattern now - maybe the increased amount you saw before was just post-surgery upset.
 
okidoke. thanks for the input!

yup it was back to the way it was last night. haha woke up at 6:30 am with 18 tons of poo in there lol.

gonna have to start setting an alarm or something! thankfully im not the gassy type it seems, havent had any balloon problems yet.
 
I'm surprised that there is no filter Kello.
It isn't much use at night time, but it does work quite well during the day.
Ask your nurse for a different supplier.

How are you getting on with changing the baseplate?
Do you change the pouch daily now? Like I said, there's no point in doing all that cleaning when your just changing the pouch, just take the old one off and stick the new one on. 30 seconds.

I forgot to mention before. Get, what we call here "Nappy Bags". I suppose over the pond they would be called "Diaper Bags". They are small plastic bags for babies nappies/diapers. They usually come in boxes of a couple of hundred, and they're scented. they're very handy for disposing the pouch.
 
Diaper Disposal Bags....they sell them at the dollar store in boxes of 100. They are also very handy when scooping the litter box!!
 
yeah idk about the filter deal either, dan.
i have been using the Hollister new image 2 piece floating flange system. i looked online and there are pouches availible that have filters, im thinking about ordering a box to try. but the filter only comes on the larger ones- 12 inch or so and i am looking to cut down to the 9 or 7.
do you think those stick on filters would be a good replacement?
im not really wanting to change what system i use, i havent had any random leaks yet so id rather not change what is working

as far as changing the baseplate i am currently having an AWFUL time :(
my stoma is totally irregular shaped now, it has bumps so it is difficult to get a good snug cut because i have to squish it over the bumps. have made it bleed a couple times, still a tender little fella.
as if it needed to be more difficult, my incision, which is now an open wound hole, is about 2 inches away from my stoma itself. so ive been having to cut the egde of the adhesive so that it stops before it gets to the wound. it barely fits, the edge of the adhesive rides just along the edge of my wound. and i dont have anymore that i can cut off because then it gets too close to the stomahesive ring underneath and there is no support and it just pulls up. THEN i have poo leakage running out directly toward my open wound. great. i just changed the plate on saturday and it is already peeling up.
ugh but i dont know what else to do to seal it or keep it away from my wound. they are just so close together, i dont see any way around it.
any suggestions?
and nope im still not changing the bag daily. i dont really feel like theres much good in it yet, im still housebound, so i dont feel the need to waste the fresh pouches on just being home.

i know everyone says "noo no one can smell your bag" but seriously, i can. i think the smell comes from the seal- where the bag snaps onto the baseplate. i even told my mom to come as close as my head is to my bag and she said that she could smell it too.
what is up with that? i thought it was only supposed to smell when you emptied?

those nappy bags sound great. they are called diaper disposal bags here in the US?
i will definitly look for them.

in OTHER news:
i have to go back to my surgeon tommorow. my wound is hurting too much and im just worried about it. it seems like there is another pocket of infection that needs to be released. i have tried squeezing and putting pressure on it myself, but nothing more released. ugh kill me.
 
Last edited:
damn kello i'm sorry about the pain and all. wish i could help you with the supplys the stuff i had just basically glued itself to the skin, was all one piece
 
thanks mark :)

it actually feels a bit better today, yesterday i was sobbing from the pain that just getting out of bed caused, but today was much easier. go figure.
but im seeing the surgeon tommrow still, no point in cancelling it. he said he might wanna do a CT or MRI to make sure theres not another pocket of infection. to the left of my wound it is a little puffy and tender, but not pink at all, or warm, and no fevers still. so confusing!

and as far as the ostomy appliance issues, i had my mom look under the peeled up bit and she said that the stomahesive ring is still firmly stuck down, so im good for now at least. to be safe i squirted some stoma paste under there and taped down the edge as best as possible.

not looking forward to another 4 hours in the car tommorow.
but at least i dont have to be worried about stopping for bathrooms any more! that is the nicest thing about all of this, now i have complete warning before im gonna need a bathroom to empty my pouch :)
 
Wth regards to getting a snug fit, Kello.
That's why I use the protective ring (Slims) around the stoma. The rng forms the seal, so the baseplate doesn't have to have as close a fit. My stoma is slightly prolapsed, meaning it's very irregular in shape. I find the ring works really well.

Sorry to hear about the infection/wound problem. Hopefully it's only temporary and you'll start to enjoy the benifits of the pouch soon.
 
i have looked at the slims online and written down the product number, im trying to see if anyone distributes them here in the us. i dont wanna pay $985768 in shipping, you know? lol

but i really do like the idea of them. they look great.
 
Hey,

I'm not sure about slims (have never heard of them) but I like the eakin seal for the same purpose. There are also Coloplast and hollister "stoma strips" which serve essentially the same purpose. They allow you to place them around your stoma and make the seal tighter and better. I find them very helpful.

Erin
 
Hey kello,

Hope things are going better. I was curious so I went on the uoaa website discussion board and search (a) irregular stoma and (b) incision and it looks like there are quite a few people on there who have had your issues before. You might want to post over there if you are still having problems, they might be able to give you some tips.

