Surgery Time
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Wow Kell. There are times when I wish I had a magic wand, it would spew sparkly stars and I would rid the world of ppg, and pg, AND crohn's for that matter...poof, they would all be gone.
BUT, your freaking stoma is so pretty, so brilliant red and voluptuous! She is a gem.
BUT, your freaking stoma is so pretty, so brilliant red and voluptuous! She is a gem.
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MAN i have so much to update.
ill do my best to remember everything.
ok so at my last visit with the derm, he basically said that he didnt know what to do anymore and wanted me to go see a stoma specialist. i had already seen one but she didnt really do a good job SO we had gotten the name of another team of two ladies and went to see them.
they went through an app change with meand made it SO much easier, no more powder and glue and crap. they have me using a different type of antifungal stuff, and a cohesive slim ring. i can finally use them now cause my incision is all better!
that was last week sometime and so far no leaks or anything!
oh and they also told me NOt to use adhesive remover. it can be harsh on your skin so anyone else whos having skin problems...be aware of that.
ok! and ive also seen my GI a couple times. he put me on a drug called Prograf which is similar to cyclosporine. it is pretty much the only crohns drug i havent tried, and it *seems* to be helping?
i have no more new Pyo's on my legs, the two worst ones are dried up (i think cause of the steroid injections) and the other questionable spots are winding down.
yay!
hopefully itll help the one on my tummy heal up too.
and also, my mucous poos have been a LOT better too. a lot less has been coming out and the cramping in my colon has calmed down. i *thought* it might be a result of the prograf, but then a few days ago for some odd reason i decided to see how the stricturing and stuff is doing in my rectum and its pretty much completely closed off! i cant even get my pinky through
i stopped doing my dilations after surgery, maybe i shouldve kept going? i guess i need to tell my surgeon,, right? its not a problem right now, but if i ever get reversed which i hope to stay an option, then i need to maintain my rectum?
idk. honestly i dont mind it being tight right now, cause thats probably whats slowing down the mucous coming out....but i guess the mucous HAS to come out. it shouldnt stay stuck in there?
ah! what should i do??
i never even though about the fact that my stricture would close up again now that its not being used in there.
well, on the flipside my midline wound is TOTALLY gone! its a full scar now and i will post a glorious pic of it in the battle thread.
my scar is being kinda weird right now, it hurts. it kinda burns and weeps a little bit and almost looks like it has blisters on it. anyone know what it is??
a couple more thing here....my gi also wanted me to start a 5 day pred set cause my mouth and esophageal ulcers were getting REAL bad, but i havemt started it yet and now they seem better. i guess ill hold off a little bit.
he also put me on iron and b12 shots as im a little low.
has anyone down the b12 shots before? im not really looking forward to it. i hated getting my methotrex and stuff =/
ummm what else...
OH i started seeing a therapist. there is just so much going on in my head and i hate it. im so tired of freaking out and hyperventilatijng and crying for hours. im sick of 12 bad dreams a night and not sleeping and all that crap.
ive seen him once and he seems really nice so i hope he can help with this. i really dont know what happend. ive never been so messes up before...so comfortable with myself yet have explosions of upsetness. ugh.
ive only seen him once so far, an introductory thing with both my parents and i cried SO much in there. i dont even know why.
anyways, everythings heading the right way i guess.
ooo i drove for the first time since all this! its been a year since ive felt well enough too. that was a bigge
ill do my best to remember everything.
ok so at my last visit with the derm, he basically said that he didnt know what to do anymore and wanted me to go see a stoma specialist. i had already seen one but she didnt really do a good job SO we had gotten the name of another team of two ladies and went to see them.
they went through an app change with meand made it SO much easier, no more powder and glue and crap. they have me using a different type of antifungal stuff, and a cohesive slim ring. i can finally use them now cause my incision is all better!
that was last week sometime and so far no leaks or anything!
oh and they also told me NOt to use adhesive remover. it can be harsh on your skin so anyone else whos having skin problems...be aware of that.
ok! and ive also seen my GI a couple times. he put me on a drug called Prograf which is similar to cyclosporine. it is pretty much the only crohns drug i havent tried, and it *seems* to be helping?
i have no more new Pyo's on my legs, the two worst ones are dried up (i think cause of the steroid injections) and the other questionable spots are winding down.
yay!
hopefully itll help the one on my tummy heal up too.
and also, my mucous poos have been a LOT better too. a lot less has been coming out and the cramping in my colon has calmed down. i *thought* it might be a result of the prograf, but then a few days ago for some odd reason i decided to see how the stricturing and stuff is doing in my rectum and its pretty much completely closed off! i cant even get my pinky through
i stopped doing my dilations after surgery, maybe i shouldve kept going? i guess i need to tell my surgeon,, right? its not a problem right now, but if i ever get reversed which i hope to stay an option, then i need to maintain my rectum?
idk. honestly i dont mind it being tight right now, cause thats probably whats slowing down the mucous coming out....but i guess the mucous HAS to come out. it shouldnt stay stuck in there?
ah! what should i do??
i never even though about the fact that my stricture would close up again now that its not being used in there.
well, on the flipside my midline wound is TOTALLY gone!
its a full scar now and i will post a glorious pic of it in the battle thread.my scar is being kinda weird right now, it hurts. it kinda burns and weeps a little bit and almost looks like it has blisters on it. anyone know what it is??
a couple more thing here....my gi also wanted me to start a 5 day pred set cause my mouth and esophageal ulcers were getting REAL bad, but i havemt started it yet and now they seem better. i guess ill hold off a little bit.
he also put me on iron and b12 shots as im a little low.
has anyone down the b12 shots before? im not really looking forward to it. i hated getting my methotrex and stuff =/
ummm what else...
