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Thinking about getting a port

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Thinking about getting a port  
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Posted 4/25/2013 7:52 PM (GMT -7)
Do any of you have one or have had one in the past? It seems that I am in the hospital way too much/getting bloodwork or infusions.  I started my first of 5 iron infusions (all done in the next 10 days) and met an older gent that has a port. The nurse showed me how to flush it and it's really not all the bad. The guy said it has saved his arm/hand veins a lot of agony. I've had 5 blood transfusions since November and the one I had last week was really painful. I was clenching the bed the whole time and my nurse was brushing it off.

Any input would be helpful. I looked through the forum and found a few posts on the Crohn's forum but wanted to see if any Ucer's have had a port.

Joanna 23
Current: 2-4 bms/day- very anemic/low hemoglobin
Supps: vit C/D, CLO, astaxanthin, b12 shots, colostrum, dig. enz, l-glut, serrapeptase, culturelle, prescript assist, sacro b., scdophilus, molasses, liver
Diet: SCD/paleo
Tried: canasa, rowasa, entocort, pred, 6mp, remicade, humira, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL, Vit E, 8 FT, clay, aloe, slip. elm, vanco for c diff
Posted 4/25/2013 7:55 PM (GMT -7)
are you scheduled for another infusion ? i would say yes, if you have to go in again, have them hook you up - it can always be yanked out if it's an issue, right ?
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin,vit D, ALA, DHEA, a smorgassbord of probiotics, & Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, or Sugar - No Meds - Just good, healthy food -
Lots of H2O, exercise & sleep as much as possible & enjoy this great life that God has blessed me with -
Posted 4/25/2013 8:18 PM (GMT -7)
Oh willys again! I'd almost rather have a bag...

Ok, not really, but that somehow freaks me out more than venipuncture.

I hate that you even have to consider it. :(

I also hate that your last transfusion was that bad. Did the nurse talk about the port helping a lot with pain? I know they seem to get right on the edge of my vein sometimes, and it just burns like crazy, but as long as that vein stays open they're going to push right on.
Ulcerative colitis / 35 / female

budesonide - 9 mg
hydrocortisone enema
Imuran – 100 mg
Remicade - 7.5 mg / kg
Ca, Zn, Vit B Complex, Vit C, Vit D, Colostrum, Fish Oil, L-glutamine, PD Ultra

FODMAP Elimination Phase 4/7/13

Prior: Colestyramine, Xifaxan, Lialda, Apriso, Symax Duotab, Imuran, Remicade, Prednisone, budesonide enema, Align, acidophilus, SCD yogurt
Posted 4/25/2013 8:31 PM (GMT -7)
soystud, yeah, my next infusions are monday, wednesday, friday, and the monday after that. i know that you get put under for the port procedure so i doubt i'd have time to do it in the next 10 days. i'd have to make an appointment with a surgeon. but i just mean after that, too. i'd prefer to keep it in for a while since it does leave a noticeable scar on your chest after you get it taken out.

tornado, my nurse today said people LOVE their ports. she is very familiar with them since i get my infusions in the cancer center. the blood transfusion i had last week was definitely from a bad IV site. once the IV team changed the site for my 2nd transfusion, it was fine.

i just feel bad for my arms/hands. they are always bruised and sore and the scar tissue is building up. i feel like i don't really have an option anymore. last year alone, i had remicade, 14 iron infusions, 2 blood transfusions, and the typical IVs/bloodwork from colonoscopies and hospital stays. this year, i've lost track of it and just don't wanna deal with the pain. anything that makes my life easier is exactly what i want.
Joanna 23
Current: 2-4 bms/day- very anemic/low hemoglobin
Supps: vit C/D, CLO, astaxanthin, b12 shots, colostrum, dig. enz, l-glut, serrapeptase, culturelle, prescript assist, sacro b., scdophilus, molasses, liver
Diet: SCD/paleo
Tried: canasa, rowasa, entocort, pred, 6mp, remicade, humira, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL, Vit E, 8 FT, clay, aloe, slip. elm, vanco for c diff
Posted 4/25/2013 8:48 PM (GMT -7)
I had scar tissue really badly in my arms when I was seeing the hematologist regularly. It was difficult to get blood drawn after a while. I could see needing a port since you are getting so many infusions and transfusions but at the same time, I think it would be great if you could find a treatment that gets you back in good health so you don't need to get all of these treatments. I know that's often easier said than done but I am hoping you are 100% soon.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)
Posted 4/25/2013 9:01 PM (GMT -7)
thanks NSSG. yeah, i agree not needing it would be awesome!! i saw a hematologist last week and he has me on venofer. the infusions are close together but they are supposed to last longer than the weekly ones. not sure how, but i trust him. i think i have something wrong with my small intestine since that's where iron is absorbed. i have an upper gi endoscopy in may and my doc said he'd check out my duodenum for any inflammation.
Joanna 23
Current: 2-4 bms/day- very anemic/low hemoglobin
Supps: vit C/D, CLO, astaxanthin, b12 shots, colostrum, dig. enz, l-glut, serrapeptase, culturelle, prescript assist, sacro b., scdophilus, molasses, liver
Diet: SCD/paleo
Tried: canasa, rowasa, entocort, pred, 6mp, remicade, humira, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL, Vit E, 8 FT, clay, aloe, slip. elm, vanco for c diff
Posted 4/25/2013 9:27 PM (GMT -7)
My Gma had a port when she was getting chemo. She was older so it was hard to find veins on her. It was a lot easier for her. But if you are going to get frequent infusions or bloodwork, it can wreck havoc on your veins. It may only be a temporary thing but it might help.
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Colazal, Remicade (6mp discontinued due to neuropathy)*Unable to tolerate ALL mesalamines*, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular
Posted 4/26/2013 12:29 AM (GMT -7)
I was actually thinking about one too. My veins are scarred and it's hard to poke them. It was never brought up to me but if it gets all too bad I might consider it.
Diagnosed with UC in '02
Past treatments: Prednisone, Mesalazine, Azathioprine (1.5 year semi-remission), MTX, Sulfasalazine, Remicade (2 year remission), Humira, Entocort, LDN
Current Treatments: Imuran 150 mg, Uceris 9 mg, Colazal 4.5 g, Apriso 1,5 g, Cortenema as needed
Spinach & sunflower seeds, diet modification
Last coloscopy on 2/28/2013 showed pancolitis
Posted 4/26/2013 6:47 AM (GMT -7)
A port was something that was discussed if I had to do IV ABX for my lyme or mycoplasma dx. My veins are so small I woulda went for it, but my doc prefers a PICC line.. Somehow those scare me less but from my understanding require more maintenance. If you think this is a long term thing Id go for the port.

