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Crohn's Disease Forum » Support Forum » Is it worth asking for a PICC Line? URGENT HELP!


04-09-2013, 04:15 AM   #1
Crohnie101
 
Join Date: Apr 2013
Is it worth asking for a PICC Line? URGENT HELP!

So I have typically 4 flare-ups per year (very severe) and I am just 15. I am on azathioprine, infliximab and starting adalimumab soon. I am currently having a very severe flare-up and have not eaten much other than a custard or so in about a week. I haven't drank plain water as I just cannot stomach it without being in so much pain it is unbearable. I have only drunk coffee and tea as they are bearable however, they dehydrate you even more! I have my GI appointment tomorrow and I assume I will be admitted as my condition has gotten so bad, I am even having lots of blood in my stool. Its not tarry but is not bright either, is actually quite dark. I have had Crohn's for 5 years and in that time I have had endless Infliximab infusions, blood tests (sometimes daily, sometimes every other day or so) and I quite often have to go on IV fluids. I was wondering if it would be worth enquiring about a PICC line as I have on average 3-4 cannulas per month and many bloods and the meantime. Do you reckon its worth it? It would make my life a heck of a lot easier too.
04-09-2013, 04:31 AM   #2
afidz
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Hello, sorry to hear you are having so much trouble.
I am a little bit confused about your situation. Do you want a PICC line for your time in the hospital if you get admitted?
A PICC line is the next step up from an IV. Its placed by the radiology department in your upper arm and can be there for a few weeks. You can only have it while in the hospital though and they don't normally place one unless you are going to be in the hospital extended stay.
I think you are thinking of a port. A port is surgically placed under the skin and a catheter connects it to a vein. A port can stay in place for a few years.
If you are talking about a port, it might be a good idea, especially if you are constantly getting IV's. It wouldn't hurt to bring it up with your doctor. Are you still on Remicade now?
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
04-09-2013, 05:42 AM   #3
amrycrohns
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They can place PICC line for out patient stuff aswell
04-09-2013, 05:45 PM   #4
Crohnie101
 
Join Date: Apr 2013
Can they? Even better! Do you think its worth considering? Or even a mediport?
04-09-2013, 05:50 PM   #5
Crohnie101
 
Join Date: Apr 2013
@afidz, I'm considering mentioning either a PICC line or MediPort if I am admitted to the hospital (which I most probably will be). I posted another thread elsewhere explaining what's going on with me at the moment;
http://www.crohnsforum.com/newreply....treply&t=49876

From the sound of all my symptoms, I think I will more than likely be admitted today therefore I am interested in getting a PICC line or Mediport. I love needles and all as I have them all the time however, the last few times I've had them, they've been awfully painful when being flushed, bruising horrifically, blowing up to the size of a tennis ball and stuff so perhaps one of the above may be a better option if I am admitted.
04-09-2013, 05:51 PM   #6
amrycrohns
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I wouldn't consider it for out patient stuff, at the height of getting stuck I was at maybe 4-5 times a week and I don't mind needles. I try to stay active aswell and think that it would hinder things I enjoy doing also.
04-09-2013, 06:05 PM   #7
Crohnie101
 
Join Date: Apr 2013
Sorry, is that the Mediport or PICC line (:
04-09-2013, 06:18 PM   #8
Crohnie101
 
Join Date: Apr 2013
Hello, sorry to hear you are having so much trouble.
I am a little bit confused about your situation. Do you want a PICC line for your time in the hospital if you get admitted?
A PICC line is the next step up from an IV. Its placed by the radiology department in your upper arm and can be there for a few weeks. You can only have it while in the hospital though and they don't normally place one unless you are going to be in the hospital extended stay.
I think you are thinking of a port. A port is surgically placed under the skin and a catheter connects it to a vein. A port can stay in place for a few years.
If you are talking about a port, it might be a good idea, especially if you are constantly getting IV's. It wouldn't hurt to bring it up with your doctor. Are you still on Remicade now?
Yes, I'm still on Remicade and have been for about 4 years. Generally when I am admitted to the hospital, I stay there for about 2 weeks at the minimum. I think I am due for my infusion in 2 weeks, and generally if I'm admitted and due my remicade, they just keep me in and do it on-ward. I have my remicade every 8 weeks and in the meantime, I have hundreds of bloods and when admitted heaps of IV's too. I'm not sure that >2 weeks is an extended stay but during those 2 weeks I have IV fluids non-stop and often other forms of meds going through my IV.
04-09-2013, 09:22 PM   #9
mschulz
 