Also...have you used this website to try to find a WOCN in your area. http://www.wocncenter.com/public/member_directory.cfm

Otherwise, I think that the supply companies themselves have ostomy nurses on staff who will talk to you and give you some advice on supplies and other issues. I know you're not sure if there are any near you, so that might be a solution.

Hope things are going well.

Oh...BTW, I remember you posted earlier about being concerned about clothes. I wore sweats for practically the first three weeks after surgery and any time I went out I would wear my old pants unbuttoned with a baggy shirt. However, I have found that pants that fit at the "waist" or "high waisted" pants about once size to big work really well and disguise the bag quite well. I even wear jeans with no problem (don't get any jeans that are TOO tight). I got all of my pants at Kohls but I'm sure that any department store would have them. :) Look at this as an opportunity to get a whole new bottom half wardrobe. :p
 
ok this post is gonna be the longest post in the history of the world, basically:

first off-

@kittee-thank you for the bounty of hugs :)

@erin-the eakin seals are EXACTLY what dan and i were talking about! even the brochure about them is identical to the one he dan linked me to lol! i just requested my free sample! thank you so much for that tid bit of info! im so excited that i can get them hah!
oh and thats a good idea to go look on the uoaa board, duh, lol i didnt even think of that. i have browsed around there quite a bit, but not registered or searched anything specific, i think i will.
hmm what is the WOCN? i mean i did look at the page, but is it any different than a home care agency? i am using the VNA(visiting nurse association) and they work with wounds and ostomy frequently. is the wocn specialized or something? and i also have found a medical supply store in my area and have been told that there is an ostomy nurse oon staff. im looking forward to talking to her to see if she has any specific ideas for me. i just have to muster up the strength to make the trip--not so easy atm.
lol and as far as clothes i have been living in sweats and t-shirts since surgery too! its easiest for now, i dont like the feeling of having anything remotely tight over top of my wound and stoma. so sore everywhere, i just dont wanna be touched. that is a good suggestion about pants too. i am DEFF going pants shopping. however, i just got some mini pouches today and they are TINY! i think i could still wear my low rise jeans and have the bag over the pants instead of under. i wear mostly long tanks and shirts anyways, so it would definitly cover. and in browsing uoaa ive read that some girls wear tighter tank tops underneath all tops (after stoma is healed of course) to kinda hold the pouch and everything in. would feel more secure that way i suppose. well, i dont know what will work yet, but i am really looking forward to shopping and trying stuff out :)
thanks for all your help, that was a lotta info right there!

allright now on to my update of today:
had an appt with the surgeon b/c my wound still feels wrong. i have this nagging feeling that there is another pus pocket that is stuck in there :(
well he took a look and JABBED at my sore for 298357 minutes. he said it *looked* fine to him, no signs of infection. but i had a blood test taken, a culture of the pus in the wound was taken, and then i also got a CT scan of my belly which would hopefully show if theres a collection of something else under the skin. he also put me on augmentin to just help take care of the infection. im a little nervous about this as antibiotics have sent me into a flare many times in the past. but now since my colon is not attached, he said that they would not be so harsh on me. it sounds reasonable to me, but im still nervous. i think i will eat a lot of yogurt....
well so ANYWAY, we get home and later we go to change my bandage and since the edge of my adhesive for my baseplate has been peeled up due to the wound being right there, i can see under it. well, tonight all i saw was a huge mess of yellow goo and turns out my stmomahesive ring had melted from getting wet i guess.
so, at 11 pm, we had to change my appliance. and as i mentioned before....i am a NIGHT POOPER!!
so it took over an hour cause we kept having to stop to catch the poo. and of course it didnt start till i was totally clean and had the skin prep on, and then stopped once my bag was snapped in place. grrr.
i have heard of the marshmellow thing, but i was afraid to try that now b.c i didnt want to get too bound up. my poo already is pretty formed. and also heard to stck a piece of rolled up gauze in there or something, but there was wayyy too much coming out for that!
any suggestons for what to do when you HAVE to change your bag when you stoma is active?
good news is that we squirted stoma paste along the edge that wants to lift b/c it is cut short due to the wound, and it seems to be laying on my skin better. hoping that it holds!

so that was today. we will hear from the surgeons office tommorow to see the results of the CT scan. also when i was changing my packing tonight i noticed that my bellybutton is like....pulled taut? and is very tender and firm to the touch. i didnt notice that before, pretty sure it wasnt like that yesterday. and the surgeon didnt notice either! pressed all over my belly and said everything felt nice and soft and didnt feel a collection anywhere. well, i guess he missed that spot :( will find out tommorow though if the CT was able to show it.

ok so couple more questions about stoma/ostomy:
-does anyone remember how after the surgery there was a kind of crevice-like crack between your stoma and the surface of your belly skin? inside this crack is SORE! but i have looked at pics of stomas online and they dont have the space, so what happend? does the skin heal up to meet with the base of your stoma? i dont like having the crevice there! but as long as it will go away as it heals then im fine!
-also noticed that my stoma is like, different colors. there is the darkish red red, like "beefy" red as the nurse described. and then there are some areas, more toward the base, that are whitish colored. whats that about? is that something that goes away over time too and it becomes all one uniform color? once again , the pics i looked at are just all the same beefy red color.
-also have mentioned the irregular shape of my stoma, the bumps around it. did anyone else have something like this as their stoma was healing? i mean i can imagine that the swelling does not reduce in a symmetrical manner, so will the bumps even out as it continues to heal?


hmm well, thats all i can think of for now. i feel like there was more, but when i remember ill come back.
in regards to the stoma questions, im just looking for feedback! i dont mean to be asking you guys to tell me if something is normal or not. i will talk to my surgeon about these questions, just everything has been so consumed by the infection now so the curious stoma questions arent getting asked. it is my own fault though of course!

thanks for reading people, you all deserve medals is you make it through in one piece ;)
 
Hiya Kello,
I was told that the stoma would reduce in size over a period of a few months. They said it takes that long to find it's permanent shape.
Unfortunately, mine has a small prolapsed now, so it's shape is more elliptical than circular.

