Kello's weekend

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kello82

kello82

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Nov 12, 2008
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kello's weekend

i apologize that this is ridiculously long, and dont blame you all if no one reads :tongue:

Well so i spent this weekend in the hospital. whole time was dying to get on the forum but couldnt figure out the wi-fi! then my dad came down and had it fixed up in 2 seconds :ybatty: im a dumb dumb at times.

for a few weeks i had been feeling pain in my throat when eating/drinking anything (talked about this in another thread somewhere), and also pain in my tummy after eating. neither of these pains were typical for me, (usually i get lower intestinal cramps when i gotta have a BM.) also wasnt having much in the way of BMs. like 10 teeny tiny movements a day, not adding up to much.
but thinking my sore throat was froma cold i kinda brushed it all aside until thanksgiving morning i ate some cereal and my stomach pain was soooo BAD i thought my insides were going to tear apart. furthermore, by that night i couldnt get any food or water down without the pain in my throat bringing tears to my eyes. called the doc friday morning and was admitted to the hospital that night. they gave me fluids cause i was seriosuly dehydrated from not being able to drink and started me on pred. they diagnosed my throat problem as the same ulcerations that show up in the mouth from crohns had spread all down my throat. am eating/drinking much better now :) had half a pizza last night :lol2:
they did some xrays to make sure my stomach pain wasnt from obstruction (thnkfully i was all clear).
Pen- get ready to say "i told you so!". the crazy stomach pains were most likely from the celebrex. arg! i stopped taking it on thurs, and sure enough the general consesus (sp?) from all the docs was in agreement. my tummy is much better now, no pain when theres food in there and i had a semi normal BM (for me at least) this morning. yay!
so frusterating though! celebrex takes care of my stupid crippling swelling, but destroys the stomach :voodoo:

whew! now im home and still taking oral antibiotics. only changes are no more celebrex! and addition of prednisone, but my doc is having me do a VERY quick run of it. only started on friday and will be done with it on wednesday. im very relieved about that.

so thats my story atm. kind of in a daze now as so much has happened.
this was also my first stay in the adult hospital! lol all my previous hospital stays i was under 18! what a differnce between the two. i might have to start a new thread about it, but seriously, the colors and pictures and fun things for the kids are so much nicer to look at :frown: i already miss it!
but then again, when youre an adult, they give you tylenol no questions asked. as a kid, this is normally a two hour process.

will most likely be back there later this week for an EUA and to have the drains and things in my butt replaced by my new surgeon that i met this morning. then next week, colonoscopy, and then probably tysabri soon after that.
i am feeling much relieved at this point. i just switched my care to this team of docs in nyc and they already have so many more options and ideas for me .

surgeon JABBED my butt today, not a good first impression, but hey i trust that hes good at what he does.

ok thats all for now :)
 
PIZZA???? :lol:
I wish I could do that....
Glad to hear you're doing better, yes, adult hospitals SUCK.
But whenever I am there (which is far to often) they're constantly
trying to shove more pain pills down me. Just want to shut me up
probably :ylol2:
Good to hear you won't be on Pred for too long, and that a colonoscopy
is scheduled soon. Let us know how it goes!
 
MINI Cooper said:
PIZZA???? :lol:
I wish I could do that...
Click to expand...

lol sorry! i feel for you, i gave up pizza and other stuff for a real long time. then i realized that my tummy hurt no matter what i ate :ybatty:
so might as well eat whats fattening and tastes good, yeah?
 
kim- nope, havent had tysabri yet. i just read mikes response in the other thread about it. sorry it made worse problems for him :( the docs i just started seeing are with the Mt. Sinai hospital, huge place though whew.

thanks for your well wishes girls :)
 
Sorry about the bad weekend, but glad you are feeling better now! I'm with you on the pizza - yummy!!!! Hope the colonoscopy goes well. Let us know about the Tysabri. I recently started Remicade, but Tysabri may be my next option if that doesn't work. Good luck!

Lisa
 
Awww, you're just a babe, never been in the gorwn-up ward before. Glad that things are looking up a teeny bit since stopping the Celebrex. Do they have an alternative for that? And JEEZ - did you HAVE to give Pen reason to say "I told you so"?? She is gonna LOVE that!! It sounds like you are in a good place now with your new teams of GIs. Yay for pizza! Feel better!
 
haha im just a baby!! lol

no alternative for celebrex for now, hopefully ill hold out until the tysabri starts which should help too.
 
kello82 said:
lol sorry! i feel for you, i gave up pizza and other stuff for a real long time. then i realized that my tummy hurt no matter what i ate :ybatty:
so might as well eat whats fattening and tastes good, yeah?
Click to expand...

I have days where I don't care what I eat either...it hurts anyway so I might as well enjoy some yummy food.
 
Hey Kello,

Glad you escaped! I was in Thurs - Sun too and was glad to get back to my own wee corner.

Agree with you on the food front sometimes nothing makes any difference at all does it so may as well eat what you enjoy and pay anyway!

My rheums and gastro both agree I have to stay away from anything that has the potential to cause ulcers meds wise like the Celebrex and its why they went for Methotrexate as it will help both conditions on top of my Remicade. Maybe something for you to think about??

Hope you are feeling a bit better honey. Thinking of you ((hugs))
 
omg **realization!!**
i never even thought of the fact that the Celebrex probably made my throat flare as well. but now that you said that Jan, the start of the pain coincides perfectly with when i started the med! ugh i had no idea that it could cause ulcers and stuff. and no one in the hospital said so either, just that it could make stomach pain worse.