OH i started seeing a therapist. there is just so much going on in my head and i hate it. im so tired of freaking out and hyperventilatijng and crying for hours. im sick of 12 bad dreams a night and not sleeping and all that crap.
ive seen him once and he seems really nice so i hope he can help with this. i really dont know what happend. ive never been so messes up before...so comfortable with myself yet have explosions of upsetness. ugh.
ive only seen him once so far, an introductory thing with both my parents and i cried SO much in there. i dont even know why.
anyways, everythings heading the right way i guess.
ooo i drove for the first time since all this! its been a year since ive felt well enough too. that was a bigge
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mike said:
kimberlie said:
yea i have *thought* about it. i actually first borught it up to my doc for my fistulas and all, before i was ready for surgery. he said that he didnt support it cause he didnt see enough evidence in it.
then i brought it up again after surgery for the PG and he had the same opinion.
i think i may have tried again if it continued to get worse.....but idk.
thanks for both you opinions, i see both sides of it. at least it gets the pain down and some improvement, but that it comes back again and again =/ i wish it would work.
have you guys tried Prograf? thats what my doc put me on now and i cant say if it was the drug for sure, but i havent yet had anymore new wounds. the ones on my legs are drying up for now but the bad one on my tummy has yet to improve.
and again im gonna suggest the steroid shots. really they took care of the nasteist wounds on my legs SO quickly. it probably wouldnt be so fast for you as yours are deeper and worse, but i think it was the shots that helped my legs more than anything.
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Captain Obvious
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Girl, I don't know if you realize what an amazing person you really are. It takes more fight than I could ever imagine one person having to go through what you have so far in your young life.
It's easy to see why you're hyperventilating, having bad dreams, and breaking down. The mind can only take so much. The fact that you're so positive and upbeat has probably been part of your saving grace and why you haven't gone completely insane
It's great that you'll be seeing someone and can finally vent. Let it out, girl!
It's easy to see why you're hyperventilating, having bad dreams, and breaking down. The mind can only take so much. The fact that you're so positive and upbeat has probably been part of your saving grace and why you haven't gone completely insane
It's great that you'll be seeing someone and can finally vent. Let it out, girl!
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Awww Kell,
Sorry it has been such an awful time for you, you deserve better. I think it is a really good move to hook up with a counselor. Having a neutral party to listen can be such a great way to release and let it fly. Holding it in and ALWAYS trying to tough it out, while admirable, can definitely crank up the anxiety and depression meters! I have found myself at times snapping at family or friends because I just feel like a powder-keg of emotions. It is so important to keep tabs on our mental health as well, it is soooo connected together, mind, body, spirit. Good luck Kello, but please be fair to yourself. You have been through so much for such a long road that sooner or later it is bound to wear your spirit down a bit. Even Superheros like you need to break down and rebuild sooner or later. :worthy: :worthy: :worthy:
Sorry it has been such an awful time for you, you deserve better. I think it is a really good move to hook up with a counselor. Having a neutral party to listen can be such a great way to release and let it fly. Holding it in and ALWAYS trying to tough it out, while admirable, can definitely crank up the anxiety and depression meters! I have found myself at times snapping at family or friends because I just feel like a powder-keg of emotions. It is so important to keep tabs on our mental health as well, it is soooo connected together, mind, body, spirit. Good luck Kello, but please be fair to yourself. You have been through so much for such a long road that sooner or later it is bound to wear your spirit down a bit. Even Superheros like you need to break down and rebuild sooner or later. :worthy: :worthy: :worthy:
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hahah no but seriously thank you guys youre always so supporting.
beth, you arent useless at all. just the fact that you care enough to reply means a lot <3
i hope that the counseler guy will help with just a diff perspective. i mean its not that i relaly hold stuff in, i talk to my parents about everythign really. whenever im upset ill jsut spill. but i hope he can help me figure out WHY im upset when i dont really know the reason you know? like when i feel like i need to spill but theres nothing to spill lol
youre always so supporting.beth, you arent useless at all. just the fact that you care enough to reply means a lot <3
i hope that the counseler guy will help with just a diff perspective. i mean its not that i relaly hold stuff in, i talk to my parents about everythign really. whenever im upset ill jsut spill. but i hope he can help me figure out WHY im upset when i dont really know the reason you know? like when i feel like i need to spill but theres nothing to spill lol
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oo i forgot to add, anyone else having skin probs and using antifungal powder? try changing the type of powder!
i was using Nystatin for months now and just switched to Micanizole, and the rash is gone and its been 1 week.
its the same thing as athletes foot powder lol, but it works!
i was using Nystatin for months now and just switched to Micanizole, and the rash is gone and its been 1 week.
its the same thing as athletes foot powder lol, but it works!
imisspopcorn
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I hope your doing good Kello. Whatever works
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hey danman
yeah everythings still a big mess. m incision finally healed up nice! thats a relief. but the pyoderma is not doing good. its being strange, the sides are slowly making new skin it seems, but it often just tears back open. overall, they have closed in, but the top and bottom are growing outward and more holes are tearing through.
my GI put me on prograf which is similar to cyclosporine, but cant tell if its doing any good yet. BUT, the sores on my legs have dried up! they are all healed and no new ones have opened. thats a huge relief too.
how are you getting along with your stomy? wait....didnt you announce that your wife was expecting a while ago?? maybe im worng but i thought so....how is she doing??
yeah everythings still a big mess. m incision finally healed up nice! thats a relief. but the pyoderma is not doing good. its being strange, the sides are slowly making new skin it seems, but it often just tears back open. overall, they have closed in, but the top and bottom are growing outward and more holes are tearing through.
my GI put me on prograf which is similar to cyclosporine, but cant tell if its doing any good yet. BUT, the sores on my legs have dried up! they are all healed and no new ones have opened. thats a huge relief too.
how are you getting along with your stomy? wait....didnt you announce that your wife was expecting a while ago?? maybe im worng but i thought so....how is she doing??
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kim--YES the shower hurts a lot. i never let the water spray directly on it, i have a pack of these really soft disposable cloths and i get it wet and then squeeze the water out so i just runs done the wound gently. its really hard to clean, thats part of what hurts so bad, having to scrub it. does mike use soap? they told me not to but i have to in order to get all the poo and sticky stuff off.
what about this water purifier? how come that helps it?
hmm and no one has told me anything about making sure it doesnt dry out. maybe cause of the location though, since the stoma is right there theres always the moisture that the intestine creates. and the appliance makes it all sealed it, so the wound is rarely exposed to the air.
how is mike's doing? has anything changed? have you guys thought anymore about steroid shots? im going back to the derm to get more on thursday. its so hard to tell but i *think* they help.
oh one more thing, does mike have any seepage from his wound(s). mine weeps a light yellow mucousy type thing, often blood mixed in so its pink-ish. its not pus like infection, its just mucous-like. does he have that too? it mostly comes from the holes that tear open in the skin a bit farther away from the main wound....but the holes are connected to the woundbed. maybe the sores on the leg dont form like that...it could just be the stoma kind, idk.
