Surgery Time

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I don't really have anything more to add but a:hang: It'll get better :)
 
I don't really know what to say to help, but I am thinking of you. You're a great girl and a big hug to you xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
@Kelly, what do you do in order to protect your skin when changing the appliance? I have this nagging irritation and I cant get it to heal.
I change every other day
thanks
 
QuickSilver said:
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:
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thanks for that =]
see it was so different for me because my ostomy was a choice. i actually WANTED to get this surgery done by that time...so just...different. i dont really think the stoma or scars or anything affected my self esteem that much. for some months after surgery i was like...fine emotionally. well okay at least. and it wasnt until i was on that damn fentanyl that all of this emotional crap started. just the personality change and like all the sudden any fear or disappointment i ever had was magnified x1000. im discovering that many of the issues i have with myself are long long engrained in me. but this stupid drug was the trigger to bring all of these things out and cause them to stop me in my tracks.
and i do, i do push myself but for the wrong reasons. tonight was my cousins wedding reception. i had like a total anxiety attack beforehand, i have strep for f*&$#s sake, wound hurts...i just didnt wanna go. but i did. but only cause i knew i would be disappointed in myself if i didnt, i would pretty much hate myself if i didnt go. so i went to avoid that whole situation but....thats such a weird wrong reason to do things.
but i guess it is what it is for now.

it hits me sometimes too, 20 y/o, def should not have these issues. espec when im getting ready to go out with my friends or whatever and i mean typical girls getting ready routine...do the hair, try on 92384 outfits haha, makeup, change ostomy appliance. you know, standard.
lol it just hits me sometimes that my reality and "normal" is so farrrr removed from that of my peers. just weird.

anyways. these issues suck, but working on them. thats the best ya can do i guess.
 
DustyKat said:
Oh wow Kelly............I'm so sorry that I don't have words of wisdom or experience for you. :(



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
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huh. i think that would make a lot of sense. maybe i am trying to make up for something you know? since i dont feel good enough in terms of my physical capabilities, i think i feel more like a failure in that sense than i even realize. but maybe i am just constantly trying to make up for those things that happen and its like "ohh crohns has ruined it again". so then try to make everything else perfect.
maybe.
dunno.....
 
Dexky said:
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?
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thats a good idea. i mean im sure i have shared many of the same thoughts with both my psych and therapist. but alltogether like this...pretty sure thats never occured.
ive been seeing my actual psych for like....gosh idk least 6 mo now.
and have been in the CB therapy for 4 or 5 months.
 
CDDad said:
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.
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aw thanks CDD. i hate having people get emotional over me, but at the same time i know it is only out of care and thats...kind of amazing.
=]
 
Hey Kelly,

Good to see you back here. I hope you are getting by OK and things aren't getting too much for you.

Thinking about you, :hug:
Dusty
 
omg. there is a lot to say here. have been thinking a LOT like really have spent hours just staring at a wall and thinking. and so theres a lot of....thoughts hahah that have resulted.i feel bad cuz i have only been posting my crap on here recently and nothing else, sorry for that but i suppose we all do sometimes.

allright so this past weekend, thur-today, i was in the chicago area for my cousin's wedding reception. i wasnt even sure i was gonna go, with the fevers and all but in the 24 hours before flight time the fevers were bearable so i went. obviously.
anyways, so we spent the weekend mostly doing family gatherings of sorts, we stayed at my nana and papa's house so spent some quiet time there as well. i had to use dial up to get on the internet which i mean it was fine but gets annoying to be online for a long time. so when i couldnt sleep at night and didnt have internet, i spent many an hour just laying in my bed, listening to my ipod and thinking.
i mentioned somewhere else on this forum about my cousin cathy who died in a car accident when she was 19. actually august 15th will be exactly ten years. and as cathy was the grooms sister....of course she got brought up many times. sometimes in sadness and sometimes in happy stories and stuff. my aunt and uncle actually just opened her room just before the wedding celebrations. i guess when she died they just shut the door and could never go in there or move anything which is understandable i mean not really i have NO idea what that pain must feel like but understandable that they just had to ignore some parts of reality for a while. my aunt had started to go thru cathy's things a little bit, and as there were about.....7 twenty-something y/o girl cousins visiting all at once, my aunt wanted us to be able to have some of her clothes if we liked something or whatever. so that situation was incredibly emotional, more so for others than me as i never really got to spend much time with her, maybe once a year when visiting or something. some of the other girls were really close to her. and of course all the aunts were emotional as well, it was just you know...tough.
however i didnt really get emotional until that night when i was laying in bed listening to ipod and just staring at the ceiling and thinking about how she was 19 and she lost her life. and that i am 20 and i have the blessing (not in a religious sense) of...well ....life.
and it made me so sad that she didnt get to keep hers and ashamed that i have mine and im......im not even living it. i have something that could be taken from me at any moment, and i havent even been caring to use it.
and i dont know how much of that is my fault? are there things that TRULY hold me back from living life? or is that just me not....trying hard enough to get over the hinderances (is that a word?). im thinking maybe you can use your gift of life no matter what.......
its like when i see people who have their health, to me the WORLD is at their disposal. they have the ability to go and do.
and that night i realized that to cathy now, i look JUST like those healthy people look to me.
i have something amazing and im not even using it :(
and im realizing that maybe that is my fault......that i have had the ability to change my situation all along but just never looked to see what was in my own hands.
spent so much time focusing on trying to fix the bad "gifts" i was given and never just dropped them to play with the amazing gifts. i think i may have spent the past 20 years focusing on the negative in a postive way....not lamenting over the bad gifts but proactively and usually positively dealing with them. but still......that is focusing on the bad.
and that....feels terrible SO effing terrible to come to such a realization.


thats the first main thing, there is another but i will post it later, tired of typing now...
 
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Hey Kell - I think it is always good to do some self reflecting. I think it takes a truly humble person to look at themselves and admit that they can be selfish. We're all human. We can't help it! Humans are selfish. What I think is great is that you look at yourself and you're right. You can choose to live your life or decide to be miserable considering your circumstances. Some people never come to those conclusions or even look at themselves in a deeper way. No, you may not changeover night and no one expects you to. But the desire to live your life in different ways is the catalyst for those changes you seek to make!

Don't get too down on yourself about it :) You have the gift of perspective!
 
^^^^ Ditto. Marisa is so right Kelly. You are a very special person to have even reached this point as many, many don't and at a your age it is an even greater achievement. Kudos to you Kelly, you are one amazing young lady. :rosette2:

Look after yourself, you deserve it, :)
Dusty
 
thanks girls =]




allright one more spillage of thoughts and then this is the last obnoxiously long post for a while, i promise. i will most likely contradict a lot of what i just said in my last post cuz i dont even know what i think for sure i just have all these thoughts.

