Surgery Time

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hahahahh!!! ahh lmao :D
wolf tee tucked into american themed panties. now thats an image.

thanks for the thoughts danman! good vibes recieved :)

haha erin, ive never watched buffy actually! but ive seen commercials for that hulu thing and theyre funny lol, i might look into that. would be nice to have a tv show marathon. good way to spend a day!

yep fen, i was in good spirits yesterday. and today. its a record! haha. hmm yeah i guess you can see the daily improvents in the sugery wound. really tiny changesthough, almost hard to notice. but then if you look at the course of a week, the change is pretty visible. its kinda amazing how the tissue just slowly builds itself and is filling in the hole.
that is gonna be one weird scar though....a big pink spot lol. it was only supposed to be a little line!
 
Kello - So will that midline incision (that now looks like a crater) eventually fill in on its own, or will they have to close it up somehow?
 
thanks kim :) replied to your post in your pg thread!

fen-lol thats a good idea! might be kinda cool, then i can make a flipbook!!! yea!
haha sometimes its hard to capture it when its not pooing though, often its a rush to get the pouch back on before the lil sucker erupts. im getting better at timing it though.

hey kromom- yep the crater will fill in on its own. everyday a thin layer of new healthy tissue forms in the bottom of the wound bed, so thin that the growth almost isnt visible, but its there. eventually it will layer enough to level with the rest of my tummy skin and there will be no more hole!

ive kinda been wondering though.....whats to stop it from still putting down new tissue, even after its level where it should be? like how does it know to stop at the proper level to be even with the rest of my stomach and not just keep piling up? does it just know?? thatd be pretty amazing....
just wondering aloud
 
HOLY CRAP kelly thats just insane that has happened to you, i can't imagine that. I thought it was bad when i had my surgery and they left the wound open to heal better. But wow i wish there was something i could do to help you out or make you feel better. If i had your address i would send you a big hugable bear since you said you didn't have one. But HERE IS A BIG HUG!!!!!!!!!!!
 
aw mark, i would love a big huggable bear from you!
(pmed you my address, send flowers, diamonds, and a flat panel tv too, ok?)
hahaha jkkk
just offerin the love is something to make me feel better :D

youre talking about after your reversal surgery right? what is it called btw, reversal or take down? but anways, ive read a bit about it and learned that they leave the stoma site open to heal. i was not happy to hear that at all....i guess that will be a smaller wound than my mid-line one though...
gah im gonna be covered in pink spots all over my belly
 
Hey, chicks dig scars...if that's your thing. Otherwise...I'm sure guy's will dig them as well. :p It imputes wisdom or something.

Good luck with healing. I actually didn't know about the whole reversal, left to fill in on its own thing...hmm, that'll be icky.
 
Yeah it was my reversal ostomy surgery, and the funny thing was i was going to the beach the week after my surgery and he just said keep sand out of it and you can go i the water if you want the salt water will actually help it heal.... Who would have thunk it?
 
uh erin, chicks arent my thing? so i HOPE guys dig scars!!

mmm thanks kim :) i found your other post too he he!

haha mark, keep the sand out of it! idk why that made me laugh....but it kinda did. yeah ive heard that salt water is good for open sores. but doesnt it hurt?? ow. glad you got to go and enjoy it though and not worry too much. except for the sand. damn sand. hah

butt- will do! maybe ill even put the diamond necklace ON the bear and have him holding the flowers ok? tv in the background? yeah. i think so :D


well i have an appt in the city today, leaving in about an hour. seeing a special dermatologist guy to look at the PPG. i dont wanna gooooo
i hope theres no torture involved.
be back later today
 
good luck with the appointment Kel, sorry i've not been around much to post in here.. have been crazy busy lately but i have been quickly logging in and following your progress tho. ouch, your tummy looks sore! aw you poor thing. it will heal up ok tho, i also had one of those crater type delights after my surgery.. and now its just flat skin-coloured scarring.
 
amazingly it didn't hurt, i just kept the gauze and tape on it, i was worried it would hurt but it didn't. just kept my shirt on and the gauze and tape, changed it after i went swimming.
 
hey ding! ive been wondering about you, glad youre busy and active though. thanks for the reassurance re the crater. lovely craters they are lol.

huh, thats good to know that it doesnt hurt mark. im hoping to get up to cape cod *soon*, my grandparents have a house near the and i was wondering if id be able to go in. wel i mean i knew i cOULD, but i wondered if i would want to.


ok so update from today:
the dermatologist doesnt think that the wound around the stoma is a PPG. he thinks its jsut a peristomal ulcer. so at this point i feel lost b/c the surgeon dx it as one thing and the derm dx it as the other. i guess i should believe the derm over my surgeon cause he knows more about skin conditions, but i really dont know!
they gave me another set of local steoid shots today, and ill be getting them at regular intervals, every 3 or 4 wks or so. and i decided to measure the wound before i put on the new appliance today. that way if it keeps spreading, ill know for sure to force them to figure it out.
all in all, its really good news if its not PPG, the ulcers are easier and less scary to deal with. but it bothers me that i have different dx's and i get the feeling that like, no one knows what the frik theyre talking about. WHY in hell didnt anyone catch this before it got this bad? i was seeing 2 different nurses. no one ever recognized it as an ulcer. they didnt recognize it as anything.
im annoyed.
 
thing is though...my gi was the one who SENT me to the derm.
i called him last week to discuss starting immunosuppressants to help control it and he said that he wanted the derm to be the one to evaluate it.
argh!

maybe i should just force him to look at it anyways?
 
hmmm.
im really glad youre saying all this, cause i had that *feeling* yesterday that they just werent listening to me and were all like "well its not ppg because because because" but really i never felt satisfied. but felt that i should believe them cause theyre skin "experts". good to know that that doesnt necessarily mean they know best.
they knew enough to NOT take a biopsy though. the resident mentioned it and i said NO you are not doing that, and then the doc came in and said he didnt want to either.
ill talk to my parents about it and talk to the GI.

as far as wound care, the ET nurse has me packing it with sorbsan and stoma powder, then covering with a skin barrier, then the flange goes on top of that. and i change every two days so that i can rinse it out with warm water and soap.
however, idk if im totally satisfied with her either as she never recognized the problem either and shes been seeing me all the time....
all these people not being on top of everything, how do i find a doctor that WILL be?!
 
