Does Anyone use a Port for their Infusions?

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rlc06
Regular Member


Date Joined Aug 2006
Total Posts : 184
   Posted 12/4/2008 3:36 PM (GMT -7)   
My Drs Office wants me to get one and well I dont really want one. I get my infusions every 4wks at 1200mg they say that the remicade has weaken my veins, it took them 9 pokes to get it right and lets just say im really bruised from it and they even used a butterfly needle. I was just wanting to know if there is anyone who has a port and if they have had any problems with it.
 
Thanks
Mary
Mommy
 
 
Diag with Crohns of the colon May 1998 after birth of child in 2001 disease moved North and Left the colon. I now have Crohns of the Mouth all the way thru to the Colon. Currently on Remicade but not working so well that now meds are every 4 weeks at 1200mg. Chronic D 30-50 times daily with on and Off Joint pain and swelling of stomach when dose of meds wears off 2 weeks after infusion. 
 


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 12/4/2008 5:08 PM (GMT -7)   
I assume your talking about 'drawing blood' thats what butterfly needles are used for. They do have smaller gauges, like a pediactric needle can be used depending on the medication, and I'm pretty sure remicade can go through it.

It took years of the ER complaining that I had horrible veins, even IV therapy could rarely get them in me, I would always have to wait extra long because they'd end up having to go in the tops of my feet, which you need drs approval for because of risk of infection. My surgeon said the nurses were just lazy, which I found sort of humerous, but I see they just wanted to have me not get poked and prodded so much for my own comfort, I'm so used to it it didnt bother me anymore. Eventually I asked myself and did get a port, the brand name is powerport, which I've read is the only port that is actually suitable for use with a CT scanner, for the dye. Because of the pressure the CT puts on the tubing it'll blow out most ports so be sure to ask about this. It really wasnt a bad time getting it in, I mean for me now it was considerably harder because all of my viens and arteries were considerably smaller, I first went in the OR so my surgeon could do it and he couldnt get it, he tried twice while in the OR, then he stopped and sent me to an interventional radiologist, which went smoother but they didnt understand my tolerance the least bit so I basically was like taking tylenol to go through this invasive procedure. I have to admit though the port itself is very nice and very practical. But it is my luck that once I get it installed I dont use it nearly as much as I used to use my viens. But I dont have to wait for someone with better skills as an phlebotomist nor to get drs approve to go in my foot either. So first try and I'm good.

Seems to me your not being treated agressively per se, and Remicade alone isnt much, most people are on considerable amount of medication before and while on Remicade. as a matter of fact I think I've heard and read numerous times that remicade has had better results in conjunction with medications like Prednisone. or even Methotrexate.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 12/5/2008 3:24 AM (GMT -7)   
hi mary... well i have a hickman catheter in my chest, but it is mainlyused for TPN and antibiotics.. yes i have done remicade through it. and iron infusions, and anything else they want to do.. as for using one for a CT , we used mine for that untill it has gotten a little old.. 6 years next feb. so now we are a little worried because of the age.. . i think it depends on the size as well... mine is a 12 french double lumen.. a standard picc line is much smaller. a port, dont know nevver had one... the weirdest one i ever had was a 4 lumen neck thing. came right out the side of my neck.. plus i had a picc and one or two in each arm all at the same time... as you can imagine i was very sick :0)... had sepsis.
randynoguts 



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Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 12/5/2008 6:21 AM (GMT -7)   
I'm ported. Have been for a little over three years now and its a lot better than all the stabbing I was getting with remicade. I think 12 was the record. They still draw blood with a butterfly needle but they can use the port if they have trouble. They have to have an RN though. I dont even feel the port anymore unless I look for it and mine is much larger than my wifes, so you should do fine with one..Good luck.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 12/5/2008 7:42 AM (GMT -7)   
You have pretty severe symptoms 2 weeks after your infusion...I would be thinking of changing to something else. I have been on remicade for 4 years this month. I still get it every 8 weeks....no port yet. I know if my symptoms came back that soon, I would be looking for something else....

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/5/2008 7:52 AM (GMT -7)   
I think it is very common for us Crohnies to eventually develop bad viens. I know I continually get stuck multiple times even with blood draws. Most times when then need to take blood they have to take it from the top of my hands.

Personally, I would get the port if I were you. Why suffer with multiple pokes every single time? JMHO
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


rlc06
Regular Member


Date Joined Aug 2006
Total Posts : 184
   Posted 12/5/2008 4:04 PM (GMT -7)   
Hi thanks for all of the input. Im afraid that I would end up with an infection.
 
Mary
Mommy
 
 
Diag with Crohns of the colon May 1998 after birth of child in 2001 disease moved North and Left the colon. I now have Crohns of the Mouth all the way thru to the Colon. Currently on Remicade but not working so well that now meds are every 4 weeks at 1200mg. Chronic D 30-50 times daily with on and Off Joint pain and swelling of stomach when dose of meds wears off 2 weeks after infusion. 
 

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