anyways. you know that song by O.A.R. that goes "how many times can i break till i shatter..."?
this is gonna sound so....in need of sad violin music but thats not what i mean at all, but what im saying is that i think i found out how many times. i think i shatterd. and i mean really not just broken its just you feel like you are gone. and i never felt that before in my life until these recent things, so something was sure different.
truth is we all break. everyone breaks. even if you dont think you do, you do. maybe you are like me and can put the pieces back together so quickly no one even knows you broke.
but deep deep inside of you, a scar is left on...your soul i guess idk what, just the essence of you as a person. and maybe some take years to put the pieces back together for whatever reasons, but still the pieces of you are identifiable.
but all these breaks and all these scars that we tell ourselves arent there...they weaken your spirit. and you dont even notice its easy to just continue on without looking back, but they are always there.
and there is, there is a limit to how many times you can break until you shatter. after being broken time and time again you reach a point where you soul/spirit whatever cannot withstand another break and you shatter into a million pieces of yourself that are unidentifiable as to what parts of you they are. least thats how it seems.
i feel like this is what happened because this time in my life, is really just another struggle healthwise and emotional wise but ive been thru periods like this 9048029 times before. but this time was different....far different. i dont even really know how to explain it. something just broke me for the last time. i dont even know what specifically, it was sometime after surgery but before the PG got really bad. somewhere in there, i felt myself turn into dust.
and its scary, its scary as hell to have nothing to turn to. any decisions we make anything requires us to look inward and consult our true selves but when thats not there anymore? you cant do anything. you are seriously crippled because you have nothing guiding you from inside. mind you your brain is still itself and you look at yourself and think what the hell?! why cant i do ANYthing?! and your brain can be the one to make some decisions and drive us to do some things.....but the essence of life requires not just logic but intuition. or whatever is the thing that makes each person who they are.
like when i go out and meet a friend or something....you would ask did you have fun? and my answer is always something like "yeah i mean i know it was positive..". i cant feel fun i dont think. i can know fun, but thats different.
so anyways i just feel like thats exactly what happened to me. shattered. and now, my brain drives me to FIND a way to turn this dust back into ME because i know i need to get on with life, again all logic. so thats why i started the therapy and such and i think i have made progress for sure but its like.....i have managed to recreate a few whole pieces, but i have nowhere to put them. there is no hole where they are missing from cuz there is nothing there TO have a hole in it. so i can look at em and be like "ah yes i KNOW thats who i am".....but thats different than "yes that IS who i am". incredibly different and seemingly impossible to turn one into the other.
 
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Kelly, I know this is an "easy for you to say" moment, but please don't give up on yourself. If the old you has shattered and you can't find the strength to put her back together, maybe it's time for a new you. You have so much inner strength and life experience to share!! You are an inspirational person because of all you've been through. Maybe you could work with other kids with crohns. There is definitely a place for you, you just have to find it!!
 
Kelly, I truly do know how you feel. Even though I have avoided surgery until now, my hardest years were when I was right around your age (I am 27 now). I had been so sick with my Crohns, and my life felt so out of control, that I had taught myself to feel nothing. I had laid in bed and because the physical pain and the emotional pain of what my life had been reduced to because of this disease was just too much to bear. So, I would just try to think, “this doesn’t matter” and have no feelings about anything. I didn’t even want to feel good because I didn’t want to be disappointed when my body inevitably betrayed me.

After going so long trying to feel nothing, I woke up one day to find that I didn’t know how to feel anything anymore. I felt like I was outside of my body watching my life, but I felt disconnected from it. I didn’t have new relationships and I didn’t go out, even when I was feeling well enough. I felt like an outsider. I was scared to live. I have not heard all that many people describe that feeling or know what it is like to shut down that way until I read your posts.

I had to teach myself to feel things again, but it took a very long time and it wasn’t easy. I learned that if I wanted to feel happiness and excitement, I had to feel disappointment and embarrassment too. It was like becoming fully human again. It literally took years for me to get the mess in my head under control, but I eventually did. Hopefully you can get yourself back faster than I did and not punish yourself the way I did in the mean time.

Now with the ileostomy I have been pretty good at not shutting down (boy, have I been feeling my rollercoaster emotions), but I have had the desire to put my life on hold until this is over. That might work for someone who was only going to have this for a few weeks, but my time with it is still undetermined. Also, I don’t know what life will be like without it. I can pretend that everything will be perfect, but that is more naive than someone who has gone through this disease can reasonably be. I had to make the decision (pretty much just yesterday) to live in the moment and realize that time is too precious to throw away that way.

I have made some bold steps in going back to work, despite constant leaks. I also took a trip to Alaska and got married. These were all things that I wanted to put off, but I decided that I have to live my life for right now, not for some future me who may or may not ever exist.

I have had lots of setbacks in my life, and I have been frustrated when Crohn’s has stood in my way. It took me 7 years to graduate from college, but I did it! I have lost jobs and not been able to work for years at a time, but I keep going. I had to realize that I was going to have set backs, and I am going to feel like a failure from time to time when this illness keeps me from being the person that I want to be, but it is my job to work to live in the moment no matter how much I just want to get to the next step.
I think that you were brave to go on that family trip. Even with what I have already made it through, I am still having a hard time deciding if I will go to my cousins wedding or not and risk flying and leaking again. Being the person that I want to be, brave and unflinching, takes a lot of work, but I know that I will be disappointed in myself if I decide not to try.

I have also decided not to keep my ileostomy a secret and I think that that has helped me. I kept it a secret all through high school and I think that it really hurt me is some ways. It made me feel like I had a shameful secret. I still get embarrassed from time to time, but I try to remember to never be ashamed of anything that I can’t control. Shame should be saved for things that people do intentionally wrong. People who have to go through what we all do should only feel pride in how strong we are.
I had a major emotional break down yesterday and that is going to happen from time to time and that’s okay. We deserve to feel sorry for ourselves when things are bad. Today however, I am determined to remember how much I have been through and try a little harder every day to realize that this is my life for better or worse. Time is too precious to waist waiting for the perfect day to begin again.

This isn’t really meant to be advice, just trying to let you know that there are people out there who have felt the way you are feeling and come out of it. I think that the most important thing, for me to remember at least, is that we have to live our lives the best that we can no matter what we are going through and forgive ourselves when we physically can’t do much at all. Sometimes doing the dishes is too much to ask (been there), but when it isn’t, celebrate what you have done even when it seems small.
 
Kelly...I admire you...you are my hero!

I have these words written in my diary on my desk
and at my lowest points I read it...over and over..
just wanted to share them with you...

"In my own worst seasons...I've come back from the colorless world of despair
by forcing myself to look hard, for a long time,

at a single Glorious thing~ a flame of red geranium outside my bedroom window..

and then another~ my daughter in a yellow dress.

Until I learned to be in love with my life again.

Like a stroke ...victim retraining new parts of the brain to grasp lost skills,

I have TAUGHT myself Joy, over and over again..."

Sending out many many gentle healing hugs to you~Nancy
 
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dexky, jers, and nancy thank you for the encouragment to keep going. and for reminding me of the good parts of me. xox



super quickie update here, saw my derma last week and again no active PG but no healing either. plan is:

-supplement iron, b12, and zinc in hopes that will help the oxygen flow in my blood. and zinc is part of wound healing or something idk..
-hyperbaric oxygen therapy. hopefully ill have an appt for the beginning of sept.
and if all that fails
-possible surgery to do skin grafts onto the wound. hopefully we will not have to get to that option though....


tis about it for now. no appts or anything for a few weeks as im going camping with my fam leaving next week. looking forward to it in a way but also nervous in a way that im just gonna feel like shit. the past few days have not been good.
but, that is in the future and i am now going to ignore that.


again, thank you to everyone who has posted and replied to me on here. so many long and thoughtful posts and that kind of means the world to me. still trying to reply back to some...a little late but hopefully will happen lol.
 
Hey Kelly glad to see you have an action plan! I hope you mean camping with a/c and running water!!! It's been too hot to sleep in a tent:). Feel better Kelly and try not to stress over it. Stay positive!!!

