Surgery Time

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thanks you three.

well Pro, life isnt fair? lol i hate being told that haha. heard it so much as a kid.

i wish i had your docs too mark. youve mentioned before how great they are. i am getting tired of these torture sessions in the surgeons office :(
but he is a sought after guy, smart, very experienced, etc. i dont know if i wanna just go ditch him b/c of his sucky, no make that *awful* bedside manner. lol and the fistula isnt BS! its PS! hee hee thats a dumb joke from me.

honestly ding, the fistula itself doesnt feel to bad, not much to imagine really. now that i know its there, i can feel the movement within it, but before hand i just thought it was the stoma and pressure on the surrounding skin. though a lot of the pain i was having with that blockage issue was in the fistula, as you can imagine the pressure was probably trying to be relieved that way, just didnt know it at the time.
lol and YES he can be much gentler and he knows it! last time we were in he was swabbing my incision wound very roughly and my mom said something like "oh wow we arent as rough as you are being" and he said "oh no you shouldnt be that rough."
umm helloooo what?
and then on friday after all the other torture was done with and he had put the temp baseplate on he started to put the pouch on the flange and then said "oh here do you wanna do this? i dont wana press too hard."
lmao wtf.

i dont know what else to do except yell at him, but still just suck it up and let him do his thing. he knows that im not a wimp, i know im not a wimp. so when i start swearing and/or crying in pain, its for good reason.


tommorow is the first time i have to change my appliance with this new system :(
i dont want to. i hate peeling the paste and stuff off of the stoma wound, its the most awful part. you know, i kind of kick myself in the butt now, it hurt that bad before...why in hell did i i think it was ok??!?
gah. its always so clear looking back on it i guess.
 
Ahhh, Kello, I'm so sorry your going through this.
I think I can speak for everyone on here, by saying, we'd hoped this surgery would solve your problems. But it doesn't seem to end for you.

On the poo'ing front. I can go hours without any discharge, what so ever.
My stoma seems to kick into action, mostly, when I eat. It can be quiet for an age, then, when I put food into my mouth it fills my pouch...!!!

It's as if my body holds onto food for as long as it can, then gets rid of it to make more space.....!!!!

While I was in hospital for my surgery, a man came in with a fever. He had a fistula in his stoma that had turned into an abscess. He had to have emergency surgery and ended up in intensive care unit for 2 weeks after it.
His abscess was internal.

Make sure they keep an eye on it. This man had to have a new stoma site formed on his left side. He went through hell.
His GI had diagnosed Colitis 3 years ago. He wasn't happy with his care, so he researched GI's in the rest of the country and found my GI to be regarded as the best. It was shortly before he was admitted to hospital, but while in hospital, he was diagnosed with Crohn's by my GI.

I've had a lot of abscesses and fistulas, but nothing compared to the 1 he had on his stoma. (But, I also got the feeling, he wasn't a very good patient, complained a lot about everything.)

Make them monitor the new fistula.
Sorry if I've scared you.
 
your surgeon may not be used to removing stoma appliances while a patient is actually awake. i know that sounds silly but once they've done their bit in the operating theatre, normally it's nurses or the patient who removes things like this, so maybe he just needs a few loud and large hints that it HURTS, and a gentle approach is needed!

regarding taking it off yourself as painlessly as possible, you could try soaking in a warm bath for a good while before removing the appliance, and also hold down the skin with your other hand, while pulling the appliance off with the other.. if you keep moving the pressure on your skin towards where you're pulling as you expose more skin, it stops it hurting so much.
 
That's very true about the surgeons Ding. I've noticed that myself. They seem to be clumsy when it comes to removing the appliance. I think your on to something.
Perhaps you should tell him that you will remove it yourself, it is always better to pull off a sticky plaster yourself than letting someone else do it.
 
ive noticed that too about the surgeons! they are used to their patients being unconcious, right? i too think that might add to their lack of bedside manner. in the OR they dont need to have one.

but still it isnt necessary. ding, i DO give him very loud direct hints that it hurts... he knows it does. but i guess he is just set in his ways?
thats a good idea to do it myself though.....hadnt really thought of that in this case, but with all other sticky things i try and do it myself- hospy iv tapes and stuff. i hate when the nurses dont listen and get there hands in there to try to "help". grr leave me alone! lol

and to remove the appliance ive been using allkare adhesive remover wipes. they really are kinda magical, at lifing the goo, especially dired paste and stuff is the worst to pull. but maybe the combo of a a warm bath as well would be even better. hmm maybe ill try today! a soak in the tub sounds nice even

thanks for the info about the output dan. i know i shouldnt worry about it, as long as im not in pain meaning that things are stuck in there, then i should be fine.
ugh that story about that guy is awful. true, maybe he wasnt a very good patient- not proactive with his care and all. i would think that an abcess would be noticeable to him.
i will make sure they keep on top of this. and ill definitly watch out for fevers now.
lol and dont worry about scaring me. i mean no one like to hear stories that could potentially apply to them in that way, but id much rather KNOW what could happen than to not even expect it.

what really bothers me is that this is TWICE now that the problems have gone unnoticed and would not have been discovered without my prodding.
the infection in the incision- he told me it looked fine, i said no its not why is the pus!?!, and it wasnt until he dug a little deeper that he found it.
same with the fistula and wound- he would not have even looked at the stoma site if it werent for me telling him the pain i was in in that area.

but yet both times i thought that the symptoms i was having were normal! i thought the incision pain was just the staples, i thought the sore around the stoma was something that just takes time, and i thought that the pain in the fistula that i didnt know was there was just the pressure of the blockage pushing on my skin!
ive become almost the opposite of a patieint that complains too much, i dont complain enough for my own good!

something i have to work on i guess. i am normally so in tune with my body, as we all are here, and able to self diagnose immediately. but with this new surgery and things ive never had before, i dont know what "normal" is for me, so therefore ive just assumed that everything thats going on has been normal.
 
i cant believe how much i write in here.

its become a kind of place to record whats happening and going through my head, not just for questions anymore lol.
but its nice to have a place to put it all down. and helpful to kind of "think out loud"
 
I've also noticed that if I shave aroud the plaster, it's so much easier to remove the next time.

