Surgery Time

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I think we are all Kello fans. You can't help but get caught up by her strength and bravery. When I was looking at the prospect of an illieostomy leading up to surgery Kello was my Role Model.

Seriously Lady, your threads really help people on here. I was scared *****less and there there was your stoma peeking at me with those cute eyeballs and the Fashion for stoma thread. I didn't have to go there in the end but you helped prepare me for it.
 
Kello, I'm fairly new here. I just spent a half hour reading your post. I am sending you a prayer. You look pretty young in that photo...how old are you? Your parents must be strong. My wishes for you are for this to just go and get better. You are a strong lady. Keep posting. Peace, Sue
 
Kell -- wanted to let you know I'm always thinking of you. You're pretty much one of the toughest people I know. Hang in there. <3
 
kello if your having leakage problems. try pelican paste. it seals in everything. hope your stoma site is getting better. your midrift has healed well though
 
Hi Kello,
I'll find out Monday, but I probably have an Ileostomy coming up. Ive been following this thread. I've seen you post elsewhere, but I'm wondering how you're doing with your ostomy troubles. I hope it all worked out!
 
hey CDD, sorry to hear about your probable surgery =/

is it going to be perm or temporary?

i will be back to post a more detailed reply later, have to get offline now, i suppose i am due for a stoma update anyways huh??

will be back!
 
Hi Kello,
I have Crohns so I assume mine will be permanent. Many other members here have been so positive about their stoma, so I've been following your "worst case scenario". I hope you are better! No one should go through that.
 
CDD- thanx for the kind words :) how did your appt on monday go?


ok well wow its been a long time since ive updated here. my PG is looking pretty good as of late, dont have my camera handy but will post a recent pic soon.
im on 3000 mg of cellcept/day, along with double strength roid injections and FINALLY it seems they are doing their job. ive also stopped using the adhesive on the appy back, i just leave the plastic on the flange backing and tape down the edges. it leaks yes, but is so much less traumatic to the PG to change it, so i have been able to keep it cleaner.

i actually went in to have a colonoscopy yesterday, just to see how things look in there, its nice with a stoma, you dont have to prep :)
but, when i tried to do the enema in the morning before we left, i culdnt even get the thing up in there. i knew my stricture was really tight in there, but i thought it would be ok, but no it is like a wall in there. i cannot feel any opening whatsoever, can only get in like 1 inch up. but we went anyways so my GI could look for himself, and he knew that he might not be able to get the scope in, but put me to sleep anyways cause they were gonna do an endoscopy too.
the colonoscopy failed as i figured it would, but the endosc showed ulcers back in my esophagus again, which isnt a suprise, they have been bothering me on and off. medrol pack for them.
as far as my butt, i figured i should shedule a dilation with my surgeon, but my gi doesnt think its necessary yet, like we should wait and see if it even LOOKS like ill be able to keep my colon in the first place, and if theres that chance then well work on getting it back in shape. but i guess if its just gonna come out theres no point in messing with it.
i am worried about it in there though, what if the whole stricutre just closes the entire thing off? what if it heals shut from wall to wall?? idk he said that that wont happen but....

AND i am still worried about this stupid fistula on my stoma, even after this PG is gone will i stil need a revision surgery?? can i have the fistula on there forever?? idk.

ok so that is how my body is doing, as far as my mind, not so much. for how much better my belly has gotten, my mind has not made the same progress at all. i just feel like crap all the time and a waste of oxygen. im just tired, really thats all. i hate being awake, i hate sleeping, i just hate it all. i have dreams of dying and blood and injury and see mangled screwed up people in my dreams. i dream that people die, or that my dead cat dies and then i wake up like "oh thank god its only a dr......dammit!!!"
so i dont wanna sleep and that just adds to everything i guess. the only time i feel the slightest bit of comfort is when the perc has kicked in and for a brief 30mins i feel content and at peace. im only taking perc like once a day now though, which is good cause the pain is so much better. its weird how that does not even make me feel better though.
i find myself salivating when i think of 1 year ago, in the weeks after surgery, i felt cared for and hopeful and ready to get on with life and CONVINCED that this was the end of the trouble. i felt like my fam was right there for me and proud of me even, and now i just feelk like a bother, an annoyance. i felt justified in being a bum, comfortable in the routine of healing.
its so strange. if i smell those adhesive remover wipes that i used early on in changing my appy, it brings me right back there to the early days with my ostomy and how much better it was then.
i would take that, even all the physical pain i felt, over where i am now any day. emotional pain hurts more and it just keeps on piling on...
as i said to pb4, though different cicumstance but still applicable, there is no painkiller for this kind of pain. theres no way to escape it. it gets to a point you cant even cry anymore, cause you always are only difference is no tears are coming out.
its a horrible existence and i hate it and i hate myself for staying stuck here.

anyways, ive started cognitive behavioral therapy, and i guess hopefully that will help.

we will see huh?
 
