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Anyone have a "port"?

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Crohn's Disease
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Posted 9/6/2012 12:48 PM (GMT 0)
So, I had another trip to the urgent care tonight. I had severe abdominal pain, fever, diarrhea (twelve trips a day), blood in and on my stool, nausea, and vomiting. Same old, same old. They had to poke me three times to get the blood they needed for tests. The nurse I had came in the room, turned her head to the side and said, "Oh sweetie. You again? Got any viable veins for me this time?"
She then proceeded to ask me if I have ever thought of getting a port. I don't know much about them, and thought this was something your doctor had to decide for you. Can I just ask my doctor if I can get a port? Since I'm such a hard draw, I think it would be best. At least according to the research I've done. Any thoughts?
Posted 9/6/2012 1:01 PM (GMT 0)
I have had a port for many, many years. It does make blood draws and IV's easier. You do have to take special care of it. Making sure to get it flushed with heprin at least every six weeks when not in use. You will find also that not just any one can access it. So if you go to Lab corp or any place like that they will not be able to access it. I have found that I have to either go to the hospital or to an infusion center to have it accessed for blood work. But it has also been a life saver for me and well worth it since I don't have any good veins left. Some hospitals will tell you that they can not use it if you have surgery or if your having like a CT with dye....but I have never had a problem with the port when they have used it for CT's or surgery. They just have to take extra precautions because they had no other choice.

Good Luck, I love my port!!

Posted 9/6/2012 1:02 PM (GMT 0)
I've thought about the same thing. I've been to the ER 4 or 5 times just in the month of August. I've gotten PICC lines twice in that time, then had it taken out a day or two later because I went home only to go back 3 days later and be frustrated.

(You can read about some of the drama on my post here: www.healingwell.com/community/default.aspx?f=17&m=2504443)

The only thing about ports you need to be very careful about is that it's very easy to get them infected. My doctors wouldn't let me get one, even though I've been to the ER 13 times since February this year and 10 of them I was admitted for 3-8 days. I wasn't a hard stick before but now because my veins have been overused, it takes a while to find one and then it becomes infiltrated within a couple of days (the vein walls begin to break down and the fluids and meds go into the surrounding tissue, causing the site to swell). One time my entire forearm became twice as large as my other. Actually, that's happened a couple of times.

I think it's a great idea to talk to your doctor about; I wanted one. Again, just be careful of infection. My doctors felt like for me, personally, it wasn't worth the risk. But it might be for you. Good luck! Keep us posted on how it goes!
Posted 9/6/2012 3:49 PM (GMT 0)
I got my port almost a year ago and its been a lifesavor! Like someone else mentioned, labs can't access them, so I do still get stuck on occasion. But aside from that, I would highly reccommend it. I don't think its just something you can "request" from the dr, but if you are serious I would bring it up and see what he thinks. I am lucky in that I work with Oncology nurses, so they flush it for me saving me trips to the dr office.
Posted 9/8/2012 7:41 AM (GMT 0)
Thank you for your experiences. I will schedule an appointment with my doctor and ask him about it. Uh...is it my PCP (primary care physician) or my GI doc that I ask about it?
I am starting another flare up, and he want to put me back on Remicade, so would it be what they use for that?
Posted 9/8/2012 1:28 PM (GMT 0)
I would first ask the GI and then your PCP. I don't know specifically about ports and Remicade, but I've been in the hospital twice now when I'm supposed to be getting Remicade, so they just added it to the IV and fluids. I imagine that it would be just fine in the port.
Posted 9/9/2012 12:00 AM (GMT 0)
Yes, they would be able to do the remicade using the port. It makes it so much easier. I would talk to your GI Doc first since they tend to know more of what you have to go through with crohns.
Posted 9/9/2012 1:23 AM (GMT 0)
Do the port! It was a lifesaver for me, seriously. As far as for CT scans and the like, nowadays they typically place power-ports in everyone so that CTs and other stuff can be pumped through them. I had mine for 4 years, had it taken out right after my ileostomy surgery b/c they thought it had gotten infected - turned out it wasn't but oh well. I got mine b/c once I went vaso-vagal on my infusion team during a Remicade treatment, they told me GI - get her a port and no more infusions!
Posted 9/10/2012 2:17 AM (GMT 0)
I currently have a port and have had it for over 6 years. I love it and also feel that it has been a life saver. I have to go to the Infusion center at my local hospital every 6-8 weeks to have it flushed though. Not sure if you can just request it but would certainly give it a try.
Posted 9/10/2012 2:56 AM (GMT 0)
I have had a Power port and numerous PICCs. I have the same issues with over-used veins. Previous posters have defined the main benefits and limitations of Ports/PICC. They can become infected and,in the worse case scenario, cause significant health issues. I have had an infected Port and many a PICC , but fortunately, the symptoms were minimal, and another one was eventually inserted.
We have only four (total) 'comfortable' sites for PICC/Ports on our arms, and a couple of less comfortable sites elsewhere on our bodies. Hospital ER's, Urgent Care Centers, and office staff generally (in my limited experience), have seen more PICCs than Ports. Only a Registered RN is allowed to draw blood from
a PICC (I assume it's the same regarding Ports). I am currently receiving TPN (two months) with a PICC and expect (like yourself) to be using a PICC for reintroduction of Remicade in the next few weeks. Professionals tell me it's easier to remove a PICC quickly that a port, for whatever that's worth, wink! wink
Posted 9/10/2012 8:18 AM (GMT 0)
I've always been a hard draw, but this last trip to urgent care was the worst! They almost couldn't get the blood that they needed from me. Ive had PICC's three times while in the hospital. I'm going to set up a phone visit with my GI to ask about a port. Since I'm going to need blood draws every two months from now on, and I'm such a hard draw, I think it'll just be easier for everyone. My flare up is still getting worse, so hes probably going to want to put me back on Remicade. Thanks everyone for your advise, suggestions, and stories. I always find coming here useful. Thanks!
Posted 9/11/2012 6:00 PM (GMT 0)
Hi again,

My GI and PCP both decided it would be good for me, but my PCP is the one that referred me to the general surgeon who put the port in. I have had picc lines and midlines for years, but I have gotten a few blood clots from them, so they decided to just go on with the port. It's been such a blessing. And my life has not changed from it. I still snow ski, water ski, flip on the trampoline, ride roller costers, pretty much everything I did without it. I am conscience of it and try not to put pressure on it. Anyways, I def say go for it!
Posted 9/12/2012 8:36 AM (GMT 0)
My PCP and GI have not really dealt with Ports at all, so they have set up an appointment for me with a general surgeon to have a consult. My husband wants to wait on giving me an opinion until he has to hear what the GI says about it.
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