thanks MG for all the cheering me on what makes the b12 alot easier than the methotrex? i dont think im taking them anyway, i told my GI i didnt want to and i think hes ok with me taking oral supplements, but im still curious.
what about this water purifier? how come that helps it?
hmm and no one has told me anything about making sure it doesnt dry out. maybe cause of the location though, since the stoma is right there theres always the moisture that the intestine creates. and the appliance makes it all sealed it, so the wound is rarely exposed to the air.
how is mike's doing? has anything changed? have you guys thought anymore about steroid shots? im going back to the derm to get more on thursday. its so hard to tell but i *think* they help.
oh one more thing, does mike have any seepage from his wound(s). mine weeps a light yellow mucousy type thing, often blood mixed in so its pink-ish. its not pus like infection, its just mucous-like. does he have that too? it mostly comes from the holes that tear open in the skin a bit farther away from the main wound....but the holes are connected to the woundbed. maybe the sores on the leg dont form like that...it could just be the stoma kind, idk.
thanks MG for all the cheering me on
what makes the b12 alot easier than the methotrex? i dont think im taking them anyway, i told my GI i didnt want to and i think hes ok with me taking oral supplements, but im still curious.
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yea exactly, it destroys the skin around mine too. i have a lot of dead skin that sloughs off the top layer of seemingly healthy skin when i wash and it leaves red blotches. like a sunburn that peels kinda a leave tenderr spots. and even parts that are not even touching the open areas turn purple and slowly get darker and closer to black almost.
from what the docs explained to me, the skin dies from the center outward. so even skin that is an inch away from the seemingly active area can be in the beginning stages of dying? its such crap. why?? why does it start and why cant it stop?? and it scares the hell out of me cause does that mean that even the skin on the way far perimeters that is showing just slight symptoms of deterioration....does that mean that the wound is gonna open THAT far?
thats not really a real question, theres probably no one anywhere that can answet that. i just hate it too kim.
from what the docs explained to me, the skin dies from the center outward. so even skin that is an inch away from the seemingly active area can be in the beginning stages of dying? its such crap. why?? why does it start and why cant it stop?? and it scares the hell out of me cause does that mean that even the skin on the way far perimeters that is showing just slight symptoms of deterioration....does that mean that the wound is gonna open THAT far?
thats not really a real question, theres probably no one anywhere that can answet that. i just hate it too kim.
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Beth, please do not ever call yourself useless. Although I do not know you very well, I have a strong impression that you are a truly cool person and care a great deal about the people on this forum. You my dear are a diamond as a friend and always have a kind word to say. This is a priceless quality that you seem to have a lot to give and that my dear makes you one of the many crohnie angels. Hold your high and be proud of who you are and what you have to offer.beth said:
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soo i just got a call from my derm with culture results for my stomal pyoderma.
its infected like hell. and he descirbed it as "through the roof".
and the cherries on top is that its resistant to about every antibiotic.
he thinks i need to get admitted, but hes gonna consult with my GI first.
kill me.
will be back later.
its infected like hell. and he descirbed it as "through the roof".
and the cherries on top is that its resistant to about every antibiotic.
he thinks i need to get admitted, but hes gonna consult with my GI first.
kill me.
will be back later.
imisspopcorn
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Aw kello, I hope everything goes well for you. Chin up...we are pulling for you.
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Im sorry Kello... I hope it all works out for you...
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That sucks kello. It is time your body started cooperating!
Hope you cane get it sorted
(((HUGS)))
Hope you cane get it sorted
(((HUGS)))
Okay kello...I know I've been completely MIA lately, but this seriously sucks. I'm sorry your problems have been going on for so long! I know being admitted always sucks, but maybe there will be some resolution on a course of treatment? At least in the hospital there are all the differnet kinds of doctors and they can see you and consult with each other all at once.
Feel better! I'm thinking of you.
Feel better! I'm thinking of you.
My Butt Hurts
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Beth already asked my questiion - what will they do if they admit you? And Kim already said my comment - looks like it's time for the HBOX or whatever that is called. So I'll just say thinking good thoughts for you, and let us know what they decide. Have you taken methotrexate? Is that a type of antibiotic? It's something strong, I can't even remember if Mike is still on it or if it helped him any. Just thinkin'.
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Oh Kello - I'm so sorry to hear the latest news. I think about you often - crossing all my fingers that they can finally clear this up for you!
oh Kello, i knew nothing of all this! i've missed so many threads recently... and this one was one i should not have missed i'm sorry you're going through such a bad time honey, and i am doubly sorry that i've not known and not given you any support
i hope the docs can find some way of alleviating the issues and get you back on track - you're such an inspiration to us all, it's time things turned around for you.
big hugs Kel, get well soon! x
i'm sorry you're going through such a bad time honey, and i am doubly sorry that i've not known and not given you any support i hope the docs can find some way of alleviating the issues and get you back on track - you're such an inspiration to us all, it's time things turned around for you.
big hugs Kel, get well soon! x
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Good luck with everything Kello - its time they sorted this out!!!
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I had about half of my colon removed in 1999 then in 2004 ad to have another few inches so all I have left is like 4 to 6 cms. They did a pull through so no bag but it has been brutal, horrible. I have to have the bag surgery the 17th.
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how was the pain after surgery?
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well thanks everyone for the love and encouargement
i got home yesterday actually, pretty weird circumstaces.
an infectious disease doc came in to look at the Pyo and get this, it wasnt infected. no more pus or anything...so he wanted me to get out of there so i didnt catch anything else.
theres still not really an explanation....either the cipro i was on since last thursday had already taken care of the bacteria or the 2 days of antibiotic got it? but i wasnt even on vanco, so i only had 4 doses of one that started with Cif-something-something. it doesnt seem like it couldve cured it that fast.
