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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Needing a port... Totally confused!


01-08-2014, 12:05 AM   #1
kristihelene
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Needing a port... Totally confused!

So over the last 6 months, every Remicade infusion takes tons of sticks to get a vein, and most of the time they slowly leak causing lots of pain, swelling and bruising. The "icing on the cake" was when I was in for my surgery last month, it had to be delayed over an hour because no one could get the IV started - not even the IV team or anesthesiologist! (My surgeon was not pleased...). My infusion nurses and the surgical team all recommended I get a port. Then, I was back in the hospital and they couldnt' get a line big enough for IV dye which again caused delays and problems and I thought, OKAY its time! So I called my GI who told me he doesn't really have patients on Remicade that get ports... so that'd be something I'd have to do through my PCP... I meet my brand new PCP THURSDAY so any answers before then would be GREATLY appreciated!!!

Here are my questions:

1) Obviously this thread exists, so patients with IBD do sometimes need ports... Is my GI severely misinformed and how do I handle this discussion with him at my next appt since he didn't really sound too onboard with me getting a port?

2) From my research, it looks like a need a "power port" since I get CTs with contrast pretty frequently - does anyone have experience with these?

3) Can blood draws be done through ports? I didn't think so, I thought only through PICCs but after reading some threads it looks like some of you have had Ports that were used for blood draws

4) I get Remicade every 6 weeks and blood tests monthly due to the methotrexate... Assuming it CAN be used for blood draws, what type of facility can access my port for my blood draws when I'm not at the infusion center, because I know it has to be a sterile procedure so guessing your "run of the mill" lab can't do it... ?

5) Given the above infrequency of use, will the once a month flush suffice or will I need to learn to flush at home.

6) Lastly -- What is involved in the placement? Please tell me its general anesthesia... I don't twilight for something like this! Ive had PICCs when in hospital which I know are placed bedside, but since this has a line that gets threaded so deeply, I'm assuming its a least an outpatient surgery? What is the recovery like?

Thank you all - Getting a port is all new territory for me and having to do my own research/guide me own care is frustrating!
01-08-2014, 01:30 AM   #2
Jennifer
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1 - My GI had me get a port after my diagnosis in case there was an emergency. I was 9 years old and had the port for a year. Dehydration can make it hard to find a vein and I think that may have been one of the reasons why I got one.

2 - I do not sorry.

3 - Yes they can. If they're having trouble giving you an IV, they are having trouble taking blood as well so ports can be used for blood draws.

4 - My old lab did the blood draws yet this was 22 years ago so maybe times have changed? I doubt it but you could go to a lab at a hospital but definitely worth asking your doctor to be sure.

5 - Flushing is different for everyone but once a month doesn't sound often enough. Again, I had mine 22 years ago and it was flushed twice a day. My mom was taught how to do it and the process is pretty simple. If you do start flushing it yourself, be sure to be sitting when you do it cause sometimes the medication (heparin was what I was given) made me feel light headed and I bet I would have fallen over if I were standing. The point of flushing it is to help reduce the risk for blood clots (one of the major concerns about having a port) so be sure to ask your doctor this question as well. I believe some members on the forum flush theirs once a week.

6 - I was put to sleep for it. It was stitched into place and couldn't shower until it was healed (I think I just continued baths after it was put in for the entire year I had it, but I believe you should be able to shower after it's healed, always ask). I believe I went home after the surgery was over and was told to avoid exercise until it was healed (can't remember the exact amount of time or how long it took to fully heal).

Hope it goes well. I'm going to tag some people to see if they can help answer your questions as well. Naturelover, Afidz, any input is appreciated.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
01-08-2014, 01:16 PM   #3
jlm
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Things have definitely changed from 22 years ago lol. Thats crazy to think you had to flush twice a day.