Kim, yep ive already been on remicade. i took remi and methotrexate together and those few years were the closest to remission that ive ever gotten. i stopped responding after a few years though.
 
Kello, sometimes you just cant see the wood for the trees because you are so close to it.

But that is why your teams should be looking out for you as mine are doing! My asthma/allergy consultant wanted to take me into hospital for a few days and run tests to see whether my asthma and skin deteriorated with Non steroidal and aspirin related meds.

My Rheums doc wrote to him and said no way - dont even think about it and my gastro team were up in arms saying "please tell us you wont do this you are at risk of your crohns getting much much worse!".

I learnt my lesson a couple of year back with my asthma/allergy consultant agreeing to let his registrar run a histamine breathing test (because he was saying I wasnt asthmatic, never mind allergic asthmatic at all and he had taken more patients off needless steroids than I had had hot dinners - arrogant eh? lol) which caused such a severe asthma attack the "team" were almost called and the respiratory team running the test were really angry wanting to know what "twit" ordered the test. Once they realised it was this reg they said "lord not him again, we will have to sort him out!".

Both Gastro and Rheums tell me that research shows Remi and Metho work very well together Kello and they are hoping it makes a difference to me. Fingers crossed eh?

Keep asking questions Kello, dont let ANY of them away with anything until you know for sure yourself ok? Its YOUR health and YOUR life honey. YOU are the one living with it 24/7 not them!

((hugs))
 
just an update in whats going on

tommorow-have outpatient surgery to have the drains replaced for the abcess. it seems to be collecting again, my fevers have been over 102 for a few days now. :ybatty:

wednesday-iron infusion #2. and klean prep day

thursday- you guessed it! colonoscopy time. oo yay. hopefully this will give some good info as to whats going on though. im kind of nervous as to what theyre gonna find. i havent been scoped since diagnosis 9 years ago. i cant help but be scared as to what i must look like in there now. i know it doesnt help to stress about it though, its not gonna change anything.

after getting all checked out this week the plan is to start tysabri next week unless something unexpected comes up.

blah i dont even have the energy to shower, much less get thru this week. my mom or dad will be with me for it all though. i just wanna start feeling better......
 
lots going on! good luck!
I could use an iron infusion myself...

Keep us posted on how it goes!
Oh, and like my shirt says:

17055017v2147483647_350x350_Front_Color-YellowGold.jpg

:)
 
Awww, Kello - what a crappy week!
I hope those drains make you feel a bit better though.
Uh - isn't the "going" so much gonna bother your new surgery sites?? Just thinking here.
Good luck! Post when you are feeling up to it.
 
aw man! i hadnt even thought of that.

booo the stitches always are sore the next day but its bearable, no pks necessary lol. but with loads of D from the prep, ughhh thats gonna sting a tad i believe.

i think my gi wanted to do this order though so that the surgeon could make sure that my stricture is dilated enough for the scope to be ok. i wonder if he thought about the soreness factor though. huh.

oh well. guess ill find out!
 
ok so surgery today started out rough, but then got better. i shall tell :D

was in so much pain and so exahausted that i had could barely evenwalk waiting room to waiting room. too tired to even fill out the paperwork. finally got back into the assesment area and got a short nap in an uncomfy chair. they didnt even have pillows back there. (WHY did i leave pediatrics again?? i deff get mistaken for being 12 often enough anyways).
then got wheelchaired upstairs to the pre-op area, movement from sucky chair to wheelchair made me have to poo immediately (despite 2 enemas hours beforehand) so the lady had to runnn me thru the pre-op room LMAO. i felt bad for her, she was new too. but i made it, didnt ruin my lovely gown yay.
oh, and at this point they declared me a minor, so mom was allowed to come with me to both pre-op and recovery :)
moved from wheelchair to bed. still no pillow (WTF?!). then finally got wheeled into OR.....
oh wait no i didnt. they wheeled me to the outside of my OR and then i had to get up and walk into the room. like, what? is this common? maybe im just spoiled or something and im not used to them making you do stuff yourself. and the bed thingy inside wasnt even ready so i had to stand there 5 mins and wait, trying not to poo all over the floor or fall over.
finally lie down, they start to scout for iv sites, i had told them that iv anesthesia is preferable the mask makes me sick sometimes.
he stuck me once, missed=bruise+giant blood smear that i still havent washed off lol. second time, miss=more bruise and he had put the tournaquet too tight and could not get it off and was tearing at it with one hand while he held the needle in my arm with the other. (what?!) third time, different guy, miss=me very pissed off and crying and saying "give me the gas to go to sleep!" "well we want to prevent the risk of nausea" "this is WORSE" "it is?"
um, no i lied. yes its worse to be needle jabbed 3 times and now blood dripping down my arms than to throw up once later.
finally got the gas and went off to sleep nice and peaceful :) no nausea later either.