Last edited:
Hi Kello,
I'm so sorry about your troubles. I hope the therapy helps. Of course I was hoping for better news, but I suppose the reality of life is not always a fairy tail. But, please try to stay strong, things have to get better.

My surgery is scheduled for April 15th. Full Protocolectomy - removing all the bad parts.
 
Hey Kello! good on the PG! keeps fingers crossed. And really hope the therapy works. CBT is good, if anything can help I think it would be that. All takes time tho.
Hugs!
 
Dear Kello

I've seen you around the forum a few times, I only joined in Jan
What I didn't realise is how much you had been through for such a young lass ( my girl is same age)
I've read through your story, all of it, took a while, but I was captivated.
What a courageous, strong and wonderful person you are, I feel quite humble.
I really don't know what else to say to you about recent events after everything you've been through, only CBT is the way forward and I really hope it helps, I do a lot of this too in my line of work with the kids with ASD.
I am, forever, your biggest fan, pretty girl
Stay strong, stay focused (I wont insult your intelligence by saying positive)
lotsa luv
Joan xxx
 
Nice to hear from you again, Kello

Good news about the PG, not so good about everything else. I'm very sorry about that. Hope you get through this OK as you've always had such a great spirit that has proved an example to the rest of us. You have a lot of fans on this forum who will be wishing the very best for you... me included.

Try not to worry about the dark dreams... I think it's par for the course when your body's not working very well and reflects your natural anxieties. Nice to think that when you need some support from your brain it goes and plays tricks like that on you. Good luck with the CBT
 
Aw, Kello, my heart goes out to you, girl. Like Joan said, I am not going to insult you by telling you to stay positive. You have been through so much more than any one person should have to endure, especially at such a young age. No one has a right to tell you how you should feel about it. But I can't let it go unsaid, just how much I admire you as a person. I have constantly drawn inspiration from your courage. You offer advice and support to everyone. I don't think you will ever know the true impact that you have had on the lives of so many people through your participation in this forum. You are kind, smart, courageous, beautiful and funny...and we love you! Hang in there girl! I hope your CBT gives you the support you need. And don't forget, you always have us!
 
Glad that your body is trying to heal a bit more, Kell.
As for the rest of you, you'll make it through. We're all here for you emotionally, girlie. Try to remember all of the kind and supportive words you've had for all of us. Not one of us would ever think you are a bother or an annoyance. We all know how much you rock. Shadycat said it - spot on.
Always here when you need us, hun.
 
Wow kello, Glad to hear things are starting to heal up a little, but sucks to hear about the colonsocopy not giving good results. I truly hope things get better for you. If you ever need anything please let me know.
 
I like positive posts!

Like everyone else said, the emotional will come around. Unfortunately, as you said, the emotional scars take longer to heal.

I hope everything keeps looking forward for you!
 
aw god you guys make me freakin cry always!!!

CDD- thanks for the encouragemtn, pm coming your way!

thanks beth, you have always been so supportive and it means a lot :)

joan--it always means so much when someone takes the time to read this whole tale, it just means so much that you care that much to spend all that time on me, thank you for being so sweet....seriously the tears are rollin!

agent--thanks for reminding me that i have some fans :) i think i needed that

thanks for that shady, you are so sweet, thank you for telling me the good you see in me. i know weve all been there, when you cant see that in yourself, and it helps so much to have someone point it out. thanks girlie :)

MBH thnaks for the support. always, youve always been there for me. you are a great friend, luv u!

thanks for being there mark :)

lol katie i like postitve posts too! that made me laugh a little, strange though how the scars you cant see are the ones that take longer to heal huh? thanks for the encouragement, chickie


the love from you all means a lot, i will try to remember it when i am not loving myself so much. you guys are pretty much the best part of my day, always :wub:
 
Last edited:
Oh Kelly, you always make me tear up. I'm glad your PG is healing up but it sucks that your stoma is having such trouble.

You know I"m always here if you need to talk about anything. I'm always praying for you my friend. I really hope cognitive therapy works for you. It's kind of weird that while I was going through cognitive therapy I wasn't helped at all but after I quit I was able to do it on my own.
 
Kello
I'm so sorry you are having to deal with all this. It makes my problems seem soooo tiny. Hang in there and I will say a little prayer for you.
Bethy
 
Hi Kello! I too have been following your thread for sometime now. I had an ileostomy in september of 2009. Before my surgery i was very nervous and, of course, scared. You made me feel better about it. I felt inspired by your story and love how strong you are. Ive had crohns for over 25 years now, and have been through quite a bit as well.

