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04-27-2010, 07:02 AM   #541
katiesue1506
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That is so incredibly exciting!
05-10-2010, 09:15 PM   #542
kello82
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hmm yesterday was my first experience with ostomy and public-ness.

i was in nyc yesterday, chelsea markets, and went to this sample sale store that the try on room was just one big room with like 8 other women in there. i had a tank top on, whihc i wear under most of my clothes anyways, ostomy or not, but some wouldnt fit right with a tank underneath and i was debating what to do.
i really REALLY wouldve felt uncomfortable about taking off my shirt.
finally (duh) i figured out to just pull my tank down but so it was still covering my stomach and then put the top over that and it was nbd, but still, it was strange to be stuck in that position.
if i didnt figure that out i think i wouldve walked out without even trying those things on.
weird.
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05-11-2010, 09:02 AM   #543
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Makes perfect sense to me, but of course I'm in the same boat as a new ostimate.
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05-12-2010, 07:55 AM   #544
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thanks CDD


boys, close your ears!

I GOT MY PERIOD!!!!!!!!
wowie...its weird becuase i was a good 105 lb when it disappeared, and am still hovering at 95, but hey whatever!
05-12-2010, 08:01 AM   #545
katiesue1506
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YAY!! But on the otherhand... boo!!! LOL
05-12-2010, 08:04 AM   #546
kello82
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hhahaha!!!

exactly.

its a good sign, but im like aw **ck at the same time...
05-22-2010, 05:43 AM   #547
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Reading over these "old" pre-op to post-op threads is like a time machine. It's hard for me to imagine what many of the people on here have been through. I feel like Scrooge, "are these things that WILL happen, or things that MAY happen?".

I guess your never out of the storm but Kello, I hope your at least in the eye.

Mark
05-31-2010, 12:05 AM   #548
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thanks dexky =]

so yesterday i weighed NINETY EIGHT freakin pounds! thats good.

my cam has had a dead battery and i keep forgetting to charge it, so i need to take a pic and post a new one, but it is still looking pretty derned good. it kinda waxes and wanes. new holes pop open, but then my body kinda does its thing and makes it healthy again. my poor little cells are deff waging war in there. good job guys!

umm other than that not too much. ive been having bad stomach pain after eating and it is deff not an obstruction or anything. in the process of figuring that out.

still struggling with depression and shit. some days are so high its amazing. and then some days i feel things that are worse than i have ever felt. its strange. but at least i am feeling things i guess.

i kinda discovered that like, all of this has just been one big coping mechanism. ive gotten very good at feeling neutral. about everything. or most things. i struggle with even figuring out things that i want! i really dont even have those feeling anymore. because if i make it so that i cant feel anything positive, then i cant feel all the terrible feelings either. if i dont expect to ever feel better or to be better in life, then i cant be disappointed when it doesnt happen you know? its not being negative. nor is it being positive. its just......neutral.
which i think is all you can do sometimes.
but now i need to START having feelings again and its hard. i dont know how to choose things, or make decisions that involve anything other than logic. ive effectively shut off that part of my brain.
06-28-2010, 07:48 AM   #549
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felt like it was time to update plus i just had a major thought SO

atm, things are kind of stagnant. the PG isnt really healing, but its not exactly active either. its a little back and forth, new patches of good skin pop up and then new raw holes pop up. went to the derm last week and had to get injections for the first time in a few months. was the first time that i had that done without the fentanyl patch AND i fugging left my perc at home, so THAT was not an experience id like to repeat.

emotion/mentally, i guess i am improving? its hard for me to tell, but i feel like i am more involved in my life. and i find myself getting really upset when i dont do anything but just watch tv or something, i start to feel really agitated and terrible about myself. which isnt good but i mean it is cuz it shouldnt feel ok to be doing nothing either. so idk.

i seem to be steadily gaining weight! yayyyy. i am around 105 lbs which is pretty dern superb.

i am going back and forth with ulcers in my esophagus and stomach, had another endoscopy recently for stomach pain after eating but he never really decided what it was and it went away on its own soooo idk. but all the extraintestinal symptoms are around, have a sore in the corner of my mouth that wont friggin go away, have one of those eye bump things that i have gotten before. just crap like that.

but overall not too bad.

NOW the thing i suddenly thought about and made me come on here and read some stuff was cuz i have had back pain recently. some of it is just the lower back/tailbone area pain that ive had for ages on and off that i *thought* was just the rectal inflammation radiating out. and then more in the past week or so my upper back has been hurting and feeling stiff. like starting just below my neck and ending about.. well ladies about where your bra crosses you back you know? it hurts to bend my head down and try to stretch it, it just feels really stiff.
SO then that made me think of the stiffness that occurs with AS and i remembered GJG's posts about it so i came and read some of that, and just googled it and it is kind of sounding very likely.
also for the past year on and off i have had a burning/stinging/numbness in either or both hip, in the flatter part below your hip bone before your thigh you know? i thought it was just cuz i was skinny and so lying on either side was pinching nerves but in reading it seems like that kind of stinging and numbing can be a symp of AS as well.

soooooo that is kind of bothering me. meh.
06-28-2010, 08:12 AM   #550
katiesue1506
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YAY for poundage!!