Even for the ladies amongst us, this might be an idea. There is still fine hair on the skin that makes it harder to remove plasters. I've noticed that it comes off very, very easily once it's shaved.

I buy cheap diposable razors that I only use once and throw away with the old appliance, I can get a pack of 5 for 2 euro.
 
lol i actually have noticed when im peeling it up, i can see it pulling on my skin like there are hairs stuck. the hairs are invisible, but you can see the skin rise to small bumps and then let go.
do you use soap, shaving cream, etc? probably shaving cream might not be good for that area....huh, i dont know.
not sure if i could shave the area just yet though. since i have the fungal infection on my skin, theres a bunch of bumps and some small open-ish sores that would make it hard to work a razor there.
but hey if something so simple like that makes it easier, then ill definitly do it later on.

well so i changed my appliance last night and it went fairly smoothly in terms of no stoma eruptions. but the setup isnt so good, i have to wear a skin barrier and the baseplate, which makes thickness of layers that do not like to sit and be flexible like just the baseplate alone that im used to. i had to just buy a box of baseplates that are unusual b/c i ran out (i know stupid me to run out), so the fit isnt as good as when the nurse did it for me last week. it should be better when i get the normal ones though. which should be before i have to do it again.

the wound around the stoma actually looked a bit better, so that was encouraging.

my stoma looked a tad swollen. but only on the tip of it. the base half was normal, and the tip half was....rounded? a little swollen and FIRM. usually all of your stomas are squishy right? mine is. but not yesterday.
i am wondering if that is my blockage passing through? my stool still does not come out "easily", but its not painful and awful pressure anymore. just a bit of pressure.
does that make sense that if the blockage is moving through the head of the stoma that it would be a bit bubbled out and misshapen? and firm?
 
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Kello.. i think you're wearing a two-piece appliance, right? that means you could take off the actual bag without having to disturb your skin... it's worth doing this to have another look at your stoma say, 24 hours after you last did, to see if the shape has gone back to normal.

stoma's do change shape and substance in accordance to how active/sleepy they are, sometimes they look really perk like a little strawberry, and other times like a tired slug lol. it's probably absolutely nothing to worry about, but i'd have another peek just to see, if i were you..
 
I dont use any shaving cream or any other products. But i only give the skin a very gentle shave. It's amazing the difference it makes.

Stupidly, I hadn't shaved the area for a number of weeks after surgery (about 8) and it was very painfull getting the sticky plaster off. But since I started shaving it, it comes off easily with no yelps from me.

I've noticed this too Ding. I change the pouch every morning and the colour and shape does change. From a light pink to a dark red.
 
Just a quick question for you Kello.

Have you had any weight gain since your operation. Have you found any benefit?

I know the problems you've been having with regards to the wounds, but I'm just wondering if you've found that the procedure was worthwhile (Not taking into account that you've had other problems) with regards to your general health?
 
well funny you should ask that danman.....:)
i had appts with my GI and my ostomy specialist today and i have gained 13 lbs since morning of surgery!!!!! 96!
i knew i had gotten some back but never even dreamt it was that much!

so to answer your question--yes ive definitly felt benefit from the surgery. im no longer wasting away from malnutrition and am getting stonger little by little.
as of now and removing the complications from the picture, the surgery was worth it. i was on a path towards complete starvation pretty much, and the surgery alone has saved me from that.

but i guess it just doesnt feel quite worth it ATM, as ive traded that one problem of the crohns for this handful of surgical complications. just traded one problem for others, one pain for new pains, etc.
yes the pain of taking a dump is gone, which was the worst of my cd symptoms and horrifying pain, but heyyyyy the pain of the wounds is pretty awful right now too.

but i repeat--not taking all that into account, YES the prcedure was worth it.

other complaint is that other symptoms continue to flare: mouth & throat ulcers, sore butt, LOTSA mucous, pain after eating, and cramps.
but the poo cramps in my colon were 1000 times worse than all of those combined
 
i am having so much pain right now. woke up at 1:20 am and took 2 percs and my stoma is still on fire.

theres 3 spots around it that just ache and burn when a fart or poo passes. one spot is my fistula at like a 6:00 location, and the other two are at 7:00 and 12:00 if tha makes sense.
im so afriad its more fistulas----how can it be though. 1 is enough.

im due to change my appliance in the early half of the day tommorw. well, today actually, monday.
and i think im gonna call someone.
GI or surgeon or ET nurse idk which.

dammit dammit. too much is going wrong. if this takes another surgery i am gonna lose my mind.
 
heck i hope it's not more fistulas! :(

if i ever get any kind of discomfort near the stoma, whether it's itching, burning, or pain, i change the appliance immediately, partly to see what's going on, and partly to give the skin a chance to be cleaned and breathe for few minutes..

it's amazing just how painful the surrounding skin can get due to a leakage, there are times when i've almost cried just gently cleaning the area, and other times when it's broken down so badly i've gone to the ward for help. maybe it's just that, Kello.
 