Hi Kello, any update on the PG status? I saw the photos you posted, and wow - you are doing so well in handling all this. It sounds like you have a good support system with your parents, which is great.
 
hey!
nah not really much new happening. the gi called friday and told me of his convo with the derm. the derm told me to come back in 4 wks for more injections, but the gi wants me to get more next week. so i have to call on monday and bump it up. thats about all.
girlfriday--it may or may not be PPG. the derm thought it was just a peristomal ulcer....so were kind of in that unsure stage right now. just watching it carefully. measuring it and taking pics every other day so we can track its progress, if its getting worse or better.

yes my parents are awesome. i dont know what id do if i had to do all this on my own. they keep on top of me, id like to say im perfect at making sure i take care of myself but we all know that aint the truth lol.
their prodding helps....annoying as it is. i wouldnt have it any othe way :)
 
That's great to hear about your parents Kello. I am married now, but my Mum is still supportive, my Dad however just frowns and looks angry if I am ever feeling unwell. Other people tell me it's just because he is so worried about me, but still..
Fingers crossed it is not PPG!
 
now im 90% sure that this is ppg.
yesterday when i took the pouch of i noticed three tiny holes just around the border. they look like little pin holes.
one of the derm's reasoning for saying that its NOT ppg was that there werent holes around the border. "its just an ulcer"
uhhhhh......

now there are holes.
i guess ill be calling him tommorow......
 
haven't caught up on you in a while.

what's ppg? i'm ignorant not having had surgery.

you feeling ok these days?
 
PPG stands for peristomal pyoderma gangrenosum, its a skin problem where your skin dies around the stoma and a big open wound forms as the border keeps dying off.
have you seen kims thread about mike? he has PG on his legs. its the same type of thing, except mine was caused by the presence of my stoma. theyre not really sure why this happens, but it happens to some with crohns and UC who have active disease and have a stoma formed. they know that the stoma is the trigger because when people have had their ostomies reversed and stoma closed, the ppg goes away.
i put pics of it a couple pages back. its gross. and hurts.
does that explain it? lol its hard to explain, theres not too much info about it.

as far as how im feeling, not much has changed recently. it hasnt been growing rapidly, but it does kinda look like its getting bigger. its hard to say though. the pain level isnt letting up either, im still taking 40-50 mg percocet each day and thats bothering me, i wanna get off the stuff but i know i need it.
the midline wound is looking good though. slowly getting shallower and shallower. ill be so happy when i dont have to dress that one anymore!
and the crohns in general, well ive been way less hungry lately. i think i slipped back on my weight a little bit, now 93 lb. my tummyhurts and is crampy a lot, but the obstruction feeling in my stoma is way better. mouth and butt sores seem to flare up and down every week or so.

ummm thats about it? that was quite an update :)
 
PPG doesn't sound good...i hope you get through it. i remember your photos of your wound. i hope it's getting better.

i took percocets for sleep apnea surgery a year and a half ago. that stuff is STRONG! not to digress, but one day, i had to leave the house as i was feeling cooped. wandering nyc in a haze of percocet wooziness is a bit surreal. i felt nyc was passing by in slow motion. very strange.

anyways, keep your spirits up. you're handling all of this quite awesomely, i must say.
 
kim :)

thanks fen!
the percocet right from the get go didnt really seem to affect me very much actually. i started taking it the week prior to surgery because i was so sick and in so much pain and it really didnt get me much relief. i usually felt as if i didnt even take anything. i finally realized that taking it on a severely empty tummy was the only way to get it to kick in.
then after surg i was on double what i was before, and it works a little better, but still doesnt make me so woozy or anything. it takes an hour, and then i slowly relax and feel the pain dissapate a bit, i feel talkative because im not strained like i am the rest of the time, and sometimes it makes me all sleepy.
i still definitly would not drive with it though. but the world goes by in regular motion for me :) lol
do people just react to pain meds differently? i guess that would make sense. we all react to other meds differently.
 
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we all react differently....percocets and vicodin knock me out. i feel like i'm in a drug-induced fog and am very relaxed and sleepy. i can see how some overdose on them.

just be careful when you wean off. make sure you cut back slowly like prednisone. i took them for two weeks following my surgery last year and stopped taking them too abruptly and had classic withdrawal symptoms. you don't need to taper too slowly, just make sure you don't stop immediately.
 
Hah to the talkative thing. When I take vicodin (what I'm on) I don't have many side effects, but it does help the pain and then I get totally hyper and talkative. I'll be standing there in the kitchen babbling at my boyfriend and he looks at me like I have two heads...and then I say, oh I took some pain medicine and then he understands. Its funny because IV pain meds have the opposite effect and just help me sleep and make me mellow. Who knows...
 
hey mike, thanks for the thoughts :)
ive been thinking about the HBO stuff a lot...wondering how it works with an ostomy. can it withstand the pressure change and all? idk, but from your experience it sounds like its at least something. im still hoping that these steroid shots will take care of it first. at this point they are still back and forth as to whether its PG or not. i see him tommorow, well today i mean, for more shots. hopefully a definitive dx will happen.
why cant you go in with an infected wound, what does it do?
 
oh ok. good to know kim.

well, might not be an issue anyways. as of yesterday the derm still thinks that it is just a peristomal ulcer and that weekly local roid injections will heal it. he said they are know to take their sweet time though. hmm.
he did give us credit however that there are many similarities between a pyoderma and an ulcer in that area, making it very hard to differentiate, even for docs.
he showed me a pic of some PPG and it was very different from my belly. looked like lacey swiss cheese, for real. poor person :( mine isnt like that at all, just some pics labeled as PPG online DO look like my belly.
*sigh*
we'll see.
but for now i believe him and am watching this crap carefully as hell. i take a photo of it EVERY time i change my appliance and write down percise measuremnts of the wound bed, location of pin holes, etc.
i am NOT letting this one get the best of me. im tired of being blind sighted by stuff.

thank you all so much for you support.
kim and mike especially. you guys are amazingly strong people. i keep thinking of you two. i wish i could do something....