Nancy Lee...that's a beautiful poem!! Did you write that??
 
Thanks for the update Kelly,

I was wondering what was happening with the hyperbaric therapy, hopefully the supplements will kick in and do their job.

Ahhhh, you're a better woman than I........camping isn't my thing. :eek2: I'm sure you will have great time with your family, I'm so happy for you!!!! :):):):):):) Keeping my fingers and toes crossed that all goes well.

Look after yourself mate, :hug:
Dusty
 
kello82 said:
-supplement iron, b12, and zinc in hopes that will help the oxygen flow in my blood. and zinc is part of wound healing or something idk..
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You probably aren't able to do this, but I thought it was worth a shot just in case. When I had a mole removed, the doc had me massage it. I think it was to keep it healing flat, but that reminded me - doesn't massage bring more oxygen to that area? Would massaging your area that needs more healing help anything?
 
not gonna say much as i dont really feel like tying atm, but wanted to give a quickie update here.

GI appt today...less than ideal. i mean i am not spectacularly worse but i have lost a few pounds and freaking shitting out the mucous of my colon every 2 seconds. well not that bad, but its a lot and horribly crampy.. been spending some considerable time in the bathroom for someone who doesnt even take a poo anymore....

so based on that like pretty much he wants me to have the full proctocolectomy. like now. doesnt want to wait and take the chance that i go downhill until im half dead again before having surgery....which i understand. might as well do it while im sort of healthy?
im just scared that things will go horribly HORRIBLY wrong. again. and i will end up with MORE frakkin wounds, in addition to the one that still hasnt healed....and just fall right back down this damned hole that i have been working so hard to get out of. i mean MONTHS and months of CBTherapy and i am just barely finding myself again and i have to choose to go right back into the situation that broke me in the first place?! i mean what if pyoderma kicks my ass again, fentanyl?! again?! great lets spend 7 more months high out of my mind/wanting to die and then spend another 7 starting over in therapy from scratch.

i mean i knoowwww this isnt likely to happen. again. but it did. it DID happen to me and i dont think ever in my goddamn life have i fallen into the group of what is most likely. so why is it gonna be different this time? why will the procto a)make ALL my crohns symptoms improve, b)NOT induce another PG party fest....why? why will it work this time. it seems easier just to stay like i am because i have lived my whole life like this already, cramps, 493984023 hours in the bathroom, all the other crohns crap....ive already done it. so it seems less scary that throwing myself into a whole new world of unpredictabilities....especially when i did it once before and i got totally f*cked over....

god i dont even know. im so f*cking tired.
the weirdest thing is that what makes me so upset and makes me cry EVERY time i think about it like im typing this right now is having this done and having my lg intestine just go to a trash can somewhere because i gave up on it. its so weird how attatched you get to things that dont even matter like that but it feels like if i just took one of my cats or any other pet like whatever and just tossed it, abandoned it.
i mean really....abandoning my colon?! what the hell is that even you cant abandon an inatimate object! but i feel like i would be, one that ive spent my entire life with and worked so hard on behalf of....i have to give up on it?

ok im done i didnt even want to type this much im just whatever.

sorry for swearing so much..theres a lot of *'s i realize now lol
 
Kelly my heart goes out to you. You've been through so much already. I wish I could give you a hug but since I don't live near you I'll give you an online hug (((((HUGS))))). I'll be praying for you my friend.

If you ever need to talk let me know.
 
Hey Kelly!

I'm sorry to hear you're dealing with all this conflicting feelings. I don't want to just tell you that everything is going to be okay because that would devalidate how you are feeling. And you have every right to feel the way you are feeling! It would be too easy for me to say such a thing as well, since I've never been in your position.

What I can say is that I believe you are a very strong individual. What you've been through since your surgery has been hellish, to say the least. I'm not sure if I would have handled it as well as you have. It may be difficult and require you to go back on the dreaded Fentanyl, but the one positive to come from having a surgery is the possibility to actually start feeling better! Again, it's easy for me to say this, but hopefully you can focus on that small positive to get you through whatever comes your way leading up to and after your surgery.

I know we may not share the same beliefs, but I believe that everything happens for a reason (sorry to sound cliché). My reason for this is that the Bible is chalk full of people going through less than desirable situations. Some pretty awful situations actually. And like you they suffered through these things for years of their life. But in the end we're left with these amazing stories of prevailing in the midst of trials! Anyway, my point is not to preach at you (sorry! LOL), but to say that though you are dealing with this tremendously difficult and scary time, I know there is a greater purpose to your situation.

Regardless if we agree or not, I just wanted you to know that I am thinking about you and praying for you and sending the greatest amount of positivity I can in your direction, even when you don't feel able to look at things positively. :)

Now, I'm just babbling and I don't really know if any of what I said really makes any sense, but I'll just finish my post up with a HUG!

:hug:
 
Hey Kelly, I'm thinking about you. I don't have anything I can say to make you feel any better... but just know you aren't alone in the way you think. I often feel like many of the posts you write, I could have written myself (without many of the obstacles you've faced).

I guess what I'm trying to say is that you aren't some weirdo for feeling the way you do about your colon and about many of the other things you've written here.


.. this post took me like 12 rewrites and 45 minutes to write to make it sort of what I wanted to say. I'm not so good at putting thoughts into words... but just know I'm trying to say "I get it" without saying "I've been there".... because I haven't.
 
Oh Kello kid... I dont know what to say...

w.bear.jpg
 
I’m so sorry you are going through this. I really hope things get better for you soon and you find the right path for you. I know a lot of people on this forum are sending you warm wishes, prayers and good vibes right now. I’m not a believer so I can’t say I will have you in my prayers, but I will have you in my thoughts.
 
Kelly, I'm sorry for you!! There are no words so I won't even try. You are a beautiful girl with a beautiful spirit but you have drawn a shitty hand. I wish there was something I could do other than say good luck and I'll be thinking of you but there isn't.
 
oh kelli just want you to know that I am thinking about you. i dont know what to say that hasnt been said already, even though there is not really anything you can say. I wish you the best and hope things get better for you soon.
Take care hun you are a wonderful person

lots of hugs to you
 
Hey Kelly,

I'm not surprised that you feel this way about losing your colon, why? Because your colon is not an inanimate object, it is a living piece of you!!! and many people may find it strange when I say this but why would you mourn the loss of your colon any less than that of your arm, leg or breast.

Roo found herself in a situation where her resection was done without any warning. I really don't think she understood at the time what she felt emotionally about the operation and the removal of two foot of bowel. One day, last year, she was visiting the medical museum in a university and saw a specimen of bowel affected by Crohns disease. What happened? She broke down and she cried and cried and cried. She was crying about her Crohns but she was also crying about the bowel that she had lost and would never get back.

My heart goes out to you Kelly and my thoughts and prayers are with you.

Take care my friend, :hug::hug::hug:
Dusty
 
I can totally see how you would be hesitant to have that surgery after being through such hell with your first surgery.
I guess the question is, what if it DOES work? What if it works so well and you were like "OMG - what did I wait for? I should have done this years ago?"
Or you might have to go through this fight again, but you DID get through the fight and you could do it again if you had to. That's how strong you are.

Is the incision in the same place, or is somewhere different?

Question - since we have Crohn's forever and surgery technically isn't a cure, do they have you on any Crohn's maintenance meds or are you doing any special diet?
(I know that question sounds kinda stupid, but to just do surgery, and then let your mouth ulcers and stuff act up doesn't make sense.)

