just checking in with a short update on ME

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Veteran Member

Date Joined Jan 2003
Total Posts : 6143
   Posted 8/6/2017 11:46 PM (GMT -7)   

been doing ok since the stricture stretches stopped a few months ago. that is until early june when I had a infection in my chest and neck on the side where my hickman has been for about 4 years. NOT line related, just lucky me. in the icu for 6 days and then regular room for 3. because the line was under the infection they had to remove it after much hand wringing. still needing my TPN I had to forgoe it for 3 weeks, just getting vitamins and saline. I had to drive to seattle everyday for my infusion of antibiotics and vitamin solution. when I was healed well enough a new line was placed and I could resume my life. I have had hickman catheters for most of the last 18 years but this was a new type for me. instead of tunneling just under the skin, this one is much deeper. I can not feel it at all past the insertion point.

the IR drs and my GI, told me this is the last spot. they dug and probed for 3 hours to get this line in.just to much scar tissue on both sides and clot on the right. did I mention I was awake the whole time.. yep my resistance to fentanyl and versed is my curse now.

finally got it in at the 4th spot. seems on the CT of my veins, I have a narrowed kink in just the wrong place now. under the collar bone area. yea for me! smilewinkgrin

so that's my update. missed my trip to sell stuff at an Idaho military swap meet. good thing it hit right as loading would have started. hope everyone is doing good. I read some most days but don't post often anymore. randy

Veteran Member

Date Joined Jan 2005
Total Posts : 1839
   Posted 8/7/2017 4:04 AM (GMT -7)   
Randy, you are one tough guy. I hope this is the last health issue you have for awhile, you deserve a break.
DX with CD Aug. 1982
Gerd secondary to crohns
Monthly b-12 injections
40 mg Protonix / twice daily
folic acid

Elite Member

Date Joined Jan 2010
Total Posts : 10135
   Posted 8/7/2017 6:06 AM (GMT -7)   
Bloody hell, that sounds like a fun 3 weeks. Dumb question, but is this new hickman line for life now? I don't really know how long you can keep a central line in for.

Glad it's all over now anyway. I hope nothing like that happens again :-/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Veteran Member

Date Joined Feb 2015
Total Posts : 766
   Posted 8/7/2017 7:06 AM (GMT -7)   

So glad to hear from you!

Jeez.....you are one tough person. I am sorry you had to go thru that.

How many lines have you had placed? I have the Bard power port. (2 years now) I am hoping it lasts a long long time. (Although it has sorta slipped so it is alittle sideways) My aunt had her port for almost 20 years. She had cancer twice and just left it in. She didn't use it like I use mine or like you use yours...so I am guessing that will make a difference....

I can feel the tube that goes into the vein of my neck and the port itself is right under the skin. Sometimes it sorta bothers me..... If its not right under the skin how do you access it? On mine I feel for the three bumps and the port is right in the middle of the three bumps.... I haven't used it for tpn but they said if that time comes I can.... I think they should have a designated place that looks like the flower of a hummingbird feeder that comes out of your skin to make it easier. Lol....hey...you have to be creative every once in a ewhile.....

Seriously....glad to hear from you. Hang in there Randy. You give all of us hope and strength.

06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Veteran Member

Date Joined Sep 2009
Total Posts : 1018
   Posted 8/7/2017 8:37 AM (GMT -7)   
Oh man, Randy, wow!
I am glad that is over with and they were able to get a line in! Hang in there!
Isn't there anything else they can use besides fentanyl and versed?
How is it kinked? Is that going to be an issue?