oh and i forgot to mention that there was this med student in there observing and as im lying there crying she decides to be the 14th person to ask me what grade im in (b/c i look 12) and when i say i graduated they ask why im not in college. HELLOO im in an OR right now. you tell me why im not in college. i know shes just trying to cheer me up, but by reminding me that im not in school aint the way to do that

allright well all this aside, the surgery went well. the infection was not collected (YAY!) and so now i have no more drains and stitchs in my butt, just a rubber seton. he also chopped off one of my skin tags. this was not planned, but my surgeon never felt the need to tackle it before. but hey whatever floats this guys boat.
OMG and then they taped my butt closed. like literally they shoved gauze 1 1/2 inches up my butthole, packed more in the cheeks, and then taped over the crack. um, i have crohns and that means that taping closed where i poo from is not a good idea. luckily i didnt have to go till way later and i was able to take my time in peeling the tape off when i got home. ugh.

lol i was thinking that the PKs they sent me home with were not affecting me, i just took one 2 hours ago, but judging by this post, i might be a little crazy. haha sorry!

oh and colonoscopy is moved till next week. MBH youre as smart as a surgeon! lol he said the exact same thing when i woke up and he was like DONT DO IT, its too soon.

oh and i might have c-diff and ill be getting a stool culture tommorow. but that is another long story of its own and this post is too long already.

have fun with this one guys!!
 
kello82 said:
MBH youre as smart as a surgeon!
Click to expand...
Just so you know, ANYtime anybody wants to say ^ that to me, they can feel free!

kello - sorry to say that this post was completely hilarious. I should not be laughing at your mishaps. Maybe it's the drugs.
Glad your butt will be feeling better soon, and REALLY glad that your poop-a-thon has been moved to next week.
 
Hey Kello-jello girl,

Sorry I haven't been around to support you. Sounds like you've had a totally crappy time in every way imaginable. ((HUGS))

Yeh, it was funny how you wrote it but I feel for you hon. Especially with those horrible IVs. I hate docs who stuff up one after the other!

I hope the surgery helps and you feel better soon.

And I don't know what it is about pillows but they seem to go missing in hospitals... maybe some dreaded pillow-munching microbe lurks in every bed! :pillowfight:

Take care and rest up now OK?
 
haha dont worry about laughing at my mishaps, i was laughing as i wrote. lol everything sucks at the time, but then later it just turns into a hilarious mess b/c its so ridiculous.

hahah poop a thon, MBH, love it!

aw cookie dont worry about not being around. i know you were up to your a$$ in alligators of your own.

well so today was iron infusion and it was pretty uneventful. decided to stay extra and get a liter of saline, im still dehydrated no matter what i do. then i went to the outpatient lab and tried to poo in a cup but of course for the first time in days, i didnt have to go all day. i went once this morning yet every other day i have been running to the bathroom hourly. bah. well i got a little teeny bit in there and hopefully that will be enough for them to culture and check on the c-diff.

tommorow is no plans! i am going to sleep and rest and then sleep some more.

thanks for your thoughts girls :)
 
ditto what the others said! i hope you start feeling better!

i love reading your posts.
 
kim your post brought me the biggest smile and warm fuzzy feelings :) :)
thank you so much, youre a true sweetheart
 
You've brought up one of my favourite subjects... pooing in a cup!
I was once given a tiny plastic "ice cream carton" and sent off to the toilet to put a sample in it. No specific instructions on how to achieve this when you're feeling like cr*p anyway... a logistical nightmare!

Hope you're feeling better soon, and hope you don't have c-diff!
 
I'm sorry to hear about all your misfortunes.
I'm wishing for you to recover quickly.
I love your upbeat attitude, If you don't mind I hope it rubbed off on me. That's what I need..

Best wishes

Wolfie
 
thanks agent and wolfie, it was nice to hear from you guys :)

well so the c-diff culture came back negative on friday. but then after talking to GI on the phone he decided to treat me for it anyways bc my symptoms are SO perfect c diff. i started a drug called vancomayacin (sp?) never heard of it before. but lo and behold!! i think i am feeling better. its so hard to tell, but i think i have been sleeping slightly better (not waking up in pain every time i shift) and i think ive been in the bathroom less. still 10+ times a day and food of any kind makes me run, but i think the pain is better.

tommorow is colonoscopy day. and doc decided to tack a CT scan on there just to see what else is going on i guess. sooooooo in a short while i will be embarking on my POOP A THON! this prep seems different, i only have to drink 2 12oz cups of solution and then other clear stuff of my choice. huh. big difference from the HUGE container i had to down last time.

my dad and brother are out gettting our xmas tree as i type this :( boo. this isnt the first holidays ive missed cause of being sick, but it doesnt get any easier.

MmmmM i am just looking forward to a big yummy cheesburger after all my tests tommorow. mm yes!
 
Poop-a-thon, huh? Gee - where'd you steal THAT term from??
Who wants to do colonoscopy prep shots with Kello??
Ya see, if you make a drinking game out of it - it's WAY more fun! Like, watch the smurfs - every time they say smurf or smurfy you drink. Or watch the How the Grinch Stole Christmas - everytime they say 'who' you slam some prep.
Hang in there kid - things will turn around for you soon I hope.
Good luck with your colonoscopy tomorrow, and enjoy that cheeeezburger!
 
ugh even my beloved jellO makes me want to spew. i puked up a load of my first dose of EZ prep. EZ my ass.
within an hour i was pooing clear though, so i guess im good. i had virtually nothing in me to begin with. yay c diff.

thanks girls, your posts bring me a smile
 
Hey Kello,

Hope all goes well with that scope! Vancomycin is a really good antibiotic - at work we call it the domestos of antibiotics (in the TV ad here domestos is a bleach that kills all known germs dead!) LOL

It might make you feel a little wiped out because it really goes to town so make sure you rest when you need to ok? And dont be surprised if you get tired when you least expect it. Just means its doing its job honey.