My skin, directly around the stoma, was very tender for the first month or so, but it did heal. Now it just looks like it's welded to the stoma.

A quick tip for when your stoma is active and you want to change the baseplate. Stand over the toilet, slightly leaning forward. Any discharge falls into the toilet bowl, it also leaves your hands free to make sure everything is clean and applied properly. It can poop way into the bowl, and you don't have to worry.

I normally used a piece of toilet roll held just under the stoma when I'm shaving the area (What we men have to put up with... :) ), but then I move over the the toilet to complete he rest.

The colour of my stoma varies, some days it's dark red, other days it's light red.
 
Hey kello,

A WOCN is a wound and ostomy care nurse. They are specialized and work only with wounds and ostomies. (Did you see a nurse before your surgery you marked you for where your ostomy should go, because that was probably a WOCN). I found that though the VNA worked with ostomates, they were generally only knowledgable about the basics. Also, I'm not sure how it works for you, but my insurance only covered a limited period of VNA coverage. You want to have a WOCN for later who you can visit if you have issues once you are feeling better, if there is one at your specialty store, maybe that will be a good option.

Not sure about your questions about the stoma, but I know I read on the other sight I go to about a woman who's skin separated from her stoma such that she sort of had a wound all around the stoma. I think she had to work for awhile with a nurse before it healed. Is the "crevice" like a wound? If so you might want to talk to your nurses about it.

Erin
 
@dan- yeah leaning over the toilet is a good idea. dont know why i couldnt come up with that one on my own, lol! oh well, will remember for next time.
oof and i am not envious of you men dealing with this. either shave or face the awful ripping of tape off hair. OW.

@erin- allrighty, well i will look into the wocn thing on the site and see about who is in my area. very true what you say about the VNA, they do only know the basics. my nurse has had and currently has quite a few ostomy patients, but is not specialized. and yes there is someone like that at a medical supply store near me! she is an ostomy nurse who works in the store and has 20+ yrs of experience with this. i actually just spoke with her for the first time on friday and she sounds great. once i am able to get out a little easier i plan to go down and meet with her in person so she can get a look at everything. i think shes gonna be a real valuable person to have contact with.
and as far as the crevice- nope it is not like a wound. ive got one of those below my bellybutton and it aint nothin like that! it is just this little crack of shallow-ish space that runs all the way around.

i asked all of the questions that i posed in my last post to the woman i just mentioned above and she said it was all normal things that heal and change with time. even the whitish spots she said she sees all the time and they usually go away, but if they become crazy and out of control, then they should be checked out. but for now, im good it seems.

update for everything else:
my wound is feeling better i think. it hurts less and i think i can SEE the healing taking place. its like the bottom of the cavity is....flatter? i wouldnt say the whole thing is shallower yet, but the bottom is changing and healing up. still swollen around my bellybutton but hey, who knows.
also i have been stronger! going up/down stairs more often and i even sat outside for a while today! i have gained about 4 pounds since surgery day as well :)

some weird things going on though-- i have been running low grade fevers. between 98.9-99.5. these are real low compared to what a fever is usually for me (101+), but still, my temp has been 98.6 or below since surgery. also my appetite has been less the past 2 days. for the past couple weeks i have been hungry every couple of hours, but yesterday and today, im not really feeling it.
could it be that my body was so desperate for nutrition following surgery that it just wanted everything all the time, and now that its started to gain strength back the appetite is slowing? i have no idea really, this is just my attempt to make sense out of it. my body still needs the nutrition though. i have a LONG long way to go before i am even remotely healthy in terms of weight and muscle development again.
AND the colon has been producing bucketloads of mucous the past few days. well, not bucketloads, but more than before. just had one big spill into the toilet a short while ago. and yesterday morning i had a mucousy accident! bah :( made a mess all over the bathroom rug. i thought those days were over damnit.
 
Sorry to hear about the mucous Kello, It's not a problem I've had. I've only passed about 3 motions in the past 5 months. There is a small bit during the day, but it's not even worth mentioning.

My appetite came back fairly quick after surgery, but I'd had 4 weeks of Pred at that stage, so that could be the reason I was so hungry.
 