ugh...so do you think i need to do it now?
im still at the point where i need my parents help though, and my dad is sound asleep. obviously as its 2:30 am here.

see but it burns itches and is painful ALL the time for me. burning and pain well cause i have an open wound around the stoma with a fistula draining poo directly in and air trying to be shoved out of the tiny tract. anyone whos had a fistula on their butt or rectovaginal type knows how sharp and painful a fart taking a detour is.
and the itchy is from the yeast skin fungus.

sometimes ive gone to take it off expecting there to be poo all over the skin underneath the baseplate cause of how much it burns, but it is totally clean and is just the wound causing the pain.
i cry when im cleaning mine too ding, its so gosh damn tender and raw.

ughhhhh but maybe i should just do it and get it over with now.....
 
aw you poor thing :( what happened then, did you change the appliance?

do you have telephone access (or even email) to a stoma nurse, Kello? if so, i would certainly use her services right now.. tell her exactly what's going on and see if she has any ideas on how to make things more comfortable for you.
 
Awww, Kello - I hope you got it changed okay.
Okay - here's a shot in the dark.. what about some Calmo? I mean - it works great for butt wounds, and it sounds like some similar type of drainage pain? Good barrier too. Would that help ?
 
Kello,
I know this may sound extreme to some extent, but maybe you should consider changing every day for a while.

I agree with Ding, the only time I feel a burning sensation is when I need to change the appliance. It's due to a small leak somewhere. The discharge from a stoma is very acidic due to it not going through the large intestine and having bile added to neutralize the acidity.

If you change everyday for a while, it will give the skin a chance to heal better.

For the first 4-6 weeks after my operation, my skin burned constantly. It all about having the confidence.

I think you should start changing the appliance yourself. it's actually easier.

have everything to hand, and just lean over the toilet so you have free hands. The more you do it, the easier it gets. I managed to change everything in less than 10 minutes this morning.

I know you can do it, you've always shown such resolve.
 
i'd be inclined to agree with Dan on both counts, changing more often, and attempting to do it yourself.. maybe the first time do it when one of your parents is in the room with you, but ask them to just stand back and watch...

it's true, it is all about confidence (i've got mine down to less than 5 mins now lol). maybe tuck a big old bath towel into the front waistband of your pants or jogging bottoms before you start, just in case your stoma starts misbehaving. & get everything prepared before you start removing the old appliance, take off protective covers from sticky bits, get holes cut, so there's no extra fiddling to do once the stoma is exposed.
 
That's my system as well Ding.

I lay everything out before hand, have the baseplate cut and covers off.
It makes the whole process much easier.
 
Hey Kello I hope you were able to change your appliance. I'm sorry that you are going through so much right now. I'm keeping you in my prayers. Best of luck
 
hey guys
thanks for all your concerns.

yes i did change my pouch today. it went relatively smoothly, no poo spurts in the middle. just to clarify, i HAVE been changing myself and doing all the work and things. mom and dad dont really do much except hand me things sometiemes and just be there for support. but i have not done it alone yet, though i know i could do it alone, mom/dad still wants to be there everytime, you know? if morning came and i said "oh btw dad, i changed my pouch last night" hed be pissed lol.
the wound and fistula looked worse today though in opinion. see thats another thing about having someone be with me right now...another set of eyes to check on things.

i got in touch with my GI and told him how bad i feel and that i think something is wrong, and he said he would squeeze me in tommorow am and scope it if we decide so. ive been npo since this afternoon (cause i didnt hear from him till then) so i hope thats long enough to be clear.

i went to bed early again tonight, wel last night, about 8 pm. and now ive been awake since 12:30. in pain. again.

i poked around my stoma in the wound with a giant qtip today and the whole thing is just on fire. all around the wound there is a ring of painful hard skin. scar? or infections? :( oh i have a fever right now too, 100F. the fistula looked bigger too. the edges of the wound are so raw and eaten away....i think it might just be from the silver nitrate though. but it scares me.

im in major bummer stage right now.

oh yeah i tried to self dilate my stoma yesterday in an attempt to break up a possible food blockage and i couldnt even get my pinky in more than like, 3/4 inch. is that bad? shouldnt it stretch more?

and as far as changing it every day...that would probably help with keeping it clean, but i feel that it also might hinder healing a bit to be tearing adhesive off everyday. every layer of healthy skin that my wound puts down will just be ripped off, right?
oh i dont know.

ow. i hurt.

we will see what the scope shows tommorw. i hope whatever is wrong can be fixed.
sorry for rambling
 
Hey Kello, while I can't offer any help or suggestions into your situation I feel for you and hope it all gets better soon! I've been following your surgery post and watching the ups and downs. Good luck and i wish you well!
 