Sorry you're going through this, girly. Always thinking good thoughts for you. <3
 
I'm so sorry Kelly. But all I can say is that Dan and I had the Protocolectomy recently and it has been great for both of us. (I hope I can speak for Dan!)

I was quite happy to get my infected, inflammed, pre-cancered, nasty colon out of my body. it caused me nothing but grief. Now I'm feeling so good and free.

I hope the same can happen for you. I know the PG is a huge wild card and this is such a difficult decision.
 
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thanks for the support and love everyone. it really means so much like i cant even say. im doing allright atm, just gonna take it one step at a time....my parents and i are gonna all sit down and talk about our concerns and thoughts and just everything. see if we can really pin down how we feel about each option here. then we'll go from there.
its like....anyone ever watch those cooking competition shows on the food channel? like Chopped? its like when there are two chefs and one chef has made each dish consistently well with proper technique and presentation, but they took no risks, no creativity....just an overall well cooked good tasting meal, but nothing special. then the other chef has made multiple mistakes, made some terrible tasting food, but also made some really AMAZING things as well. they took risks, and sometimes the outcome was inedible, and sometimes it was amazingly creative and delicious.
so who wins? who do the judges choose? the chef who is just consistenly good....or the one who made some dire mistakes but also produced some exceptional results??
i feel like thats exactly what this is. i can NOT have the surgery and just be...mediocre like i have my whole life. feeling crappy or allright at best, but still able to sort of live life. or i can go for the surgery and possibly come out of it with a terrible terrible result, or maybe an amazing result.
mehhh? how do you choose that. idk.

@dreamin- lol your post made sense dont worry, i agree that there can be found meaning and positivity in everything that happens. thank you.

@katie- lol i totally get what youre saying, i have felt that before. that feeling of knowing exactly how someone feels without ever having been in that position. like an "thats how i would feel if i was him/her" kind of thing.

@dusty- thanks for telling me about roo....espec having it done unexpectedly like that, i can imagine it not really hitting you until later...and i guess youre right, i never really thought of it that way..that people who have to have amputations, i mean people can understand why they struggle with making that decision. i guess it is the same...a colectomy is just another amputation..

@MBH- i know right? thats the flip side of it, it could be the best decision ever.....and thank you, i guess if it did go wrong again i would get through it just like i did this time. it doesnt feel like i could, but when it happens i mean you dont really have a choice i guess. not sure about the incision, not sure about the stoma either. they may make me a new stoma on the other side to let this site heal? or maybe they will leave it...idk. i think if/when i do the consult with the surgeon he'll decide then. the only med im on right now is cellcept which is an immunosuppressant type thing...but other than that i am on no maintenence meds. but thats something weve been wondering, is if a med that didnt work for me in the past would have a chance of working if things werent SO bad. maybe it would be able to keep all the extraintestinal things at bay? and exactly, to do the surgery and not be able to fix all the other crohns stuff that goes on OUTside my colon, that would be so dumb...i mean what they think though is that the colon sort of is the cause of all the extra things. but key word *think*, its sort of just based on other peoples results...


allright well thanks again everybody for the thoughts and prayers and love. you all mean a lot to me as does this forum. thanks =] xox
 
I have read everything that you have gone through and I do believe that you are an amazingly strong person. I sometimes read the posts and I feel bad that I cannot put my thoughts into words. The decision you have to make is not an easy one, but I do believe that when you decide which way to go that it will be the right option for you. I hope and pray that everything works out for the best for you.
 
Hi Kello whilst I could never compare all that you have endured in a long time, but the surgery thing, when something is botched or doesn't give you long term relief, I know about that. My first resection was great, but my second in 2003 I have NEVER gotten relief, and learned to live with the pain because I have exausted all meds here.

Had scope yesterday and my Gi's recommendation is stay on lose dose Pred, until my Gp sets up another teaching Gi and\ or Surgeon for a third resection.

I still have nightmares from my last surgery and was very sick after and epidural didnt work and I got heavily infected. Old "general" surgeon was a moron.

I too am afraid to go all through that too, I was looking into surgery last year but chickened out and tried Methotrexate ,which didnt work. Cimzia isnt here and my Gi thinks after Remi and Humira failed, Cimzia probably wouldn't work. So my options are either stay on pred or surgery. My ulcers have spread alot more so I will going to my Gp and my hubby will accompany to get the rolling.

So your fears are genuine and you are so much younger and have more issues than I do, and I always thought you were one of the bravest in this forum.

Keep us updated, I wish you the best.
 
((((((((Kello)))))))) sorry I haven't been keeping very well up to date here - and just got around to reading your thread... :( :(

Like so many others here, I feel a lot of my words are useless right now, but I do have one thing to say to you ... and to thank you so very much for....

I found this site by Googling "pictures of ostomies" and it was your thread on how cloths look over ostomies that brought me here.... I thought to myself "OMG, this girl is so young, and look how SHE has been able to deal with it!! That's so awesome!!"......

So I started checking out the site more...and gaining more support from quite a few of you, but as my doctors waver back and forth over whether or not they are going to do surgery on me, and do an ostomy, the one very main thing that has kept me going is.... the pics of a young, beautiful, intelligent vibrant woman who was brave enough to take pics of herself and post them on the 'Net to show all us "old folks" that having ostomies ain't so bad....

And I find that thinking about an upcoming surgery does not scare me in the least. And I have had some fairly nasty ones...with nasty recoveries.... but it all seems to work out for me.... and if YOU can do, well dammit so can I! And if I can do it... dammit so can YOU! lol

I wish I knew where the hell I put my magic wand, cause I am running out of words and I just want to FIX things.... and I can't... but just know.... I am thinking of you, and will always be grateful to you for the support and courage you have given me....

((((((((((((((((( Kello )))))))))) big squishy hugs....

(huh...look at that....I found a few words to babble out afterall :redface: )
 
im just scared that things will go horribly HORRIBLY wrong. again. and i will end up with MORE frakkin wounds, in addition to the one that still hasnt healed.
Click to expand...

Hey Kelly,

Just a couple things I would like bring up regarding your PG.

I have just attended a wound conference and PG was discussed in one of the lectures in relation to why wounds don't heal. What was brought up was while ever you have any degree of active autoimmune disease (interestingly the three wounds shown all belonged to patients with IBD), no matter how small, wounds were unable to be healed. Once appropriate treatment was implemented to bring inflammation under control, oral and topical steroids and then ongoing maintenance if necessary, the wounds responded and complete healing was achieved.

So effectively if having surgery throws you into remission you shouldn't have the ongoing issues with PG. If surgery is not the path you choose, or it doesn't put you into remission, then if you are medicated appropriately and inflammation brought under control the PG should respond and your wounds will heal.

Dusty. :)
 
bah i always feel bad cuz you guys reply so nicely and i forget to come back and reply to your replies.
and then when i do come in to post something new thats happened i dont have time =/
i will try to remember.


but the point of this post is that i have a new PG ulcer starting on my leg again :(
that little mofo...i mean what the hell.
i noticed a red spot last wednesday, not really anything special couldve just passed for a bug bite or blemish really. but i just had the feeling like oh crap this is not cool, put some protopic and bandaid each day, but forgot to change it for a couple days so i didnt see it for a while, finally looked tonight and its a teeny bit bigger, a lot more purple (skin. dying. necrotic. dammit) with whitish/grey dot in the center (already dead skin).

i havent told my mom or dad =/ theyre gonna be so unhappy, i know it will worry them a lot......

but i already have a derma check in set for this wednesday so hopefully he can kenalog inject that little shit and take care of it before it gets bad.
it is not likely there will be just one though....

we will see.
 