Veteran Member

Date Joined Jan 2003
Total Posts : 6143
   Posted 8/8/2017 3:52 AM (GMT -7)   
ncot. my longest line lasted 7+ years. the rubber/silicone finally split. since then it has been , due to various factors, anywhere from 3 months to 4 years..

clo. I think maybe 10 all together, the first 3-4 were pics, since then all hickmans and now this one is a Bard powerline. its purple. all my others have been white. my lines have all been tunneled, meaning the end sticks out of your skin. what I can no longer fel is the line AFTER it enters the skin. like your port I could feel it just under the skin on my chest and then all the way up to the neck. this one seems to go in more of like a 45 degree angle and then disappears. it does go to the same area on the neck but its just to deep to feel.

yeah I suppose they could use propofol like for my colonoscopies, but this was in Interventional Radiology. normally it would work with the nurse just monitoring the meds, but with anything stronger then they gotta have anesthesia machines brought in and a dr or nurse anesthetist to run the machines. hopefully if there is a next time the dr that placed it told me he 'may' be able to do a wire transfer. other wise since I have no access left they would have to use the groin and the line would exit on my hip. I told him I came in with 1 thing hanging from my groin and that's how I'm leaving!

the kink is in the vein they used behind the collar bone, it has a narrowed part about 1/2 the size the rest is and takes a sharp turn in that kinked spot. I think they can go in through your back as well. up your shoulder and into the veins below your collar area and next to your spine. not sure though. hard cause of the lungs and stuff outback.

Veteran Member

Date Joined Jan 2006
Total Posts : 3143
   Posted 8/9/2017 5:30 AM (GMT -7)   
Hey Randy...just happened to see your post today while I was looking in on another person. You have been through so much...hoping this one lasts for you.

I also wanted to ask...military swap meet? I have a boxing medal that was my fathers (he was in WW II days after Pearl Harbor repairing vehicles for the shipyards) and he apparently won it in a military bout. Any recommendations where I would go to find out if it is worth anything. I have some other "inappropriate" items that I can not look up due to their bawdy nature - anti enemy toys.

Forum Moderator

Date Joined Feb 2003
Total Posts : 15525
   Posted 8/9/2017 6:17 PM (GMT -7)   
Mr. Noguts, I was happy to see a post from you, but man, you sure have some complicated stuff going on. I will say this, at least you are consistent. I hope that things stayed settled down for you for a long time.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Veteran Member

Date Joined Jan 2003
Total Posts : 6143
   Posted 8/10/2017 4:20 PM (GMT -7)   
habs. yes there at military collectable swap meets all over the country every month. unfortunately for me most are in the Midwest or east coast. where are you located? I will look in my list and tell you where the closet one to you is and when.

Susie. wouldn't be me if it wasn't complicated ;0P

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 8/14/2017 4:00 PM (GMT -7)   
So sorry to read about the latest difficulties you have been forced to endure. Really bites!

I read every day on my tablet but find it a slow laborious process to enter text on it. If you ever need anything, just holler. I'm not that far away.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Regular Member

Date Joined Jan 2010
Total Posts : 244
   Posted 8/22/2017 11:17 AM (GMT -7)   
Glad to see you're still kicking, Randy
bob b
18 year old son diagnosed at 9,-started remicade January 18/11-Jan 2015 4 yr on Remi. No sign of Crohns. bowel thickening reversed.as of feb.2012 started getting D close to infusion time.-july 2012- Remi upped to 300. Jan 2015 now an average 5'10" 135lbs.

Veteran Member

Date Joined Jan 2003
Total Posts : 6143
   Posted 8/22/2017 8:22 PM (GMT -7)   
thanks all for the well wishes!

bob, glad your son is doing well

Regular Member

Date Joined Sep 2007
Total Posts : 330
   Posted 8/25/2017 10:11 PM (GMT -7)   
Randy - so sorry you're having this trouble!
Official dx in TI 2007 with with obstruction and 10 day hospitalization.
Mild to moderate since then - frequent colitis
2014 - rectocele repair, also bladder sling and endometrial ablation
2016 - exploratory surgery for possible fistula - sigmoid colon
Current Meds: Asacol. B12 shots (Formerly Pentasa, 6mp, Cipro, Prednisone)
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