Kello, have you been told it's ok to put your finger (or anything) into your stoma??? i wouldn't attempt this myself, and the only time that's ever been done was when i got a piece of pineapple stuck, & one of the hospital team did it for me on the ward..

the raw hard skin could well be damaged skin from your output, but of course it could also be due to the infection you have in that area. i mentioned leakage soreness before and the skin breaking down.. it goes through stages.. it can get to the point where it does go bright red, hard, excrutiatingly painful, and seeping fluid - at which point it's so hard to heal because the appliance won't adhere so it's vicious circle time :(

glad you've got an appointment.. let us know what they say. good luck honey.
 
dingbat said:
Kello, have you been told it's ok to put your finger (or anything) into your stoma???
Click to expand...

noooooo:(
ive been searching online all weekend for advice on what might be going on and how to get a blockage to pass, and after trying hot water, massage, heating pad, moving in strange positions--that was a last suggestion. just gently prod with your pinky finger.
it wasnt difficult or anything, once i felt the tightness i stopped, i was very careful.
but your right mom :))), i probably shouldnt have.

i guess the idea didnt seem far off for me, cause ive been dilating in my butt for years. so i thouhgt, hey this is my new butt right?

i dont know. dumb idea maybe.
 
mom.. cheeky! :D

may not be a dumb idea tho.. it's just something i've never contemplated before, or heard any stoma patients doing themselves. maybe you could ask your doc about it - it could well be ok, particularly if it's suggested on a medical site.
 
lol ding, well i didnt feel like telling him about it today, was afraid i would get a no-no.


so today's appt decided that surgery #2 is coming my way.
the ileoscopy showed that my small intestine is totally clear, no crohns in there whatsoever.
which is good news.
but that means he can only attibute my obstruction symptoms to the wound around the stoma. he called it a "decrompresssion" but i think he really didnt know what to call it. he said he has seen it before and they are unsure of why it happens. it happens to some people who have cd and some who dont. and some people develop fistulas in the wound decompression thing and some dont
basically, by process of elimination, this thing is the cause of all the problems- fistula, poor healing, blockage symptoms, etc. as far as i understand, this thing squeezes on the stoma, even though its not scar tissue (i asked), it is just this weird thing that doesnt heal.

i have an appt with the surgeon on friday to finalize the surgery.
the two docs talked about it today right after my scope.
it will either be a revision of my current stoma, if my surgeon decides that its salvageable. or ill have a totally new stoma construction on my left.

ugh EFF.
im so.......tired.
 
oh :(

aw i'm so sorry Kello.. you must be well peed off by now. i'm trying to look on the bright side though, for you, and there is some excellent news in there, in that there's no sign of Crohn's. and all the symptoms you're suffering with now, you know can be cleared up in one surgical procedure, so that's good too.

keep that chin up girlie, you're almost there x
 
Oh Kello, I am so sorry! You have been through so much already. It's time for you to have relief. I sure hope this next procedure takes care of everything. I'm thinking of you, girl! Hang in there...
 
aaarrrrgghhhhh!!!!!!!

can we get a hug smiley on here please???

hope friday goes well kello, thinkin of ya.
 
thanks everyone.
i wonder how many times ive said thanks in this thread.....

yay mark won a page!
8 full pages of this. jeez.

will post when i know what date it will be.

hopefully sooner rather than later. atm its hurting so much to pass poo, i dont even want to eat anymore.
 
I'm so sorry you're having to go through all this....Hope this helps.

smilie.jpg
 
i wasnt very serious when i did it, but yes i did count

page 1
ctrl+f
thank
find next
repeat till end
next page
repeated till last page


p.s. you didnt thank me for the answer (now upgraded to 44)
 
ohhhhh.
well golly youre smart! i wouldnt have thought to do that, i probably wouldve read through all my posts.

thank you sir :)
 
Good luck Kelly. I hope everything works out this time and that everything is fine. Best of luck my. I'm keeping you in my prayers
 
thanks you three. i will post when i know whats gonna happen, but until fridays appt, i really dont know.

update:
when i changed my appliance yesterday (wednesday) i discovered that the wound around the stoma is infected.
as i mentioned in a previous post, i noticed that the "healthy"skin around the wound was hard and swollen and i didnt know what that was.
well today when i showered i pushed on it again and pus sqeezes out into the wound.
if this picture helps, the wound is like a sunken room in a house. there is a step up to the next level. the floor of the wound is raw and when i push on this "step" of skin around the raw floor, the pus come out. the skin around is very red as well, almost like, purple in some places :(.

my dad and i talked about changing the pouch daily (good call danman) and treating this wound just like we treated my mid line incision. we will clean with peroxide and pack bits of gauze with saf-gel daily.
im also gonna call the gi or some type of doc, whichever one will listen to me, and get back on antibiotics and get some diflucan to go with that so that my fungal rash progress isnt kicked away.
the more we think about it, the less keen we are on taking care of this surgically. that is just more cutting and messing around causing MORE open skin. right now that doesnt seem like a good idea to me.

we are hoping to get a consultation appt with my old surgeon at childrens hospital of philly soon. we know we can trust him to give us a thoughtful and considerative opinion and treat me as a whole person, not just an intestine.
he is also an "out of the box" thinker and has good ideas when it comes to using unconventional methods in order to preserve whats left if that makes sense.
 
I'd try not to have surgery again if I was you Kello.

It's not even the usual trails and tribulations of surgery.

I told you a story of a man that was in hospital with me recently. He had surgery again, where they moved his stoma over to his left side, because of complications regarding an abscess.

He had to have his original stoma site packed each day for weeks after to close the hole left by his stoma.
This may be unusual, I don't know. But his wife was explaining to me about his procedure. He was left with a large cavity in his abdomen, she said she could almost put her hand in it.

I'm not saying that this is normal after they change the stoma site, he had a lot of complications. But if you can fix this medically rather than surgically, all the better.