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Aww Kelly that sucks. :(:(:(

I hope the derm doc can keep it in check..............................


:goodluck::goodluck::goodluck:


Take care hun, :hug:
Dusty
 
Oh no :( Boo for more PG. I agree wither others - hope the derm can inject that sucker away! I really do wonder if all these things are cropping up because of that darned colon! So annoying! (((HUGS)))
 
Out, out, darn spot!

Fingers crossed you get this under control really quickly, Kelly.
 
Kelly I'm so sorry to hear this. I'm praying for you my friend that it goes away quickly. Take care my friend.
 
well the area on my leg seems to have calmed a little bit, so thats relieving.

but not doing so good. at all.

my weight is going down steadily again, lots of cramps and time spent on the toilet trying to crap out mucous, on and off D and throwing up, and my PG on my stomach is def taking a turn for the worse. its not happy at all, it hurts a lot more, is getting all rough and jagged again, and i wanna take more pain meds but i dont because i dont want to go there again!

soooo...shit.

and im having so much trouble eating and my parents are killing me with their exasperation over it. it makes me feel like theyre mad at me. though i know theyre not really...but like it feels like they think its my fault that im losing weight. that all i have to do is choose to eat enough and ill keep the weight up.
i do, i do choose to eat. every time i put something in my mouth it is at the absolute repulsion of my body. it takes so much goddamn effort to overcome that. and you feel so alone. we were camping last weekend and had some of those like gummy peach rings you know? so i grabbed 5 cuz 5 was a serving of 120 cals so i was like ok i can do this, another 120 cals every little bit helps. it was an epic battle to eat the damn things. and everyone else in the car is just munching cuz they taste good and blah blah blah, and im nearly gagging on them like they are worms. seriously, im not exaggerating here thats hw it feels. everything inside you is like DO NOT EAT THAT, and that little tiny part of your brain that knows you have to, that little tiny part has to overcome all that.
its like....your leg is pinned under a boulder and you are ten feet from a stream, and you are about to die of dehydration. how do you survive? you have to cut off your leg. or you die. lose a leg, or die. every fiber of your being reels at the thought of severing your own leg, it is the total opposite of the actions one would take to survive, but that little logical piece that you know you must do it.....like it has to win.
and i mean yeah i know people do it, people are able to overcome such battles, but its not just a choice. the choice is the easy part. its what you have to do to carry out the choice.
and with eating you have to do it again and agian and again alllll day long. so when you do overcome one battle, like downing 5 freakin tiny peach ring gummies, it doesnt matter. all you can think about is the 7 other times that you will have to chop off your leg today.

its bleak. thats all it is.
and they dont understand that, they think i have power to change this and they dont realize that i already am....but i am putting in max effort and its still not enough. cuz they dont know what it looks like when i DONT put max effort in....so they think this is just no effort. because to them, eating 5 pieces of candy is no harder than breathing.

but if i tell it to them like this then my mom will just overreact and think im so sick im about to die, and my dad will be annoyed because i am being like....dramatic or something.

they just have no idea how much i dont show that i am struggling. my dad has said sometimes that he thinks i give in to feeling so sick and just let it consume me.
yeah you know what, it gets me sometimes, one of the times i was sitting in the car with my head down just before we went out somewhere.....true i am not a bundle of positivity right there.
but letting it consume me? my god they have no idea what that would look like. i cant believe they dont think that i fight tooth and nail for my life. i dont get it. cuz it doesnt look like i am i guess. its not visible when i do win, but when i dont...thats all they see.
i wish they could just put themselves in my place more.

and to top it all off something is going on with my dad healthwise too, something intestinal. cat scan showed swelling in his colon and they dont know if its like diverticulitis or what. his mom had colon/rectal cancer.... and as mad and as hurt as my feeling are right now, i am scared like hell.
 
Oh dear Kello. Sometimes you've just got to let it all consume you... you know, to break it rather than you. Have a good shout, scream, cry, whatever, get drunk!
Thinking of you.
 
Glad your leg is better at least, and I hope your dad's tests come back okay.
Is there ANY kind of shake or drink that you love? Can you add some calorie powder to it or something? Even a home made milkshake with ice cream or something? Seems like you're having a lot more trouble eating now than you were.
Wait! What about BACON!! (<---- said to make you laugh)

kello82 said:
my dad has said sometimes that he thinks i give in to feeling so sick and just let it consume me.
Click to expand...

This stuck out to me more than anything, Kell.
This is the complete opposite of what I see. Yeah, we can't forget we have Crohn's, even when we're in remission it's on our minds every single day. But I don't see you giving into it. You're fighting like crazy, because that's who you are.
They'll never be able to put themselves in your shoes. As much as they don't understand, we always will. We're here for you, girly.
 
I'm sorry where one thing seems to be improving, other things are declining rapidly. I really feel for you when you talk about how you wish your family would just put themselves in your place more. It's easy for family to think they know you and what you're feeling and going through, but they just don't. No matter how much time they've spent with you and helped you through some of your darkest times. I'm sorry that they've forgotten that you're trying your best despite what it seems like to them.

Hope your dad's results come back alright too. Sending lots of love and positive thoughts your way!
 
Sorry to hear all of this. I hope things are okay with your dad. The food thing can be very difficult. I remember a phase of time where I was just relieved after I forced myself to eat supper because it was the last meal of the day and I didn't have to think about food until the morning. I would be watching TV and see one of those scenes where someone is just idly munching away on something and realize I'm not even really paying attention to the show, I'm focusing on that person and wishing I could do that and feeling so incredibly envious of them. It was the first time in my life I had ever felt like that and I finally had an inking of what people with an eating disorder must go through.

Thinking of you.
 
Hiya kell, my lil cyber sista, I am sending you strength, & hope that all of these hardships can just leave you the hell alone. I have often leaned on you for strength and can only say how brave you are and that I wish I could take it all on for you so that you didn't suffer through these constant and cruel challenges. Plz remember I am only a text/call away and will always at least be able to lend and ear or a texting finger. Hang in there my friend and I hope your dad's health improves soon too. Maybe it would be helpful for you to share your thoughts and frustrations regarding the eating,pain , and struggling in a letter to them. This may at least temporarily ease your stress and hopefully help them to see that you are trying like to champ to fight as much and as hard as you are able. ((((((HUGS from Jerman))))))
 
Ok - I am not even half way through Kello's surgery postings and I am in tears. I remember watching my father come out of recovery and into his room after having most of his colon out. They told me to wait outside and they took too long so I went in...and I really wish I had not...he was just in so much pain and screaming...I can still see him on that bed. He passed away last year - 8 months after surgery - from a blood clot in his heart (thrombosis or something like that). Anyhow, just a year later and now they are telling me I may need my colon out. My worst fear is a tube down my nose and throat and that pain from right after surgery. Can anyone tell me if its much worse than a C-Section? I've had 2 of those...and I know they were painful. 4 hours is a long time to not have it under control and having someone throw a lead blanket on your abdomen after surgery - I would make sure that person is fired. I am just boiling mad about that. Imagine? Ok...back to reading...but I am not sure I am brave enough to do much more tonight...I'm glad she is being honest though...its what I need to hear. I am just curious if everyone is in as much pain. I know its not a cake walk but...why can't they give you drugs earlier so they take effect as you are coming out of surgery. I don't know why they don't. Must be a reason...
 