Kello.. i think a lot of what you're going through is teething problems.. the stoma will shrink over the next few weeks to it's 'normal' size, they are always swollen and misshapen to begin with. you'll probably find yourself cutting smaller holes in the appliance as times goes on, or order smaller precut ones. the crevice i suspect is also short-term post-surgery trauma to the area, but keep an eye on it, and as has been mentioned earlier, ensure a snug fit of either paste, adhesive rings or tape to keep it protected.

regarding stopping the stoma being so active when you're changing - this sometimes works..... take in a deep breath and hold it in, it should give you a few seconds of output respite, enough to quickly finish cleaning/drying and get the appliance on.
 
danman--maybe i mistyped up there--yeah my appetie came back quickly after surgery too! right away in fact, and i have been eating and eating since. but in the last few days i have been much less hungry now

ding--haha how does holding your breath make it stop pooing? hehe that seems so silly, but i believe you! ill try it next time!
 
kello82 said:
ding--haha how does holding your breath make it stop pooing? hehe that seems so silly, but i believe you! ill try it next time!
Click to expand...


i have no idea how it works :ylol2: but it does seem to lol
 
HAHA the funniest thing just happened in regards to this. i just changed my pouch, just the bag i mean (will explain why below) and all the sudden BAM shes alive. do i calmly hold my breath like you suggested? no i go HUUUUHH!! and start cursing at it. LOL i try :D

ok reason for change of pouch:
today i tried on a mini pouch that came in my free sample kit from hollister and it is awesome!! it is so little! it is a 7" lock and roll style so it even gets a little shorter when its rolled.
the thing is so tiny, it just hits the top of my jeans. my LOW RISE jeans i might add! very very discreet and much more appropriate for my tiny body lol.

i wore it for a good bit of the day today to see how it felt and see how full it is when i feel the need to empty or if i have to empty it before i feel the need to. it seemed to be ok, but im gonna wear it around again tommorow.
i feel like it should be fine, when im up and around, i empty when my 12" pouch is like, not even 1/4 full. maybe not even 1/5, idk how to judge it well. but the weight is enough at that point that i go and do it.

deff for sleeping though i have to go bigger.
after all, im i night pooper!
every morning i wake up with what feels like a small infant on me.
 
haha, every time i read "hollister," i automatically think of the icky clothing brand. so i have this image of you with a really "fashionable" ostomy bag.
 
haha me too!

i can proudly say ive never bought anything at hollister. the clothes place i mean. so damn expensive. and generic. you can guaruntee that in any given room you enter, there will be 2 people with the same shirt as you.
 
LOL!

cursing doesn't help... i've tried it in all kinds of situations.. altho it does make you feel a little better :D
 
haha i find it so funny cause my go to word is sh!t.

so what do i say when miss stoma starts pooing? sh!t!!!!
so technically, i guess i am just making an observation, not cursing :D
 
I do the same as when I'm changing everything, I lean over the toilet bowl. everything goes into the bowl, then I wait till it has a little rest, then I bang on the pouch. Like I said in an earlier post, I can change the pouch in as little as 30 seconds now.

Your new, smaller pouch seems great. Glad you got something that feels comfortable. As for emptying, Just do whatever feels right, if that means when it's 1/4 full, who cares. It's still only 4-5 times a day, and it's at YOUR conveniance.
 
lol dan i actually did remember your advice!
after it started coming out i leaned over the toilet bowl as i got the other pouch ready. of course it was done pooing and nothing more came out. go figure.

yup, i am slowly learning to do what feels right for me. idk why that is such a weird thing to figure out you know? i guess just cause it is new and you feel like "ohh the stoma nurse/doc/this person knows more than me so i should do exactly what she says."
well no but she isnt me.

just takes time i guess.
 
kello82 said:
and you feel like "ohh the stoma nurse/doc/this person knows more than me so i should do exactly what she says."
well no but she isnt me.
Click to expand...

i'm nodded in complete agreement when i read that bit, Kello. my original stoma nurse from years ago a) didn't have a stoma, and b) didn't have a blinking clue what it was like to live with one. all she could do was advise like a textbook, and here are a couple of examples of her advice...

you have to have your bathroom refitted with some weird contraptions she deemed essential..

you have to empty your appliance down the toilet by kneeling on the floor & straddling the toilet. okaaaayyy... first of all, as i'm not double-jointed, i can't straddle a toilet whilst kneeling, secondly if she thinks i'm gonna kneel on public toilet floors she has another think coming lol

and - you cannot possibly change an appliance without a mirror, and various other bits of equipment.

duh!

needless to say, i found me another stoma nurse :D
 
lol ding what kind of weird contraptions? and straddle a toilet while kneeling what??
haha i got the "kneel on the floor" advice too. i might do that at home, thats fine but definitly not in a public place! those floors probably have many nasty things on them.
and yup a mirror is a must, i learned that one fast.

today was applaince change day and i had been using convatec stomahesive strips underneath the flange (why? cause the nurse told me to.... lol) and after 2 incidents of them melting, turning black (still at a loss on that one) and dripping out the bottom of my baseplate--they suck and i did not use one this time.
i DID get a sample of the eakin seals (cohesive slims for u dan) and they look great, but i decided to try with just paste once. having something raised under the base makes it want to peel up more, but only because i have to cut away so much adhesive to make room for my wound. does that make sense? if the wound were not in the way then i feel like the plate would have no problem staying down with the eakin seal under it.

i think part of the problem is also the adhesive getting wet. when i get in the shower, sometimes the edges do start to curl up and a little water gets under. so then i started clipping a shower cap over my bag and taping all around the base with silk tape and it seems to help a bit, but still the adhesive gets wet and i feel thats what may have caused such a meltdown with the stomahesive strips.
i have been drying with a hairdryer too.

i know you guys said you mostly dont have issues with getting wet, but any suggestions? it may even be resolved now that i stopped using the strips, but we'll see
 
I don't touch the tape when I have a shower. I then, only pad it dry with a towel.