Just wanted to say hello, and please hang in there. Take things one day at a time...think of all of the wonderful things in life. You will get through this tough time. Stay strong....and be happy.

Thanks for sharing your story with us, you've helped so many people and you're a wonderful person.
 
Yup. It happened. I'm teared up as well. Ugh .. I'm at work here! haha :)

Kello, I know you've heard it before and others have repeated it again, but you really are an inspiration to me and to many people. I have missed not seeing you around on the forum so much and always looked forward to your posts. I have followed this thread from the beginning and always get excited to see updates.

I'm very happy to see that the PG is finally getting better for you, that's a great thing!! I know mentally you are having some troubles, and I really hope the therapies work for you soon so you can get some relief. You bring so much love, support, and smiles to everybody else it's time for you to draw on our support.

I think Shady said it all that I wanted to say, but much better. :)
 
Kello! I just finished reading this whole thread (only took me 2 days! :ylol2: ). I actually had no idea it existed until recently. I knew you had a history here on the board, but never really knew much about it since I only joined in January.

You have quite the story! I had no idea when you posted your one year anniversary the other day that you are STILL trying to fully heal from your wounds! That is unbelievable! It really puts things into perspective for me. Makes things seem like not such a big deal when I hear stories like yours. It was weird as I read your story i'd look at the dates and think about what was going on in my own life at that time and thinking about what YOU were going through! I really think you are a brave young lady, as many have said, but I think is important for you to hear!

I really do believe that things happen for a reason, and your story has been an inspiration to SO many people, including me! You are NOT a waste of oxygen. I know that no one asks to go through all that you have gone through, but what a testament of perseverance and patience you have brought to us! I am really praying for your full recovery, Kello! Just know that it is okay to be down and in dark places sometimes and hope you find that this is always a place you can come to vent without restraint. You have so many people here that love and care about you :)

I just wanted to thank you for sharing your story with us. Whether you intended to or not, you are helping so many people with your experience. You are never a burden here! Good luck to you, Kello! You are amazing!
 
Kello, I just caught up on your posts. I am so happy your PG is better. Thats the good news. I am trying to send some hugs through the computer. I am going to put you in my prayers. I am sorry your mind is hurting. This is a hard disease to deal with, both emotionally and physically. I hope your therapy will give you the much deserved relief you need. ((((HUGS))) This forum is the best way to vent. The people here truly understand the struggles you have. If I missed the info, I'm sorry, but do they have you on some meds for your emotions? IT might help you too! Sue
 
today!!

today-2.jpg



and here it is at its worst-ish, 1/6, for comparison....

worst.jpg
 
WOW!.....reading and seeing are 2 totally different things!

Glad it is healing up finally - definitely showing improvement.....

Good thing I have a pretty strong stomach too - lol - I had a bite of dinner at my mouth when I opened this!
 
Hi Kelly,
I only just found this thread yesterday and I have to say that it has had me very emotional. Reading about your ordeal makes me feel absolute rage at how bloody unfair life can be. You have been through so much and you have coped so amazingly well with what life has thrown at you this last year. So I'm feeling happier to see these photos today. The improvement is fantastic. I hope that seeing it improve is giving you confidence too.
Lotsa love and hugs,
Gail
xx
 
OMG...your stoma is a baby compared to mine!! Mine seems gigantic! lol But I'm so glad that it's looking better and you're getting some results. I can't imagine how I'd feel if my skin decided to do that (I've fortunately not had any skin problems since getting Oscar). I hope you see constant improvement....your story is a true inspiration :)
 
Hi Kelly

Yes, what an improvement! so happy things are finally progressing in the right direction!
Hope also, that you're feeling better mentally wise, as well as physically?
Take care sweetie, still rooting for ya!
xxx
 
wow i just realized how many views this thread has. 17000+? there arent that many threads around that get followed so much, thanks for so much love you guys =]
i hope its helped people who have come across the thread in researching the web as well.


well ok, ive been fentanyl free for coming up on 2 weeks now! STILL having withdrawals, god who knew?! but overall better. for a couple days i ran a feever of 104 and those were a bad bad few days, but the past couple days have been kinda mellow, just hot/cold sweats, aches, and the terrible muscle skin crawling feeling that is impossible to describe unless you have felt it. but, it is good.
the pain, yes it hurts more now being off the strong drugs, but its still manageable with like 4 perc a day and so im doin ok on that.