Ok...things are better now with Kello...I feel better...I am up to where she is waiting for the results of the MRI to see if she has another infection. I just can't stop reading this...one thing I find interesting is that some people have been offered the reversal and have declined. I am freaking out that my doctor told me, when I have my colon out, I don't have the Jpouch option. I was told that with Crohns you can't take out only some of the colon because the small intenstines can be diseased too and it will make for complications. So many on here seem to have Crohns and reversals. I know my rectum has to go too...and that is what they would use...I don't know. I've had 2 surgical consults and 2 GI consults and the first guy was ready to do the operation with Jpouch...I should have just done it when it was offered to me back when they thought it was just UC. Now they suspect its Crohns and won't do it. I do like the last surgeon though...she is at Lahey Clinic and very well respected. I had a good vibe with her too. I hope I don't ever have to see her again but if I do...she is the one. Anyhow, to make a long question even longer...I just can't imagine not wanting to reverse it if I had the chance. Is it because of the urgency of the bowel movements and not having to worry about it with the appliance? If you haven't guessed already - I am looking for something postive in having to wear the bag. Also, after surgery...does that mean no more medications? I run to the bathroom - when I have a flare - 15-20 times a day!! Sometimes not much is there but still...on prednesone its down to 4 or 5...sometimes 3 if I don't eat much and I am on it for a while. Back to Kello's story. I really pray this has a happy ending...
 
Hi spingirl....I'm one of those happy stories you've been looking for :) My bag is permanent, and I'm happy about it! My quality of life has increased 200x since getting my Oscar. I don't have urgency, pain, nausea, or any of the other fun stuff associated with Crohn's anymore. I'm also not on any meds. I didn't have any pain when I woke up from my surgery, they had already started me on Demerol by that time (although I have read that some wake up with pain, but you can discuss this with your doctor prior to the surgery and get a pain management team on your side). I was only on the pain meds for about 5 days and then I didn't need it any more. I've never had kids so can't tell you if it's comparable to a c-section or not, although I would think it would be similar since they basically cut your belly open (it's just up and down rather than side to side). But, if you're lucky you can sometimes get this op done laproscopically, so that's even better. Mine was open surgery since it was an emergency.

I hope this helps to ease your fears a little. If you have any questions, you can find me in the stoma subforum, or you can always PM me.

Good luck!
 
Hi,
I'm with Nyx here. My life only improved 199x, so Nyx has me beat. :)
Yes, the bag can be a hassle, but it sure beats being sick. And like you, I was going 15 times a day. Now I can go when I want!! So wonderful. For now at least, I am Crohn's free - or just in deep remission I suppose! For the first time in 25 years.
 
Thanks guys...I appreciate you sharing. I probably will PM you Cindy. Kids are home today - snow day here in MA. I am thrilled to hear no meds! Wow. I can't even imagine a life without meds. I could opt for surgery and my GI doc would probably be happy but I'd like to try Imuran first and see how I do...I have only been on Asacol and more recently Prednesone because of the flare. Other meds are for BP and reflux, etc. Nobody mentions reflux. Maybe its unrelated. I figure its all GI so I lump it together. I wonder...did you have to do a prep before surgery? I can't imagine why you wouldn't. I thought someone said no. I guess if its an emergency they must vac you out. I had one surgeon promise me he would not put a tube down my throat while I was awake. I fear that too. Good idea to discuss pain management beforehand. I would not have thought of it...the more prepared I am the better. I might try to go to a support group...I think I need to see some live people who are walking around and healthy. I have a feeling there are a lot more people walking around with bags than I though. I can't imagine people would know though...you would not be expecting it so you wouldn't be looking for it. Perhaps hugging people they could feel it? I'm a hugger...and that whole thing at the airport for that poor guy that had a urineary bag. Oh I cried when I heard his story. I just cried for him. Seriously...some people just don't have a clue. Do you have to take any extra measures when travelling these days? The questions just keep pouring out of me...sorry. Thanks again for both you of your responses...it really helps to know I'm not alone. I felt so bad last night reading Kello's story. She is so young...you would think it would be easier for a younger person to heal and recover. Life just doesn't make sense all the time...there has to be a reason I got this...and I am starting to feel like I need to volunteer somehow, some...way...somewhere with plenty of restrooms available!!! I face paint and do balloon twisting...I might have to see if I can find a pediatric GI ward somewhere...I'll be back later...
 
My surgery was an emergency so I obviously didn't do any prep....lol And as for travelling, I've never had a problem. I've been on planes, and long car trips since getting Oscar and haven't had anything happen. As for feeling the bag when people hug you, most people that I've talked to didn't know I had one till I told them (I tell anyone who'll listen...lol). I've been in a bathing suit and no one's known. And my stoma is BIG! Everyone else's on here are babies compared to mine...lol

Oh, and I never had to have a tube down my throat either. The worst part for me was when they put the PICC line in. And even that wasn't that bad...
 
same as my senior fellows (as they got the stoma before me), my life improved 1000%. I was in pain for over 15 year, all meds one can imagine... the works. I am free now and the bag does not bother me at all. I travel around the world and have no issues. some times I need to explain what is a stoma. as far as the tube, I had issues with that but spoke to my team and they took care of it with no issues.

I recommend that we move this discussion elsewhere so we dont hijak this post.
 
What is a PICC line? A line of any kind sure doesn't sound like fun. An emergency situation is dangerous, of course, and scary as hell, I imagine...but in some ways...do you feel like it was easier than making all of the decisions and waiting for the moment to arrive...I don't know...I sure hope I don't have to go the surgery route but then I wonder if I end up doing it...is it better to be younger and learn to deal than to be elderly and doing it...my mind has got to stop thinking of all the "what if's" and just learn to live my life and deal with it as it comes...too bad there wasn't a pill for that. Well, maybe those are the anxiety ones my DR won't give me!!! I might have to find help on the street! Just kidding...I'm too chicken.
 
A PICC line is a semi permanent IV line they put in so you don't have to drag 2 IV poles around. They can use it to administer drugs or to take blood.
 
To add to what Nyx said about a PICC line...it is a catheter. It's basically a line that they thread into a main artery so they don't have to stick you every time they need to take blood or give you medication. :) It's not too bad. I was so dehydrated when they tried to administer mine though that my veins collapsed and wouldn't cooperate. They had to cart me down to radiology so they could see on the x-ray where to move it. Once in, you don't feel a thing.
 
Not sure I see how its different from a regular IV then but maybe I had it and didn't realize the difference. Is it when they unplug stuff and then cap it and keep it in for another time? I know they used to flush something in one I had that woudl burn. I bet that is the PICC line. I have to say...I have had IV's that didn't hurt as much as the needle for the blood drawn the other day. Some have the knack and others don't and I think before they get the job they should have to draw blood on their boss! One time, I had to go in for an emergency C-section. The IV nurse was so nervous...she was feeling all around for that vein. I was like OMG...someone get me another nurse. I know now why...I was losing (and lost) the baby (at 36 weeks mind you) but I didn't know that at the time. Another nurse came in and voila. It all sucks.
 
