i need some help.. miserable

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Regular Member

Date Joined Jan 2010
Total Posts : 448
   Posted 5/2/2010 12:57 AM (GMT -6)   
After a hospital stay of 7.5 days im home now on TPN..
You dont want to know how weak i am, my resting heart rate is getting better and averging 89-110.

it's really hard to get much exercise because I am trying to to recover and put weight on. So yes I am lieng down a lot but also getting the best exercise that i can. Thank god im young. but very thin.

The TPN is only 1800 calories and they want me to try to snack throghout the day.
Thing is, EVEN WHEN I DONT eat, im using the bathroom so much .. Why?

And at random moments Im gassy with pain and belching.. And not eating. Very painful. From TPN?

Recommendations? I Thought this was Bowel Rest.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 5/2/2010 3:50 AM (GMT -6)   
You slough cells off your bowel lining, and they need to be expelled, and that's why you're still going to the toilet.

My guess is that it will take a while for your gut to heal. Try not to be too impatient.

It's a long time since I was on TPN, but I still remember having pain, bleeding etc, even when living on it exclusively.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined Feb 2010
Total Posts : 403
   Posted 5/2/2010 11:20 AM (GMT -6)   
i have no words of wisdom.. just sending good thoughts your way that you feel better soon =)
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3106
   Posted 5/2/2010 2:54 PM (GMT -6)   
Eating will probably help with the gas...your body is still working, just nothing is there to process, so you are getting gas:( Try to get little things down every half hour or so. Can you eat peanut butter crackers? Pretzels? Applesauce? Even some rice or mashed potatoes? I always ate Rice Crispy Treats:)

Exercise should be the last thing on your mind right now! There will be time for that when you have more strength.

If it was true bowel rest, they would up your TPN, and not have you eat at all...at least that's what I had to do...I hope you feel better soon!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 5/2/2010 6:31 PM (GMT -6)   
All I can do is this:



Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 5/3/2010 2:42 AM (GMT -6)   
Glad to hear from you again D. Relax and let the process work you can't do it all today, leave something to do for tomorrows.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 5/3/2010 7:50 AM (GMT -6)   
When I was on TPN it was a while ago. I was on for 2 weeks for total bowel rest, no food, to see if my inflammation would calm down enough with high doses of steroids so I could avoid surgery. Unfortunately I was still in constant pain and that was their sign that I needed another resection. sad

Are you still doing the MTX? Have they added anything into the mix? How long are they going to give you on TPN? Can they up the calorie count?

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 5/3/2010 8:25 AM (GMT -6)   
Well in all honesty you pretty much been borderline on needing TPN for quite some time.
But I do hope it gets you feeling better soon.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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