BUT he did say that based on past history of infections it evident that im a carrier of MRSA, i guess that means that its just hangng out on my body all the time, but does no damage. we all have bacteria on us and the colony type differs from person to person. it only does damage when i get a cut/sore/etc and the MRSA immediately gets in there, and no amount of antibiotic creams or anything can help cause MRSA is a very resistant strain.
soooo he thought maybe my culture grew mrsa cause its on my skin anyways??
but yet the infection this time was ORSA? what the frick...
idk. he also said that pg and infection can look and feel exactly the same so you never know if its and infection or just the disease.
who knows. feels like a waste of all the stress of the hospital and peoples damn mistakes.
oh and i was told again that dropping my colon might help. meh =/
oh hey they cultered my ass. and then never spoke of it again.....freaks...
i got home yesterday actually, pretty weird circumstaces.
an infectious disease doc came in to look at the Pyo and get this, it wasnt infected. no more pus or anything...so he wanted me to get out of there so i didnt catch anything else.
theres still not really an explanation....either the cipro i was on since last thursday had already taken care of the bacteria or the 2 days of antibiotic got it? but i wasnt even on vanco, so i only had 4 doses of one that started with Cif-something-something. it doesnt seem like it couldve cured it that fast.
BUT he did say that based on past history of infections it evident that im a carrier of MRSA, i guess that means that its just hangng out on my body all the time, but does no damage. we all have bacteria on us and the colony type differs from person to person. it only does damage when i get a cut/sore/etc and the MRSA immediately gets in there, and no amount of antibiotic creams or anything can help cause MRSA is a very resistant strain.
soooo he thought maybe my culture grew mrsa cause its on my skin anyways??
but yet the infection this time was ORSA? what the frick...
idk. he also said that pg and infection can look and feel exactly the same so you never know if its and infection or just the disease.
who knows. feels like a waste of all the stress of the hospital and peoples damn mistakes.
oh and i was told again that dropping my colon might help. meh =/
oh hey they cultered my ass. and then never spoke of it again.....freaks...
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imisspopcorn
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I'm glad your home Kello.
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kello82 said:
That's pretty bizarre. So wait, the MRSA is what infected your PG, but it went away? Seems pretty confusing.
Meh indeed. It's your colon, and you deserve to hang on to it! They can be pretty insensitive sometimes. @_@
Just randomly? And they never explained anything? That's kinda creepy. :eek2:
Anyway, I'm glad you're outta the hospital, Kell. The last thing you'd need is another infection of some kind. Hope you're feeling better soon.
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thanks to everyone for wishing me well you make me happy!
im thinking about it...i have a GI appt on thursday and i want to bring it up to him. he said no once before but that was when i brought it up for fistulas. maybe itll be different this time.
im not sure if theres one in my hospital...but im sure that theres a center around here somehwhere. whether its in ny, boston or philly ive already maken the trip to each place, so its no big.
i worte down her info and will talk to parents about it, thanks you two
yeah ive been on the methotrex before, in conjunction with remi and then instead of remi it was humira and metho but it didnt seem to work anymore.
huh i dont really know what kind of med it is though....its not immunosprressant, is it? i feel like its in the same type as 6 mp...hell idk really. hahah lol
mine didnt smell like infection for sure, just grew a crap load of bacteria and certainly there was enough yellow stuff pouring out the wound. it could just be PG stuff too huh? who knows what goes on in there, i swear to god it looks different every day and theres 20581309 different colored parts of it.
ANYway, yeah i do know that it was worthwhile to go and make sure....i wouldve been very uncomfotable to just stay home and see what happens and then end up septic or some freak thing like that. it only feels like a waste cause it didnt really fix anything, but it sure did PREVENT a possible disaster i suppose.
im sure thats what mike meant as well
or maybe i had just been abducted and the aliens were probing me...
you make me happy!kimberlie said:
im thinking about it...i have a GI appt on thursday and i want to bring it up to him. he said no once before but that was when i brought it up for fistulas. maybe itll be different this time.
im not sure if theres one in my hospital...but im sure that theres a center around here somehwhere. whether its in ny, boston or philly ive already maken the trip to each place, so its no big.
i worte down her info and will talk to parents about it, thanks you two
My Butt Hurts said:
yeah ive been on the methotrex before, in conjunction with remi and then instead of remi it was humira and metho but it didnt seem to work anymore.
huh i dont really know what kind of med it is though....its not immunosprressant, is it? i feel like its in the same type as 6 mp...hell idk really. hahah lol
ew i know that smell so wellkimberlie said:
mine didnt smell like infection for sure, just grew a crap load of bacteria and certainly there was enough yellow stuff pouring out the wound. it could just be PG stuff too huh? who knows what goes on in there, i swear to god it looks different every day and theres 20581309 different colored parts of it.ANYway, yeah i do know that it was worthwhile to go and make sure....i wouldve been very uncomfotable to just stay home and see what happens and then end up septic or some freak thing like that. it only feels like a waste cause it didnt really fix anything, but it sure did PREVENT a possible disaster i suppose.
im sure thats what mike meant as well
hah yep. my butt is kinda sore somtimes from where the seton is so maybe thats why they had to culture it? i was half asleep so i dont even know, it was weird.Procyon said:
or maybe i had just been abducted and the aliens were probing me...
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Robert kipnis said:
hey nice to meet you
what has been horrible about it? do you still have a lot of pain and symtoms despite the resections?? man that many surgeries sucks. i feel bad for anyone whos had to go thru it more than once.
so Nov 17 is the big day huh? thats good, i hope itll help you feel better, are they gonna snatch the rest of your colon? i put this ileo off for years, did everything i could to avoid it, but honestly, its totally fine. i love my stoma (hate my PPG lol) but its so easy to live with IMO. mine is difficult atm cause of some stupid mishaps, but once its all better itll be 100x easier than now lol. i went swimming this summer and i wear what ever the hell i want to, really i find no restriction. i mean obviously when your bag is really full well then its looks like youve got a little baseball on your stomach, but when its like 1/4 full or less? no one can tell. hell, I cant even tell! if you wanna have a look i made a thread for clothing and ostomies, to show how little the thing is. here tis :
http://www.crohnsforum.com/showthread.php?t=6105
also feel free to read through this thread that were in now there is SOOO much info from the other ostomy peeps of this forum that were helping me though the surgery and newbie days with an ileo. info on products, appliances, tips, the surgery itself, pretty much everything.
ask me anything you want ok? or pm me too
theres a few other ostomy tips threads around here too, search for keyword ostomy and theyll pop up. lots of great info.were here to help if you need anything
lol this is so weird, i just got that shiver thati used to be the one asking for advice of my fellow ostomys here.....now im on the other side and am able to give it.....