<3 everybody
 
kellopic.jpg


Kello, I didn't know where to put this so that you'd see it, but you'd probably see it anywhere anyway. I tried to make it at least a little bigger for you, but I might have distorted it a little in the process. =/ Also I would have made a nice little border for it, only I don't know how to do that in GimpShop. It's like the ghetto Photoshop. :(

Keep on truckin' though Kello. I know that this one won't get the best of you!
 
aw thanks hun :)

ok so i just saved that and then loaded it as my avatar and it still came out tiny! see thats what the weird thing is....no matter what size pic i load, it always ends up little.
hmmm.
hah when it was next to the other one, you can see it is a little distorted, only cause it was in comparision to the next
hehee my face is looooooong right there. i kind of like it though....normally i have a round face. *sigh* what i would give for heidi klum cheekbones right?!

thanks for trying! im not good at compy stuff so i really have almost no clue how to even attempt to fix things.

"youd probably see it anywhere anyway"
HAH that made me laugh :D so true. i have no life. this forum is my life. thats not so bad i guess.
 
Aww, that's weird! Sorry Kello, I tried. I dunno why it comes out tiny for you. :(

I have a somewhat round face too. Which is annoying when you're on pred. I just uploaded some new pics to my FB and I can still tell that I was on pred, even though it's been like two months since I came off now. :( I keep trying to not be self-conscious though, because when I'm self-conscious, I think I come off as stand-offish, and I probably shouldn't start college that way.

ANYWAY, sorry about the tangent. Also, I didn't mean it in a bad way; sorry if it seemed that way when I said you'd find it anywhere. But you are pretty ubiquitous around this place. Which is a good thing. I can't get enough Kello. :)
 
Procyon said:
Which is a good thing. I can't get enough Kello. :)
Click to expand...
awwww!! that was seriously sweet! i have a big smile right now :)

hah nope it wasnt in a bad way at all! dont worrrrrry. it was funny and nice at the same time :D

ubiquitous! good word man!
SAT vocab?
methinks it is.....
 
kello82 said:
aw thanks hun :)

ok so i just saved that and then loaded it as my avatar and it still came out tiny! see thats what the weird thing is....no matter what size pic i load, it always ends up little.
hmmm.
Click to expand...

Fixed! All the tiny people are fixed as well. If you have a tiny ava then you will need to re-upload your ava and it will come out the proper size now.
 
im cranky.
my mid line wound is getting WORSE. it has been getting very raw and red around the border, deeper, and hurts like hell.
i asked the derm and he said it was just irritation.
irritation my ass.

well today i just realized that i think its the steroid injections that are supposed to help the ulcer wound? yeah i think theyre harming the mid line one. it started going downhill once the injections started. and the side that is closest to the ulcer (aka recieves direct steroid injections) is the worst, SO red and raw.

i had the EXACT same problem when i had abcess and infection in my colon. steroids to take care of inflammation were bad for infection....
saaaaaaaame thing going on on my tummy right now?
crap.

anybody?? whats going onmnnnnnn??

my VN was just here and spent an hour telling us about all these different naturopaths. i am SO frickin skeptical of EVERYONE right now i cant even explain it. no on knows how the f**k to do their job and FIX ME is there really some magical naturopath out there that has the answer for me??
come on.

i know its not their fault though. theyre all trying, just no one knows and they all say "oh no its ok" yeah well then a few weeks later im dealing with a potential ppg or ulcer.
i dont trust any of them, they all telling me its fine when its not.
ITS NOT FINE
 
Geez Kell I'm soooo sorry. You just can't seem to get a break right now. I had high hopes that things were improving now. :( grrr.... darn doctors and their uselessness sometimes. Did you call or see someone else besides the VN? Geez ... I'm irritated today too, so now I can be irritated for you on top of the rest I'm irritated about. :) does that help?
 
lol it helps a little to have all the irritable people on my side heh.
yeah i showed it to the derm on monday and hes the one who brushed it off...the vn saw it today and just doesnt know.
 
Well I can't and won't pretend to know what you're going through, because I've never gone through it. But I can be irritated with you and for you. :)
 
Oh man, so sorry you are feeling cranky and frustrated :( .
Keep your head up love SOMEthing will take a good turn here for you! It's got to!
I hate the "i'm sure it's fine" It's like, you're sure?! Really? Good. I feel so much better. No dude, you ain't feeling what I'm feeling.
The steroids are working good for the ulcer? I know NOTHING, but can they do a lower dose? Or a different avenue to helping the ulcer? You don't even have to answer these questions cause I know nothing and I know dumb questions are annoying :).
Take care dear and let us know how it's going.
 
Oh Kello, I really have my fingers crossed that this will all start getting better for you soon. That this experience can soon be something you are looking back on, not going through. Best of luck to you x
 
Ugh Kell, that sucks. It seems like you're almost going to have to pick one or the other to heal first, cuz they heal in different ways? I do remember my fistula getting WAY worse when I was put on preds.
Did you call your surgeon? Are you comfortable with that derma, or do you think you should switch?
Would something as simple as antibiotic cream help the midline even a teeny bit? I always put that on cuts. (I know how stupid that sounds, and your midline isn't a cut, but do you see where I am going with that?)
Hope this sorts itself out quickly.
"Big kisses for you sweetie"
(haha - inside joke, I hope you just peed a little laughing at that!)
 