I was worried too about the slims making the base sit up too high, but they are very sticky and after a few hours, they actually melt into shape.
 
i can't remember the contraptions exactly Kello.. something along the lines of grab rails & hose attachments & god knows what else...

Dan, still got it - reversal was offered many years ago but i declined as i'd had enough of surgeries (6). it's not an option any more, so i'm kinda stuck with it, or rather it's stuck with me lol
 
I didn't realise that, all this time I've been on here.

I'm on the look out for someone to explain the reversal process to me. My surgeon asked me if I wanted it last month, but I'm happy as I am. But I'd still like to know for future reference.
 
Hi Danman

I had mine reversed after 12 weeks, it was an emergency one. Really simple operation (relative to the others that I've had). My bowels were moving again within a few days. And I was eating very soon after. I would think it would take a little longer to regain full function if you've had it for longer but obviously it's possible if your doctor is offering it.
 
Hey Danman,

This section of another discussion board is all about ileostomy reversals. http://www.uoaa.org/forum/viewforum.php?f=25&sid=fe2de8a243bdf479d6081ee9911689e5 My understanding of the whole thing is that its relatively simply but takes a bit to recover from because your bowel is like...whaaaaaaaaaaaaat??? This isn't what i'm used toooo....At least, that's how my bowel talks. ;)

Kello, on the showering issue, I've seen some people suggest taping a ziplock bag around the tape to try to keep it dry. For waterproof tapes I suggest Hy-Tape Pink Tape (you can get it from the ostomy supply company) or Nex-Care waterproof tape (which you can get at CVS or any drug store).

I have now switched over to a HOllister floating flange two piece number (I've had some issues finding a good fit for myself) and I've been doing the whole towel dry and then blow-dry for a bit thing. It seems to help, though after about two days the tape collar does come loose and then I tape it down.

The whole wierd stomahesive thing may just be that it doesn't meld with your skin well (is that the coloplast strips?) I have to say that I love the eakin seals and Hollister also makes "Adapt seal rings" which are Hollister's version of the eakin seals. So if one doesn't work for you another might because they are all slightly different.

However...I think the conventional wisdom is that you should use as little stuff underneath the wafer as you can...so if it sticks on without the seals then you should just go without the seals. For me, I got tons of leaks before I started using the eakin seals, so its somewhat necessary for me. I also really like the ostomy belt for the same reason, though you probably can't wear one now because of the wound on your belly!

Hope you are starting to feel better though and your wound is healing up well.

Erin
 
dan--ive found some websites online that are peoples own pages documenting their surgeries. i only kinda skimmed them, so if its not totally pertinent, sorry!
-this is one of a guy with UC who did the ostomy and now has a j pouch
http://www.jpouch.net/photos/surgery-1/
-and this is another--not sure what his final bowel situation is, but he did do an ostomy reversal.
http://www.beardmorebros.co.uk/website pages/uc.htm
found them while searching around for stoma photos when i was worried about the shape and color of mine and thought they were interesting. glad i bookmarked them!

erin- nope, unfortunately cant wear a belt with the wound. i got one of the ones that clips onto the bag to help distribute the weight when it gets full...is that what you call the ostomy belt? i know theres the other belts too, the hernia belts. im lookin into those too, but no rush as i couldnt wear that either.

and as far as fit/leaks/seals etc, the system i use seems to be just fine! seems to have a good fit and no leaks yet or anything. the ONLY problem is the proximity to the wound and that is the cause of the difficulties
without the stomahesive strip it seems much better though. feels a lot more stuck down. those things are a way different material than the eakin seals i think, almost....waxy? they really did not melt into shape at all like it sounds like the eakins would. they stay as this thick ring. nope not for me.

and as far as the shower i dont really know why it has a problem. i dont touch it at all and it just starts to lift off and the water dribbles under. maybe it was needing a change anyways...im not sure.
but my mom picked up some waterproof tape, so ill see how that works for now

my wound is actually looking pretty good. its gotten way wider than it started out and the whole incision opened up on its own over time (it was only the top 2/3 or so to start) but the bottom is starting to rise up and there is no more yellowish greenish skin. all pink and healthy looking. and also i had some pretty bad tunneling going off in all different directions and those have pretty much filled in, leaving me with just an even hole.
and less pain FINALLY. i can walk not hunched over yayy!
 
Last edited:
hahaha ladyb thanks for your yippee!! it made laugh. and put the image of the hunchback of notre dame in my head lol!!

