Help I just started Tpn

• By daviandsteve
• Posted October 13, 2009 at 10:12 pm
• Report post

Hi Debbie,

Welcome to Oley! You've come to exactly the right place for TPN advice and support.

I know how overwhelming starting TPN can be. I've been on TPN since March of 1983, and there are others who have been on it even longer than I. Have you checked out the Oley web site? The URL is http://www.oley.org There is a tab marked "Meet Patients" with a drop down menu. You might be interested in looking there, as there are patient profiles, names and contact info for Regional Volunteers, etc. The Oley site has a wealth of information, including a list of videos that are available for borrowing. I would be very happy to talk to you. My phone number and e mail address are on the Regional Volunteer page, under Region lll. Also, each month Oley provide toll-free numbers to different volunteers, so that members can call and talk about coping, etc. This month Lynda Yeabower, who is on PN due to short bowel syndrome/Crohn's disease, can be reached at 888-610-3008. She also has been on PN for many years.

Hang in there! It does get easier - not exactly like brushing your teeth, but . . . you do develop a routine.

Wishing you all the best,
Davi (Davria)

• Reply

• By Kathryn1972
• Posted October 14, 2009 at 12:05 pm
• Report post

Hi Debbie

You have some to the right place. We are a great group of people who are very helpful. I started home TPN in July 2008 and I can remember just how terrified I was to come home from the hospital and have to do it all myself. Believe me it does get easier once you get settled and find a routine that works for you.

We are all here to help you and answer any questions you might have, so please don't hesitate to ask away.

Hang in there it will get easier.

Kath

• Reply

• By btdt12
• Posted October 14, 2009 at 4:03 pm
• Report post

I feel bad they say I should be on for a few months, I feel like I am a whiner you all have been on this for so long. I have chrons and had surgery august 20th I have 120 in left of intestine. I have holes in my stomach due to not healing from the predisone. Been in and out of hospital since. Then got a fistule on intestine so air comming out of hole. I am scared and feel so tired and feel like I am so hungry. I have nothing by mouth ( ice chips) ok and set up on Tpn 12 hrs from 6 to 6. Got out of hospital monday running out of FMLA so pushing my self to go back to work tomorrow I went back fast the first time also. I feel so stressed due to job and this over whelming problem. I am so afraid if I lose job ( which I will they cant wait they are self insurer 's as we all know Chrons not cheap. My family and Dr's angry with my decision to go back but Dr's will always let you go back when you say if you want paid you have to let me go. I beleive in God and want to do whats right my family say I am not trusting God to take care of me, but I feel like I have lost so much due to chrons I feel like I have to fight as long as I can. 8 yrs ago I had 5 surgeries and husband found new girl friend lost home and family. It took me a long time to get over that and I have built back up only to lose again. I know i have been blessed and my chrons has never been as bad as a lot of cases and I have had all these surgeries and by the grace of God have not had a colostomy 2x's they said I would. So I feel I have no right to whine but here I am. I am sorry I am venting but everyone sees me as strong and positive and I feel no one can understand how I feel, so I do not say any thing. I am so glad that I found this site so I wont feel so alone.

Thank you :)

• Reply

• By Novagrad
• Posted October 14, 2009 at 7:41 pm
• Report post

Debbie:

Starting TPN is extremely overwhelming. I'm a nurse practitioner (well, I was before I became disabled) and I was first on TPN back in 2007. Even I was totally overwhelmed by it! It does get much easier, though. You get used to the setup, you get used to your line, etc. Give it some time but don't hesitate to have the visiting nurses come back if you need them. TPN can be very dangerous if you are not comfortable with it. I almost died a couple of times from line infections from TPN. Be very careful! Best of luck!

Mimi

• Reply

• By Woeful
• Posted October 15, 2009 at 1:33 pm
• Report post

btdt12, you are definitely not alone here. And you've been through a lot, so give yourself some slack. You're also entitled to feel sorry for yourself. After all, your life has been radically altered, even if it's only going to be for a short while. I've been on TPN and a J tube for almost a year now (for me this will be permanent) and I still have not come to terms with it all.

• Reply

• By btdt12
• Posted October 15, 2009 at 3:58 pm
• Report post

The fistula has opened up and now stool is pouring out tonight they are puting a bag on to try to keep me clean and the wound some what. They feel that it will be 5 or 6 months now and will probley have to have another surgery. Right now I feel so tired. I am also dehydrated. so now I have to get iv fluids half way through the day. I have come to terms that I have to go on disability now. I tried fighting but I dont have the strength to fight chrons and my job. I think that we all have to remember TPN and J does not make use who we are. I am not chrons I guess we just have to find our new normal. I have to just trust God knows what he is doing. I hope you had a good day today :)

• Reply

• By turtle
• Posted October 16, 2009 at 7:03 am
• Report post

i also have crohn's disease. i've been on and off, on and off, on and off....TPN, hydration, IV nausea meds, IV antibiotics for over 5 years now. i'm currently on hydration and IV antibiotics. i'm 26 years old and am on ssi/disability. i have not been able to finish college and have literally spent most of the last 12 months in the hospital, something like nearly 300 days! i've been home 3 weeks now...and slowly getting more adjusted to being back home. i have stomach problems as a result of my crohn's disease and the meds i had to take for it. i also have been fighting MRSA in my R ankle and L knee joints since last jan. most recently the MRSA got into my L femor (near the knee) i've had 6 surgeries on my R ankle and L knee, 5 athroscopic and 1 open (knee) surgery, also 40 days of hyperbaric oxygenation thearapy, and most weeks of IV antibtiocs than i can count at the moment. i'll be on some form of antibiotics for at least another 6-7 months. i also have AVN (avascular necrosis) in the R ankle and L knee (hence those areas being targets for the MRSA) the AVN is caused by the high doses of solu-medrol (steriods) i was on. if i flare badly again i will have little choice but to have major intestinal surgery to have my entire colon removed. i'm very much hoping to avoid this. at the moment my crohn's disease is doing "ok" i definitly understand how scary and overwhelming all this can be. and if you feel you'll be unable to work/continue working, than apply for ssi/disabilty TODAY it can take several months for all the steps of the application process to go through. if you do get approved you can get back pay money back to the date you applied. if you have trouble with the application call social security and they can head u in the direction of places (ie legal aid) that can help you apply for little to no cost. i applied for social security before the age of 23...i never ever would have imagined that i'd end up on disability, being unable to work or even go to school when i was under 23! depending on the state your in, once you're on ssdi than you could possibly take community college classes tution free (its called the board of gov fee waiver) u still have to pay school fees and books, but the per unit charge is covered. so that could be an option, its at least something to do. i'm going to try again in the fall.
with everything thats happened in the last year, and all the problems with my legs, i'm currently completely wheelchair bound and so my focus now is getting my legs as strong and possible so that when the docs say i can start to stand and then to walk that i'll be as ready as possible. though my left leg only straightens to 41 deg on a good day, which is way tooooo bent to walk....so i need to get down to 0 deg... :-\ which isn't nearly as easy as it sounds! but i'm working on it.
what type of central line do you have?
i currently have PICC line, but i've also have 2 port-a-caths. i'm hoping to only have this PICC for a maxium of 2 more months...anyways, if you have any questions, want to chat, vent, or whatever whether about crohn's, TPN, or anything else, please know that i'm here.
i hope you are getting more comfortable with you TPN!
*hugs*
turtle

• Reply

Add to the discussion