So sorry you have to deal with these decisions!
Current: No Dairy, Sugar, Wheat.. Olive leaf (20% Oleuoropein), NA-Cysteine, Triphalia, methylation pathway support, sodium butyrate, anantamul, Blis K12, VSL#3, PB8, Proteolytic enzymes, herbal antiviral/microbal protocol
My story www.healingwell.com/community/default.aspx?f=38&m=2644147
Posted 4/26/2013 7:26 AM (GMT -7)
I bananagirl, I haven't talk to you in a while, so I thought I would just say HI and hope you feel better and hope the iron infusions help a ton! Hugs!
Posted 4/26/2013 7:39 AM (GMT -7)
After a week in the hospital in February my right arm was a mess. Left arm had the clotted artery so everything went into right arm including 4 iron infusions. It began to be a mess due to heparin blood thinner, brusing all over and I get questioned about being very vascular, if it is 'normal' and it is for me but the nurses think they can easily pin me but they are go right thru since there is no fat or they run into a valve, apparently I have more valves in veins from weightlifting and its weird to see them jabbing it over and over and it wont full go in due to valve so they start over. Usually once on a roll they have to get someone else because they get in a bad mood.
I can put up with that for a week or two but if it is going to be 'ongoing' then I would consider a port to be more sensible.
Funny thing is after all those pokes you know blood draws every 6 hours and bags going in from the hat rack, well just one poke for angiogram and she wrapped it up real tight with bandage gauze - god only knows why but did not remove it and that night at home I noticed it and it had clotted the full length of my arm. Thankfully once off prednisone it 'vanished'.
/pbs.twimg.com/media/BIju4fNCQAIKgwO.jpg
LOL
Posted 4/28/2013 2:58 PM (GMT -7)
I don't have one and unfortunately don't know much about then. But I worry about getting stick so often as well. I don't have nearly as many planned sticks as you...so I think it is definitely worth considering!
http://activeguts.wordpress.com/

Drug refractory UC
Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
IBD related arthritis and peristomal pyoderm gangrenosome

Humira, finally off of steroids! Aiming to have Step 2 in August 2013.

Tried lots of drugs and diet, didn't work for me.
Posted 4/28/2013 3:30 PM (GMT -7)
My mom had a port put in when she was diagnosed with breast cancer for the chemo treatments. Having it put in is not a huge deal and once it's in, you really don't even know its there.

She beat the cancer (yay!) and decided to keep the port in because she gets Remicade infusions to treat her RA. It's so much easier for her than being stuck every time she needs blood work done or to,get the Remi.

Sorry you are in the position to be considering one.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)
Posted 4/28/2013 4:16 PM (GMT -7)
byebye, how many years as she had it? the guy i met at the infusion center had his for 18 months.
Joanna 23
Current: 2-4 bms/day- very anemic/low hemoglobin
Supps: vit C/D, CLO, astaxanthin, b12 shots, colostrum, dig. enz, l-glut, serrapeptase, culturelle, prescript assist, sacro b., scdophilus, molasses, liver
Diet: SCD/paleo
Tried: canasa, rowasa, entocort, pred, 6mp, remicade, humira, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL, Vit E, 8 FT, clay, aloe, slip. elm, vanco for c diff
Posted 4/28/2013 4:56 PM (GMT -7)
She's had hers in for 2 years now.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)
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