Hang in there. Am glad your C Diff was negative but at least he is covering you on the infection front too. Sounds like you have a good GI there.

Thinking of you honey.. ((hugs))
 
kello82 said:
i puked up a load of my first dose of EZ prep. EZ my ass.
Click to expand...

Kello - I am very surprised that no one told you the real meaning of EZ. It doesn't stand for 'easy', you have to read it in a thick German accent. It stands for 'Encredibly Ziscusting'.

Sorry for the miscommunication you received.
 
lol thanks Jan! good to know that i am taking the super killer of all antibiotics.
haha MBH, now that you mention it, that was in the fine print on the label :D

scope went okay today. i am so exhausted though. from wednesday night thru this morning i have only travelled from my bed to the bathroom, so getting to the dr office was a marathon for me.
it seems that everyhting looked as suspected: a moderatly inflamed colon with the lower 30% being severely diseased. i am pretty relieved that there weren't any suprises. after 10 years of inflammation, who knows what it couldve looked like in there.
filled out my application for tysabri afterwards, so it looks like ill be starting that soon after christmas. until then i hope this antibiotic fixes what is going on, i dont know how much longer i can go to the bathroom 15 times a day.

i realized how coincidental this all is. right now i am retracing my steps of almost exactly 10 years ago. nov 1998 came down with c diff which led to my scope and diagnosis first thing in the new year. exactly 10 years later, here i am with the same infection and about to start new therapy. is this gonna be one of those things that ends the same way it began? very eerie to think about. hard to explain this feeling.
 
it seems like the antibiotic is helping!

yesterday i took a bath for first time in over a week. so gross :yrolleyes: but honestly for a while there just moving from bed to the toilet would make me feel like i would pass out.
and i made myself a sandwich
and i made mashed potatoes :)
small feats, but after the past few weeks they are huge accomplishments.

and i weighed myself.....92 lbs :eek2:
ugh i cant even get any thinner. yet the weight just continues to pour off. trying hard to eat, but still all food makes my tummy throb.

blah and it seems that my throat pain is returning. jeez cannot win! some things get better and then others start back downhill.

oh well. i am home (NOT hospital) and my mom and dad and brother take good care of me. for that i am so grateful.
supposed to have a blizzard of snow tommorow. possibly 10 inches :D I is a happy camper.
 
Hey kello,

Glad the antibiotic is kicking in for you honey you need some relief!

Your appetite will pick up in time - just do as you are and eat what you fancy and can manage.

Hope you get that snow you were hoping for! ((hugs))
 
Ah I'd love to see some snow - especially at this time of year. It'd brighten things up! I find it funny too how at Christmas time everyones health totally plummets, my doctor was like 'make appointments in advance, we're filling up'. It's almost like people expect to come down with something!

On another note sorry to hear about your rough few weeks, seems like you have some good care providers though. Atleast they are treating you with caution despite the negative results. I'd always prefer to have things done that way. It really annoys me when my blood results don't come back as expected, yet the symptoms are absolutely classic of whatever they're looking for. Yet they leave me to suffer. Hope the antibiotics provide you with some relief. Sending lots of healing thoughts your way!

I can relate to you with the weight loss and no food. I totally crave all sorts of things but I'm too scared to eat because of what will happen. The cramps and toilet dashes. Which seem bad for you right now. The weight loss is scary too, I was 166lbs now 112lbs, have been down to 84lbs and I'm 5ft 9. I sympathise with the feeling of not being able to get any thinner yet it still happening. Hope you enjoyed that burger!

Nice to read of your prep too, helps me know what to expect over the coming weeks as I embark on my diagnosis marathon.
 
thanks natalie! yes the antibiotics seem to be helping. very VERY slowly, but surely.

had another blood transfusion today. had an iron infusion on wed, and my hemoglobin was under 8 again, and my platlets are twice as high as normal. not exactly sure what that means, but i would assume it makes my blood thicker and so the heart has to work harder? definitly it beats like crazy when im active. and by active i mean take a flight of stairs lol.
got 2 units this time and OMG they were SOOOO sloowwwwwwwww. i was in the darn room from 9:15 am to 3:45 pm. there was a lot of waiting. for the iv nurse, then for the blood, then for the next batch to come upstairs, then for the nurse to come back and take out the iv. ughh i was going crazy.
plus running to the potty with this damn c diff diharrea every other minute.

anyone else ever notice how hospitals always have little ledges on the floor to get into the bathroom? what the hell is up with that?? so annoying to be in a rush and have to carefully wheel the iv pole over the little mountain down there.

throat ulcers are definitly returning too. its starting to hurt bad to swallow again. put a call into GI but no response. grr, hes a great guy but impossible to get a hold of.
 
hey everyone. i hope that you all were able to enjoy your holidays. i cant believe how long i havent been on here lol! a week!

happy to say that i had a decent christmas and new years. however things have since taken a plummet :(
had another 5 day course of pred to take care of these stubborn ulcers in my throat-i was almost unable to eat again. so thats better, but now i am spiking fevers every day to almost 103. plus the migraines from the pred, the psycho-ness (i kicked a hole in my bathroom door today. barefoot. ugh i am not proud of that). sleeping max of 3 hours a night before i have to wake up and run to the bathroom where usually NOTHING happens. and horrible creepy dreams.

