How Long Can You Stay On TPN?

[itsmebabs]

I'm a young adult with Crohns for 25 years and have run out of options. Haven't eaten for her 3 months and have been on Peptamen 1.5 but now that seems to bother me and getting bad pain again so doctor suggesting TPN. I just had my second dose of Entyvio which is my last hope but want to know how long I can stay on TPN since I'm losing weight, pain and want to eat real food and live! Can I be on TPN indefinite if Entyvio doesn't work? Oh and I also had an ileocolic resection 2/2 years ago which obviously didn't do it for me since here I am again inflamed and in pain!
Thanks so much for all your support!
Wishing everyone the best New Years possible!:
Babs

 

[Sumayya]

Hey I've had CD for about 2 years now on September I had a recession, after the op I didn't get better I got worse so the only option was TPN for at least 6 months as my bowel wasn't taking anything. I'm 2 months into the TPN and it is great it has changed my life and since my diagnosis I've never felt this good. I am not having anything orally but since the TPN I've put on a total of 10 kg in 2 months, which is an achievement for me as I was really underweight. Good luck and hope you get well soon

 

[Spooky1]

Hi, Babs,
You haven't stated what other medications you have, if any. I know a lot of people do some years on TPN and like Sumayya above they feel great. It might just be that healing time you need for the intestine. It does carry problems of infection in the port and takes looking after so there is that to consider.

Please let us know how you are getting on.

 

[itsmebabs]

Hi Spooky1
Thanks so much for responding. I've had 2 doses of Entyvio which is my last hope with this disease and funny you asked what meds because now I am having difficulty getting my new health insurance straightened out even though I paid it the beginning of this month but because I upgraded and it's a new year they didn't process it yet but yet I have insurance whereby they may have applied to my old plan because the second woman I talked to said it looks like you have two plans....doh!!!!I did get a health insurance card with the new co pay so very confusing. It's been 4 days and the are back logged so apparently I'm not the only one I guess. I'm supposed to get another infusion this week and the Pharmacy that provides Entyvio hasn't been too swift in getting in touch with my insurance even though a nice lady called from my insurance company they wouldn't accept her confirming it was ok to send the Entyvio to doctors office. I'm supposed to get it this week and it has to be shipped. Apparently the first three are the most important to get right on time infusions and now it's not looking so promising. Tomorrow is Martin Luther Kings Day so I think the insurance company may be closed and the pharmacy is opened which I will be calling again. I've been drinking Peptamen 1.5 for 4 months now and lost 20 lbs if not more.Can't tolerate food. I can't believe what's happening with healthcare!!! I started this last Monday and my infusion is this Wednesday and it's not looking promising. I don't know what to do anymore but call and get frustrated. The left hand doesn't know what the right hand is doing. Unbelievable!!!! I have to work and can't and don't know how I'm going to deal.
And thanks Sumayya hope you are still doing well.

 

[Spooky1]

Sometimes the NHS gets things wrong. If I have to go into hospital emergency they don't have my 028Extra, only the dairy ones, so I have to eat! Bizarre. At least we have dieticians to get on the phone to and then they phone around and rally all companies to get things done. They also get the specialists to get a move on too. Dieticians are often the best to deal with. Perhaps the insurance and pharma are playing swings and roundabouts with your healthcare. Sounds that way.

Losing 20lb in 4 months is quite drastic. I also have issues with food unless its just the fish and potato. That's about it for me, and sometimes the fish is too oily itself even though its poached, steamed or canned.

I hope things sort out for you.

Keep me informed and keep your insurers/pharmacy informed, don't let them let you down. It's your health suffering not theirs.

 

[itsmebabs]

Thanks so much Spooky1. I'm in the United States and I guess things are run differently then the UK. Healthcare is changing here an it doesn't seem for the better. Everyone seems overwhelmed and things are changing so no one seems to know what they are doing anymore. Very sad. There's nothing more I can do then to keep calling Pharmacy and health insurance company but tomorrow is a holiday here so I lost a day Doesn't look too promising. Sigh... soon tired

 

[Pandapop]

Hi - I just joined so that I could reply to Babs.
TPN can be a lifelong treatment. I've been on it 20+ years and its helped me remain almost medication free during that period. It takes some time to adjust to the TPN routine, but once established, life is good and there is nothing you can't achieve going forward.

 

[Spooky1]

Welcome Panda,
I'd love to give TPN a go. Am sick of liquid feed for 20 hours per day. Liquid in, liquid out for me, so still on and off loo. been 15 years of liquid feed. How many hours do you have this for per day, Panda?

 

[Pandapop]

I used to ba able to feed ton only just 8 hours s night but I now do 10 hours a night. The rest of the day is free. There are some bg negatives with tpn ( line infections the main downside) but the upside is very good health and ability to stop eating for a week or so if the crohns flares up.
So quality of life is lots better the majority of the time.
However it's obvious a bit more difficult to travel when you rely of daily refrigerated sterile liquid feed - but that isn't an impossible hurdle to overcome just takes a fair bit of planning.

 

[Pandapop]

If you're lucky then you can combine ad hoc on (say 3 or 4 nights a week) with other diets/enteral. But for me it's always been 7 days s week without the ability to miss s day

 

[Pandapop]

Ps tpn is very expensive but fortunately the uk system gives it for free to those who have no alternative

 

[Cathyware]

Hi - I just joined so that I could reply to Babs.
TPN can be a lifelong treatment. I've been on it 20+ years and its helped me remain almost medication free during that period. It takes some time to adjust to the TPN routine, but once established, life is good and there is nothing you can't achieve going forward.

Hi there are you still on tpn ? I’m new to this I’m scared