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Permanent TPN?

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Crohn's Disease
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Posted 3/10/2010 4:23 PM (GMT 0)
I have had an ileostomy for 9 years now and have had quite a number of operations since then to remove inflammed sections of small bowel. During this time I had a temporary jejunostomy for 6months, whilst I had this I had to be on TPN for something like 15hours a day via a hickman line as there was not enough active bowel to absorb nutrients. The jej was eventually reversed and I still have my ileostomy..

The situation at the moment is that now as a result of so many operations to take bits of small intestine out I have been left with a very short bowel and I wondered if anyone knew how little bowel a person would have to have that they would require daily TPN infusions.
I have been having more problems lately that I know the doctors will suggest more surgery for.. but how many more operations can I have before its too many?!shakehead

Posted 3/10/2010 4:41 PM (GMT 0)
I believe that once you have less than 80 cm of small bowel left, it is difficult to survive without TPN. You might consider using 1000 calories or so per day of enteral nutrition as a supplement to your normal diet to help keep inflammation down in the small intestine and lower the risk of needing further surgery.
Posted 3/10/2010 5:10 PM (GMT 0)
Heres the problem with that.

Pain (sorry to say, KILLS US) But Won't "kill you".

Unfort. Short Bowel Syndrome isn't good at all and yes TPN may be needed. When this happens.. We are LIFE TIME at risk for sepsis, Many doc visits, Liver problems.

I'd Really Go for last resort or emergency.

It's horrible to talk that way but i may need 45-60cm gone as well. We only got about 220cm of small bowel
Posted 3/10/2010 7:45 PM (GMT 0)
That all being said. I think RandyNoGuts is the go to guy on TPN he has been on it for something like 7 years now.
Posted 3/10/2010 8:54 PM (GMT 0)
I thought he just had his 10 year anniversary, but I could be mistaken.

My mother had Short Bowel and had to take medium chain fatty acid. It wasn't the most wonderful thing in the world and she couldn't put weight on, but Crohn's wasn't the cause of her death. She had to take a tablespoon or so a day and it could be mixed into other food, or even used in baking. I've never been able to get all of her records to find out exactly how much of her bowels were removed, but it was a lot. She had her first resection in the mid sixties when they really didn't understand, or care, about saving bowel for later. They just cut and cut away. I've had about 4' taken out myself and wonder how far I am away, but since I don't have trouble keeping weight on yet (turn ) I guess I don't have to worry too much.
Posted 3/10/2010 9:37 PM (GMT 0)
debilitated - I understand what you mean, those are my thoughts too. im sure the doctors wouldnt operate again unless its absolutely necessary as they know the risks of long term tpn better than anyone.. so hopefully I will be able to grin and bear it. or maybe the new course of methatrexate they have just put me on will help. although I remain skeptical as no drug in the last 15 years has ever had any positive effect on my CD! one would have hoped that at 21 I should not have to be worrying about spending 3/4 of my day attached to a drip, but as is life!
I should probably make more of an active effort to maintain a restricted diet and healthier lifestyle too, but unfortunately my youthful mindset causes me to think 'what the hell' .. if I have this impending permanent TPN on the horizon I may as well enjoy myself while I can now so I don't long too much after a wasted life in the future!!
Posted 3/10/2010 10:54 PM (GMT 0)
Surgery should always be a last resort. I only had surgery when my obstructions wouldn't stop. I will now do everything possible to avoid another surgery. I don't want short bowel syndrome because it doesn't even cure the crohns.

Why is your doc suggesting so much surgery? Are you at risk of bowel perforation or daily obstructions?

Surgery does not cure crohns and it is not a treatment for flaring disease unless there's bowel perforation or obstruction or a fistula or abscess or something like that.

Try a radical diet like SCD or the Maker's Diet before giving in to too much surgery.
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