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Coming off TPN, What to expect?

My husband has been in the hospital for over a week with severe UC and he's been on TPN through a PICC line for about 4-5 days. The doctors have told us that he needs to have some solid stool (which could take up to 2 more weeks) before they will take him off the TPN.

I'm just curious what he *might* expect when he comes off the TPN and tries a clear liquid diet or adds solid food. I know that it's going to be different for everyone but I was just hoping for some personal experiences. I feel like I've read that when people come off the elemental diet (which I think is TPN but I could be wrong) people go right back into a flare-up.

Have you come off TPN? What happened to you?
I was on TPN and ice cube diet for 2 weeks then my symptoms went away. But then as soon as I came off and went back to a normal diet the pains came back. For me though the pains came back cause i had a narrowing in the ileum so no matter what it would hurt.
I'm so glad I got the surgery.
I felt like I felt better coming off the TPN as well because you stop the blood thinners as well that you have to take for it.


ele mental leprechaun
Elemental is not TPN. TPN as you are aware is Total Parenteral Nutrition.

Elemental is either drank or administered via a nasogastric tube that goes through the nose down into the stomach. It is designed to absorbed in the first metre of the small bowel. TPN is intravenous nutrition as you rightly say via a PICC line or another type of intravenous line like a central venous catheter.

Elemental is not generally used for UC patients because nutrition doesnt seem to have the same inpact - according to the last research I read - for UC patients as it does for Crohnies.

I really feel for you and your hubby. Its a tough thing to go through. Generally they gradually reduce the amount of TPN based on how much he can "regularly" eat and maintain eating over several days. His physical stomach will have shrunk in size due to not having the "bulk" of food so will take some time and discomfort initially for that to settle down again. Little and often would be my thought and something that is light, easy to digest and that he actually fancies. This will improve over time.

It should be done over a period of time that suits him and not because they think he should be at a certain point at a certain time. There is an element of goal setting but it should be flexible. Will also take some time for his appetite to pick up again and get used to having food in his mouth AND things like jaw ache from chewing which is often overlooked! ;-)

Its going to feel a bit foreign eating again but he will get there trust me. May have some abdominal cramping but its about him learning to listen to his body and also voice his concerns too. For example abdominal pains may be related to wind with new bulk travelling the gut or it could be an initial inflammatory response to food again which will settle OR could be something else like the UC getting a grip over a period of time. Unfortunately its a case of time will tell and although frustrating at times his own "instinct" will be a good guide.

Hope what I have said makes sense and helps in some small way. I am an ex ITU nurse so if I can help at all just PM me. I havent posted much of late as have had alot going on myself. But will help where I can.

Thinking of you both ((hugs))
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Zalanicht - it sounds like you feel better after your surgery. I think it will be awhile before my husband comes off the TPN. He has finally stopped bleeding but still has diarrhea. I also don't think that my husband is on blood thinners but I'm going to ask. Thanks for posting your experience.

Soupdragon69 - Thank you so much for the thoughts and clarifications. It is helpful and very much needed. He is still on TPN and now they've started him on clear liquids again which he seems to be tolerating. This is truly a lesson in patience.
Hi Kari,

Just stopping in to let you know I am thinking about you and your husband and sending positive vibes your way. There have been a lot of people on here who went on TPN. I am sure they will share their experiences as soon as they see your post.
Yep... a lesson in patience for sure.. this entire disease tests every aspect of your patience. You sound like a very loving and supportive partner. There are a lot of those on here who can share their experiences with you as well.

Take care and :hang:

Thanks Wendy. Doctor's haven't offered any support services or groups and I keep forgetting to ask them so this group has been so helpful for me as I try to gather info for my husband and find solace for myself. I look forward to when he can get out of the hospital and get on here himself!