put a call into the GI today to tell him about the high fevers and also to ask about painkillers or a sleep aid of some kind. i need to sleep so badly. he had me go down to the city this afternoon for an emergency CT scan to make sure my abcess wasnt brewing. the doctor there said everything looked clear, much to my relief. but the contrast is giving me hell right now. i had to drink 7 glasses of that crap, not small glasses either. threw it up in the car on the way home and now im having a crap fest of pure liquid at a lovely time of 4 am.

sooooo. still waiting on the tysabri to clear and everything. i should be getting that soon. meanwhile the vancomycin is still getting the c diff under contol at its slow rate. i have semi formed poo on some days even, hooray!

activity level is better too. not leaving the house still, but hey at least i can make it downstairs to the couch and get food for myself.

well sorry for the absence, im gonna browse around now and catch up with you all. happy new years!
 
Aww Kello sorry you have had a rough few days honey ((hugs))

Glad there is no evidence of abcess and also that you had a decent holiday time too!!

Just keep pottering about for now - frustrating as that is..

Things will improve - its the long haul that can be draining so we are glad you are back with us now and can let us help prop you up!
 
thanks jan :) a good propping up is just what i need.

FINALLYYY i have some sleep meds. doc prescribed ambien for me. i seriously hope this helps me get some quality sleep. more than 2 hours at night please!

things seem better. the headaches, nausea and fevers arent as intense. im really thinking that the withdrawal of pred does this to me. no one has ever believed that though. hmm.
 
trust what your body tells you kello. i've always stood by that mindset when dealing with my own medication.
 
yeah, i guess i just have to be a bit firmer in my belief. its hard though, cause each of my parents has their idea of what would be best and theyre divorced so its usually diff ideas. then theyres what i feel in myself, and what the dr opinion is. thats so many opinions but i know that the only one that truly counts is mine. i have to be up front with whta i think and why and stick to it. its easy to be swayed, esp by mom and dad.

well today i am 19 years old. look not a day over 12 though HAH. would be a horrible customer to those people in carnivals who guess age/weight etc. "thirteen!" no "eleven?" no.......
went out to dinner with dad and brother to maggie mcflys. fried mac and cheese balls-enough said yumm. spent 85% of the meal in the bathroom though :( with constipated D. yes C and D at the same time. wtf is that?? ugh. while i was in there this song came on that was like "i thought things would be different by now. i thought my life would be better by now...." and it struck me bc its true. exact 10 years since dx and i am sitting in the bathroom of a restaraunt missing my family time. not much different there.

im kinda down now. going to moms house for the rest of this week, feel like i havent even seen dad at all this week. i miss them all =/ and i cant believe im 19 today and i feel so stuck. stuck in this cycle of endless pooping and sleeping and shivering and crying.
somedays this just hits me and i am sad.
 
Happy Birthday Kello!

I can understand why you feel so torn at times and how it gets you down when having coped for so long..

Sending you birthday ((((HUGS))))
 
Awww, Kello - I'm sorry you are feeling so crappy. Well, at least you can really score on the carnival prizes - better bring your ID.
Happy birthday.
 
thanks for the happy birthday wishes girls :)

well so latest news:
last night i took ambien to go to sleep as ive been doing for about a week. sometime after i fell asleep i woke up to go to the bathroom and in the process of pulling down my shorts completely lost balance and FELL DOWN faceplant into my shower. i woke my mom and brother up i made such a ruckus. i knew that the ambien made me slightly dizzy but it was a first to actually fall. and it wasnt even a sudden "AH!" kind of fall, it was like in slow motion. i knew i was goin down but i couldnt stop!
very lucky that i didnt smack my head, just my arm.
got mess all over the floor though, as i mentioned, i had been pulling my shorts off to poo lol.

i honestly wish i had a tape of it :ylol2: replaying in my mind it looks so funny. little girl, hunched over with no pants on as she slowly keels over. but like i said i know im lucky to not be hurt. gonna cut down to 1/2 ambien tablet tonight to see if it still makes me sleep without impairing my ability to disrobe if need be.

on the plus side, i got a new digi camera for my birthday :D so maybe i will post a pic of my killer bruise on my arm in the Battle Scar thread. in a few days though, it needs to mature haha.
 
Kello... I wobble around all over the place, more to do with the peripheral neuropathy I suffer from than the drugs (I think)... which is how I broke my ankle last summer! I've still got the pics of that, maybe that can go on the battlescar thread too!
You just need to be extra careful and think about things in advance... like, make sure you're sitting down before you get to that dangerous "shorts around ankles" stage. Good that you can laugh about it now, though.
A bit late, but happy birthday
 
the past week has been rather rough. this is gonna be a huge vent i feel. ugh.
1 good news is that i FINALLY got the tysabri started. i made a thread about it so anyone looking up tysabri could find it, so info on that is there.