It is similar to that, Spingirl, but they need a special team to come in and insert the catheter (or interventional radiology). A regular IV is just a smaller needle with a short catheter (a few centimeters) that stays in your arm where they attach a tube that stays in for a short period of time. The vein they use for this is peripheral or any vein that is not near the heart or abdomen. A PICC line is actually a small tube with a longer cavity that is essentially threaded through a vein in an extremity that travels all the way to the main artery near your chest and can stay in for an extended period of time (ie months). It usually has 2 tubes attached to it - one for blood, the other for medications. And yes, they flush them out every once in a while with saline water.

Here's a link that explains it better:

http://picclinenursing.com/picc_why.html

Basically, if you had TPN you probably had a PICC line inserted (TPN burns and can damage the veins used in a reg. IV). If you just had the simple hydration bags, it was most likely a regular IV.
 
Sorry...didn't meant to hijack the post. This is the first forum I have ever been on...

I will try to keep questions on the right threads.
 
i need advice...

I am new to this forum because no one I know has never even heard of a seton or fistula for that matter... I have had it in place for almost a year now. Its driving me up a wall! I feel like my fistula will NEVER heal as long as its in. The more bm's I take I feel that some stool gets in there, it hurts on a daily basis! I can't stand it. In 1 week I will have my 3rd surgery and my surgeon doesn't even know why its happening. She swears I have crohns, but all the millions of tests came up negative! I need some advice or just some comforting words! Will I ever get this damn thing taken out of my butt? Has anyone ever had a seton that worked and healed the fistula and had it taken out?
~J.
I feel bad complaining about my situation, alot of people have it alot worse than I do. But my quality of life is severly being messed with and I just need to know that this will go away!
 
I know what you mean...I feel bad complaining too since so many have it so terribly bad...but you know what? Its ok to vent here...we are all just at different stages. We all gather strength from each other and its also good to hear about some that are not that bad either...gives me some hope quite frankly. All that said...my doctor is convinced I have Crohn's and my test came back negative too. He even told me before I had it done that he thought it probably would. He told me its not uncommon that the test comes back negative for Crohn's but people can still have it. He decided, since I have had a fistula years ago (and that is not common with UC and just Crohn's) coupled with the fact that I had some sort of granuloma (whatever that is)...and I have strictures that were not cancer...he said he is conculding that it is Crohn's from all of the indications. I guess there is no really great test for it. I guess I would rather treat for Crohn's rather than not and have the situation get out of hand...but this is just my two cents. Half the time I don't know what I am talking about! I wish I knew for sure 100% because if I ever do need an operation - I would like to have a Jpouch and they won't do it if its Crohn's on me...so I am being treated with meds right now and hoping not to have the strictures get worse...Good luck to you. I wonder if I had what you are talking about. I know about 20 years ago I had a fistua operated on...and a drain thing...and its all just a blur to me now...but i just remember it was painful. That part I do rememeber.
 
Good Luck to you!! You'll probably feel better after the surgery!!! I just had mine and got a temp. bag. Things are going well so far!! Good luck! - Kt
 
hi everyone, its been forever since ive been around here. things havent been great, long story short i am looking at a full colectomy now, actually was scheduled for the surgery yesterday, but at end of last week nerves hit me and ive pushed it off till june 9th. now i am just not even sure what i think or feel.......my quality of life is crap, i basically live on percocet and just kind of manage to care for myself and what not. a colectomy should take away SO much of the pain that i feel on a daily basis, along with the constant flood of mucous that i have out my butt with no control over. seriously, i need to sleep on a towel every night even though i wear like 6 panty liners at once and one of those absorbent surgical sponge pad things. but since so much went wrong with my last surgery im obviously nervous about what will go wrong this time and if its worth it and everything. right now im not living, just exisiting. but a relapse of pyoderma or a 1 1/2 foot long infected incision....dont really sound like better alternatives to what i have now.
ive looked into stem cell stuff.....i dont know if its for me though.....even if i was 'cured' my large intestine is so permanently messed up, would it ever function again? surgeon says he doesnt think so but at this point i think they really dont know anything for sure. but it would be terrible to go thru the entire stem cell process, the chemo, everything....just to come out of it with a permanent ostomy anyways to find out my colon/rectum is too damaged to ever be repaired.

so......yeah. thats whats been going on, and now i dont know what to do, or if i should even do anything. i know its a no risk no reward thing though. but in the past my risks have not paid off really it seems, so how do you go into anything with any hope at all
 
Kello! It has been a long long time. I was wondering how you were doing only the other day (yes really!).
Sorry to hear things aint good. Dont know what else to say kid.
((((Hugs))))
Beth
 
Me too, lovely to see you again, sorry it's under such circumstances tho!
Take care, I'm sure you'll make the right decision what's best for you, you've been thro so much, hope you get a break soon sweetie.
hugs your way
xxx
 
((((((((((((( Kello ))))))))))))))) I, too, have been thinking about you - having problems with some abcesses openning up and weeping around my stoma and I was thinking to myself (on a day I was feeling rather shitty about my life I have to admit) "OMG if I feel like this with these two tiny little holes that are making my life miserable, what the hell must Kello go through with all that mess around HER stoma?!?!?"

I so wish I had any kind of advise or words of wisdom for you, kiddo, but I am at such a loss for words for you - you have been through SO much for such a young life. My motto usualy is "quality over quantity of life" - try to get life under control so you can enjoy it for now rather than what may come - but I am sure by now you are way past that point even - finding it hard to make a decision about what to do to even improve quality anymore.......

I wish I could wave my little magic wand and make things so much better for you - you hold a particular special place in my heart as it was your post (through Google) about clothing and ostomies that brought me to this site in the first place - you were such a bright light - and it hurts me to see that little light dimming....

For now, all I can say is - I send hugs and thoughts your way and continue to hope for a day that someone can take away your pain - physical AND mental....

Soft squishy hugs from The Moon......:wub::wub:
 
Sorry to hear that things haven't gotten any better for you Kello...I was hoping your absence was because you were feeling great and doing fun stuff. I don't really have any advice for you...just this thought:

“Never regret. If it's good, it's wonderful. If it's bad, it's experience.”
 
Kello, I have nothing better to add than what has already been said. I was hoping things had improved for you also since we hadn't heard anything from you lately. Really sorry to hear it hasn't.

I'll be praying for you and sending all the support your way that I can. I know this must be such a difficult decision for you. Thank for stopping in and giving us an update regardless.

:::HUGS:::
 
Oh, I had so wished things were going well for you finally.

Only you can make that decision as to what to do. But, if surgery can give you another chance to have the life you soooo deserve to live, then I can only hope it works for you.

Not every surgery can turn out horribly, although you certainly have lived through the worst of it, and then some.

If you've hit the wall, and there is no other way forward, you know what you have to do. And the only way forward is to look to the future, and hopefully your full health. All of us are with you every step of the way.

Misty
 
Hi Kello,
I've missed you around here. I'm sorry you're still having trouble - you just can't get a break.

I was just thinking that I'm glad I had the Proctocolectomy where they remove so many bad parts at once. I'll never have to worry about my colon, rectum, or anus flaring with Crohn's again. So maybe the same will work for you (at least removing the colon) - I know facing another surgery must be unbearable for you. I think you went through more than any person should have to take. But, it sounds like you have no other choice here.
I hope this time works out great for you!!
 
Kelly, no matter what else you lose, don't ever lose hope!! If you give up hope, this disease will truly have won!
 