E Cam- whoaa that is a good point that not being straight when applying the baseplate makes it wrinkeld. i just looked at it to see and its not too bad, but youre right, it could be a little flatter. will definitly try that. lol fun fact! haha that made me laugh. thats what ive heard though, that the heat makes it stick BETTER thats why i was like wth?! when it peeled up instead.
i used waterproof tape in my shower yesterday and it worked really well and was real simple to peel off, not like other tapes that are like peeling off second skin. i might just stick with that for a while.... but really, it shouldnt need it in the first place in my opinion.

there is a huge long thread about showering and bathing on the uoaa board and it is just about split 50/50 of people who have no problms with water vs people who do. im wondering if these two things can be factors in why some people have problems with getting wet and others dont:
-skin type? you know maybe some peoples skin is different, drier, oiler, etc and maybe that explains why it causes problems for some people and not others.
-also, my stomach is still wayyyy distended from being so thin. i looked in the mirror sideways yesterday and i almost look preggers jeez! that will go away as i gain weight, but im wondering if the fact that the appliance is on the.....highest point of my stomach, is a way to explain it i guess.....that gravity really pulls on it and its really exposed.
does that make any sense at all?? hmm.

well since ive stopped using the dumb stomahesive strips ive had a much much much better stick.its already been 4 ddays and feels just as good as the day i changed. also havent gotten it wet though so hmm.

and the wound is looking SOO GOOD! i am freakin amazed right now. everytime i change the bandage it is totally different. at this rate, i feel like itll be closed by the time i see my surgeon in a week!
 
Glad to hear things are looking much better!!

It's amazing what excites us crohnnies after a while....the power being turned back on so you can flush without the help of a bucket.....not having to go to the bathroom right after you eat....soft toilet paper....someone else changing the roll....

I could go on forever, but I'll contain myself...lol
 
whew im back!
for some reason my computer or internet wouldnt let me get on here for the past few days and i was SO bored and lonely.....

well atm my stoma is being...uhm...weird. it hurts, might be a little blocked, but not totally cause some poo is coming out... a little bit at a time. this has only been for like the past hour or so.
it just comes in waves of like, intense pressure in the stoma and around it and then backs off as a little blob of stool comes out. i ripped the cloth cover off my pouch so i could see whats goin on.
im drinking as much hot water as i can right now....hopefully it will get down there fast. my tummys pretty empty so it should i would think.

other suggestions/advice?
i know that this does happen from time to time right? i shouldnt be worried till i either stop pooing alltogether, start throwing up, or in a LOT of pain?
 
it may have just been something that has gotten blocked up a little. Not sure if there is anything you can take, maybe the food just wasn't completly digested when it started going through your system.
 
yeah. idk what it could be though, im still being slow with the foods. ill think about it and definitly eat gently for a while.

its feeling a little better. not good, but the pressure is less frequent.
i drank 94385209 gallons of water.
we'll see.
 
Hey Kello,

I've had this cramping, pain thing before, the suggestion i've had is to massage around the stoma as much as you can to try to dislodge whatever might be stuck in there. Also, lots of fluids (which it sounds liek you did) though my nurse suggested warm water.

Erin
 
hmm ok thanks erin. ill try the massaging idea.
mhmm and i did drink warm water. though it got cold fast lol, but each cup started out warm!

well the sharp pain is gone, but there is still weird pressure that builds up. and my consistency is being very weird. i will fill the bag with kind of thick stool, then the next fill will be totally liquid. why cant it find the happy medium?
now the area around my stoma is extra sore though, the bit between it and the skin that is healing. the pressure was putting more pain in that area yesterday. now it is just residual soreness i guess?
agh i dont know!

definitly gentle with food for a while now though. had a dinner of baked chicken and mashed potatoes. will stick with that for a few days.

i guess will just keep downing the water.
 
thanks e cam.
haha i have been avoiding the PB and other brat diet foods like the plauge. but cheese...hmmm. i have been having lots of noodles with parm cheese lately. maybe ill back off...

no nausea or anything, still having output, and still hungry....but still feeling pressure.

my nxt appt is actually scheduled for tmr, so ill ask about it and get him to look at my stoma.
he hasnt seen it since the day he put it there! lol, probably about time.
 
i missed your post about the output trouble until just now, Kello, sorry :(

it does sound to me also like you've had a little blockage, or backing up of poo going on. the stomach wall where the opening for the stoma is, is still strong muscle and it won't let anything very solid or compacted pass through without letting you know! drinking hot boiled water is exactly the thing i would recommend (it's worked for me many times). the other thing i'd do if i suspected a blockage is to keep off solid food altogether for a few hours at least, and just go onto liquids, soups etc..

the alternating very solid then very liquidy output could well be an indication that the stoma is struggling to push something through.. the body automatically produces more liquid in the bowel when there's something stuck there to try to flush it away (exactly like the overflow with severe constipation). for this reason, keep an eye on your hydration.. maybe one sachet of rehydration mixture at the moment might be a good idea.

you mentioned you've been having cheese.. is this melted cheese by any chance? i remember for the first year or so after my surgery, if i had melted cheese like on a pizza or a sub-melt, i would get blocked. i can eat it now tho.

i hope it settles soon - i'm glad you're seeing the doctor tomorrow, hopefully he'll put your mind at rest.
 
kello82 said:
thanks e cam.
haha i have been avoiding the PB and other brat diet foods like the plauge. but cheese...hmmm. i have been having lots of noodles with parm cheese lately. maybe ill back off...

no nausea or anything, still having output, and still hungry....but still feeling pressure.

my nxt appt is actually scheduled for tmr, so ill ask about it and get him to look at my stoma.
he hasnt seen it since the day he put it there! lol, probably about time.
Click to expand...
Yeah... If the doctor felt like ripping you a new asshole, the least he can do is make it work properly... :eek2:

Dan
 
ding---i did try the hot water like you suggested earlier, but havent drank anymore since the *pain* subsided. but as im still dealing with pressure and alternating output, probably would be a good idea. and the cheese, its been parmesan cheese on pasta, like the little sprinkly kind you know? so its not really too melty and stringy, but perhaps it gets all stuck together while the body is processing it.