ok!
well on friday, prior to my disappearance the past couple days, i got a rush appt with my surgeon so he could look at my incision (once again, at my dads worry), so mom and i leapt in the car and drove to the city. hah its no more of a trip than going to the mall at this point. a 2.5 hour away mall with nightmarish traffic....
anyways, he thinks the problems that im having is just an effect of the crohns. that this is what happens to people with very bad disease, the cuts just dont heal right. this thing shouldve been closed long ago, but they see crohnies with the same problem all the time, no matter what they do it just WONT get better.
in his opin it STILL looked like Pyoderma, but he also said that he totally trusts the derm to make the call on it.....sssssooooo wha? lol what the frik??
he called my gi and they talked about everything and i could TELL that my gi thought it was a pyoderma too!! you know how preteen girls talk when they dont like the outfit their friend was wearing? like "omg, like what is she thinking? i think thats the ugliest thing ever" "omg yeah it totally is"
thats EXACTLY what it was like lmao!
*sigh* but they both trust the derm.
the surgeon used a silver nitrate stick in the midline to get rid of some sloopy tissue. idk why he didnt like it lol.
that one hurt like a b though. i didnt even feel it the other time they used in on me.

then, yesterday i had more injections and i jumped in to see my gi. he thought about putting me on cyclosporine, but GET THIS he actually LISTENED to me about my concern of the steroids making this thing worse and then changed his mind! holy crap! if my theory is true, then the cyclosprine would make it worse as well, being an immunosuppressant.
we are gonna hold off on the meds to see what it does over the next couple weeks.

you know, it was so weird. both my surgeon and gi were SO gentle. my surgeon was the sweetest guy on friday! i was in love with him. i almost feel like he and my gi "talked" or something?? the level of attentiveness and listening to me and the research WE had done and our suggestions was unprecedented, coming from both of them. it was really amazing, felt so listened to. anyways....very curious. but freakin thank god!

uhh what else....
im gonna try getting in to see a wound care doc here where i live. that way when it looks weird or w/e we have somewhere to go rather than a trying to run to the city in a hurry. also im looking for a pain management doc. my surgeon thinks that a patch type painkiller might be better, cause when i wake up from like a 8 hour sleep? i can barely move from the pain on my belly. but once ive got the perc in me im ok. a patch keeps it steady i guess? he said that im on a "lot of percocet for a little person". meh.

overall the gi thought i was better. he said i looked so much healthier (yay!) though i havent gained weight since i last saw him, im just stonger, have better color, etc. he also looked at my butt and said it looks SOOO much better.
and in his opin, the ulcer/pyoderma/whatever is better too. he said it was smaller but deeper last time he saw it, now it is much larger but shallower. i was thinking about that fact...and maybe its true. the frist day my surgeon found the fistula he had to DIG around deep in the hole to get it and pull back so much skin. theres not much to dig into now i think. hmmm...

umm i think thats it. idk so much has happened. everything just blurs together.

thanks for all's replies above :)

mbh- lol my parents and i have asked a TON of times about using some type of topical something or other on my midline wound exactly like you said, cause you always put it on cuts so why not this one??
idk they keep saying no though.
the derms office finally prescribed me a medicated tape...but the medicated part is steroids. ugh! so im holding off on that for now. if the injections are causing the problem then i dont need to go putting roid filled tape on it

LOL at big kisses...hahah if i had any pee in me when i read that, it wouldnt be in me any more hahaah
 
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Good deal Kello. I hope everything continues to work out for the better.
 
hi kello -
glad to have you back - i was concerned there for a while. like misscris, i can't relate to what you're going through but I can still be irritated and frustrated with you.

keep us posted. i hope you get to go on a nice vacation this year...you deserve it.
 
Geez Kell. I can't believe that they're still arguing as to what it is. Have they tried to biopsy your wound? I don't know how risky that it, all things considered, but at least it might give them an idea of what they're dealing with. I'm sure PPG looks far different from an ulcer under a microscope. :S I mean, it seems to me that just blindly treating with whatever when you're not 100% sure is kinda foolish. But then, I'm no derm, so I guess I should keep my mouth shut.

We need to catch up, I've gotta PM you later. =X
 
Hey darlin' glad you had some good appts and they listened! They should be nice sweet and lovely ALL the time, but I guess it makes you really appreciate it when they are. Nice they were in sync, huh?

I was a bit concerned too, like seeing you around and stuff. Well I hope the ulcer/ppg/wound gets better with the next few weeks without steroids. Silver nitrate stick huh...that's interesting it 'collects' tissue? I'm going to look that up--so sorry it hurt bad :(.

Take care!
 
ugh god. bad day :(
my app was leaking so i went to change it. was in a LOT of pain as i cleaned up my wounds in the shower.
got out, started applying powders and hydrofiber dressings and what not, BAM miss stoma decides to be a bitch a poo all over the nice clean dressings. so i clean it up and fix it and replace what got dirty. and then i have a mess again. the same thing kept happening over and over again and everything just went so wrong and the osto cement dried too much and i didnt align the skin barrier right but i was just desperate to get the pouch on there. by this time i was crying out of frustration and my glasses kept falling off from leaning forward to let the poo fall away instead of down the dressings. i chucked my glasses across the room at some point in there. i couldnt see what i was doing anytmore though my tears. then the poo went to blow out again and my mom was right there with some TP for it but in her rush to catch it before it ruined the dressing for the 4398240th time she caught my stoma wrong and it HURT and i yelled. at this point i couldnt see what i was doing through my tears anymore and i was wiping my eyes with the same tissues that had poo and fungal powder on them and i STILL couldnt see.
and finally i just put the pouch on so that i could stop, i didnt even care anymore if it was good or not i just gave up and i went to take away the towel that was on my lap and it got caught on the end of my pouch and PULLED on my tummy hurting me x100 and then my mom tried help me get it out of the way before i could untagle the pouch from it and she pulled even harder and i screamed ow. again. :(
and then i threw various things across the room all kinds of supplies, and fell onto the bed curled up in a ball and sobbed into my stuffed puppy and the sobbing quickly turned into hyperventilating and my mom was holding me rubbing my back and i could hear her sobbing too. i turned and hugged her for a min and by that point i couldnt feel my hands anymore cause i was hyperventilating so hard for so long, so i fell back down on the bed and finally let up after a few minutes.
i said i was sorry and that she wasnt the one who hurt me, it was me that pulled on it and she only did a little bit, and it really didnt even hurt horribly. it was just the last thing. if that was the only thing to happen i wouldnt have even cared.
i didnt want her to think it was her fault that i flipped out. not at all.

:frown: i dont think ive ever freaked out that badly. ever.
still crying :(
gonna go lay down i think....
 