If it has to be surgically, tell the surgeon to go through all of the procedure with you. The man I met was probably an exceptional case.
 
dan, i cannot tell you the relief i felt when i just read that.
someone who agrees! thank you thank you so much.
it gives me much more strength to try and find a solution for this other than surg.

as far as i understand it IS practice to leave the old stoma site open to heal from the inside out. ive done some research, and it seems that they cant close that hole, so it has to be left and packed. theres some info about it in those links i posted for you a while back here, from the people who have had their stomas closed for takedowns.
however, large enough that she could fit her hand in there?! holy crap. my midline wound was only 2 cm deep and about 3 1/2 wide at its biggest and it in itself was awful to deal with.

in addition to all this locgial reasoning, im finding that ive already grown attatched to my little nubber where it is.
i almost cry thinking about it. i dont want them to just chop it off. to kill the poor little thing.
i dont want a "new" stoma! i like my current one right where it is :(
its a weird feeling.
 
ouch Kello, your description of your sore area was so detailed i flinched for you when i read it :( aw you poor old thing.

i also hope you can successfully treat each complication without having to go through another surgical procedure, and i hope you get some real help and support with this.

re the resiting of stomas.. it's possible they wouldn't remove any more of your intestine, just reposition it, so you'd probably have the same little guy you have now lol
 
allright seriously this time....
WHAT THE EFFFFFF?!?

im am so flaming mad and upset, i cant even

my dad hurried to get me a surgical appt today because he was so worried afer seeing the condition of my stoma yesterday. and he does not worry easily. he is the type of person who has tapes together a cut needing stitches with duct tape so that he can finish working before he goes to the ER.
so they got me in and after more EFFING qtips and screaming, honestly i was screaming this time and i yelled the eff word at him twice, he determined that i have PPG.
Peristomal Pyroderma Gangrenosum.
PPG.
yes as in the PG that mike has on his leg.
yes as in mike, kimberlie's hubby.

kill me.
seriously, i have just about had it with this whole surgical escapade.
it is an effing joke that i am living.
dammit.

he got me on some augmentin again so that it will take down the infection. shit i forgot to ask for diflucan--i just remembered as i type.
he injected some steroids all into the wound. now THAT was FUN. more effs escaped during that process.
the wound ostomy therapist lasy came back and has me using this stuff called Sorbisan. its a fluffy stuff that i have to pack the wound with to absorb and protect from the CRAP that i have draining into it from the stupid fistula that oh by the way more poo comes out of there then out of my stoma itself. i sat in the exam room for over an hour today with no pouch on, catching poop with gauze in my hand, waiting for the ET nurse to get there. and i got to see just how much pours out of the wound bed from the fistula.
yeah. great. poop in wound bed awesome.
so she pouched me again and hopefully itll be better. and ill do this every or every other day and wash it all out, depending.

obviously, he cant do a revision surgery with the site in such bad shape. yeah lets cut straight through a PG wound, good idea. and putting the stoma on my left is a last resort AND i was just researching about people with this and ALL the people that they relocated stomas for with PPG all just developed another wound at the new site. great.

i dont know what else to say.
mike, you are the man. this shit is awful, i cant even imagine for how long youve been dealing with it.

at this point i would trade back for my 20 craps a day.
 
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Kel, I'm so sorry. :( I'll be praying for you. I can't imagine how hard everything is for you right now, but hang in there. Things have gone down hill so hard, that it'll come to a point where things can only get better...So things will get better, kay? I promise.
 
thanks guys. the thoughts and concerns and support means a lot.
bah i feel so whiney in my recent posts. i hate being whiney.

heres a neck wringing bit:
since my surgery i have been searching online things like "stoma crevice' "stoma wound" "stoma crack", etc cause i have been ASKING about this crack since the beginnig and all medical pple told me it was fine
well in one of my searches early on i came across a photo on the convatec webpage of PPG.
i was like, oh my crevice doesnt look like that....so on to the next search.
wellllll now it looks like that photo. just not as big. and the description is 100% spot on how my belly looks. i found that page weeks ago!!!
arghh!
the pics online of pg and ppg are way gross. ugh, it could be so much worse, i dont even wanna whine, like i said.
but i still am.
i will try to stop.

im gonna post pics of my belly soon. if you guys dont really want me too (its kinda squeamesh to see) i wont. but hey its a part of my story, so i figured i would. i have to take some anyways cause my prior surgeon in philly wants to see lol. he was like, i will definitly see you in person if you want, but send me pics!! haha funny.
 
kello82 said:
thanks guys. the thoughts and concerns and support means a lot.
bah i feel so whiney in my recent posts. i hate being whiney.

heres a neck wringing bit:
since my surgery i have been searching online things like "stoma crevice' "stoma wound" "stoma crack", etc cause i have been ASKING about this crack since the beginnig and all medical pple told me it was fine
well in one of my searches early on i came across a photo on the convatec webpage of PPG.
i was like, oh my crevice doesnt look like that....so on to the next search.
wellllll now it looks like that photo. just not as big. and the description is 100% spot on how my belly looks. i found that page weeks ago!!!
arghh!
the pics online of pg and ppg are way gross. ugh, it could be so much worse, i dont even wanna whine, like i said.
but i still am.
i will try to stop.

im gonna post pics of my belly soon. if you guys dont really want me too (its kinda squeamesh to see) i wont. but hey its a part of my story, so i figured i would. i have to take some anyways cause my prior surgeon in philly wants to see lol. he was like, i will definitly see you in person if you want, but send me pics!! haha funny.
Click to expand...