Kelly, sorry to hear that you are not well. I had a total proctocolectomy and my quality of life is great.
Good luck with the surgery
 
Thinking about you Kello :)

I've been following your thread for quite some time, and it is very admirable the way you present yourself.
Hang in there, and please don't let this damned disease get the best of your sweet spirt!:ghug::ghug::ghug:
 
Kello, you said the 9th of June was set for your surgery. Thats Thursday, and I'm wondering how you are doing with everything? How are you feeling about things? I so want you to feel better Kello.
Huggles,
Misty
 
I'm wondering as well! I have it marked on my calendar too. If we don't hear from you, I'll be thinking about you on Thursday, regardless! :)
 
Just chiming in to say good luck Kello. Hope you proceed with the surgery and it brings you much relief.

Hang in there. Pop back in when you can - we miss seeing you around here!!

xo - Ames
 
I'm going to toss my good luck in here too! If you have the surgery I wish you the best of luck and a relaxing and uneventful recovery! You deserve it...
 
kello82
Senior Member
Hi Kello, decisions decisions. Never forget, there is always hope and light at the end of the tunnel. I will keep this short as information overload is the last thing you need immediately after surgery.

My surgeon told me that food makes a complete trip in 5 hours, he didn’t lie. Just for fun, eat some corn, butter and salt is optional and time it.
They kept me in the hospital for 7 days – after day five they took away my pain killer on demand because I was using it to get some sleep at night.
The last two days and off the pain meds, they said they were keeping me until my bowel woke up and I passed some Gas. It did and smelled like gun powder; that was weird.
I had the shakes a bit and the last day I was there, they sent me into the bathroom with a nurse present to see if I could change my pouch on my own (I passed).
Don’t be shocked the first time you see your Stoma, its bright and red looks a bit weird. You will get use to it very quickly.
After you get your strength back and begin to realize you now have control over your bathroom visits again, you will probably feel like smiling a lot.
I had a problem right off with my “Appliance”. I ended up a size too small. and my protruding stoma was breaking the seal causing leakage.
It’s a great system that works well now that it’s sized properly. For me now that the opining is large enough I started smiling again.
Try not to change the part that sticks to your body too often, My skin is very sensitive and it seemed to pull the skin more than it should.
Now the cautionary stuff. My GI told me, never allow myself to get dehydrated. I did a month after the surgery; I thought I had a bad case of the flu.
Drink plenty of liquids until your body gets use to its new plumbing, your choice. They explained that the large intestine is where a normal body extracts most of the liquid from your digested food while it sits there so the body stays hydrated. I learned the hard way. I now drink more then I did on average before the bowel removal but not crazy amounts.
Last but not least, Smell your food. Sounds crazy but I had food poisoning about 6 months out from my surgery and it wasn’t fun. My small intestine sounded like a motor. I kept filling up the pouch about every 20 minutes; it was hell until my body flushed the bacteria out of my body.
The best part, you get your life back. Good luck sweetie. I hope if do have the surgery, you do as well as I have. Robt, an old fart from Maine
 
Hey Kelly, just wondering if you had the surgery??? Yesterday was the day! I'm sure updating would be the last thing on your mind and probably impossible too!!! I hope it went well and you don't have the complications that have plagued you since your first go round!!!
 
hi everyone....you all are so sweet, ive barely been on here in the last year and you are just as caring and concerned as ever..thank you all. i do miss this place and your sweetness.
yes i had the surgery on june 9th and came home from the hospital the following wednesday, so a relatively short stay for what the surgery was. the surgery itself went extremely well...my surgeon and his laproscopic colleague were able to do the entire surgery thru my existing stoma site, so luckily i wasnt opened up through a midline incision. my stoma is now on my left side and my right side is sort of a wreck.....after the surgery they had stiched me up quite nicely for how big a wound was there. but did warn me that it was likely that the stiches would open up. in the surgery they discovered that my tissues and abdominal wall were literally falling apart and my stoma was prolapsing over the past few months as my abdominal wall opened up. as a result they did not have much strong tissue to sew together and said it was likely that it wouldnt stay closed. and it didnt....i now have two open wounds on my belly...but neither are very deep and hopefully will heal soon.
problem is that my new stoma has already started to develop Pyoderma Gangrenosum again. amazing how immediately it started. i felt the pain the very day i left the hospital but thought it was just pain from the stitches. few days later i discovered the beginnings of the PG during a pouch change. so i have been put on a quick 10 days of prednisone to hopefully stop that crap in its tracks. a local steroid injection or cream would be better and worked very well around the last stoma, but they said it is too soon after surgery to be putting steroids directly into contact with a fresh stoma wound like that. sooo hopefully the systemic approach will work. im pretty worried....i mean the docs were pretty sure that the removal of mass of inflammation of my colon would take away the risk for pyoderma to develop again. i guess not? gah i dunno.i just dont even know.
but i cant regret any decisions. my colon absolutely HAD to go. from cheif of colon/rectal surgery at mt sinai hospital in NYC i got the "worst ive ever seen" award. yay. same sentiment from my gi. i asked what it looked like, i wanted a picture but i forgot to ask. but he said it looked like it was beaten with a hammer. i mean...its just ridiculous what our bodies do to themselves. and i cant regret deciding to move my stoma to a fresh site....if i had left it where it was i would likely have ended up in emergency surgery a few months down the road when my abdominal wall around the stoma finally collapsed to a critical point. so that HAD to be moved. but still its hard to feel better now with PG pain and open holes in my tummy again where as before surgery i just felt slight wound pain and colon pain. i dont know.
anyways. so thats whats been going on. i hope to be getting out some pms to some of you guys, hopefully ill do that soon ok?
love you all, thanks for always being here, even when i havent been. you are great people and friends.
 
Kello so happy to hear from you! I'm sorry you got the dreaded PG!

Why if I may ask was your abdominal wall 'falling apart' as well? And egads more open wounds for you. Honey, you are one tough cookie. I'm sure hoping you get thru this again without any more complications than you have already had!

All toes and fingers are crossed over here. Stay strong gorgeous!
:ghug:
 
Hey Kelly!

Thanks for updating us on what's been going on with you. I'm glad you decided to go ahead with the surgery and get a fresh start for your stoma! I'll be praying he PG stays away this time! Hopefully those steroids will do the trick. I can imagine the worry you would have, considering all you have been through.

Really hoping that nasty colon was the reason your poor body was having trouble healing itself and now that it's out recovery won't be as difficult this time around.

You are amazing, Kelly! :) Hang in there.
 
Kello! so good to see you around. Such mixed news... Hope you can kick the PG and everything heals up this time nicely.
 
Glad to hear from you Kelly!! Sorry to hear about the damn PG though. Hopefully they caught it soon enough and the steroids will stop it in its tracks! Good luck with the rest of your recovery :)
 
Hey Kello,

Phew! So relieved to hear that all went relatively well. I hope the Pred does the trick with the PG and it allows you to finally heal hun, you have more than enough and it's your turn now for some very much needed luck and relief.

Sending you mega loads of love, squishy hugs and healing thoughts...:hug::hug::hug:

Thinking of you mate, :Karl:
Dusty. xxxxxxxx
 
Hey kelly, best of luck with your recovery! I hope the pg will go away.
Who was your surgeon at Mt sinai?
 
Hey Kello, sorry to hear about all the problems and "bad" award that you haven been given. Hopefully, everything will now turn out ok and you will feel your old self soon.
Take care, stay strong and have a speedy and full recovery.
 

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