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Ugh I'm sorry Kelli. Hopefully when you read this you'll already be feeling better from a good sleep. Feel better tomorrow.
 
thanks guys <3

i did go to sleep after posting that, now i woke up.
awful dreams, but it was a long sleep at least.
 
this is a way long overdue update, but here we go:

-i saw a pain managment dr last week and he started me on a Fentanyl patch, 12 mcg. he said that it was definitly a low dose compared to the amount of perc i was on, but he wanted to take it slow. so, its been about a week, and its doing about half the job. im still in a lot of pain, but its bearable, i take about 3 doses of perc a day now, compared to the 6 it was before. so its going ok. i called and told him how it was doing and im in to see his NP on fri to evaluate. im pretty sure the 25 mcg patch will do good for me, still probably having to take the perc for "breakthrough" pain, esp during wound care and all.

-my tummy. i have been on a break from the roid shots for the past couple weeks and get this: my midline wound is healing like theres no tommorow! its SO shallow now, .5 cm on top and .2 on the bottom, omg!!! it feels SO much better. so now im convinced that it was the roids that were destroying it and all the butthead drs who told me that that wouldnt happen need a swift kick in the arse. as far as the stomal wound, eh better/worse idk really. BUT there are two tiny craters in the surrounding area now. one of them hurts like hell. and it looks like a baby PG. or "ulcer". i still dont even know what i have. frik.

ive been having killer headaches and caught a cold or something which in turn is flaring my nose sores and im walking around with tissues shoved in my notstils with vaseline because the air hurts. yes, the air hurts. wtf.
since stopping the percs my sleep has been destroyed as well, i now hardly sleep again, and have bad dreams when i do. a couple days ago i woke up crying. i have no idea what the eff i was dreaming though.

UGH so good news/bad news i guess.
still chugging.....
 
I was wondering how you were yesterday as I realised I hadn't seen you about the last couple of days.

The midline healing sounds good. Hope the rest follows shortly, or at least does something to relieve the pain!

Take care of that cold/flu oink!
 
WOOT for your midline one healing so well now!
I know this sounds crazy - but trust me (haha, that's funny isn't it?)
When I have a bad cold and my nose is sore, I put lip gloss on it. Not any old lip gloss, Softlips brand. Cherry, vanilla, doesn't matter which one you get. They are mildly mentholated, and feel SO good. Way better than vaseline. Think of it as Calmoseptine for your nose.
 
Your doctors who told you steroids wont affect wound healing do in fact need a swift kick in the (insert most desired location to kick here). It is very well known that glucocorticoids (prednisone, prednisolone, solumedrol, etc.) affect the bodies ability to heal wounds. Aside from inhibiting collagen production they preferentially differentiate mesenchymal stem cells away from tissues like bone to adipocytes (fat tissue). I'm glad your wounds are healing off the steroids and hopefully you can heal a lot more before you flare again(or just hope you have few if any flares ever again instead!).

On a side note, a number of pharmaceutical companies do in fact research SEGRM (selective glucocorticoid receptor modulators) that maintain the anti-inflammatory aspects of the drugs while reducing the side effects. There have been a few discoveries in the field, but being that GR has a lot of ways it effects the body, the science is still really new and poorly understood. Hopefully in another 10-15 years somehow we'll have a prednisone like drug that does wonders for flares without the side effects, but that is a long time off for the likes of us.
 
thanks everyone

lol MBH thanks! when my nose hurts like that i pile on the vaseline like you said and it desnt really do much ill try the other stuff. but the sores are IN my nose now, not irritation from blowing to much (hah ;)) but like cuts deep inside that bleed and crust over all day long. docs have looked up there and *think* it has to do with crohns. and im pretty positive it does. they feel exactly like mouth ulcers. but on the middle part, the thing that separates your nostrils whatever its called.
THATS whats killing me right now and the vaseline doenst do much....maybe ill try the lip gloss up there...lmao shall i take pics of the application process and post?? LOL
 
Dang kello, not your snot box too??!?! I hope you get over this crap real soon gal!
 
kello82 said:
but the sores are IN my nose now
Click to expand...
Try it! When my nose feels like it has cracked inside from the dry winter air, I rub some on my finger and shove it right up there. I just had my daughter do hers yesterday but it was sore inside! (First time tryer, satisfied customer, haha.) You don't need to video the application, but for sure let me know if it worked!!
 
I get that dry, cracked nose too and vasoline is like my saving grace! I actually keep old chap stick tubes and fill them with vasoline to keep some in my pocket when it happens so I can readily apply whenever needed! A medicated lip balm ointment from a tube might actually help some as well. I hate these "non-digestive" system symptoms of crohns.

Do you guys ever get nasty nasty coughs that aren't attributable to any sickness? You just cough and cough and cough? Cause that is another one I get with my crohns. Also my lips are always chapped and I put on chapstick like 10-20 times a day I think.
 
Hi Kello~ I just saw this thread and I am so sorry you have had to go through so much! You are amazing to me. I had my surgery about two years ago just after my 35th birthday. I felt very scared and upset and had an infection in the wound area where the staples were also. It took FOREVER to heal.. I am thankful that one of my best friends is a nurse..pheew! I don't know what I would have done it was not easy.. Anyway I just wanted to ask what ppg is?? I don't know what that stands for. Were you having a reaction to the appliance that you were using? I had a couple of pretty ugly reactions when I first had mine. Not a good time to find out that i have an adhevise allergy :( I hope I am not asking too many questions I just am so interested how others have adjusted to everything and if my expierence are the norm or not. Take care... I hope the sores are getting better now.
 
hi all

sorry about the abscence. i havent really felt like being on the comp recently, i have more drive to get up and do things. been doing more around the house..cleaning and what not. thats good i guess. also the higher dose fentanyl patch is totally knocking me out a lot i think lol, one time i slept from 7 pm to 5 pm the next day, omg!! so ive been sleeping a lot too

good news/bad news here
good- my midline is so close to being done healing. i went to the derm last week and decided to hold off on the shots for another couple weeks to let the midline finish healing, hopefully itll be one less thing to worry about soon
also, i am down to 15 sometimes 20 mg perc a day! the fent patch is really helping a lot. i was taking 50-60 mg before...ugh.