MANY things have improved since coming off the fent, many things i didnt even know it was affecting. i think that has been a major cause of my personality change and depression.
-far less bad dreams. some still weird, but havent dreamt of horrible disasters and mangled people for a while
-appetite has been better, i find it easier to feel that im hungry and then eat something. dont really know how to explain it, its like, i was wondering if the drugs were blocking things. i could FEEL the sensation of hunger, and knew that that meant i should get food, but my brain didnt order my body to act, you know? like there was a disconnect. i was wondering if the fent could do that, if it was blocking those nerve pathways somewhere, cuz i mean thats its job, just with pain right? idk very weird
-life feels a bit clearer. i actually enjoyed a shower for the first time in a long ass time, stuff like that

:)

you really dont know how much the stuff changes you until its gone. it has been such a weird experience. i know i needed the drugs im not doubting the decisions that were made, but i mean who knew...

anyways aaaand saw the derma last week and he saw no active pg! woo!!! it looks like for now the border progression has stopped and now the wound just IS, and my body can do its job to heal without fighting with the pg.
 
Hi kelly - I am so happy you are doing better. I have been followingb your thread from the begining and you are such an inspiration!
yes, fentanyl side effects can be horrible. It took me a while to get over it and I lost so much weight in the process because I was not hungry.
It sounds as you are over the hump. so happy for you!!!
 
Kello--you are an amazing gal! Thank you for sharing with us...You know you can lean hard here! :) Keep on healing girl!!!! Sue
 
I remember reading this thread back in the summer and have always been following it when it's cropped up, it most certainly helped me when a stoma was a prospect, thank you for that :) Jeeze after its all healed up you're guna be pretty much bulletproof! lol Hope its only good news from here on :)
 
Yay Kello!! I'm soooooo happy to hear this great new post from you. It's great to see and hear you feeling and acting normal again. I'm glad you're off the fentyl and feeling human again. Great steps in the right direction!!
 
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.
 
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!
 
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
 
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.
 
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.
 
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
 
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!!
 
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.
 
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?? :redface: )
 
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!! :D

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.
 
kello82 said:
today!!

today-2.jpg
Click to expand...


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. :D

NEWWW.jpg
 
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.
 
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.
 
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 ((:)hug:))) your way.

Take care,
Dusty
 
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...
 
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!!!
 
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.
 
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
 
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!
 
CDDad said:
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...
Click to expand...

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.

:)
 
My Butt Hurts said:
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!!!
Click to expand...

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 :D
 
Dexky said:
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.
Click to expand...


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:
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.
 
hi dusty!

eh it is going ok. atm its just kind of hanging in there, not really healing but not getting worse really either? it is just at sort of a weird standstill.
painwise its not too much of a bother though, so thats good. still sometimes it hurts like hell but at least its not all the time anymore, i am happy about that.

last time i saw my derma he suggested the hyperbaric oxygen therapy. i remember a while back mike/kim posted about it, he tried it with not much success, the PG just came back.
but since my PG doesnt really seem to be actively inflamed anymore, he is thinking that the HBOT might help my body jsut close this wound.
dunno have to do some research as far as centers in my area for this, cuz i cant be going down to NYC every other day lol.

thanks for checkin in on me! =]
 
Dexky said:
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.
Click to expand...

yep you are totally correct about that, that having poo leak on the wound is not helpful! however there is really not too much i or the docs can do about it you know? for a while i was going all over the place trying to find somebody who could tell me how to pouch this thing. to a)dress the wound, b)pouch the stoma, and c)take into account the fistula that i have under my stoma.
and pretty much, no one could help. there are people who are wound care specialists and there are people who are ostomy specialist but no one knew enough about the two TOGETHER to effectively help me, so my parents and i set about engineering things ourselves lol.
i have a shelf full of supplies from these attempts hahah.

sometimes the leakage was a huge problem and sometimes it wasnt, it was always changing.

buit right now, its actually doing pretty well. the wound stays suprisingly protected from poo and everything, when i go to change my appy usually the woundbed is clean except for the mucous and stuff from the wound itself, so thats really good. it does leak relatively quickly, i only get about 2 days wear time out of it, so i change the thing every other day and clean it and such.
its kinda weird, i mean rarely do i use soap or anything to disinfect the wound and you would think that it would be inevitable that this expanse of open skin would get infected but it never has.
kinda strage, not sure if its used to its own bacterias or what.

so ANYways, conclusion is, no i dont get a GREAt seal from the flange, but its good enough to protect the wound pretty dern well. i just change it more often that your avg ostomy needs to be.

and i thank you for your concern, it means a lot :)
 
It's good that it's not deteriorating but frustating for you that it's just standing still. Hyperbaric sounds promising especially if somewhere close has a chamber. I guess if it doesn't work it's not going to harm you either so it's worth a try.

:goodluck::goodluck::goodluck:


Look after yourself,
Dusty
 
Hey Kelly,

Thanks for the update. I was wondering how you were doing. I'm glad things aren't getting worse but I'm a bit upset that things aren't getting better. I will continue to pray for you my friend and I hope soon you can get that appy sticking perfectly on perfect skin. Take care and I really hope your wound heals up soon.
 