Kelly .. even if you don't like to whine and don't normally, I think you are entitled. I think that's what everybody is here for. You've gone through a lot and obviously hoped the recent surgery would have helped things, not comlicate things more. Hopefully things clear up and are taken care of soon and you do indeed get on the road to recovery!
 
kello82 said:
thanks guys. the thoughts and concerns and support means a lot.
bah i feel so whiney in my recent posts. i hate being whiney.

heres a neck wringing bit:
since my surgery i have been searching online things like "stoma crevice' "stoma wound" "stoma crack", etc cause i have been ASKING about this crack since the beginnig and all medical pple told me it was fine
well in one of my searches early on i came across a photo on the convatec webpage of PPG.
i was like, oh my crevice doesnt look like that....so on to the next search.
wellllll now it looks like that photo. just not as big. and the description is 100% spot on how my belly looks. i found that page weeks ago!!!
arghh!
the pics online of pg and ppg are way gross. ugh, it could be so much worse, i dont even wanna whine, like i said.
but i still am.
i will try to stop.

im gonna post pics of my belly soon. if you guys dont really want me too (its kinda squeamesh to see) i wont. but hey its a part of my story, so i figured i would. i have to take some anyways cause my prior surgeon in philly wants to see lol. he was like, i will definitly see you in person if you want, but send me pics!! haha funny.
Click to expand...

You hunny, are allowed to whine as MUCH AS YOU WANT.
 
Take care Kelly...

And give your dad a shout-out from us. Sounds like he's going through an awful lot too.

Stay strong.
 
lol i will tell him you all send big hugs :) he he hows that?

yeah it takes a lot to get him, thats why i hate it when he reacts. today as i was squeezing his hand on the table, he was making "argh!" pain noises and wincing on my behalf. it mustve looked so bad, cause like i said his normal attitude toward pain is"eh get a bandaid ull be fine!".
but now we are doing ok.
we're very much the same person.
at first its like HOLYCRAP this isnt happening what the frik?!
but then we quickly calm down and get to solving the problem.
ok, this sucks. now what can we do about it.
we both go thru those stages at the same time and work really well together

i hate putting them through this. i hate that they have to hear me scream in pain :( moms and dads should never have to hear that from their own kids.
they should never have to be in a situation where theyre watching their babies go down and cant just fix it.

often, i think that side is worse than the disease itself. it makes me cry to image me being them. i wanna say sorry to them but i dont know how. and i know that they dont want me to be sorry. but its not fair. my situation causes them real pain and for that i feel awful. i know that its the pain of caring, but its still pain that i cant protect them from.
weird huh. teenager wants to protect mommie and daddy. but i do.
im crying!! what the hell??

im gonna start taking some antideppressants soon btw. im messed up. the docs all think its a good idea as my seratonin is probably plummeted off the scale after the chronic pain and narcotics ive been on.
 
Hey Kelly I'm sorry you have to go through this. You are in my prayers. I'm going to try and see if my GI can prescribe me some anti-deppressants as well when I go see him.

Remember you can post here whatever you need to, to help you get through your depression. You know I do. I think my problem is that most people don't know I have deppression because I hide it in front of them and that makes things much worse.

Feel better my friend and here are some internet hugs
 
thank you, and i do post here just to let it all out.
its really helpful.

im confused about depression, so yeah idk, idk if i even have it? but i havent exactly been myyself all the time recently. um yeahhh having extra holes in your belly can make you moody.
all i know is the dr talked to both my parents about it and its probably that most people in this case ARE depressed so they want to make sure im getting attention.
and im still happy and laughing. and im not faking that so im not trying to hide. but maybe i am depressed? i dont really feel it. i just feel sad and down and frusterated, but like, who wouldnt?! hellloooo?!!? the holes. yeah thats not supposed to be there.

huuuuuhhhhh?
i cant think.

thanks jeff, they were good hugs
 
Kello, I don't know what to say.

At the start, this procedure seemed like such a good Idea. Now.....

We're all thinking of you in Ireland.
 
Woah Kello, I go away for one week and things go crazy (or even crazier then they were before). I have to say that you are so out of my league on complications now that I have nothing to add but that I'm thinking of you and I hope you get better soon. At least it is good that you've gained 13 pounds! I gained 30 something in my first month after all my complications cleared up (of course...that was the same 25 I had lost due TO the complications, so take from that what you will).

Anyway, there is little I can say except that you should TOTALLY whine on here as much as you want. I totally understand the feeling of needing to "suck it up" so my parents and my boyfriend don't realize how bad it is or whatever, but on here we all get it. You should be as pissed off and as unhappy as you really are on here...you need a space to vent!

Good luck and I hope things start improving soon.
Erin
 
I hope you do manage to stay positive, Kello, but I can't blame you if you don't, due to what you've been through. You have such a naturally upbeat personality it would be a shame if it got to you. If you could put that positivity in a bottle I'd have some... I'm one of nature's curmudgeons
 
oh honey... i missed your latest posts till just now. i'm so sad for you.. this is so unfair!

jeez. if i lived anywhere near you, i'd be at your house right now just to give you a big hug. but the best i can do is send you a million cyber ones, and wish really hard that you'll heal soon, and stop suffering all this pain.
 
thank you everyone.

i am still positive, despite the rants and dissappointment and crying, i quickly find my groove to just start working through it. until the next bump comes along if thats how it will be.
and it may get me down yeah, but i bounce back and forth. i havent lost myself at all, im still here.
just have not been completely normal, maybe that is depression, maybe it isnt, i dont really know. random spurts of tears happen and i have no idea where they originate from.
course, it doesnt help when my dad had to go and tell me today that he isnt getting everything done he needs to cause he feels bad to leave me home alone. well, great what am i supposed to say to that? um thanks, im glad that he wants to stay home and take care of me but now its my fault that hes wasting time that he could be doing something else, stuff that we would normally be out doing together now he has to leave me for. as if i dont feel bad enough already for the choas i cause. tonight i was worried that my appliance was leaking and my first though was "crap dad is gonna be so mad" cause he and his gf were gonna go see a movie tonight and he would have had drop that to come over and be here when we changed it cause i have to do it a new special way now that my mom hasnt seen.
*spurts of tears occuring*^^
i have an appt with my regular physician next week to maybe get some antidepressants. maybe that will help me make forward steps easier.

tommorow is my first appliance change with the new pouching method.
will post about how the wound is looking, im hoping its better since the steroid injections on thursday.

feelin kinda mellow and nauseous atm.
wishing for a hug.
might go snuggle in with my mommy.....
 
