- Joined
- Mar 14, 2014
- Messages
- 11
I've been here before, its been a few years and im not sure if anyone would remember me. my old username was Spoonninja or spoonie. Well there is a reason ive not been on in years, a lot has happened. apart from graduation high school (still not sure how i pulled that off with all time i missed) ive gotten a boyfriend going on 3 years with him and he has a now 7 year old daughter. ive taken to them both and stepped in as a mother figure to his daughter because her bio mother is basically a dead beat. (maybe more on that later should anyone be curious 
) Ive talked with him and his family about my Crohns and they are all understanding and comforting, but recently i have been having a lot of problems and i need some advice and this was the only place i knew i could turn.
so here it goes
ive been on remicade since 2009 last year in november my remi nurse who i have every time i go, said my veins were getting too hard to get they even had a picc team come in with an ultra sound and still had to poke me 2 times to get a vein because they were rolling because they had thickened so much and were blowing when they did get a vein. so she suggested a port. i readily agreed having researched them previously when i found out i would be on remi for a while and would probably need one eventually. so on october 1st i had one put in my left side just under my collar bone. everything seemed great, accessed fine but the scar had some slight oozing but no smell fever or redness to indicate infection. the remi nurse and the sugeon who put it in said it was probably the internal stitches not dissolving right and it was my body trying to reject them, it would be fine, no signs of infection. ok awesome, right? not awesome. it took me until february to get answers, i went in to the surgeon he was going to lidacane me up and cut out the scar tissue and stitch it up, because it was still oozing but no stitches had come out. im laying there fully conscious and he is cutting and gets really quiet and calls a nurse in. he whispers something to her then tells me,"we are going to have to cut the whole port out, there is infection underneath it" so fully awake only numbed, i hear and feel him cutting my skin off and then feels like he is trying to pull my ribs out then crushes me pushing so hard after the port comes out, im in tears but laying still and quiet, until i try to get up and am shaking uncontrollably i couldnt even get my coat on. and the kicker? he left the wound open so i had to pack it every day. this lasted 4 weeks, then he puts a new port in my right side, because "infections rarely happen" (which by the way he didnt tell me what the infection was just that is was a common skin infection that shouldnt be there and was very unusual.
NOW. now it is march and my new port, the scar is doing the same thing as the first, but he didnt use any stitches and glued the incision closed. so what the hell right? I am completely lost on what to do, i go see him monday and i also am going to see my GI. im worried being on remicade so long is casing the infections because i have taken every precaution, he had me on antibiotics 2 weeks before surgery iv antibiotics during and oral 2 weeks after, i have been showering with antibacterial soap and been very careful to keep it clean.
The worst part... i believe the stress from dealing with this bs of trying to get a port put in has caused me to go into a flare up which ive been in remission about 2 years.
I need advice i need something idk i feel like im drowning trying to get this crap figured out, if this port had to be removed i dont think i can handle feeling him cut it out again i dont think it is worth trying to have one placed in my arm leg or stomach if its the remicade making infections more likely and if thats the case should i stop remicade to get the port to heal and if i stop remicade is there even still a reason for the port? i feel so lost and i dont know anyone who i can turn to for answers and anything would help at this point.
) Ive talked with him and his family about my Crohns and they are all understanding and comforting, but recently i have been having a lot of problems and i need some advice and this was the only place i knew i could turn.so here it goes
ive been on remicade since 2009 last year in november my remi nurse who i have every time i go, said my veins were getting too hard to get they even had a picc team come in with an ultra sound and still had to poke me 2 times to get a vein because they were rolling because they had thickened so much and were blowing when they did get a vein. so she suggested a port. i readily agreed having researched them previously when i found out i would be on remi for a while and would probably need one eventually. so on october 1st i had one put in my left side just under my collar bone. everything seemed great, accessed fine but the scar had some slight oozing but no smell fever or redness to indicate infection. the remi nurse and the sugeon who put it in said it was probably the internal stitches not dissolving right and it was my body trying to reject them, it would be fine, no signs of infection. ok awesome, right? not awesome. it took me until february to get answers, i went in to the surgeon he was going to lidacane me up and cut out the scar tissue and stitch it up, because it was still oozing but no stitches had come out. im laying there fully conscious and he is cutting and gets really quiet and calls a nurse in. he whispers something to her then tells me,"we are going to have to cut the whole port out, there is infection underneath it" so fully awake only numbed, i hear and feel him cutting my skin off and then feels like he is trying to pull my ribs out then crushes me pushing so hard after the port comes out, im in tears but laying still and quiet, until i try to get up and am shaking uncontrollably i couldnt even get my coat on. and the kicker? he left the wound open so i had to pack it every day. this lasted 4 weeks, then he puts a new port in my right side, because "infections rarely happen" (which by the way he didnt tell me what the infection was just that is was a common skin infection that shouldnt be there and was very unusual.
NOW. now it is march and my new port, the scar is doing the same thing as the first, but he didnt use any stitches and glued the incision closed. so what the hell right? I am completely lost on what to do, i go see him monday and i also am going to see my GI. im worried being on remicade so long is casing the infections because i have taken every precaution, he had me on antibiotics 2 weeks before surgery iv antibiotics during and oral 2 weeks after, i have been showering with antibacterial soap and been very careful to keep it clean.
The worst part... i believe the stress from dealing with this bs of trying to get a port put in has caused me to go into a flare up which ive been in remission about 2 years.
I need advice i need something idk i feel like im drowning trying to get this crap figured out, if this port had to be removed i dont think i can handle feeling him cut it out again i dont think it is worth trying to have one placed in my arm leg or stomach if its the remicade making infections more likely and if thats the case should i stop remicade to get the port to heal and if i stop remicade is there even still a reason for the port? i feel so lost and i dont know anyone who i can turn to for answers and anything would help at this point.