they call that full circle i guess
OH forgot to answer your question about pain.....for me personally i was in a great deal of pain after surgery. i woke up just as we were leaving the OR and in my haze i thought it was obvious that i was in agony but afterwards the people told me i was very calm and seemed comfortable...sooo idk what happened there.
the painkiller they started giving me didnt work so it took a long time for them to order and send up different stuff but once i got it, all was good in tha hood baby
the whole time i was on the dilauded i was pretty comfy, and eh..loopy.. lmao. i was watching american idol and then realized after i was off the drugs that i had no idea who lost or who even was on the show. so you have some good drugs to look forward to
SO once i got home the pain got less and less and i could finally sleep on my side and sit up easier.
the worst pain for me was where my staples were, they ended up infected so thats why, but other than that, it was just a dull ache in my abdominals and sides, like very very sore and tired muscles, ya know?
all in all, waking up from anesthesia to when they got the dilauded in me was the worst. that high pain was gone the next day and started coming off the drugs with no prob.
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on the methotrex before, in conjunction with remi and then instead of remi it was humira and metho but it didnt seem to work anymore. huh i dont really know what kind of med it is though....its not immunosprressant, is it? i feel like its in the same type as 6 mp...hell idk really. hahah lol
It is an immunosuppressant. It's mechanism is that it's an antifolate, which slows down the rate that cells can divide. The inflammation process, which has rapidly dividing cells - white blood cells - the soldiers of the immune system, cannot reproduce so quickly and attack the body. Also means other things such as skin and hair which are continually growing can't as fast as they did. So you get thinner hair and noticable skin changes.
HTH, IANAD/etc.
It is an immunosuppressant. It's mechanism is that it's an antifolate, which slows down the rate that cells can divide. The inflammation process, which has rapidly dividing cells - white blood cells - the soldiers of the immune system, cannot reproduce so quickly and attack the body. Also means other things such as skin and hair which are continually growing can't as fast as they did. So you get thinner hair and noticable skin changes.
HTH, IANAD/etc.
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huh, i totally thought it wasnt in the realm of immuno drugs! i never even knew how it worked like that, its nice to know!
i cant recall noticing any hair or skin changes...ive always had thin hair. ohhh WAIT my hair was actually really thin thru high school....my ponytail was like 1/2 inch diameter! i wondered what happened that it got so tiny, i thought it had to do with haircut styles and layers that thinned out my hair.i guess maybe that was part of it, but really its a lot thicker now.
hahah i wondered what was up with my hair for so long
thanks beth!
i cant recall noticing any hair or skin changes...ive always had thin hair. ohhh WAIT my hair was actually really thin thru high school....my ponytail was like 1/2 inch diameter! i wondered what happened that it got so tiny, i thought it had to do with haircut styles and layers that thinned out my hair.i guess maybe that was part of it, but really its a lot thicker now.
hahah i wondered what was up with my hair for so long
thanks beth!
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for real kim? that is awesome! yes i go to mt sinai in manhatten!!
i will give you the names of all my doctors in PM, and who has helped me a lot. who is his doc gonna be?
AND get this, yesterday my GI gave me the name of a derm at NYU medical and he is one of the worlds leading docs in PG. ill get you guys his name too.
what part of ny do you live in?
i will give you the names of all my doctors in PM, and who has helped me a lot. who is his doc gonna be?
AND get this, yesterday my GI gave me the name of a derm at NYU medical and he is one of the worlds leading docs in PG. ill get you guys his name too.
what part of ny do you live in?
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omg no way!!! ive been to kingston!! this is so cool!
nope ive never heard of dr ullmann....im gonna look him up and see what group hes in and what not. what is he, GI, surg, derma? i will get you those names, if dr ullmann is not right for some reason. my GI is very established and a great guy, surgeon is too. though he is rough
nope ive never heard of dr ullmann....im gonna look him up and see what group hes in and what not. what is he, GI, surg, derma? i will get you those names, if dr ullmann is not right for some reason. my GI is very established and a great guy, surgeon is too. though he is rough
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Kello, I read that you are or were taking Prograf. I am taking it too. I was not having very good results from it alone. My doctor added Cimzia to the prograf and my throat and mouth sores are better. I tried Cimzia by itself also but did not get very good results from that either. The combination of Cimzia and Prograf seem to be the trick. I am off pred and feeling great! I wanted to share this with you incase it might be something that would work for you. I really hope you find something. You deserve a break! Take care and keep your head up. You have a HUGE network of people routing for you!
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Oh Kello, that looks NASTY Your other scars have healed up nicely tho I hope you're doing okay!
I hope you're doing okay!
Think you deserve a bit of peace and good health, Kello! Hope it all starts healing soon!
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kimberlie said:
kimberlie said:
Hi Kimberlie,
I have seen Dr. Ullman before. When I was in Mount Sanai my doctor on Long Island wanted one of the people he knew to take care of me while I was in the hospital ontop of the surgeon at Mount Sanai. I still perfer to go to my Gastro on Long Island Dr. Milkes. Dr. Ullman is very kind and seemed very knowledgeable when he saw me for each stay there and for a few follow ups.
My Butt Hurts
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It's amazing how your midline scar is almost completely gone! I hope the rest of you starts healing up the same way.
What do you think of your progress right now Kell? You posted a pic, but I don't really know what's going on now. Is it getting better, getting worse, staying the same? You were crying and getting frustrated for a while there. Hope everything is getting easier for you =)
What do you think of your progress right now Kell? You posted a pic, but I don't really know what's going on now. Is it getting better, getting worse, staying the same? You were crying and getting frustrated for a while there. Hope everything is getting easier for you =)
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Oh Kello~ I am so sorry that you have to go through this. Your tummy must hurt. I had the same kind of thing going on about six months after my surgery but it evetually got better. The derm put me on a two week dose of pred. After that she sugested that I use a pouching system that only had the pectin adhesive on it with no tape etc. Those types of pouches are not very sticky. (i got to worry about it falling off for awhile) She did have me use a hypo allergenic tape to help me keep. That did help and was much better on all the sores. The sores were so bad they began to spread all over my abdomen but the suggestions from my derm did seem to help it just took awhile. I sooo hope you find something that helps you with this looks so uncomfotable. Hugs to you...take care of you
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kimberlie said:Thanks Jenn, I appreciate the info. The best part of it, he is friends with one of Mikes gi's from nc. I miss long island.