anyways. ive been having a lot of trouble eating. honestly my insides literally lurch anytime a food is mentioned or i am trying to figure out what to eat. im still losing weight, now im down to 88 lbs. my gi is trying to hook me up with a nutritionist m.d. so that i stop losing weight. it looks like overnight tpn or tube feedings are coming my way.
i had an endoscopy a few weeks back, he wanted to make sure that i didnt have a full blown candida infection in my esophagus before starting the tysabri. no infection, but he could see the ulcers running all down my throat. ew. but its good to finally have a positive diagnosis on the throat and chest pains.
i cant seem to sleep for more than two hours at a time. i had to stop taking ambien because of the falling and amnesia. i would wake up in the bathroom and not remember going there. and frankly, the drug is just scary. went for a while just taking benadryl and not doing so well and now he decided to try Ativan. the dose he prescribed did nothing at all, i layed awake for 5 hours. and doubling it to 1 mg made me only slightly sleepy. come on, isnt this stuff supposed to be a pretty intense tranquilizer?? ugh.
so with the no sleep or no nutrition i can feel my body just falling apart. i feel like im held together with scotch tape. my heartrate is so fast sometimes, it peaked at 177 a couple days ago.
add to all this a failing relationship of 1 1/2 years. the love is there, we love each other so so much. but the respect and understanding and maturity he needs to handle my situation is not. the stress of it is really taking its toll on me too.

ughhhhhhh. i dont really know what else to say. sorry to be so whiney this time guys. just getting weighed down with everything.
 
well so my hematologist called and said that my iron level looks nice and that we should hold off any more infusions for now. sits well with me, i am tired of being needle poked 28472 times.

in other news i have gained 3 pounds! WAHOO!
 
thanks for all the yippes and wahoos :D lol you guys are the greatest.

whew ok get ready for a spill.....
friday ill be in for surgery b/c my butt is hurting. the abcess is collecting again and theres a new spot where a fistula will break through soon i think. looks like more setons and drains for me.

more importantly though----i think im gonna get bagged.
my head is still so spinny with these thoughts, but after consulting with the surgeon last friday, i felt hopeful. for the first time in a long time. she (not the first to do so) suggested just a temp ilieostomy to let my 4623572931 fistulas heal, and then there is an actual procedure where they can repair your rectal muscles!
for the first time, i got a hope that i wont have to wear a billion pads to attempt to control my accidents forever.

it just sounds so...logical. like, what am i afraid of? how much more embarrasing is a bag vs being a 19 yr old girl who needs a diaper??

ooooo boy. i dont know. im so confused.
 
i just hope it all goes well for our kello!

be damn nice to get rid of those fistula's for you.

{{HUGZ}}
 
I hope everything goes well. I'll be praying for you. As always let us know how everything is going.

Best of luck
 
I think you're right Kello - bag is way cooler than diaper.
It will be so nice to not have the fistula pain/drainage etc.
Super good luck - let us know how everything turns out!!
Another yippee, and 2 more wahoos for ya'!
 
Hey kello
I know exactly what you are feeling... When i was 21 that happened to me, its not too bad except for the little noises it makes every now and then. There are some good side effects like it makes you feel 1000% better. One thing i can suggest is to go to your local orthodontist office and get a pack of braces rubberband. The reason i suggest this is that i had to do this because once or twice, when i had the ileostomy bag i had some one bump into me once or twice and it bumped the clip loose, but if you get those little rubberbands it helps to keep the clip closed. Just a little thought that might help.
 
Hiya Kello,
I got my bag 2 1/2 months ago. It was a temp ileostomy too.

My fistulas just got too painful. It was the best decision I've ever made (Apart from deciding to ask wifey to marry me of course ;) )

Don't think of it as a negative. It really isn't that bad, I'm considering making it permanent. I'll decide over the next few months.
 
Hi Kello,

This is just copying danman...I also had a temp ileo (three and a half months ago...I'm a real veteran). I wouldn't yet say its the BEST decision I've ever made, but definitely not the worst. My fistulas reacted so quickly it was pretty remarkable. I'm not sure I'd jump into permanancy quite yet, but I know it wouldn't be the end of the world if it was. There are seriously 8 million things out there to make having an ostomy easier, something to address everything. You should check out the discussion forums at www.uoaa.org , they have answers to every ostomy related question / worry there.

It sounds like you danman and I have very similar problems. One other thing, I know you've been having trouble gaining weight/eating...the temp ileostomy should help with that too. I can eat SO much more now then I did before and none of it hurts. Its quite nice.

erin
 
thank you so much you guys. it means so much to beable to just spill here and have all these caring and thoughtful responses.

well so i have had the big discussion with both of my parents now, and were all on the same page which finally feels good. i still really incorporate their thoughts and opinions into my decisions about my health, so its a lot of talking and weighing sometimes. cause they know just as much about my disease as i do! theyve been through it all with me.
i think my dad and i both had the same kind of epiphany. he said something along the lines of "light at the end of the tunnel" and thats exactly how i felt when surgeon explained how this could help me.
i have not seen that light for a very very very long time. i think i always knew it was there, but i couldnt see it :(
i feel like it would be wise to wait a couple more doses of tysabri before a diversion to see how it affects the fistulas. i hate doing 2 treatments at once and then never knowing which one solved it or if it was both. something to talk to the gi about i guess.

@mark-i still have a bunch of those little bands left from when i had braces lol! i keep thinking oh i should just throw them away but never did haha

@erin-yeah it really does sound like you me and danman have similar disease. hearing how much it helped both of you is really good to hear

well so tommorow is office appt with my GI. the friday is butt surgery day. my mom and i are staying over in the city cause theres no point in driving home and then back less than 24 hours later.
 