Hope everything continues positive for you and that you heal right up with no more problems. You're way too cute and sweet to have all these problems.:(
 
Glad to read that things might be stabilizing for you Kello :) was thinking the other day that we hadn't heard much from your thread on how things were going for you, totally forgot a lot of threads had be relocated woops lol
 
kello82 said:
last time i saw my derma he suggested the hyperbaric oxygen therapy. i remember a while back mike/kim posted about it, he tried it with not much success, the PG just came back.
but since my PG doesnt really seem to be actively inflamed anymore, he is thinking that the HBOT might help my body jsut close this wound.
dunno have to do some research as far as centers in my area for this, cuz i cant be going down to NYC every other day lol.
Click to expand...

I think you should try it, Kelloy! Even if it heals you up a bit, it might be worth the time to go. Or maybe it will work REALLY well!

Ha! I typed Kello then tried to change it to Kelly but it didn't work. I kinda like it!
 
@dusty- thanks =]
im doing ok. kinda same old same old lol. PG not getting worse but not really getting better either so i dunno. in some ways i am much healthier, am a pretty good weight right now....getting to live life better. still struggling with depression/anxiety crap but aghhh i know i am doing what i can to fix that.

@claire- haha lol it took me a while to even notice that this thread was moved! i kept going to the treatment section for it lol....habit i guess :)

@MBH -bwahaha kelloy! its got a nice ring to it....kelloy...LOL. yeah i think i am going to try the HBOT thing, just have to look into where is near me i can go haha i keep forgetting to do that....
 
Hey Kelly,

Bit of a bummer that you are treading water but at least you aren't getting any worse.

Are you doing the hyperbaric treatment or did it fall through?

Sending along heaps of hugs - :hug::hug::hug::hug::hug::hug:

Look after yourself buddy,
Dusty
 
mk so today was GI appt and psychiatrist appt (not my weekly therapy, hes just the doc overseeing my treatment in that sense).

GI was....pleased? i mean he is happy that i am at a healthy weight for one. that he is super happy about. and i think just....relieved that im not perched on the brink of total catastrophe anymore. for a long time i was sitting right at the tippy top and could go either way there....but now i am more stable i guess and i think hes happy with that.
but he still continues to tell me that i need a colectomy once this PG wound heals. i dont even know what to think...i usually dont think ahead like this and just focus on the present and getting this wound to heal, so thats good i guess. i dont worry about this in my daily life. but truth is i AM worried. its like a double edge sword, i realized that the CD has caused inflammation in nearly every type of body tissue on me. eyes, nose, mouth/lips, esophagus, stomach, large intestine, rectum/perianal area, skin, joints....and now possibly my spine. he wants me to go see a rheum for that.
but ANYways....so clearly my CD is not in good shape. getting a colectomy could fix that, by taking out the epicenter of inflammation might calm the other tissues as well. but also...what if that surgery DOESNT eliminate all of those other extra-intestinal manifestations?? its like a a total effing coin flip here!!!!
AND he brought up the lovely possibility of cancer today for me, that 10+ years of inflammation, SEVERE infammation at that...puts me at a huge ass (pun intended :D hee hee) risk for colon cancer. i am 20 f*cking years old. and i am worrying about a cancer that people usually get in their 50's +.

i mean ugh i didnt mean for this to be such a whine fest but i guess i just feel really spinny and overwhelmed ish. i dont know how to plan my life, i dont know how to plan ANYthing cuz once this PG wound heals? all bets are off. like i said, flipping a coin to know if im gonna be going to the OR or just dealing with feeling shitty sick but pushing on thru life.
i just dont know.

but then on the flipside? it has been almost 2 years since i have weighed three digits! being over 100 is a huge deal. i am nearly independent again and by that i mean i can feed myself, i can get myself from place to place, i can take care of myself, etc. not too long ago i was having mashed potatoes brought to me in bed that i would just puke up 15 minutes later.
huge HUGE strides.
but yet in the big picture it feels so tiny.
whioch is why i rarely look at the big pic i guess. this is pretty rare for me to dump out thoughts like this but it happens.


and so on the psych side of things....the psychiatrist seemed pleased as well. he noticed right away that i looked healthier so that was nice. and also just hearing about how i spend my time and have been accomplishing things and working toward things....i will be starting volunteering at an animal shelter next week and it was huge for me to make the committment to do that. that is one of the hugest humps for me right now, is feeling like a complete utter failure if i dont do waht i say im gonna do. so.....i stopped saying i was gonna do things.
my mind makes things black and white. i KNOW that life is a balance of keeping commitments as well as having to break some. but for me, i have no option to break one. i think i feel severely disappointed in myself if i "fail" and i reflect that on people around me.
like for example, last wednesday, my mom was going out on an errand and said "i wouldnt mind if you emptied the dishwasher", which is like a no pressure way of saying this needs to get done but dont kill yourself over it, right? i think i hear "i WOULD mind if you DIDNT empty the dishwasher". so i committed to myself that i was going to do it, to avoid that failure. i ended up not doing it and STILL i remember this! its like...ridiculous right?