bad- *sigh* i have PG sores on my leg now. i had no idea, there were just all kinda of bug bites and bumps and im a picker and pick at everything like that, a nercvous habit type thing. after a couple times though i always force myself to stop and just let it heal and i put bandaids on and then i dont pick cause theyre covered. ANYways, i went to change the bandaids the day befrore my appt and one on my right calf was awful looking. so i showed them and in a roundabout way said it was pyoderma and injected it with steroids. i havent looked at it to see if its better, just wanna leave it alone.
AND there is another spot on my shin now that looks bad, developed since the appt. and i DIDNT touch that one. it started out as just a flat red spot and was itchy so i covered it and then a couple days ago found a baby PG sore looking thing there.
the rest of the sores that ive picked at are still normal looking, just normal looking bug bite scabs and what not.
i did take a pic of my leg but havent uploaded yet so hopefully ill post it soon.
ANDD doc troubles again. my derm passed me off to one of his interns who totally blew off the sore on my leg and said that "i just needed to stop picking", it wasnt until i made the real dr come in and look that he said it for sure looked like "pathergy". we asked wtf that was and he said pyoderma...was kinda weird but w/e.
SO now i have this intern who doesnt take me seriously. he even accused me of picking at the sore on my tummy, and my mom was like "no she doesnt!! its always covered by her appliance in the first place..." and i was like "NO! i dont PICK at this. (asshole)" and he was like "i think she doesssss...."
exscuse me am i 5? hes such a jerk and i really hate him, not to mention the fact that i wouldve gone home with untreated PG on my leg if we hadnt forced him to go get the superior which he was pissed about because "our appt was with HIM and if we wanted to see Dr. L we really needed to set up an appt for him" so we have to figure out how that whole situation now.

that ended up being a longer rant than i intended lol.

la la- PPG is Peristomal Pyoderma Gangrenosoum (not sure if i got the sp. right). just PG is a result of crohns....sores on the leg, some people get it in other places though. these sores can go very deep even down to the bone. if you google pics of it, its nasty. so the Peristomal version of it means you have the same type of sore around the stoma, its casued by the surgery itself. in trials and stuff anyone who had the stoma reversed completely healed the PPG. they dont really know too much about it...happens to 1/100,000 or some number like that. same with PG its rare and not much info known about it.
thanks for your kind words :)

allright i hope to be arond a bit more. luv you all :D
 
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Ugh Kell, I am sorry you are still going through crap. At least you have a nice chunk of good news there too. Grrr - try not to see that intern again.
You have really been missed here. I think I saw Mark weeping in the corner yesterday looking for your PM love.
 
I have a suggestion regarding PG. This has a chance of working, but I have no idea what kind of chance.

My son has Hydradenits Suppurativa. He has used Turmeric as a home remedy and he claimed that is reduced the problems with his sores.

Since then, I have been looking in on a Hydradenitis site, once in a while and it seems that several people use the same remedy to reduce problems with these huge boils.

Turmeric has so many good properties that it is hard to nail down one that would cause this reduction in infections, but a couple I can think of is its anti-inflammatory, antibacterial nature, and its ability to cause the blood cells to work in a more orderly and efficient manner.

No matter what makes it work, it has virtually no risk, and it is cheap. It should not be used in large doses with blood thinners.

I would start out at a small dose of 500 mg to test for any allergy, and ramp up to about two doses daily of 1500 mg.

Again, there is no guarantee this will work, but it is a low risk remedy that likely will not do any harm in any case.

I would add Krill Oil, and one capsule of Ginger to help absorb the Turmeric to it also, since Krill Oil is a skin improving supplement, that personally improved my skin condition noticably. omega 3 fatty acids are super important in general, for any one.

Good Luck

Dan
 
Hey Kello, I hope you are feeling better and i can't believe the doc would just blow you off like that.... I would bring that up to the board of health, i'm tired of hearing all the doctors just act like its something with us and nothing is really wrong. I have had it happen to me and its completely uncalled for. Get better soon and let us know whats going on.


MBH - You weren't suppose to see that
 
Hi kello - sorry you're going through so much drama. FYI - I was on percocets for non-crohns surgery a year ago. Careful as you get off that drug. As I'm sure you know, it's highly addictive and you need to wean off it.

Feel better soon. Glad to have you back.
 
Hi Kello~ Thanks for filling me in on the details of the sores on the skins surface. Once you told me that I do remeber my doctor telling me that crohns can manifest on the skin.. that must have been what he was talking about. I am so sorry that really sucks! You know I started this new medication that is not used with crohns all of the time but does work in some cases for fistulas and more difficult to treat cases. It's FK506 or Prograf/Tacroliums. I did read that it does come in a topical form aswell but I am not to familar with it. Just thought I would throw that out there in case it could be something that would work for you. I have only been on this medication for two weeks today so I don't have alot of personal input either yet. Take care and try not to let those doctors get you down :(
 
How's your weight now Kello? Is it starting to go up yet?
I'm up to my heaviest ever. I need to start thinking about diets.
 
thanks all

i will respond more in depth tmr i hope, but im about to go to bed now...or attempt to, but i figure id pop here and post that i have appt with my GI tmr and will be discussing many things- the PG that is appearing on my leg (i now have 2 sites), my nose which i strongly fear is perforated or nearly so, and the fact that my colon is still pretty bad. a couple days ago we had to rush off the highway and find a bathroom for me. for a mucous dump. i mean come on, is it really supposed to be this bad? im have an effing stoma, there is no reason why i should have to urgently need a toilet anymore. but i still do and it is freakin p-ing me off.

then im off to the pain managemnt dr for a 2 wk checkup, hopefully will be less to deal with there. im only taking about 3 perc tabs a day in combo with the 25 mcg patch yay!
i hope thats acceptable....

ok as i said i will reply to above questions and all a little later, but thank you guys for all your thoughts and input and care! lots of <3's for everyone :)
 
Hey kello,

On the mucous thing...I still have fairly urgent needs to use a bathroom for mucous pretty much every day...even 9 months after surgery. I've talked to my doc about it and he's said its normal. It has gotten less frequent, but its never gone away completely. I think the issue is, since we still HAVE our colons...that they are just nominally active all the time. I'd imagine that if you still have active disease going on that you would also produce even more mucous....