1.) I have a port (almost 2 years now). I have it for TPN. But I also have pretty bad vein access so it comes in handy. Its definitely not uncommon
2.)Yes you'll need a power port. Your port should come with paperwork, or a little card that you can take with you to your appointment. But it's really only good if you are needled in or someone in the CT department knows how to needle in to a port. In Canada it's a specialized procedure and not all nurses are able to do it. My port stays needled in 5 days a week and I change it myself because I use it nightly.
3.)Blood draws can for sure be done. Again its dependent on if someone at the lab is trainded to access it. PS I use emla cream on my port 45 minutes before It needs to be accessed, that why I don't feel a thing
4.) you'll have to research facilities in your area. My local labs here won't even access my port when it's needled in!
5.)My port needs to be flushed and heparnized once a month.
6.) As for the procedure itself it wasn't done under general anesthic, they used the same stuff my GI uses for a scope. Fentynol (spelling) and can't remember the other one. It was a while ago so I can't remember exactly who did it but it wasn't done in an OR it was done in some special cardiac unit. It really wasn't a big deal, I didn't feel a think or remember any moment of it. I literally came too mid conversation with my nurse. I have a small incision on my upper right chest area and you can see my port quite well since I have a smaller build. As for recovery, I was actually quite sore for a few days, my right arm was pretty useless. The pain stayed for quite a while but it wasn't to bad. If you have any other questions let me know!
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01-10-2014, 12:10 AM   #4
Naturelover
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kristihelene,
I have a Bard Power Port. I use it for daily IV hydration, blood draws almost weekly as well as IV antibiotics when needed. When your port is accessed (has the needle in) you will have a dressing over it to keep it sterile. It is impossible to keep the dressing dry when you shower so tub baths or bird baths become the new norm. RN's are the only ones allowed to change the dressing and needle to a port, so you are correct that most local labs will not touch your port even if the needle is already in the port. Only those RN's who have the proper training are allowed to access your port or change the dressing and needle. You may find that you have to go to either the hospital or hospital outpatient center to have contrast studies done. (I've had to have two contrast studies done. I went to a hospital for one and a hospital outpatient center for the other. I recently had an endoscopy w/colonoscopy done at a hospital outpatient center so my port could be used for hydration and IV sedation as well as IV fluids.) Again, it's the RN thing as well as individual site policies coming into play. You may have to be firm with your local hospital to get it done if they say they can't bill out patient for the procedure. Experience talking here. If that's the case, ask to speak to the head of the radiology dept. Explain your situtation and you will be amazed how they will work to accomodate you. They can figure out a way to bill your insurance. Any time your port is accessed for blood draws, contrast studies or IV's of any kind, the port needs to be flushed with saline before it is used. Once you are done with using the port, it needs to be flushed again with normal saline as well as heparin.(This is an easy procedure for you to do at home.) This procedure is called a heparin lock. If you are not going to be using the port for awhile and remove the needle, please make sure a heparin lock is done before removing the needle. You do not want to loose the port due to blood clotting in it. There are things they can run through the port to try to bust up clots in the port, but you are better off avoiding that situation.
I was in an OR for port placement. My vascular doc will not do anything to my port unless I am in the OR. Due to my medical condition, I have a lowered immunity. In general, I personally believe it's best to place a port in the most sterile situation as possible. Ports are finite. They do need to be changed or removed at some point. Since the line to the port is placed into a main artery, you need to be very careful about making sure everyone, including yourself, uses sterile procedures when handling your port. The last thing you need is sepsis. Educate yourself on the signs and symptoms of blood clots. Some people get them because the body recognizes the port as a foreign object in the body and forming blood clots is the way the body fends off foreign objects. Other people never get blood clots while having a port. Only time will tell what your body will do. Ports are wonderful to have. I'm very grateful to have my port and can't imagin life without one.
Let us know if you get the port.
Everyone's experience with recovery from port placement is different. I took a while to recover from mine. Also, what you can and cannot do while having a port is an individual thing and varies from person to person. Contact sports or activites where you are at a great risk of falling or having someone or something coming into contact with your port is prohibited. If your port is compromised in any way, no medical professional is allowed to access it until x-rays and dye studies are done to ensure the safety and integrity of the port. Again, experience talking here. Been there, done that. Depending on port placement, shoulder seat belts can be a issue. My port is highly visible. The placement of my port interfeers with wearing a bra. When I do wear a bra, I have to slide it more towards one side and have the strap slightly off the shoulder to avoid interference with the port. TMI!
Hope this helps. Feel free to PM me.
01-10-2014, 08:39 AM   #5
jlm
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I have no problems showering. The dressings i use are water proof and quite sturdy. The hold up for a full five days with regular showers.
01-11-2014, 02:05 AM   #6
Naturelover
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I have no problems showering. The dressings i use are water proof and quite sturdy. The hold up for a full five days with regular showers.
What kind of dressings do you use? I use Sorbaview. I've tried others and had issues w/them.
01-11-2014, 01:12 PM   #7
jlm
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I use Tegaderm Film. They're 4 inch by 4 3/4 inch. I much prefer the Tegaderm IV dressings (the larger size) they're round with a slit for the tubing to go through. But my medical supplier doesn't stock these ones.
01-14-2014, 01:39 PM   #8
kristihelene
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Thanks everyone!! Working on finding a vascular doc to help
Me get this rolling!


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