and i realized that even earlier in my life..in high school and such. i got good grades, made it into the honor society, took ap classes...all these things but i didnt do them because i enjoyed it. i never felt successful. i dont think once did i enjoy a feeling of success for getting an A+ lol. i did all of it to avoid failing. literally and in a broader sense, because to not do perfect or to not do everything i set out for was failure in my mind.

its strange but there is a HUGE HUGE difference between choosing success and avoiding failure. severly different. its like....i have chosen success by default in so many areas of my life.

and that sucks.
and i have no frakking idea what to do about it. how do you feel a feeling that you dont feel.
 
I know that I haven't had near the problems that you have had or for near the amount of time so I can't understand exactly what you're going through. I do know that it has been hell for me and in the last month, but it is getting better. I honestly feel that depression and low self esteem are a lot worse than any kind of pain we can suffer. We live in a world that demands perfection in almost nothing except our physical appearance and so when something scars you or makes you different from everybody else, its seen as a horrible thing. I know I've been super depressed since waking up with an ostomy. I never gave the diarreah or stomach pains a second thought in the last couple years and being diagnosed didn't really phase me much. I cried when I saw the ostomy. Like you, I thought I'm 21 years old and should be perfectly healthy. What are my friends going to think, new people, how am I ever going to do well with the ladies again? But I realized that most people seem to be ok with it and my friends were all super supportive and I've even begun to get used to the ostomy. I think a lot of the time we get stuck on the fact that we're not perfect or just like everybody else and we give up and lay down. I think you've just got to push yourself to get out and do things and try to be as normal as possible, even if it takes twice as much effort as anybody else. It's the only way that I see to be sane. I hope everything turns around for you and starts heading in a positive direction. You're awfully tough to have made it through this much and still be moving ahead and Im sure you can continue. Heres to happy healing:wink:
 
Oh wow Kelly............I'm so sorry that I don't have words of wisdom or experience for you. :(

its like....i have chosen success by default in so many areas of my life.
Click to expand...

Just doing a bit of brainstorming here - Do you think this stems from the fact that you have little control over your physical state.........your body. Perhaps it's not so much choosing success by default but rather an attempt to gain some control.........to feel that not everything in your life is controlled by your disease. Does failure mean that the disease has the upper hand yet again. Ugh, I don't know if this even makes sense Kelly and if it doesn't please ignore me!

Sending (((HEALING HUGS))) :hug::hug::hug::hug::hug::hug:

Lots of love,
Dusty
 
I like Dusty's thoughts there Kelly but I think you should print your post and take it to your psychiatrist. It would be a great starting point for a conversation I'd think. Maybe you've covered this ground before. How long have you been seeing him/her?
 
Kelly, you really have a gift for pouring emotion into your posts. I feel for you, and your post brought a tear to my eye (um, usually not easy to do).

I'm sorry you're going through this. The thought of more surgery must be terrible after dealing with the PG.
But, It's nice to hear you're doing better with the weight.
 
@ Kelly - avoiding failure could be a great and positive character attribute. It is the number one selection criteria for the army Special Forces selections. It does not contradict desire to succeed. I know that when things go wrong it is difficult to look at the big picture but I am reading that you are succeeding at things such as the weight gain to over 100, being more independent and managing your pain.
Before my surgery to remove my colon, I also had to deal with all kind of disasters, including some of the stuff that you are going through. In my case, the colon was my enemy and not only it caused pain, losing weight, etc, but was the source of eye infections, urinary infections, you name it. Now, 3 weeks post surgery ALL the symptoms are GONE. I read yesterday the Pathology report, and it’s depressing to think that this colon actually was in my body creating all this havoc. I hope and pray that the CD does not come back elsewhere, but I don’t worry about it and try to enjoy life to the fullest extend I can at the moment.
It is great that you starting a job at the animal shelter - it will be great for you to be around people.
 
Kelly - Wow, I read your post and thought, "I could have written this." At least about the latter half of it. I, too, grew up getting straight A's in all my classes and took AP classes and all that jazz. But, like you said, it wasn't for the pleasure of obtaining these things, but because of the pressure I felt to do well in them to not fail. Still today, I struggle feelings that I have failed since graduating college, with 2 degrees and have been able to do nothing practical with them (my husband tries to tell me that some of that is due to the bad economy, but for me it's something that IO am doing wrong). Sometimes it's hard not to feel like a failure when I see so many people from my past who weren't the best students and now they have full-time jobs in schools and different things. And I can't find the motivation sometimes to even do the things that I say i really LOVE to do.