Sorry that it sounds like everything is still sucky. I wish that you could see a proverbial light at the end of the tunnel.

Good luck at the GI tomorrow. Hope things are going even slightly better (also...glad to hear you've gotten better pain management going).

ERin
 
Hope things get better for you. My daughter had surgery on tuesday. She is doing well. As she was waking up, the first thing she said was do I have a stoma? No she does not. I cannot imagine how hard that is for you.
 
helphelphelphelphelp!!!

my stoma is practically gushing water and ive puked twice now.....once was lunch and then after that i tried downing a lot of hot water to help flush things out and then i just barfed that up too...
im guessing i have a legit blockage now?

so what do i do now?! is once you throw up mean its more urgent??
 
:(

I'm real sorry your recovery hasn't been optimal Kelly, but it sounds like a blockage, if your instructions haven't changed, either the ER or, if it can be calmed, wait till tomorrow. I'd lean towards the ER because of the situation though (surgery and all, don't want things going sideways, error on the side of caution), just doesn't sound right, but I've not had a blockage, and been lucky on that front. Take care, and try not to move around too much, as for the time being I think being still will aid you best.

Use your instinct on this one, and what they taught you for post op, you have a good gut insight I'd imagine from reading your posts. Take care of yourself.
 
thanks bens
my gut tekks me its not that bad yet...but ive been wrong before so ugh.

i didnt go anywhere yet, i called the on call GI for my docs office and he sounded either half asleep or drunk but told me to wait it out until it was severely painful or couldnt control the vomiting
no more throwing up in the past couple hours so maybe its passed.....im worried though still

worst part is that were not even at home, were at a hotel in the city as i had the derm appt today and and ENT doc tmr morning, we had to stay over rather than making the trip. so at least the hospy is right there i guess, but its not home where you wanna be when you feel shitty.
oh well

ok im gonna lie down but i didnt want yall to think i had died or rushed to the er or anything...just gonna wait it out
 
Damn Kelly, sounds like you have been having a rough last couple of days, I reallyhope you get better soon. What do you think could have caused the blockage if there is one? Wish I knew something to help you.
 
Kello! Hope it is going better today and your appts went well. Let us know what's up with you when you get a chance dear.
 
Yup yup - ditto what everyone else said. Hope you are doing well today and were able to make all your appts. Let us know when you can. Thinking about ya'.
 
holy hell im alive.

the blockage is gone thank freakin god. not sure exactly when it went, but after i threw up all the water i tried sipping some instead. before that i had been chugging thinking that i would cause the flood effect in my intestines and WHOOSH! everything out, but maybe its just too much for you tummy to handle. after some super fun gymnastics, which IMO really helped lol! i got up and walked around and got a few good farts out of ol' nubby and i think that was it.
the only thing i found as i cleaned up around my stoma was a tiny piece of carrot, im positive it wasnt just that. i think this is what happened tho: my mom and i went out for lunch after my appt yesterday (the place was gross...never go to a restraunt called "one fish two fish" in the city ok?) and free salads came. i munched on some bits of veggies, a bite of carrot, a bit of cucumber, and a piece of lettuce. ive had way more raw veggies than that before and it was totally fine, so i wasnt worried at all. BUT my tummy was so empty cause i fast for derm appts so im not crapping all over the place when hes injecting, so maybe the salad rushed right through my system without processing well and the little tiny bit got bunched up. that would explain why i threw up my entire lunch hours later....the salad prevented it from going through.
SO salad on an empty tummy? big no-no. and im even scared to eat raw vegetation for a while now.
i mean its not like all the other stoma peeps on here havent said or warned me, but maybe its just something you have to learn on your own just how honest to god AWFUL a blockage is.
i suspected a problem after i woke up from naptime nauseous and my pouch promptly filled up with poo water. i thought i was part poo and part air, so i went in the bathroom to pop the seal and let the air out so i could empty easier and the poo water just started flooding all over the place. TIP: dont pop the seal on your pouch if you arent POSITIVE that its air in there.
so i unclipped it and just let about a gallon of water explode out, took my pouch off so that i could poke around my stoma. i was smart and took my jeans off in case my stoma made a mess. oh boy did it ever.
i kneeled in front of the toilet and it was too tight to get my pinky in there to try and break things up so i got on of the super long q-tips and gently prodded in the last bit of my stoma (lol sorry mama ding ;)) right at that moment i threw up lunch, for about oh 5 mins, really just throwing up for 5 mins as my stoma squirted poo water all down my stomach and my leg and as the toilet water splashed me in the face from throwing up.
pretty much the worst, grossest few minutes ever and definitly make me think twice about my veggies.
after that i poked stoma again and got a gush of poo water to come out. waterfall like, kinda.
thought i was done until i threw up again a few hours later.

SO moral of the story--i learned my lesson, and no amount of warning can ever prepare you for how much that sucks.


on to dr appts:
derm---
he decided not to inject my tummy again, he thought it was just doing its thing that it needs to do and that any medecine we can avoid is for the better. ok i guess. he injected the 2nd site on my leg and thought that the 1st one looked great, healing nicely. overall pretty uneventful.
UNTIL we pointed out the lower bit of the wound has been more swollen and tends to collect mucous and shower water when i clean it. almost like theres a little pocket under the skin there. he said it wasnt really his realm of expertise any more once its under the skin and thought that my surgeon needed to see it and make sure that no tunneling of fistulazaiton was going on.
conveniently, my surgeon is in the same building as the derm, just 9 floors up. so we called and they told us to come on up, and i taped on a skin barrier and held my pouch on and we hurried upstairs.
surgeon said he thought everything was fine and that PPG and ulcer wounds tend to have a flap of skin that overhangs the bed of the wound, creating a space. but he still had to proceed to stab it with my nemesis, the giant q-tip.
then he had to get out my other enemy, the silver nitrate stick, and SHOVED that little shit into every last bit of my ulcer.
i calculated that it was about 625 times worse than the pain of the steroid shots.
then he silver nitrate sticked my midline wound you know...just for fun.
and then summed up by saying that yep, everything looks fine.
i was crying my face off but just wanted to leave and go to bed, so i cleaned my tummy and put on a new appliance. finally after everything was done i fell against my mom and had yet another panic or anxiety or some kind of attack and hyperventilated till i was so dizzy i truly wouldve fallen off the table if she had let me go.

