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Getting a port next week

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Crohn's Disease
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Posted 3/29/2018 3:51 PM (GMT 0)
After some struggles with my disease recently, there is one final issue that I am consistently having: dehydration. I was in the hospital about two weeks ago for seven days, and they basically threw the book at me (put me on cipro/flagyl, IV steroids (now prednisone), and an extra dose of remicade (had three loading doses, basically) which they just started for the third time in my life, hoping it will take again as I have run through all biologics available at least once.

I had been getting fluids once a week, recently has gone up to twice a week (two liters of bags each time). I had a doc appointment a couple days ago, and we decided to get me on daily infusions of a liter a day. For this, they are going to install a port. I had the option between that and a PICC, and while the port I have to stick myself with a needle, I love the idea of being able to take the catheter out and swim or shower without issue. I think, sadly, this is going to be a TFN thing, as I ended up in the hospital for pain and dehydration, which I think the pain stemmed from being dehydrated, causing my intestines to spasm. I can tell the ER is starting to get tired of me coming in, as I have been there about 5 times this past month.

Anyone else here have to receive fluids as frequently as me, or have a port that they can share an experience with? It sounds to me they are going to put me in twilight while I get the port installed, which is great as I am a little freaked out about them doing stuff in my chest area. The needle aspect isn't super scary, as I give myself methotrexate shots weekly. I think they said they will give me emla cream to help with the needle poke.

Thank you!
Posted 3/29/2018 5:02 PM (GMT 0)
Hi Jake, when I was on Remicade the nurses had big problems sticking me. They would have someone from oncology come down & they had a lot of trouble. The head nurse contacted my dr & told him, her veins roll, they collapse when we try to run plain saline & hot packs did not help. They had a cut off of 3 attempts to stick me. I had a 5 stick limit, lol. I have always been difficult to stick & when I was dehydrated, well it was bad. They can stick your neck & even your feet! Had the port put in early one morning & a Remicade infusion 2 hours later, a piece of cake. Since you are on Remicade life will be much easier with a port. My infusions were every 4 weeks. I had several admissions to the hospital after my port was put in & let me tell you each time I was so glad to have that port, it saved me & the nurses a lot of grief.

It is a small incision & I had no issues healing at all. I know nothing about the cream you spoke of. My advice, don't put anything on it unless your dr tells you to do so. As far as accessing the port, I did not find it to be painful. I had to give myself Vancomycin because the was a recall on a specific lot number of heparin that was bad. Well, I had a case of it, as a preventative I did home treatment for 10 days. They sent a nurse out to access the port & the rest was on me. Follow the instructions for care to the letter if you ever have to do home care involving the port. I did some times get a metallic taste in my mouth but it was temporary. Personally, I would much rather have a port than a PICC line for long term use.
Posted 3/29/2018 6:37 PM (GMT 0)
Hey Jake,

I take Remicade. (Have since June 2015) I was diagnosed with Crohns December 2014. By June 2015 I was a mess. Multiple hospital visits, sepsis, fistula, going to the ER constantly. I ended up in a little hospital in a small town and the GI finally got me to a major teaching hospital. The first thing my new CRS and GI did was talk me into a port. I have a Bard single power port. The installation went smoothly. I don't even remember it. Small little incision in the right clavical area. No pain before, during or after. It sits right under the skin so you can see it and feel it-but it is not really noticeable. I do wear a Bard Power Port notification bracelet at all times.

BEST DECISION EVER!! I just wish I had spoken to them about the double power port... I think that would have made it easier when I was in the hospital a few times. It has saved me so many times. I too listen to the other Remicade infusion patients and it appears the longer you are on Remicade the harder it is to access your veins. I am so glad I made the right decision for me...

The negatives:: The catheter that goes up into my neck sometimes pinches if I lay on it just right but that seldom happens. The port did move once and drop between the chest muscles but they can still access it. We think when I lose the extra weight it will pop back up. That's it....

Good luck. Hope you feel better soon. Please let us know how it goes.
Posted 3/31/2018 1:03 AM (GMT 0)
Thank you both for the insight!! After being at the ER this week twice for my Crohn's (what I am actually now almost thinking may be a stomach ulcer due to the cipro/flagyl that I just ended my three weeks on) this week... and seeing my many bruised veins, I think this is going to be a godsend!

The office that installs the ports, a specialized radiology department, said I get put under twilight sleep while getting it done... so that makes me feel great about this entire thing. I am glad I won't remember what happened, as the entire thing of putting something under my skin gives me the heebie jeebies!
Posted 3/31/2018 8:02 PM (GMT 0)
Hello smile

I had a port-a-cath installed last November and I’m happy with it. Had it done under local only and I have to say that was not pleasant. But worth it!

I did a fair bit of research and discussed it with my surgeons/team and PICC line is better for frequent, short treatments. Ports are better if access is needed for years. Mine is used exclusively for administering and no aspiration. It could be used for both but my veins can be used for bloods, just not IV treatments, i.e. Remicade and hospitalizations, etc.

Imho ports are one of the best things for patient comfort.
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