Anyway...sorry for hijacking your thread. I just wanted you to know that I get where you are coming from because I find myself thinking the same way very often. I don't think it's necessarily a bad thing to take things slowly and focus on the smaller accomplishments if the big picture tends to make you feel worse in the long run. But who know...maybe I'm wrong. Maybe I need therapy too! ;)

Hang in there, girly! You've come a long way since I first read your post. I'll be praying for you that these good reports continue to happen with your docs. Once you arrive at that GREAT spot, it may be easier to decide on surgery and all of that stuff. :)
 
Kelly- Just like Twilight, I too have been where you are emotionally. It is easy to feel like a failure with this disease and get depressed because you can’t do the littlest things for yourself. My hardest time with this disease was when I was about your age, and I felt basically just the way you do. Sometimes I just felt like a burden on everyone and I hated that I needed so much help when I wanted so badly to be independent.

Now that I am older, I realize that everyone has trials that they go through and everyone needs help from time to time. Not everyone has to deal with a disease like Crohn’s, but everyone has problems that they can’t handle on their own, be it mental illness, financial trouble or past abuse, everyone has their scars. Even though it feels like we are sometimes, we are not alone in needing help.

I think part of the problem with this disease is the inconsistency. Some days (before my ostomy and during recovery) I felt so sick, or just so tiered that I couldn’t do anything. Others I would feel (almost) fine so it was hard to explain to some people why I could do some things some days but not others. Some people just don’t get it, and that makes it hard too.

After my surgery, I wasn’t feeling any Crohn’s symptoms any more, but I was so dang exhausted it was almost worse. Now that I am healed, I still have a bad day here and there, but for the most part I am feeling pretty good and my head is in a better place.

My goal is to hold onto my colon for as long as I can, but if it comes down to it I know that I could live with this bag forever. Like you, the thought of another surgery is very scary. The recovery was just so much harder than I expected.

I guess my point is that I have gone through hard times with this disease mentally and physically and I know I will again but if you get through the bad times there are good times too. Sometimes the bad times just last so long that you almost can’t remember what the good times feel like anymore. I promise, they will come around again.

Good luck and I hope you are feeling better soon both physically and mentally. Congrats on the weight gain! That is a really good sign! Things must be looking up. ;)
 
i think i feel severely disappointed in myself if i "fail" and i reflect that on people around me.
like for example, last wednesday, my mom was going out on an errand and said "i wouldnt mind if you emptied the dishwasher", which is like a no pressure way of saying this needs to get done but dont kill yourself over it, right? i think i hear "i WOULD mind if you DIDNT empty the dishwasher". so i committed to myself that i was going to do it, to avoid that failure. i ended up not doing it and STILL i remember this! its like...ridiculous right?

and i realized that even earlier in my life..in high school and such. i got good grades, made it into the honor society, took ap classes...all these things but i didnt do them because i enjoyed it. i never felt successful. i dont think once did i enjoy a feeling of success for getting an A+ lol. i did all of it to avoid failing. literally and in a broader sense, because to not do perfect or to not do everything i set out for was failure in my mind.
Click to expand...

This is me. This is my life. I don't know how to fix it.

Anyway... I'm really glad to hear you're not so much on the edge of that cliff... that "im okay/I'm spiraling downward" fine line walking. If anything you now have some more breathing room and you can start focusing on living and not so much on "surviving". I don't know what to say about the colectomy thing, because I'm at that same pinnacle in my life. I'm NOT ready for that, but that's what's been laid out for me. It seems like there has to be something left... ya know? I dunno.

I think when faced with large things... it is better to take them as they come. You have to. Keep on keepin on girlie. :)
 
Hi Kelley,

I am happy for you that some things have at least stabilzed for now, I hope with all of my heart that you soon get more physical progress. IMO you are an amazing Lady, with all that you have been through that you still have such a strong spirit.

Like some others have said I do not truly understand the sense of loss one must feel having to wear/tolerate any type of bag. It must be double the sense of loss having to work with this as well as having to be so strong. It really isn't fair, having to deal with so much physically as well as mentally, emotionally. Even simply the loss of vanity that a person of your age should be able to have, let alone having to always be on the lookout for the anxiety, depression dragon's that seem to lurk around the corner of our subconscious constantly.