SO then back to the hotel, naptime, stoma poo water and puking.. etc. finally go to sleep.

then today was the ear, nose, throat doc and today was much better actually. he is pretty much the best doc ever :) he was hilarious and always making jokes. hes about the sweetest guy ever, you can tell he loves his job and he LOVES that he loves his job and constantly making jokes that "well im gonna look up your nose. not very glamorous, but, thats what i do" LOL he was great.
LOL and i told him that i even tried to get one of my hoop earrings through the perforation, (just to see what i looked like with a nose ring) and he laughed and was joking around about it with me :ylol: so funny
anyways! things were shoved up there today that should pretty much be illegal. first he looked, then put on some kind on anesthetic, then he vaccumed (yes he vaccumed my nose. and my ears but that was just for shits and giggs), shoved a cotton balled with more anesthetic up there, this horrible huge pincher thing went up there and he took two biopsies, sprayed some more anestetic, and then silver nitrate sitcked me.
couldnt forget the effing fire stick now could we?
the back of my throat was numb the whole way home, it was very weird. and gross tasting.

but ah, the bright side? i never have to get my nose pierced if i so choose. its already done for me :D


ugh.
i guess thats about it though. i just slept for about 12 hours so that was nice but overall its been a pretty terrible few days.
and i think that probably beat my other posts and is now the longest post ever hmm?

thanks everyone for your concerns and help. it means so much :)
 
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So glad that you are feeling a bit better. My GI told me that salads are really bad about clumping up and causing blockages, told me i should try to avoid them as much as possible. I don't know if you eat a lot of salad, but that's just what he told me. Sounds like you had a rough day though. Hope you are getting better.
 
Kello, that is so awful that you had to go through all of that. what a traumatic experience. I hope that you are feeling better really soon and get this all behind you. You have a tremendously strong spirit and are an inspiration.

::::Crowd Cheers- "KellO0o!!!!":::::
 
Glad your pukey problem went away Kell. You're doing great girl, keep being strong.
*CF does "the wave".*
 
i just realized something and im not sure where to put it, but others with stomas, i wanna see if you think the same.......

i realized that having an ostomy is totally a confidence BOOSTER!
its like youre walking around, people still talk to you, think your funny, interesting, whatever AND youve got thing little secret on your tummy.
it makes you feel like hey, youre so awesome that even a pooper and a bag full of it on your stomach cant TAKE your coolness away!
does that make sense at ALL?? i dont even know if im expressing it right.....

its such a strange feeling....


oh and also i went swimming! first time getting the my app wet (well since my 1st couple showers where it got messed up) and it seems to have stayed on ok! yay!

you could deff see it under my suit cause my setup is so complex right now, has a lot of layers. i joked that i only work out one ab lol!! thats what it looked liek.
oddly, i was more self concious of my legs. theyre all bruised and pyoderm sores and scars everywhere...ugh.
 
Yay for swimming success! You have sounded so much more positive in your posts lately, it must be going so much better for you? Do you have the bag changing down now? How about the healing of your 2 belly wounds?
Good to hear you sounding more confident =)
 
Kello -- I went to the beach TWICE this summer! Sure I had some issues with the appliance after each time...but I went! Swimming made me feel super cool in the way you were saying.

I'm not sure I feel cool...but I did get this pretty sexy (if by sexy...I mean clingy and low cut) and I wear it with my bag and I feel pretty cool about it. So there's that.
 
got new pics for y'all!

tummy far view:

newesttummy.jpg



tummy close up:

tumcloseup.jpg


they might be from different days, not really sure. but these were nice clear ones.

AS YOU CAN SEE!!! my midline incsion is a little baby and will be gone soon!! in the second pic there is just a teeny teeny tiny dot of open skin still. yaaaayyyy im so excited. and my stoma is just $%#$%^&&*^*.
thats pretty much all i have to say about that part....

edit: ok yeah, deff different days. the 1st one is older...the second was like 2 days ago. my stoma has gotten not so happy the past weekish as you can tell by the increased amount of purpley/blue skin and red rashy stuff.
 
Last edited:
Thanks for posting new pics! Wow your midline is SO tiny, great! It will be gone in no time :). I just looked at old pics from a month or so ago and it looks so different!

Is that all ppg surrounding your stoma? All of it? Is it rearing it's unwanted head in the previous picture at all?

I'm sorry your stoma has an evil friend, dear...! Bad bad ppg! :ymad:
 
Glad the incision is finally healing up!

Your poor stoma though. :( I don't even know what to say... I really hope it starts to improve. Keep on hanging in there.
 
thank you you two

lis--
hah you ask a confusing question. the PPG is not ALL of the irritation and stuff around my stoma. what i *think* is that most of the red rashy looking stuff that is farther out from the stoma is skin irritations...maybe fungal infection or heat rash or something? idk, ive been using prescription anti-fungal stuff but its not really doing anything anymore.
the PPG is the open part around my stoma. i think of it like a moat, lol. thats what its like. so any part where you can see the red mushy underlayer of skin is the PPG. and the purple and bluish skin is dead/dying skin. thats what PPG is, its a necrotic (dead) tissue disease. like for no reason you skin just eats itself-ish. (not really eating but it seems like it)
so if you look at the circles...the inner circle is the stoma, the next circle is where skin has died off already and left the open tissue under, and the next circle is the bluish ring of dying skin.
i *think*
like a big gross nasty target symbol.
uhhh make sense? i hope lol
 
Damn babe i hope they get that fixed up soon. maybe you will be like me and not have to have it very long and then can get all healed up.
 

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