Hey kello,

I wanted to just comment on your thing about the tysabri and ileostomy simultaneously. My GI struggled with the same problem...he knew we wouldn't really be able to separate out what was causing my improvement. But I was so miserable when we decided to do the surgery that he just kind of shrugged and decided it was the risk we had to take. Now the plan is to get me firmly into remission before we do the reversal, then see if I stay that way with the Tysabri. If not, then (as he said yesterday) "we'll have to talk about doing something more permanent").

I think its something you have to discuss with your doc, but if you're really miserable, I'm not sure waiting two more months is really worth it (I know I wouldn't have made it another two months.) I think its better to experiment when you feel good then when you feel bad. :p

Erin
 
hi there kello,

ive been reading your progfess with intrest i too am bothered terribly with the fistulas round the tail end and have just had abcesses drained and a seton put in last week. you sound like a top girl keep your chin up
hopefully we will hear good news from you soon.





diagnosed in 96 bowel resection and temp ile in 98 mostly perianal disease currently on aza and cipro had remicade in the past it worked great till it caused heart problems!!!!!!!!!!!!!!!!!!!!:ybatty: :ybatty:
 
it is always so nice to come back to update and have responses. thank you guys :)

mmmkayyy so appt with GI went well. he was encouraged by the things that have improved, which actually now that i look at them, is a quite a bit. my appetite, weight (2 lbs according to his scale), diharrea and frequency, ulcers in my throat are like, GONE! i hadnt even registered this, gosh. that was a biggie for him, he said on the scope that they were moderate as far as ulcers go.
and the things worse are just the butt situation and the ulcers in my mouth for some reason are worse.
SOOO we made a collective decsion that we will wait 2 more doses and then make a straight decision at that time: is the tysabri effective or no? if yes, well then thats self explanatory and ill feel great. and if no then ill stop that medecine and have the ilieostomy most likely.
but either way, i feel ready to accept either outcome. not sure what changed my mind, but im far less stressed out so hey im happy.

and today was butt surgery day and OMG it was so disorganized again. it went well though. he said that there werent any collections of pus, just inflammation of the fistula tracts which is whats causing them to swell and hurt like theyre infected.
ok heres the detail:
i had the worst nurse ever. well, ugh i feel bad saying that. she was genuine and had good intentions, but omg i could tell that even her coworkers were annoyed. it took her way long to ask me the pre-op questions and by the time she was done my surgeon had gotten called for an emergency. but she wasnt even my surgeon really, she was a new surgeon that i had to see last week b/c mine was out. so lucky for me, my surgeon took over the procedure lol. ready heres how it went down.
im lying on op table getting ived and blood pressure cuffed. my surgeon (first one) steps in to say hello and see what was going down today. we chat for a few about whats been going on.
anestesiologist says "ok dr., ready?" having the sedative in hand.
surgeon: "WHOA what? im not doing this today. dr. ky is."
.........
then they go out in the hall to look for her, call her, find out shes gone to emergency. comes back. tells me that she said that he could do the op instead.
k great.
anestesiologist: "ok dr., so what do you need now?"
surgeon: "psh i dont know. what was dr ky gonna do today?"

omg. honestly. so then i had to explain to him what was planned to do.
dont get me wrong, im glad he was the one to do it b/c frankly i like him better but it was just a little ridic.

finally i got those freakin amazing drugs and the anestesiologist said "ok in 3 seconds youll tell me if theyre working or not, ok?"
they shifted me on the table and 3 seconds later remember smiling an slurring "the drugs are working nowwww :yrolleyes: "
haha lmao i say such dumb things when im going under

ooo and i got to see what they use for positioning on butt operations. theyre these leg holders that look like giant casts that attatch to the side of the table pointed straight up toward the ceiling. kinda freaky, maybe i wish i hadnt seen them. huh.
 
kello82 said:
ooo and i got to see what they use for positioning on butt operations. theyre these leg holders that look like giant casts that attatch to the side of the table pointed straight up toward the ceiling. kinda freaky, maybe i wish i hadnt seen them. huh.
Click to expand...
NICE!! That is one AWESOME tidbit of information right there!! That's like - insider details! Maybe you can request a picture for your scrapbook next time. For my ass surgery I was on my belly and they just taped my butt cheeks apart. You luck out with those sexy leg holders!

It sounds like you are feeling a bit better. I hope it keeps getting better little by little. Yay! Keep it up!!
 
haha no scrapbook for me! i think id rather NOT reflect on the various tools and instruments that have been used on my booty.

i do keep a mental scrapbook of the people who have seen my butt though. i can NAME 25. by name. its probably more than double that though lol, theres always at least 4 extra people in every OR
 
speaking of the fantastic drugs.... I have said quite a few things that made the doctors and nurses laugh really hard. Last time i kept spouting out about how the guy next to me in the recovery room was snoring and that he needed a pizza to shut him up. The time before that my brother was standing next to my bed as the drugs were wearing off, I had the oxygen mask on and when they took the mask away i started crying, my brother asked why i was and i told him i was upset because i was an elephant and they took away my trunk and not the rest of the herd wouldn't accept me. Needless to say that the nurses were on the floor with this one.
 
hahah! LMAO an elephant?? thats hilarious
haha i never get to be in that loopy state. im asleep and then i wake up and im pretty coherent. boooringgg
 
disappointing GI appt yesterday.