I can certainly empathize with the feeling of failure that you are struggling with as I have felt that too at levels I didn't even know existed. Your words of compassion, courage, and kindness have benefited everyone on this forum. Please know that you are admired a great deal by a great number of people on this forum. I have been fortunate to have been the recipient of your kindness many times. You are such a bright light for so many of us lending strength and kind words- even as you continue to fight your own dragons. I truly hope and pray (in my own way) that you are soon able to feel healthy physically and in every other aspect.

I also hope for you that you are someday able to see in yourself the qualities that you show and lend to us all.
 
Kello, you're doing great. I mean that, I know it doesn't feel like that sometimes, maybe a lot of the time. But I really dont know how I would cope with all that you have been through. You have a lot of inner strength.

Getting out and about volunteering at an animal center sounds really good. Hope it works out!
 
mk i will reply to all of your guys' thoughtful posts in a bit but i need to spill. seriously. again.

mkay so went to my GI again cuz ive been running a fever since friday, its gone up to 104 so he was like come down here. had blood taken and had a throat culture like just in case i have a viral thing going on. but really dont have an explanation for it which is NOT unusual. im pretty sure it is just the CD bitching away cuz i have been like this so many times my whole life like i remember when i was 10 or 11 i was getting hella fevers with no explanation and no one knew what to do. they ended up throwing me in the hospy so they could take blood when my fever was up....i mean....totally guessing.
so anyways i dont even know what the point of this is but i think its just CD acting up just like it used to and i feel like sh*t, only difference is that i dont crap out my butt anymore.
and that makes me nervous? i guess? i talked to the doc about getting a scope done because he hasnt gotten to do one since the surg cause my stricture in my rectum is completely closed. like, completely. so i need to get that dilated by my surgeon before i can get a scope done, which isnt a huge deal just the risks for that with perforation and such are especially not appealing in the un-healed state i am in from the LAST surgery. like chances of that are rare for something to go wrong and cutting need to occur....but theres a chance.
but now i think and i think he thinks that that chance is worth it? cuz like we need to know what the inflammation is like in there....
but that freaks me out cuz if it is 10X worse...then it like needs to come out now. the colon's gotta go. but having surgery when i still havent healed is a terrible terrible idea.
so what...what happens now.

i feel like i have no options like really, just like im totally screwed no matter what.
hate it, i hate being stupid debbie downer here....
like i mean i JUST started trying to make long term plans again. this animal center thing....well now i cant really go work there till this stupid ass fever goes away.
though ive done it before...hell half out my high school years were spent at a 102 fever shivering my ass off in class and sneaking tylenol out of my bag every 4 hours.
so yea i could just push on but....ugh i dont even know.

really just venting here and wanted to post about the appt today soooo i guess thats it.
 
Hey, Kelly: I just got caught up on your last two posts. I can't imagine how hard it would be to not be able to make plans from week to week, to have surprise after nasty surprise thrown at you, and all this at 20 (I didn't even know how to do laundry at 20...okay, that's pathetic) -- but I can send you a virtual *hug,* anyway. Heck, why not another *hug.* Please don't apologize for being Debbie Downer; I think that at this point if you were smiling and talking about baking cookies for your doctors we'd wonder if you were human. Sending positive thoughts your way.
 
Kelly, I just pray you get a break, a really long, well-deserved break from all the pain and complications. I didn't grow up til my first child was born.. I was 30. Your story makes me ashamed of myself. You are an inspiration!!
 
Hey Kello - very sad post but there is always light at the end. I know that when you are at such distress it is difficult to see your way out, but you are strong and will pull through. Dealing with some of these sob doctors it is sometimes the worst part. The pg is treatable and I know a doctor in new york that could help - you can pm me and I will be happy to give you his information.
From someone that been to the lowest most desparate point more than once - there is hope - you can do it
big hug
(((((((((((((((((((x))))))))))))))))))))
 
I wish I had something more helpful to say, but I think Kelly, Mark, and Dan said it all already! I just wanted to let you know I'm supporting you over here on my end! You're a tough cookie and know you'll get through this too. :)
 
Kelly, I am really sorry that u are in such a rough spot you deserve so much more. You will make it through, I wish I had half of the courage and strength that you do. It isn't fair that someone as kind as you has to go through any of the trials that you have, but if anyone can do this you can. I wish with all of my heart that things change for the better for you really soon.. :worthy::worthy::worthy::worthy:
 

Similar threads

Anna's Bandit
Colorectal Surgeon
Replies
4
Views
1K
Anna's Bandit
Anna's Bandit
D
My IBD history
Replies
1
Views
337
valleysangel92
valleysangel92
P
How long on EEN before your child had solid motions again
Replies
5
Views
652
padrach3
P
A
Am I crazy?
Replies
1
Views
892
Opieshuffle13
O
Papantoine
Punching Crohn’s in the balls!
Replies
6
Views
263
Papantoine
Papantoine

Latest posts

Back
Top