I hope you figure out your pains soon, or a way to make them go away!! Good luck girl!
06-28-2010, 11:37 AM   #551
donna martinez
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You are in my prayers.
06-28-2010, 01:58 PM   #552
Jeff D.
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Hey Kelly,

I hope you can get over your pains and PG quickly.

I've also had that back pain but it comes and goes on me. Last night my back went so tight I had to take a perc to relax although really it just got rid of the pain and my back was still uber tight.

I really hope you can feel better soon my friend,

Jeff
06-29-2010, 08:24 PM   #553
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Kelly, I really hope things start getting better. I think about you and Jeff a lot being so young and having to deal with so much. Hey, good to hear you've gained about 10 lbs in a month. That's got to be a good sign!!
06-30-2010, 02:15 PM   #554
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WHOOOOO-HOOOOO for weight gain Kell!!

Now what about the suspected AS? Call a doc? Wait a week or two?

Your "but overall not too bad" sounds better than your other updates. Baby steps girl, baby steps.
06-30-2010, 02:22 PM   #555
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Not to discount thoughts of AS or anything else, but are you guys (Kello and Jeff) maybe kinda sorta walking (subconsciously) hunched over? I find I tend to do this after surgery...I think it is a subconscious body response to protecting the surgery site a bit....

Just a thought....


(BTW - dumba** question, but what is PG?? )
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07-02-2010, 01:12 PM   #556
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thanks guys!!!

MBH i had a GI appt on tues so i mentioned it then and he gave me a script for an xray so well see what that says i guess? dunno really. but yeah overall not too bad is pretty dern good =]

silver yeah youre totally right walking hunched over after surg makes your back hurt a lot, for me though ive had these pains on and off for years and years, long before surgery, and nows its been over a year SINCE surgery and its the same as ever. so im kinda thinking its totally unrelated..
haha and no worries, no dumb questions! PG is short for Pyoderma Gangrenosum, basically an inflammatory and necrotic skin disease that is related to IBD. Mike (kimberlie's husband) has had it very bad on his legs for years which is where it usually shows up. for me i got the peristomal version due to my ileostomy surgery which sometimes happens.
PG is something that they really dont know a hella lot about, still a lot of speculation i guess.
you can google or wiki it might give you a better explanation and understandaing, but if you have a weak stomach dont look for images =/ there are poor poor people who have it SO bad the skin is destroyed all the way done to bone and the pics are even to me a bit frightening.

katie hahah i LOL'd at poundage! good term!!

thanks for the prayers donna

jeff i hope youre doing ok too, based on your fb updates it seems one day is ok for you and then the next is hell. i hope things will start to get easier soon.

dexky thanks for the concern it means a lot. and YES i didnt even look back to realize that it has been 10 in a month but it has i guess! that is INSANE! its so weird to think that at my lowest, i was 25 lbs less than i am now. i mean i cant even imagine having 25 lbs off my body right now. idk where it came from. creepy.
07-04-2010, 11:29 PM   #557
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today!!


heres the latest pic, from yesterday. i quoted my last pic post for comparison here, which i guess was a couple weeks ago? hmm i thought it showed the date of the post you quote but in conclusion, the FIRST pic is the previous pic i posted in this thread, the 2nd pic is from today.

07-05-2010, 12:32 AM   #558
Jeff D.
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Oh my Kelly, it looks a bit worse today then two weeks ago. I'm going to be saying extra prayers for you my friend.
07-05-2010, 01:11 AM   #559
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Oh Kelly, that looks like it must be bothering you an awful lot. Take good care, and I hope that you will see some relief soon.
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07-05-2010, 03:56 AM   #560
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The bottom pic is today?

If so, it looks much improved from two weeks ago to me. I hope more than anything that it continues that way.

Sending healing (((thoughts))) and ((())) your way.

Take care,
Dusty
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07-05-2010, 06:58 AM   #561
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Hi Kelly,
So many questions go through my mind when I see your pictures. When will that be healed? What do your docs say? And most of all, how the heck do you get a flange to stick?

This has been going on so long for you, I hope this heals one day soon. Thinking about you...
07-05-2010, 07:14 AM   #562
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The new one looks way less splotchy, so I am thinking this one is better, right?
I can't see them side by side so I scrolled back and forth like 203948 times trying to compare, lol.

In general, does it give you a lot of pain still? You're off the strong pain drugs if I remember right. The open parts around the stoma still need to heal, yes?

Keep on healing little by little girly, baby steps are better than no steps, and you are DOING GREAT!!!
07-05-2010, 02:18 PM   #563
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Hi Kelly, I know you said the docs don't know much about PG but do they act concerned about it? Are they treating it with anything?