Thats good that your GI in NC is friends with him and was able to refer you to someone here. If you miss Long Island then dont eventually buy your house in Kingston!!! Move back to Long Island again!! I am visiting my Dad this weekend upstate. He lives on the opposite side of 209 outside of Port Jervis (Sparrow Bush) on the Delaware. I like visitng but then going back to Long Island. I lived upstate for a short period of time here years back and moved back to Long Island.
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sorry for not coming back sooner
yes my other scar is so little! im proud of that lil sucker, he done good!
i dont really have any observations or explanations of it atm, it is just contiually morphing and changing. the sides have grown in some which is great but the top and bottom are completely ripping open.
this is friday, 5 days after that last pic i posted.
my stoma is sad lol he looks like he drooping. idk why it does that, i think the PG has changed the way it sticks out. i have to ask.
im using the Protopic ointment and cant really tell if its helping or not.
BUT PG speacialty dr is tommorow!! i hope he knows how to fix this.
la la....can you give me any more info on the pectin adhesive pouches?? i think those may help me, i can tell that it does a lot of damage to the wound every time i peel off the appy, and now im doing it every other day. ive been fussing with it every time to try and protect it from the glue and putting telfa pads under there. the pectin things sound awesoem!
yes my other scar is so little! im proud of that lil sucker, he done good!
i dont really have any observations or explanations of it atm, it is just contiually morphing and changing. the sides have grown in some which is great but the top and bottom are completely ripping open.
this is friday, 5 days after that last pic i posted.
my stoma is sad
lol he looks like he drooping. idk why it does that, i think the PG has changed the way it sticks out. i have to ask.im using the Protopic ointment and cant really tell if its helping or not.
BUT PG speacialty dr is tommorow!! i hope he knows how to fix this.
la la....can you give me any more info on the pectin adhesive pouches?? i think those may help me, i can tell that it does a lot of damage to the wound every time i peel off the appy, and now im doing it every other day. ive been fussing with it every time to try and protect it from the glue and putting telfa pads under there. the pectin things sound awesoem!
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imisspopcorn
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Hang in there Kelly...I really hope the PG specialists has some answers for you.
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You're still soldiering on Kelly, I see that and know you'll be okay in the end. This is a healing process, and I know it's not been standard, and the PG is another hurdle, but it's going to be alright, you've got great support here and at home, and it has seemed like your doctors usually know what to do and say. Take care and hang in there.
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welllllllll......nothing really happened. he had a few suggestions of medications and combonations to test. he and my GI are gonna discuss it and then see where we go from there.
essentially it was another i dont really know but here is what to try. which is how we all go about dealing with our crohns anways i suppose ya?
he was a VERY sweet man though. towards the end he said "well kelly....you are a very.....challenged person."
and i busted out laughing like, ya think?? i said " i KNOW i am!"
as hes eyes started getting a little red he said that he knows what i am going through and where i have been, and that having a daugther of his own, he just knows. he said he just wanted to scoop me up in a hug. we stood up and he said hell i AM gonna take that hug and i said me too and he had one little tear on his cheek.
it makes my eyes well up even just rewriting it.
its not so often that tears are shed over someone just met.
he whether his suggestions help me or not he is a great doctor.
essentially it was another i dont really know but here is what to try. which is how we all go about dealing with our crohns anways i suppose ya?
he was a VERY sweet man though. towards the end he said "well kelly....you are a very.....challenged person."
and i busted out laughing like, ya think?? i said " i KNOW i am!"
as hes eyes started getting a little red he said that he knows what i am going through and where i have been, and that having a daugther of his own, he just knows. he said he just wanted to scoop me up in a hug. we stood up and he said hell i AM gonna take that hug and i said me too and he had one little tear on his cheek.
it makes my eyes well up even just rewriting it.
its not so often that tears are shed over someone just met.
he whether his suggestions help me or not he is a great doctor.
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Wow kelly, what an amazing Doctor experience!
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Lishyloo said:
:ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2: :ylol2:
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HAHAH lishy im SO sorry!! thats awful, but it makes a great story!
kimmie--i DID ask him about the chamber, he said that it is very successful at healing wounds, but PG is not like other wounds (which we know). we can hyper oxingynate the wound all we want, but as long as the mechanism of inflammation is there, the wound will go on.
make sense? i thionk thats why mike gets immediate relief and the wound closes, but the roots of inflammation are there just to open up the skin again.
ps, look up Dapsone. i have just heard of it and am researching it. i mentioned this to you somewhere else, maybe it hold some hope.
kimmie--i DID ask him about the chamber, he said that it is very successful at healing wounds, but PG is not like other wounds (which we know). we can hyper oxingynate the wound all we want, but as long as the mechanism of inflammation is there, the wound will go on.
make sense? i thionk thats why mike gets immediate relief and the wound closes, but the roots of inflammation are there just to open up the skin again.
ps, look up Dapsone. i have just heard of it and am researching it. i mentioned this to you somewhere else, maybe it hold some hope.
xX_LittleMissValentine_Xx
Moderator
Kello hun, you are so brave I hope you start healing soon it must be so hard being so sore all the time. Thats so nice of that dr Its nice to know he rly cares.
x x x x
I hope you start healing soon it must be so hard being so sore all the time. Thats so nice of that dr Its nice to know he rly cares.x x x x
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hey everyone, i suppose its time for an update. not too much new to report though.
i started taking Cellcept 2000 mg/day. also getting the kenalog injections again and still doing my best to use the protopic cream. still on the fent patch and the perc but my pain is just manageable at best. some days its just one pill after another its so bad. and then some days 1 will last me all day. ive lost some weight again, not sure why. i tend to be nauseous all the time, it could be the pain itself or the narcotics, who knows. i just started an anti nausea med so well see how that turns out.
my mood is to hell most of the time, but i try and pretend im ok a lot, it is putting too much strain on my family life to show how negative i truly feel. it has caused more fights and stress, so its easier just to force the intrest in daily life.
ill be seeing a new therapist next week that my gi recommended and i hope hell be able to help better than the other guy i was seeing. it was too in depth and emotionally painful to go thru my entire lifes problems right now. i just need a good bandaid until i have the mental emotional and physical capacity to delve into and solve my deep dark problems.