HOWEVER, i did remember 2 events that could have a role in this:
1) i had tater tots the night before it started. i thought itd be fine cause its just cooked potatoes you know? but hash browns have caused a couple little potato pieces in my pouch before, and the two foods are similar. i guess a few of them could be clumped together in there.
2) i changed my appliance the day before it started as well. my stoma had been 1 1/4 but was smaller this time, 1 1/8. i cut that and then had to make it a hair larger. but is it possible i made the baseplate just a little too tight? i mean, i feel like i seriously doubt this cause it fit reasonably well over my stoma considering its bumps and all, and the stoma paste had enough room to squish through from underneath the plate to above it. i wouldve noticed if it was tight, ESPECIALLY tight enough to constrict my stoma! however, i cant ignore the coincidence entirely.....

danM---haha lol. technically, its not an ass hole, it aint on your ass! abdohole?
 
That's a good point about the size of the hole you've cut in the baseplate.
I cut 48mm (about 2 inches in old fashioned measurements ;) ) and I've stayed this size since my operation.

But my stoma has gotten smaller in itself, but has gotten bigger over all because of the prolapse.

That is very clever thinking, I'm glad now I've stayed this size.


Thanks all for the info on reversals. I haven't had time to look into them yet, but I will soon.
 
**NOT A CHEERFUL KELLO POST**

ok seriously, WHAT THE EFF?!?!
it is just a never ending HELL that i am in.

this morning i woke up with my wound stinging b/c an internal stitch was pulling, so i decided to just swap out the gauze real quick to take off the pressure. yeah well i got the tape off and there is CRAP in my wound. my baseplate had peeled up just a little and all the poo went directly in the wound. great so all this at 10:30 AM, when i need to be in the city at 12 for another follow up with the surgeon. so, we changed my appliance and cleaned it all up, aware of the fact that surgeon was most likely gonna take it all off in 2 hours in order to see the stoma.

so we get there and he uncovers the wound, RIPS the loose stitch thats been bothering me out of it with just his fingers. yeah thanks and FU too. after i told him about the soreness in the crack around my stoma he wanted to take a look (and i wanted him to too, even though it meant ripping off the appliance today for the second time). he tore it off with no adhesive dissolver, warm water, nope nothing. just ripped that shit off of my raw sore around the stoma. okay so heres the good part i have 3 MORE EFFING COMPLICATIONS from this surgery from hell.

1) the crevice around the stoma in not normal at all. of course dont forget the fact that i have been asking nurses about it since my very first pouch change at home and had the VN and a stoma nurse tell me that it was fine and totally normal. i guess its time for a new nurse. anyways he stuck those giant qtips that i adore so much in there and dug all around making me bleed all over. great. apparently the stoma is just not healing properly to the surface skin properly and now is considered a wound. were goin 2 for 2 here with shit healing of surgical openings...

2) in all this stabbing he discovered that i have a...get ready for this.... FISTULA coming out of my stoma. and it exits right at the base of the stoma INSIDE of the damn crevice. great. i have a wound with a poo tract emptying directly into it. well i guess it was a good thing he dug around like that. probably wouldnt have found it otherwise. there is no way to take care of this except to make sure that it doesnt leak under the baseplate and onto my skin.

3) as if i needed something else, i have a yeast infection on my skin all under and around the tapes for the wound and my appliance. it didnt seem like anything to me, just a few tiny red bumps and some redish skin when i rip tape off. didnt seem abnormal to me, but whatever. its from being on the augmentin for the wound infection.

in all of this i was squeezing my moms hand so hard that i left marks on it and if someone had been at the foot of the table they wouldve gotten knocked out from my legs flailing in pain. oh and i yelled swears at him too. that was a first.

ssoooo. then he slapped a bag on me (oh btw he pitched the brand new bag i had just put on this morning while i was sobbing in pain and had no idea he was doing so. was my last 9 inch one.) and rushed me down to see the ostomy specialist. she was nice though, and much gentler. she put that silver nitrate stuff around the crevice to start the healng? idk really. and then showed us how to do all this special stuff to fit the applince right to allow proper treatment of the incsion wound, crevice wound, fistula, and yeast fungus thing. now theres only about 932842 more steps that i have to do when i change my pouch.
and now my belly feels like its been through a fire as ive had an appliance torn off 3 different times in one day.

and if it doesnt start to heal then i have to have the effing surgery all over again.

kill me.
 
Last edited:
Awww Kello - what a sucky day. Well - maybe these new steps to change your stuff will help, and get you all healed up. You haven't seen an ostomy nurse yet is that right? So maybe it will be better starting tomorrow. Good luck girl, let us know how you feel tomorrow.
 