I may be completely naive but it seems to me they could remove a section of skin around the stoma and replace it with something that could be kept disinfected and would be smooth for attaching the flanges. I don't know something like prosthetic skin that they use to wrap prosthetic limbs. I don't know if it's a possibility but it wouldn't hurt to ask.
07-05-2010, 02:26 PM   #564
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Kello! I was just wondering how you were healing. I just don't get why they can't get you some more relief! Thanks for posting! Sue
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07-05-2010, 06:40 PM   #565
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thanks everyone! i honestly cant even tell for myself if it is better or worse. its like better in some ways and worse in others you know? haha so nobody feel bad about not being able to tell LOL cuz i see the damn thing every day and i cant even make a call on it!
either way, your guys' (mbh correct my grammar GO! ) feedback is great, thank you!
07-05-2010, 06:47 PM   #566
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Hi Kelly,
So many questions go through my mind when I see your pictures. When will that be healed? What do your docs say? And most of all, how the heck do you get a flange to stick?

This has been going on so long for you, I hope this heals one day soon. Thinking about you...
as far as when? no way to predict that really. its kind of just up to my body to heal the wound and to NOT revert back to doing damage.
the reason it takes so long is because literally, it is one cell at a time. that top layer of healthy good skin that needs to form, it cant just appear, it has to come in from the borders you know? slow process.

my docs basically say what i just said lol, the meds have done their job at calming the actual active PG, so thats great. however theres really nothing they can do to heal a wound like this. so kinda wait and see but overall i mean they are happy with it.

HAH yes getting a flange to stick is a huge pain in the ass (pun INtended), it was worse earlier on when the wound was bigger. at this point the wound is small enought that the flange still sits on top of SOME normal tissue which it sticks too just fine. i stick some telfa pads (like nonstick gauze basically) over the open parts to try to keep the moisture away from the adhesive and just stick that sucker on.
i have a lot of leaks and change it like every other day minimum. but i mean compared to what it was to try to pouch this thing before, its easy peasy now. just requires more changing.

07-05-2010, 06:53 PM   #567
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The new one looks way less splotchy, so I am thinking this one is better, right?
I can't see them side by side so I scrolled back and forth like 203948 times trying to compare, lol.

In general, does it give you a lot of pain still? You're off the strong pain drugs if I remember right. The open parts around the stoma still need to heal, yes?

Keep on healing little by little girly, baby steps are better than no steps, and you are DOING GREAT!!!
hahah love your usage of the 34938020 in there HAH!
i really should put them side by side.....will work on that.

yep youre correct ive been off the major pain meds, the fentanyl, for a few months now!still take a few 5/325 perc a day and i mean some days its bad and hurts no matter what and some days, like today, it barely hurts. i even changed the dressing today and needed no pain meds.
its very strange no rhyme or reason to why it hurts or not.

and yah the open parts are what need to heal over. i mean basically it should look like just your everyday stomach right up to the stoma. i dunno that mine will ever look like that but well see.
its like, its just like the top layer of skin is missing. my body has healed the wound from the inside out but that top layer of skin needs to creep across the red underlayer.

i have to get your pic in here hee hee hee
07-05-2010, 07:04 PM   #568
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Hi Kelly, I know you said the docs don't know much about PG but do they act concerned about it? Are they treating it with anything?

I may be completely naive but it seems to me they could remove a section of skin around the stoma and replace it with something that could be kept disinfected and would be smooth for attaching the flanges. I don't know something like prosthetic skin that they use to wrap prosthetic limbs. I don't know if it's a possibility but it wouldn't hurt to ask.

hey! sorry i wasnt really clear i meant like, the medical community in general does not know too much about PG. its not totally understood as to why and how it works, just like crohns i mean really there is a lot they still dont know.
but the knowledge that IS out there, my docs know. so they know all they can know lol.
they arent AS concerned about it as they were when it was actively inflamed, now the inflammation that CAUSES the wound seems to have quieted and i am just left with your everyday wound lol. of course they want it to heal but i mean for the states they have seen me in, this is at the more positive end of the spectrum.


mhmm i thought of the same thing when this all started, i was like cant we just cut out the bad skin? but for PG cutting anywhere near it is bad. for me, it was the trauma of the surgery in the first place that caused it. if i never had the surgery, i would NOT have gotten PG. well not on my stomach at least.
so any surgical option to address this is valid yes, but i think in 99.9% of times is only going to traumatize the skin even more causing more tissue to die off for whatever reason it does.

haha i guess i picture it in my head like, trauma to the skin for whatever reason in a normal person causes the body to go whoa lets work on fixing this and all is well.
but with PG, trauma to the tissue is introduced and the body instead of going with the repair process, all it knows how to do is to start the self destruct process. for whatever reason its just confused and thinks the only way to protect the body as a whole is to immediatly destroy all tissues in the area of trauma.

yah?

no clue if that is right or not but thats how i see it in my head lol

Last edited by kello82; 07-05-2010 at 07:09 PM.
07-05-2010, 07:39 PM   #569
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Kelly do the docs not think it is made worse by leakage from the flange? Like Joe said, it doesn't look as though you could get a good seal with all that going on around the stoma. I'd never seen a stoma until you posted this so obviously I have no idea what I'm talking about, I'm just concerned for you.
07-05-2010, 07:52 PM   #570
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thanks everyone! i honestly cant even tell for myself if it is better or worse.
FWIW, appearance wise it is definitely better.
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