he didnt say it flat out, but i got the impression that he has little faith in the tysabri as ive not felt good for the past 3 weeks and the 2nd dose didnt boost me. regardless the plan is to continue and have the 3rd infusion. then he wants to scope again 3 weeks after (frik!) and see if the inflammation in my colon is visually improved.
there was much discussion about surgery. cool, i was prepared for that. but now he is saying that the temp ileostomy probably would not be a great option for me, and that if after the scope we i were to have surgery, he feels that a total removal of the colon would be best. possibly leave the rectum and have a (very very) slight potential for a reattachment to the small bowel.
WTFFFF.
i said i was cool with the idea of a bag, but i am NOT cool with the idea taking everything out. that scares the shit out of me. as if i werent shitting enough jeez!
im just so afraid to not ever be able put things back. if i just do a temp, then i can always try and if i have recurrence then we'll go from there. but what if they figure out how to cure this in 10 years? then my colon is gone forever and im stuck with a bag. im afraid of having no choice.
im frusterated that my dr all the sudden decided that permanent is best, when i first came to him he seemed to think that a temp would be a decent option for me. maybe i misunderstood.
but at the same time im tired of being in bed all day and carrying extra pants with me everywhere.

bah. i will just keep hoping that the tysab kicks in. theres no decisions to be made until after the scope so not much point worrying.
 
Last edited:
Just don't let him amke that decision for you, If you don't want perm then just tell him straight out, you can find another doctor and let them know that you don't want everything removed, they can't take anything out with out your approval anyway. Just because he may think its best doesn't mean it is for you. He is not the one that has to live with the disease he just has to help you have a better quality of life.
 
I have not read your entire thread so can I ask a few questions. Do you have scarring or is it inflammed tissue in your colon? Have you tried Cimzia?

I feel we are both in a similar boat about getting our colon's removed. I'm going to ask my chiro about the ultrasound and see if that could possibly help me and maybe you.

I hope you get well soon.
 
Hey Kello,

First, be honest with your doctor about how you feel. They will then explain more fully why they feel the permanent is better. Doctor frequently want to avoid unnecessary surgery. If they think that a temp is highly unlikely to work for you, they may be concerned about doing at least two extra surgeries that are in the end unecessary. However, I would say that you should feel free to get a second opinion about the temp. vs. permanent thing. Even if the second doctor agrees with your surgeon, sometimes it helps to hear it from someone else just so you feel more confident.

Remember...I know it seems like the end of the world now, but if you can feel better after surgery, you will be happier. However, I will keep my fingers crossed for your scope to go well and for the tysabri to kick in soon!

Erin
 
thanks everyone

jeff- i have both scarring and inflammation tissue in my colon. as well as an abcess that wraps around in a horseshoe shape. the inflammation is the worse of the two right now though. but, a few years ago when my inflammation was calmer and the infection/inflammation healed a bit and thats when my stricture occured in the rectum about 3 or 4 inches up and i started having dilations then. they found it during an exam under anesthesia and my GI at the time could not even get her pinky figer past it, even though i was under complete sedation and my muscles were relaxed. at that time she wanted me to get an ileostomy b/c of the stricture and did not think dilation would work. so i left her and had dilations done at childrens hosp of philly.
ok sorry that was long. but YES i think our problems are very similar.the fact that we both have severe disease in the rectum (mine is just active and yours isnt?) means resections arent an option for us bc they cant take out your rectum.
ive also seemed to notice that when my inflammation and abcess is better, my stricture seems worse. i theorize that its bc the tissue heals up into scar tissue and makes everything tighter, but if its active then is is softer tissue i guess? i feel like if my inflammation were to heal right now, then my stricture would seize up again. just thoughts..

yes i have been honest with my doctor about how i feel. i asked what would be the problem with a temp to wait and see how the colon reacts, and its like you said erin, he seems to be just concerned about unecessarily adding extra surgeries. (may i add that he is not exactly the best when it comes to explaining and giving complete answers)
the thing is, he is already my like, 4th opinion! after being to philly, boston, and cleveland searching for someone who can look at ME and not just my colon i was finally directed to him, and he is one of those doctors that is sought after for his experience with the more complicated cases, i guess is a decent way to explain it. SO im kinda feelin like he knows what hes talking about, and quit being his patient would be a dumb idea.
but, i do have no problem telling him what i want. my parents and i all agree on this that i am too young and now is not the right time to remove the colon. mark you are totally right that hes not the one that has to live with the choice, i do
 
Well if you ever feel like taking a trip down south i have a great doctor who's main idea is treat the paitent not the disease he answers anything you have questions about and has the best bedside manners i have ever seen. really really great doctor. If you want his name i'll give it to you
 
allright thanks mark. i will definitly keep that in mind if my doc and i really start butting heads over this.

but only if i get to hang with you while im there!
 
Kello are you seeing a colon and rectal surgeon or a GI doc? Sometimes getting the opinion of a colon and rectal surgeon will give you more options. Good luck hopefully things look better after your next scope.
 
mommy1st- yup i have a GI and a colorectal surgeon who work together on cases. the discussion that took place on thursayd was with the GI, so yeah maybe when we discuss with the surgeon some slightly different ideas will arise. thanks!

MBH settle what? we just chattin :) i wouldnt go to any member's hometown without meeting up with them!
 
Sorry - flirting by proxy I guess.
Although I DID stalk someone's myspace page (for Kello) and it said their mood was "flirty"!!
Hahah! I'm busted!
 
wait what? you were stalking someones myspace page for me? you were looking for me? im so confused. i dont really use my myspace anymore but im on there.
 

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