Last edited:
((hug)) ((hug)) ((hug)) ((hug)).....

don't do too much self-analyzing about the tears and how you're feeling.. it's completely normal, and understandable. and as for your dad, also try and let that feeling of guilt go Kello.. none of this is your fault and your dad knows that - he sounds like a wonderful father, i'm sure the only thing he's concerned about right now is you, and getting you better. and you WILL get better. this is a really unfortunate blip on the horizon, but you'll overcome it. you'll soon be looking back on this thread and be able to measure how far you've come since it all - meanwhile, be gentle on yourself, rest as much as you want to, pamper yourself a bit, and realise how much you're cared for, not only by your wonderful parents, but us here too. xxxx
 
logo.gif


I dont do hugs with strangers but looks like you could really do with some! That's Big Clive, and he's the most huggable Bear here in the Hug - I have many Bears :eek:
 
haha aww cute! i wish i had that teddy bear in real life he looks fuzzy :)
i currently snuggle with a fluffy stuffed puppy though. my brother brought him to me when i was done with surgery. hes just the right shape to stuff under my sore tailbone from lying in bed too long too.

thanks for the hugs, and for the thoughts ding.
ill try not to be too analytical and just let myself be. im really thinking the depression has got me this time though, ive never been in this type of mood in my entire life...so lonely and isolated and hopless sometimes, yet i have family around me and am clearly talking on here all the time....so it would make sense if i have a chemical imbalance going on that is making me weird.
i feel like im in a hole that i cant crawl out of.
its only been so bad since last thursday though
ill try to just let it be what it is, and see what the doc says on tue.

my PPG wound looked a tad better today when i changed apps and showered, but then it has beed really painful all afterwards.
i started a different pain med, the other one stopped working. posted a bit about it in the pain med thread. kinda concerned about that too but argh i should stop worrying! i know i need to take them so why fret about it.
 
Kello, I just wanted to say how sorry I am to hear about what you are going through. I truly believe that you will come out on the other side of this, and in the meantime I want you to know that I am thinking of you. I think you are amazing for what you deal with every day - you are an incredibly strong woman.
 
aw thanks for the smile girl :)
your thoughts and everything mean a lot. the support is so great to fall back on, i dont know what id do without all these caring messages.
 
aw :)

well there isnt much new going on. i changed my appliance yesterday and washed, and cant really tell if the PPG was better, worse, the same, idk. its just weird....its like, tight underneath the skin like when you have an infection. really firm spots, and they go pretty far out from the wound itself which kinda bothers me and the edges of it are like grayish color and i really dont like that either.
but i think it is hurting less than before i went to the dr last week in general.

im am doing ok atm, got a good sleep last night and the pain meds are working really well right atm.
and im seeing my reg doctor today to see about the depression issues.

soooo not really much going on. just waiting
 
Hey Kelly I hope you start feeling better soon and I hope you can get a handle on the depression. You can always PM me if you need to about depression or anything else.

Pen:I just went and took that quiz and I made an 18. Good thing I'm going to my GI and psychologist next week about things. I want to be put on some antidepressant drugs and see if that helps me. Now back on topic...
 
its ok jeff, dont worry about feeling "off topic". its actually nice to have someone relate. like, sucks youre there, but idk, sometimes i feel crazy for being down. like i shouldnt be that way. idk, hard to explain.
vice versa with pm about anything, always here if you need something.

well, got a script from the doc for prozac today and took the first one a couple hours ago. he said it would take a week or so to start working, so i wont really know for a while. today was a better day though overall. not sure why. less pain maybe, either that or the pain meds were working better for some reason.
im really thinking it was last thursdays appt that killed what chemical balance i had left in me. ive been feeling crazy since then. the trauma (i dont know wht other word to use) of the pain my body went through during the visit mightve eliminated the little bit of happy chemicals i had left.
who knows i guess.
 
Jeff, Kello - i'm here with my cyber hugs again lol. hang on in there you two, you'll come out the other side of this - and you're both getting the help you need. your sun is peeping over the horizon waiting to shine on you ((hugs))
 
hey so i finally took pics of my belly just earlier!
got some great nasty photos of my wounds.
i was gonna post them, but decided to ask first if you guys even want me to?
i dont want to gross anyone out, you know, if people dont like pics like that.
thouhg i dont think there are many of us with a queasy stomach to that kind of thing :)
let me know!
 
allrighty here they are....dont look if you dont like gross things :(


PPGbig.jpg


heres one closer up:
PPGmed.jpg



the hole under my bellybutton is my mid-line incision that got infected and opened. and obviously the stoma is the red poofy bump on the left. the raw open skin surrounding the stoma is the PPG.

dont know why they came out such different colors.....im not too skilled with the camera lol

if you look in the top right corner of the 2nd pic, you can see my bag of marshmallows :D they really work at making you not poo for a short while suprisingly!
 
yup miss, they are the improved versions. that mid-line wound is much better than it was! the pic is hard to tell, but its only about 1cm deep. it was nearing 3 deep at its worst.
and the PPG, well im not sure how improved it is, but here its less swollen around the border than pre local steroid shots. a bit better color too maybe..... hard to say

lol beth flippin eck! hah thnks
 
Holy FRIK! Kell - that midline one looks like you could store your marshmallows in there!
They can't sew it up or something?
Good for you for doing as well as you are. I hope it keeps improving, even a little at a time.
(That is one HECK of a cute bellybutton though!! :) I love bellybuttons!)
Keep hangin' on girlie!! We lovz ya.
 