*HUG* X 1000000000

I wish there was more that we could do for you. We all wish you the best and a speedy recovery!

Keep us posted.
 
thanks all for the love.

mbh, yeah ive seen that ostomy nurse twice, so she knows my case, but she is at the hospy in the city so i dont really have anyone who is my ostomy nurse here. im gonna looke up the wocn agency i think.
she was really confident and didnt even have to think about what to do, so i know i need someone like her in my area at this point.
 
ok i just had to post and say that i am calmed down now.
i apologize for that crazy outburst post. you guys know it takes a LOT to get me on a depressed type of rampage like that.
im just so sick of being so....weird you know?

in the car ride home i was like "mom, i dont get it. how is it even possible that i always prevail at being the WEIRD case that confuses every doctor?"

i mean its not like theres no hope for me, but just nothing ive ever had done in regards to my crohns has gone smoothly. theres always been a problem or not effective or something! and i make the docs go "hmmm..." like he did today as he poked around. and i dont want to be that type of patient anymore, you know?

whew. well anyways, i didnt want pple who read this tmr or whatever to think that i was still raging around. ive accepted the mess now, and actually feel a lot better cause now i have an explanation for the pain and everything and know that im working towards fixing it.
and i also dont feel as wimpy for still being on painkillers 4 weeks after surg. helllooo i have 940482 things wrong with my abdomen right now. its probably acceptable.

ok. thanks guys :)



ok and ostomy question # 512:
i have not had ANY ouput yet today. however, i did not eat anything whatsoever until 5 pm. (last bite before that was 12 am).
and now its 1:45 am. no pain, no nausea/vomiting, no lack of appetite. just a little pressure behind the stoma and a full-ish feeling in my bowel.
ummm so does this happen? i probably will wake up with my pouch weighing 10 pounds, but idk, i hate when my output is being weird, and i feel better to ask here.
 
Last edited:
Hey Kello,

So I was going to link you to a couple of people at the UOAA board who had the same issue...but then I saw that you had already been over there and posted and they had responded. :) I am so sorry to hear about your problems.

I only have a comment on what is arguably the least of your problems -- the yeast infection. I've had serious yeast infection problems, don't let them get away from you. You should keep it as dry as you can and perhaps your doctor should put you on some diflucan (oral treatment for yeast infections).

In terms of the wound itself, I had a lingering wound by my stoma and I know how much of a pain it can be. The silver nitrate is a good first step. Then I used a layer of a product called "aquacell" that was supposed to absorb blood from the wound and then a layer of "duoderm" which was supposed to mimic skin for the appliance to stick to. To be honest, I never got more then a couple of days of wear time during that time.

On the fistula front...I have no experience with that (well, obviously other then the whole pre-surgery thing). Boo fistulas...that's my input. :p

Good luck with everything and I hope you see dramatic improvement soon.
 
lol yeah i was on the uoaa a bit. i didnt really like it there to be honest....i felt this vibe of "im sicker than you" around it. idk, it just bothered me. i like it here :)

good to know about the diflucan, im also on the nystatin powder that i put on everytime i change my wound dressing and will apply when i change my appliance as well.

for the wound around the stoma she has me filling it with stoma powder, then a layer of paste on top to protect it from the skin barriers and everything. dont really know how it makes it heal, but i trust her and am just gonna do what she says. she was very confident and didnt even flinch when she saw the problems, just knew exactly what products to use and methods and everything.

and yes. booo fistulas. i hate them, the little shits have already taken over my other butthole, i am NOT letting them get this one too! NO WAY

thanks for your input erin
 
Hey Kello. Sorry about everything you've been going through. I didn't even realize. But you're right...it seems that there's always some kind of complication going on in your case, and its just not fair. I'm sick of it for you. Lemme know if I can do anything for you. <3
 
Damn kello sorry to hear that you have had that much trouble. I wish you had doctors like mine, they are great. none of that ripping stuff off you, i can't believe that you have a fistula at the stoma thats some bull there. Hopefully the ostomy nurse will get you healed up with the new stuff she put on.
 
aw Kello :( so sorry about all this :(

i've absolutely no experience with fistulas, so i can't even begin to imagine what it feels like, let alone offer any advice. all i can say really is it's a good thing you've seen the doctor now, and people know what's wrong, so can get you on the track to healing.

i'm mad that he hurt you - i'm sure he could've done it all a lot gentler if he'd wanted to!

i think the key to all the stuff the stoma nurse has you using, is that it will all act as a barrier between the poo and your skin, plus the silver is very well known for its' healing properties.

jeez girl, i really hope your body will start healing now with the help of all this stuff, and that there'll be no more talk of further surgery.

thinking of you Kello. ((hugs))
 

Similar threads

Anna's Bandit
Colorectal Surgeon
Replies
4
Views
1K
Anna's Bandit
Anna's Bandit
D
My IBD history
Replies
1
Views
338
valleysangel92
valleysangel92
P
How long on EEN before your child had solid motions again
Replies
5
Views
654
padrach3
P
A
Am I crazy?
Replies
1
Views
894
Opieshuffle13
O
Papantoine
Punching Crohn’s in the balls!
Replies
6
Views
265
Papantoine
Papantoine

Latest posts

Back
Top