no one seems to understand that. i hope this new dude will get it. as some of you know ive been having a lot of stress from family situations/relationships and that is just piling (is that how u spell that??) on top of everything else. i guess thats why im not really here much, i just want to numb my brain to everything right now, watch tv, read, etc and get away from my mind and all the shit.
anyways, enough poopy party talk.
heres my latest photo, its from today, freshly taken 5 hours ago
as you can see it has opened up a lot since my last photo posted. but it also is a lot pinker in the woundbed which = more bloodflow which = good.
still just thinking and designing and engineering ways to pouch this properly to protect the wound and keep the poo out but also to allow drainage of the skin fluid and then trying to figure out how to divert the fistula from crapping right into the woundbed..
i swear, i need to call up a rocket scientist or something. right now were messing around with tegaderm and just tring to plastic wrap everything to keep poo out.
well see.
edit:: it looks like a pie chart!!!! god everytime i look at it im like "it looks like something i recognize but what..." lol pie chart.
i started taking Cellcept 2000 mg/day. also getting the kenalog injections again and still doing my best to use the protopic cream. still on the fent patch and the perc but my pain is just manageable at best. some days its just one pill after another its so bad. and then some days 1 will last me all day. ive lost some weight again, not sure why. i tend to be nauseous all the time, it could be the pain itself or the narcotics, who knows. i just started an anti nausea med so well see how that turns out.
my mood is to hell most of the time, but i try and pretend im ok a lot, it is putting too much strain on my family life to show how negative i truly feel. it has caused more fights and stress, so its easier just to force the intrest in daily life.
ill be seeing a new therapist next week that my gi recommended and i hope hell be able to help better than the other guy i was seeing. it was too in depth and emotionally painful to go thru my entire lifes problems right now. i just need a good bandaid until i have the mental emotional and physical capacity to delve into and solve my deep dark problems.
no one seems to understand that. i hope this new dude will get it. as some of you know ive been having a lot of stress from family situations/relationships and that is just piling (is that how u spell that??) on top of everything else. i guess thats why im not really here much, i just want to numb my brain to everything right now, watch tv, read, etc and get away from my mind and all the shit.
anyways, enough poopy party talk.
heres my latest photo, its from today, freshly taken 5 hours ago
as you can see it has opened up a lot since my last photo posted. but it also is a lot pinker in the woundbed which = more bloodflow which = good.
still just thinking and designing and engineering ways to pouch this properly to protect the wound and keep the poo out but also to allow drainage of the skin fluid and then trying to figure out how to divert the fistula from crapping right into the woundbed..
i swear, i need to call up a rocket scientist or something. right now were messing around with tegaderm and just tring to plastic wrap everything to keep poo out.
well see.
edit:: it looks like a pie chart!!!! god everytime i look at it im like "it looks like something i recognize but what..." lol pie chart.
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Hey Kello, I was just thinking of you today. Wondering how you were doing and such. I hadn't seen ya around or talked to you in a long while. I also haven't been around much either tho. I'm sorry to hear you're having such a rough time of it. Thanks for continuing to update us though and provide pics. I don't know much about what you're going through, but I still wish and hope that you'll get moving on the right side of healing soon! Keep your chin up Kello, you're a remarkable young woman.
Awe Kelly, I'm praying for you my friend. I hope everything gets better soon although having blood flow to your wound is a pretty good sign and I'm happy to see that.
I hope you can keep the poop out of it so it can stay clean. I'm getting nervous about myself getting an ostomy soon and that freaks me out.ugh Sorry about that, I just wanted to tell you that you always have us here and I'm always saying prayers for you.
Jeff
I hope you can keep the poop out of it so it can stay clean. I'm getting nervous about myself getting an ostomy soon and that freaks me out.ugh Sorry about that, I just wanted to tell you that you always have us here and I'm always saying prayers for you.
Jeff
imisspopcorn
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I was wondering where you have been lately. I'm sorry you are having to deal with this. I will be praying for you as well.
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Hi Kello! So sorry to hear you are STILL having suck a battle with everything You are a remarkable young woman and I am sure you will be well eventually. Don't go disappearing for too long, we miss you round here!
You are a remarkable young woman and I am sure you will be well eventually. Don't go disappearing for too long, we miss you round here!I was thinking of you only t'other day, wondering how you were doing. That looks pretty horrible to have to deal with.
((((hugs from me and the Bears))))
I've had 'therapy' in various guises, the only one that really did what it said on the tin was Cognitive Behavioural (CBT). I think in part that I got on very well with the guy, and he practiced a much more scientific approach: find the root problem before looking for the solution, rather than a 'hand-wavy-oh-that-must-be-terrible- lets see if a solution comes out the woodwork' that I had previously.
((((hugs from me and the Bears))))
I've had 'therapy' in various guises, the only one that really did what it said on the tin was Cognitive Behavioural (CBT). I think in part that I got on very well with the guy, and he practiced a much more scientific approach: find the root problem before looking for the solution, rather than a 'hand-wavy-oh-that-must-be-terrible- lets see if a solution comes out the woodwork' that I had previously.
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Oh, I'm so sorry that things are still so tough for you. I really will be praying for you and sending you all my best wishes from here in Australia.
Keep fighting the good fight Kelly! x
Keep fighting the good fight Kelly! x
My Butt Hurts
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I've been wondering about you too, girlie. Glad you stop in from time to time to update us. Hooray for pink skin! I hope you keep healing up, a little more each day. What anti-nausea med are you going to be taking? I've heard good things about phenergren (sp?).
It can be hard to pretend you're fine for your family, so vent to us all you want.
Thinkin' about ya'.
It can be hard to pretend you're fine for your family, so vent to us all you want.
Thinkin' about ya'.
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Yeah I've noticed a Kello lull, but then a couple days ago I saw a few of your posts. All I can say is I hope you start healing! We all know I don't pray, but I will be thinking about you!
Glad to see your post Kelly. Very sorry to hear all that you are going through. It just never seems easy or simple which is so unfair because you so deserve some easy and simple time at this point. I will be praying that a whole BUNCH of that is coming your way. Hope the new therapist fits the bill and can help you cope with this sh*t. Glad that the wound seems to be pinking up - hoping some beautiful, new healthy skin will present itself!!
