I want to hear your outpatient TPN stories....

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klsygal
Regular Member


Date Joined Jun 2006
Total Posts : 115
   Posted 7/22/2008 8:17 AM (GMT -7)   
eyes  Hello All:
I have a friend who is about to start TPN at home and I am asking all you experienced Crohnies for your advice, tips, and feedback.  He suffers with both CD and celiac and is currently taking Lialda and an Immunosuppressant.  His major symptom is nausea, hence the need for TPN. I am very worried about him and would greatly appreciate your advice.
 
There is tremendous strength in numbers.
Thank you in advance and God Bless You!
klsygal
 
Concerned friend of a Crohnie.  Trying to support him in his life and treatment.
 
"Our doubts are traitors, and make us lose the good we oft might win by fearing to attempt."
Shakespeare - Measure for Measure
 
Love is not love which alters when it alteration finds, nor bends with the remover to remove; oh no, it is an ever fixed mark, that looks on tempests and is never shaken...
Shakepeare - Sonnet CXVI


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 7/22/2008 12:46 PM (GMT -7)   
Hi-
I was on TPN at home for 8 months. I went off earlier this year. For me it was good and bad, like most things. I was receiving 1800 cals a day running the bag 12 hours at night. I had a home infusion nurse come in once a week and change the bandaging and take labs. I recieved the supplies by mail once a week and the bags and supplements need to stay in the fridge, so it takes up some room. I had 3 main issues with the pic line and tpn. First, it is a pain to take a shower, at least for me. I hated needing to wrap my arm in plastic and tape it shut. so I switched to taking baths and keeping my one arm above water. Secondly, I developed skin infections. All around the bandage my skin started blistering, sluffing, and becoming an infected mess. 3 times I ended up in the hospital because of the infections and they were worried that the infection was in my line. The 3rd time I even had a fever of 104 and ended up in the ER at 11pm at night. And everytime I recieved a 3 day inpatient "vacation" so that they could pump antibiotics in me. The last thing that bothered me was the itching. I don't know if it was because of my irritated skin, or if it's normal, but my line would itch so bad that I thought I might try and pull it out while sleeping. Overall, I guess I'm glad I did it, since the alternative was not good. It actually helped my appetite and was able to start eating some very soft foods a few months before we pulled the pic. I understand dealing with nausea. Nausea and vomitting was the main reason I was put on TPN also. I still deal with nausea nearly on a daily basis, but I can usually work through it now. I hope him the best and don't be afraid to look me up if you or he has questions. There are other people on here that have been on TPN too, so I'm sure they'll chime in. good luck!
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Asacol, Imuran, Remicade, Humira, Prednisone, Canasa, Fentanyl, Warfarin, TPN


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/22/2008 1:45 PM (GMT -7)   
Randynoguts has been on TPN for a longtime. You might try to contact him about TPN and his experiences.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 228
   Posted 7/22/2008 1:49 PM (GMT -7)   
I was on TNP for 6 weeks prior to my surgery.  Twelve hours per day.  I had become so weakened by the Crohns that they had to put me on TNP to make me healthy enough to survive the knife.  While it was extremely inconvenient, I didn't have nearly as bad a time as Lavender had.  I slept on the couch with the stand right next to me.  I only had one mishap.  One night I guess I moved the wrong way and I pulled the line out of my arm without out realizing it.  The contents of the bag soaked right into my rug.  The result, however, was extreme weakness..almost like someone had disconnected me from my wall socket.
 
My wife, God bless her, was there for me.  She took care of all the changes and daily maintenance.
 
I would say that you must have faith in your medical advisors and as tough as it is, you should have a positive result.
 
Is it TNP or TPN?  I thought it was "Total Nutritional Program".  No matter.
 
Good luck. 
 
Tom
 
 

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/22/2008 2:08 PM (GMT -7)   
I was on TPN for 3 1/2 months for weight gain about 3 years ago. It was a piece of cake and didn't slow me down at all! I even continued to volunteer 4-5 hours a day once a week at our local hospital.

I was on TPN 14 hours a day. I'd start it in the early evening when things settled down a bit and I was done running for the day. Usually about 6-7 PM. By 8-9 AM the next morning I was done w/it. I was given a pole to hang the bag on so that I could be mobile about the house in the evening and morning whilst on the TPN and a backpack and battery if I needed to be "on the go" whilst still on the TPN (went to my granddaughter's band concert and one 8 AM doctor's appointment w/it).

I had no problems w/itching or reaction to the tape. And bathing wasn't all that much of a chore. In fact, I often took a shower once they added a large clear "plastic" patch over the insert site on my upper arm. The hospital where I had the PICC set used ultrasound to find the best vein but also did a chest xray after insert to make sure it was positioned properly and THEY used a good "snap on" type of "lock" to hold the "line" plus a really nice large clear "plastic" patch that really secured everything!! Like REALLY secured it.

Home health care came in once a week - or as needed - for the blood draw to determine my TPN "recipe" for the next week, clean the site, change the dressing, flush the line and check on how I was doing, temp, BP, etc. My supplies were delivered once a week overnight. When I grumbled about their taping the line and showed them what the hospital had used they special ordered it for me. Before being set up w/TPN they did a home check, had I not had enough refrigeration space they can actually supply a small portable frige to hold your "meals".

I did run a low grade fever one time when the nurse came out and was promptly referred to the hospital for a 3 day stay whilst they pulled the line, started me on antibiotics and inserted a new PICC. They do NOT mess around! As it turned out there was some MINOR signs of a low grade bacterial infection JUST starting when they cultured the old PICC line tip. I didn't feel the LEAST bit sick or "off" so was very skeptical that it was all a big to-do about nothing. They were right and I was wrong.

I wouldn't hesitate to do TPN again at all. It was a breeze and I gained weight on it. It was a very positive experience for me.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 7/22/2008 8:20 PM (GMT -7)   
hey klysgal.... i have benn on TPN for going on 9 years.. it would be hard to go into too much detail here more than what has been said.. except if the dressing irritates his skin, ask for a differant brand/type. there are many. the only one that does not get me is opsite 3000. if he has any specfic questions, go to my website below and hit the email me link.. :0)
randynoguts 



     http://www.geocities.com/randynogutsweb/


klsygal
Regular Member


Date Joined Jun 2006
Total Posts : 115
   Posted 7/24/2008 7:07 AM (GMT -7)   

Thanks everyone for the great information.  It sounds like he may be able to run his business part-time whilst having the feedings.  I know this will make it much easier to cope with.

Feel free to add.

Thanks,

klsygal


 
Concerned friend of a Crohnie.  Trying to support him in his life and treatment.
 
"Our doubts are traitors, and make us lose the good we oft might win by fearing to attempt."
Shakespeare - Measure for Measure
 
Love is not love which alters when it alteration finds, nor bends with the remover to remove; oh no, it is an ever fixed mark, that looks on tempests and is never shaken...
Shakepeare - Sonnet CXVI

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