HAHA lmao mbh!! i could only fit one marshmallow in there, if that. maybe 3/4 of one. like i said, the pic is hard to tell, its big around, but shallow now.
hahah you cracked me up.
they cant sew it up cause thats how it got infected. it was stapled together after surgery and what happens is that the top layer of skin heals together, but the cavity fills with pus. so if they shut it, the same thing will happen again.
they said that staples get infected all the time, which really annoys me. hello if it happens all the time, then figure out how not to make it happen.

hehe im glad you can see my bellybuttonn! it was closed shut for a while cause all the swelling pulled it tight. i was like Kyle XY! just a couple days ago a noticed that it was open yayyy
 
kello82 said:
they said that staples get infected all the time, which really annoys me. hello if it happens all the time, then figure out how not to make it happen.

hehe im glad you can see my bellybuttonn! it was closed shut for a while cause all the swelling pulled it tight. i was like Kyle XY! just a couple days ago a noticed that it was open yayyy
Click to expand...

that happened to me too Kelly. Where my staples were is where the infection was. So yeah ... why do we use staples then? The incision by the abcess had less staples in it then my other incision, and he said he did thatto keep it open more so it did'nt get infected and could drain more (after they pulled the drain tubing out). I wonder why they didn't do that to yours as well???

My belly button used to be cute. :(
 
yeah i remember reading about how yours was drained in the other thread. not sure why they didnt do that for mine too, wouldve been a hell of a lot nicer! jeez.
i guess drs have their reasons though
 
Well we like to think they have thier reasons and know what they are doing. :) haha Well if you ever have to go through this surgery again (god I hope you don't!) at least you'll remember this and ask about it before hand and try to prevent it from happening.
 
hi kello,
just caught up on your story here. big hugs from this naked cowboy. you're a champ for remaining strong. we're all sending positive vibes your way. don't let this get you down.
 
thanks jed and fen :)

lol hugs from the naked cowboy?!? yyeaaaahhhhh! lmao thats a funny situation....
IF you really are the naked cowboy, then there is a picture of you with two of my friends in times square and you are grabbing their asses. care to explain, mr cowboy?? ;)
 
i dont have the pics. i missed that trip due to stupid poo problems of course :(
its just one ive seen on her facebook
 
I actually have pics. hehe Several years old .. but I have them. However, in my pics ... I don't think he got ALL the way naked .. but close enough.
 
no hes never all the way naked. hes standing in the middle of times square!!! he cant be naked. he just wears American themed man panties :)
hee hee
 
Well doesn't he play a guitar, so the undies are covered, and he just LOOKS naked? Or am I thinking of another guy?
And now back to your thread. How you feelin today Kell? It changes day by day, huh? You should post comparitive pics on a few weeks.
 
haha yep he has a guitar and a cowboy hat if im not mistaken.
idk....ive only seen him in real life once, and then the pic.....i remember seeing the back of his undies though....hmmm. but i also kinda remember thinking "OMG is he naked!?!"
fen give us the dish! are you totally naked out there or what? ;)

im doing ok today mbh :) ive been feeling a lil more uppity the past couple days. youd wanna attribute it to the prozac, but i started feeling better before i started taking it.....huh. w/e i try not to analyze it, just take the meds and not worry about it till this crap is over! haha changes day by day, its like minute to minute. ill be nice and relaxed and then all the sudden BAMM sharp shocky stabs on my belly.
but overall better, thats clear now. i realized that i no longer "feel" when i poo. ill just end up with stuff in the bag and im like whoa howd you get there??
a week ago, pooing was so painful that it woke me up from sleep. it felt horrible like a blockage in the stoma, and also burned like hell as the poo came through the fistula and into the PG wound.
im wondering if it felt like a blockage because the PPG wound was so swollen around the stoma that it was acting like a constricter, you know? squeezing it closed so that the poo got held up behind the ring of PG.
the swelling has gone down since the steroid injections, hence why it feels better?
idk just rambling random thoughts.

yep i definitly plan to post comparison pics! i even wish i had some from right after surg when the midline 1st opened up, the difference would be so clear that it is better. and even the inklings of PPG were visible wayyyy back then. yep.
 
My God Kello, I've just seen the pic's.

I knew you were having trouble with the wounds, but I never imagined they looked that bad.

No wonder your having trouble with the plaster on your pouch.

I'm sending good vibes across the Atlantic as I type.
 
Sorry kello...but eeewww. :p JK....sort of. That looks both painful and difficult to care for. I'm soooooooo sorry. I hope it improves rapidly and that things start to look up. For me, my post-surgery depression improved as soon as my health improved, and I have faith the same will happen for you. :) In the meantime...you should get super friendly with HULU. They've got the first three seasons of Buffy up there, if that's your cup of tea. ;)
 
i'm not all the way naked. just my cowboy hat and now my 3 wolf moon t-shirt. (wow...what an image that is...).

anyhoo, you sound in good spirits today. do you notice daily improvements in your post-op wound?
 

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