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I just noticed this thread, and spent hours today reading through it all. The first time i saw your stoma picture it brought tears to my eyes, as well as many other posts. I'm so sorry you're going through all this....i don't know how old you are, but this is more than ANYONE should have to deal with, let alone a young adult. It is completely understandable that you're in a bit of a funk, and i'm sorry you feel like you have to mask your feelings to make everyone else more comfortable with things.
I truly hope for healing for you this year, emotionally and physically, as i can see that you're an incredibly strong woman, with tons to offer this big world of ours!
Probably weird because i don't know you, but lots of love and prayers, and you will be in my thoughts.
Pam
I truly hope for healing for you this year, emotionally and physically, as i can see that you're an incredibly strong woman, with tons to offer this big world of ours!
Probably weird because i don't know you, but lots of love and prayers, and you will be in my thoughts.
Pam
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thank you guys, your kindness never fails to make me teary
it means so much that even when im not here very much you all still post up a storm for me
mbh--im takin zofran 4mg 3 times a day atm. if it doesnt seem to do enough ill definitly ask for phenargen (sp), so far i cant really tell how its working though.
pam--gosh, you are a freakin sweatheart! i cant believe you read thru this entire novel of a thread, that really touches me that you cared to read it all. and i dont feel its weird at all i so much appreciate love and prayers whether i 'know' someone or not. thank you
oh yea, i am 19 btw, but i will be 20 on tuesday!! i cant believe it lol
thank you guys, come to think of it, MANY of u have read my entire thread as it was written, and pam did it all in one sitting lol! either way, the fact that yall care what i have to say? i just love u all.
it means so much that even when im not here very much you all still post up a storm for me
mbh--im takin zofran 4mg 3 times a day atm. if it doesnt seem to do enough ill definitly ask for phenargen (sp), so far i cant really tell how its working though.
pam--gosh, you are a freakin sweatheart! i cant believe you read thru this entire novel of a thread, that really touches me that you cared to read it all. and i dont feel its weird at all
i so much appreciate love and prayers whether i 'know' someone or not. thank you oh yea, i am 19 btw, but i will be 20 on tuesday!! i cant believe it lol
thank you guys, come to think of it, MANY of u have read my entire thread as it was written, and pam did it all in one sitting lol! either way, the fact that yall care what i have to say? i just love u all.
Glad you're back, even if you haven't really been away. Hope the new therapist measures up.
Hey! I would have posted this in the other thread, but I didn't see it till now.
First off...your thread is totally NSFW...those stoma pics would have been a shocker if someone was standing over my shoulder.
Second ... Lala's recommendation for a pectin only appliance -- that's what I'm using now (a hollister two-piece floating flange pectin only). Basically, my skin broke out if I used ANY type of tape, so finally the nurses put me in this and my skin's been way better since then. For me, I think my skin is too sensitive for the adhesive in the tape. I've been in the pectin the whole time with the PG, and honestly I'm not sure it would help with the trauma from bag changes. Honestly, the best for that seems to be to just where the bag as long as you can until its sufficiently loosened and to use the acqua-cell or acqua-cell alternative underneath. But boy am I having leakage problems!
Anyway, that's my two cents on leakage problems.
And may I rehash...your stoma looks icky. Glad to hear you had such a nice doc visit. My dermatologist is Austrailian...so that's always fun.
First off...your thread is totally NSFW...those stoma pics would have been a shocker if someone was standing over my shoulder.
Second ... Lala's recommendation for a pectin only appliance -- that's what I'm using now (a hollister two-piece floating flange pectin only). Basically, my skin broke out if I used ANY type of tape, so finally the nurses put me in this and my skin's been way better since then. For me, I think my skin is too sensitive for the adhesive in the tape. I've been in the pectin the whole time with the PG, and honestly I'm not sure it would help with the trauma from bag changes. Honestly, the best for that seems to be to just where the bag as long as you can until its sufficiently loosened and to use the acqua-cell or acqua-cell alternative underneath. But boy am I having leakage problems!
Anyway, that's my two cents on leakage problems.
And may I rehash...your stoma looks icky.
Glad to hear you had such a nice doc visit. My dermatologist is Austrailian...so that's always fun.
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hahah well let them be shocked then
teach em a lesson to get the hell out of your office and stop whining about their long meeting huh? lol!
wow great i didnt kniw hollister made the pectin bags, im deff orde4ring some to try out. are they easier to remove than the regular version? cause see, what i really need to do is open it up like every day to rinse to poo out, becuase i have no control over the fistula and there is almost always poo sitting in the wound you know?
i need an appy that i can remove and put back at my leisure without it being like a frickin brazilian wax every time!!
ive been exploring tegaderm, one time it worked very well, but i havent gotten it to be as good since. i went 36 hours with no leak that time. if i get it tucked in there just right then it protects the wound from the fistula, but it doesnt like to stay there.
does your pg itself leak fluid? thats a big one for me too, all this fluid loosens the flange and then the poo's escape is 520850213 easier.
haha i LOVe aussie accents
teach em a lesson to get the hell out of your office and stop whining about their long meeting huh? lol!
wow great i didnt kniw hollister made the pectin bags, im deff orde4ring some to try out. are they easier to remove than the regular version? cause see, what i really need to do is open it up like every day to rinse to poo out, becuase i have no control over the fistula and there is almost always poo sitting in the wound you know?
i need an appy that i can remove and put back at my leisure without it being like a frickin brazilian wax every time!!
ive been exploring tegaderm, one time it worked very well, but i havent gotten it to be as good since. i went 36 hours with no leak that time. if i get it tucked in there just right then it protects the wound from the fistula, but it doesnt like to stay there.
does your pg itself leak fluid? thats a big one for me too, all this fluid loosens the flange and then the poo's escape is 520850213 easier.
haha i LOVe aussie accents
My god Kelly your a F**KEN legend in my books for all you have been thru over the last year. I started to read your posts and got totally caught up in your story Im so sorry the area around your stomy still hasn't healed. You have brought me to tears a few times with what you have battled through, I don't know if I would have had the strength to go thru what you have and at such a young age. You are such a brave wonderful person who I dearly hope has a better 2010! Best wishes to you and your family. xxx
- Joined
- Jan 4, 2010
- Messages
- 99
Kello, I have just recently joined and only picked up your thread yesterday. I spent a couple of hours reading the whole thing and just have to say you are amazing! I am a complete Kello fan. I pray everything goes well for you and you have a better 2010.