Join Date: Apr 2013
I recently got a PICC line placed while in the hospital for TPN. I'm now home and able to manage my PICC line on my own, however there are restrictions. You're not supposed to lift anything over 10 lbs with that arm - really limits activity. I also have to have the dressing changed/bloodwork drawn every week (which can be annoying trying to coordinate that with my school schedule). It's nice that I don't have to get poked every week, but there is also a high risk of infection with the PICC line (you just have to be careful).
04-09-2013, 10:52 PM   #10
afidz
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I would consider a port in all honesty, you can keep it for a lot longer. Mschulz, do you know how long a PICC line can stay in? I was under the impression it was a few weeks but I am probably wrong. Crohnie101 did they admit you to the hospital?
04-09-2013, 10:56 PM   #11
mschulz
 
Join Date: Apr 2013
I've heard varied lengths of time - from a few weeks to a few months. Mine will be in for about 6 months.
04-09-2013, 11:08 PM   #12
afidz
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that seems like a long time for one PICC line, are they going to move it to the other arm?
04-09-2013, 11:16 PM   #13
mschulz
 
Join Date: Apr 2013
I hope not! From what the doctors/nurses tell me, it should be able to last that long. I'm still learning though, I've only had it for 2 months now.
04-10-2013, 04:12 AM   #14
Crohnie101
 
Join Date: Apr 2013
afidz, I wasn't admitted to the hospital but very soon I'll be having an MRI or my stomach (MRE) and a colonoscopy/endoscopy to show my disease in action. However, I am being admitted next Wednesday by my pulmonary doc if my lung function does not improve (it never does!). So hopefully they'll do all my scopes and stuff then whilst I'm admitted. Hopefully they'll get me onto some fluids too and in the meantime I'll query about the port. I will also be put on Budesonide after my scopes and MRE
05-12-2013, 05:18 AM   #15
justanoldchrony
 
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Hey Crohnie 101,
Saw your post and thought I would throw in my 2 cents worth.
I have had horrid flare up of my Crohn's and inflammatory arthritis thus swelling my entire colon and bouncing back and forth between bouts of diarrhea one day with 10-15 bathroom runs to being completely blocked up and not going at all for the next 5 days because my whole bowel is too inflamed. Then I end up in the hospital and they cannot start an IV because I have THE WORST VEINS EVER!!! After many nurses begged me to get a port I looked into it and after getting stuck for over 2 hours and ending up with an IV in my armpit I gave in and got the porta cath.
It was a minor procedure. I cannot lift anything heavy overhead for 2 weeks but it was very little pain after the first 3 days. And after the first 4 days they can use it to draw blood and give IV fluids.
Considering your situation you might ask about a porta cath.
My doctor did mine because of my poor venous access and need for monthly transfusions of meds and monitoring of blood tests.
Hang in there.
06-27-2013, 10:20 PM   #16
mschulz
 
Join Date: Apr 2013
Hi all,

Just thought I'd give an update that I still have the same PICC line that was placed in February. It's working fine and I haven't had any problems with infections. I've had a few issues with clots in the line, but they were easily fixed with activase. I'm still on schedule to have the PICC line in until mid August.
07-21-2013, 10:57 PM   #17
Tiger09
 
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I was terrified for the picc. I cried so hard that the nurse cried and held my hand.
07-30-2013, 07:33 PM   #18
AuntieEm
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I have horrible veins. They automatically order a PICC line upon admission for hospital stays anymore. It saves a lot of pain and anguish for me and time on the staff trying to find someone to get yet another iv in or blood drawn. I've never left the hospital with one though.

Glad yours is holding Mschulz.

Tiger, I hope they talked you through it too. Knowing what is going on helps me. I've had the same one doing it each time and we have a good routine. If you ever have to go in for another it won't be as terrifying. Just being in the hospital is a vulnerable time.
08-17-2013, 11:15 PM   #19
mschulz
 
Join Date: Apr 2013
Bad news and good news...

Bad news is that my picc that was placed in February had to be taken out last week due to an infection. Good news is that my infection has cleared and they were able to place a new one in so I can continue my TPN. This one probably won't be in for too long though - just enough to get me through surgery/ hospital time (which is scheduled for next week).
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