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jejenostomy and tpn

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Posted 8/30/2009 12:02 AM (GMT 0)
hi does anyone out there have a jejenostomy. i only have 30cm of small intestine left and am on tpn nutrition via a central line. be nice to find out how you cope. kirsteen .x
Posted 8/30/2009 12:46 AM (GMT 0)
I'm not sure but I think randynoguts on the Crohn's board may have that...I could be wrong. I know he has been on tpn for years.
Posted 8/30/2009 1:03 AM (GMT 0)
Hi...I'm 33 and have an ileostomy.  I have 6ft of intestines left and was on tpn for about 6 months.  I did well...learned what to eat to keep the lbs on, eat 3 protein bars a day and take lots of vitamins because my absorbtion is not good.  How long do you have to be on tpn???

I also take 8 Lomotil pills a day to keep food in my system longer.  I have been off for 8 months now and I'm doing great.  I get my blood checked every three months to make all my levels are normal and I have been able to keep up my weight and even managed to put on 7lbs!!!!

Hang in there, you'll be fine.  Patience is key!! Have lots of faith and know that there is light at the end of the tunnel.  It's a lot of getting used to but now I'm living as normal as can be expected with our condition.  I'm always determined to squash the words..."I can't do this" or I can't do that"....

Good luck to you

Posted 8/30/2009 11:28 AM (GMT 0)
RITAS - that is an awesome attitude...LOVE IT!!

Yes, randynoguts and also flchurchlady did have a temporary one w/tpn and I am sure someone else will show up!

keg welcome to the forum:)
Posted 8/30/2009 1:16 PM (GMT 0)
Kirsteen,
I had a temporary jejunostomy for 10 weeks after having surgery for a perforated small bowel. During that time, I was on a liter and a half of daily IV fluids at home. It would infuse every night while I was sleeping. I would drink lots of water, too, but it seemed to go right through me.

I also ate a lot of high calorie foods during that time and still lost 35 pounds. I think TPN is a good idea, since I did not get that. If you can set up a schedule where you're getting your nutrition overnight, that would free you up during the day to move around.

What caused you to get a jejunostomy?

Cecilia
Posted 8/30/2009 4:35 PM (GMT 0)
Thanx Ohio...=)
Posted 8/30/2009 10:12 PM (GMT 0)
thanks for all your words of encouragement. to answer your question cecelia I developed myopathy of the smooth muscle of the small bowel following a volvulous. the bowel was so damaged they could not save it. i am going down to hope hospital in manchester on 9th september for tests on the 30cm of small bowel i have left to see if it is good enough to join my large bowel which was unaffected. i will start distal feeding into my large bowel to kick it into action again. if successful in three months i may get my surgery. i am glad you are keeping better. i am on 4 litres of tpn nightly and one litre saline. i infuse this over 14 hours overnight. i am glad to hear you are doing better. thank you every one who answered me. kirsteen .xx
Posted 8/30/2009 11:03 PM (GMT 0)
Kirsteen,
I hope your tests on the 9th turn out well, so you can be re-attached. Have you had any leaks around the wafer? With the watery output, I had a lot of leaks in the beginning. If you are, I can let you know what helped stop them for me. Are you allowed to eat and drink, too? How long ago did you have surgery?
Take care,
Cecilia
Posted 8/31/2009 10:24 PM (GMT 0)
hi cecilia, thank you for mailing me. its nice to know that your not on your own. use a urostomy bag as output just like water. not too bad for leaks. the itch sometimes under the flange is awful cos you cant get to it. did you ever have that. more a nuisanse than a problem. i can drink 1 1/2 litres and eat a little but it just passes straight through. tpn provides calories and replaces fluids. have been admitted a few times with low sodium and potassiun but tends to happen self inflicted if i drink way too much. non alcoholic of course. had volvulus 10/07 and resection 8/08. whats happening with you ???????? how has things affected your self confidence??????? kirsteen ...xxxx
Posted 9/1/2009 8:47 PM (GMT 0)
Kirsteen,
I sometimes get itchy under the flange, but that's usually because there's a small leak and it's time to change. Once I change it, the itch goes away. Two skin products that have really helped me are Nystatin Powder, which is an anti-fungal prescribed by your doctor, and Calmoseptine Ointment, which is a skin protectant. Both go on the skin around the stoma before applying the flange. You can learn more about Calmoseptine at www.calmoseptineointment.com

The jejunostomy I had was temporary (on the left side of my belly), but I have a permanent ileostomy (on the right side) due to Crohn's Disease. Everything is great with me now. I'm healthy and happy, and my self confidence is very good. My husband and family and friends have helped a lot, since they are all so accepting and supportive. They saw me sick with Crohn's for 7 years and are glad that I'm healthy now, so my ileostomy has been a very positive thing in my life. :-)

It's good that you can eat and drink, as well as receive nutrition through IV. Eating is drinking is just plain enjoyable and makes life more fun. It's good, though, that your jejunostomy is reversible, because it is physically draining to not absorb nutrients and fluids the normal way by mouth.

We have a web site where we post photos. If you want to take a look, it's www.photobucket.com The user name is crohnsdisease and the password is 6mp3asa

Please feel free to upload some photos of yourself, too!

Take care,
Cecilia
Posted 9/1/2009 9:12 PM (GMT 0)
Cecilia...u put the calmoseptine on around the stoma?? How does the wafer stick?? and how often do u change it? I use the powder but my skin is still broken on one area and just bothers me like crazy!!!
Posted 9/1/2009 10:58 PM (GMT 0)
Rita,

Yes, I put a very small amount of Calmoseptine right around the stoma and get 7 days wear time.

Cecilia
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