Need Avice - TPN, diet, and recent surgery

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Everleigh Rae
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/3/2010 8:48 PM (GMT -7)   
Ok so my bro, 36, is still in the hospital with his first major Chron's flare up. Let me first say he doesnt want to hear any bad medical news etc. So I am trying to get answers to slowly talk to him about all this. He wants to ignor anything bad. And I want to prepare myself as well. He was diagnosed in 2005 after a bowel obstruction. In Janurary he had his 5th obstruction. Went to the ER and they did surgery 3 days later. His bowels were so inflammed they could not put them back in. Was open and did everyother day surgeries to fix tears in bowels and rinse out abdomen from bile leakage. A month after being admitted he went into episode of SOB and his BP dropped. They took him into surgery and removed all but 60 cm of his small intestines, large are completely intact. Has underlying condition of renal failure since age 15 and has coagulation problem as well. He went into septic shock and got pneumonia. Took him a week to come out of that. Where anastamosis is he still has a leak from a fistula (its been 4 weeks at least now). He is slowly leaking less and less bile. Sent him to rehab yesterday to learn how to walk, etc.  from being in hospital since end of Jan, and should be coming home soon. He is now on TPN for life but has been eating jello and broth for a while. I am asking about diet of a Crohn's person because his motto is "Moderation works". I dont think that is going to work this time. I just need info on TPN and what his diet should be just in case docs dont educate him so I can. And when he has really bad D from not eating right, I can be there to remind him that moderation doesnt work anymore. He is a super picky eater and a junk food and Dr. Pepper junkie. I am just in the dark about everything he needs. Oh BTW he is on disability and lives with me and the hubby since he cant make it on his own. And I am a Nursing student whom he does listen to, just havent hit this in school yet. Thanks in advance! :)

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/4/2010 6:17 AM (GMT -7)   
Randynoguts is one you want to "talk" to. cms leave me totally confused as compared to inches and feet. However, Randy doesn't have a whole lot of small intestine left either and he's been on TPM for some 10 years now. You might want to check out his Profile and maybe even PM him about your brother and to ask a few questions.
My computer says I need to upgrade my brain to be compatible with its new software.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/4/2010 8:56 AM (GMT -7)   
I sure hope they do get him on meds to stop these flareups. My personal opinion is Dr. Pepper and junk food are just going to end him back up in surgery. I personally follow a low residue diet and it works well for me. And as Crohnie Too stated, Randynoguts would be a great person to discuss TPN with. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Everleigh Rae
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/4/2010 1:58 PM (GMT -7)   
I sure hope that they get him on meds as well to prevent his flare ups. I looked in his med cabinet and didnt see any. He had talked to the hubby about not drinking dr. pepper etc and then when I went up there a week or so ago he had a coke and dr.pepper bottle in his room on his bedside table. So I really have no clue what he is really going to do. Thanks for all the help I will talk to him about all this. In addition he is now being treated like a diabetic and getting insulin injections as well. I know the risks associated with not keeping your blood sugar in check. Again thanks so much!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 4/5/2010 1:19 AM (GMT -7)   
hey ER,, too bad about your brother.. i was in the same exact boat a little over 10 years ago. they are probably giving him insulin now untill his body adjusts to the sugar in his tpn, i think i had to do it for about 6-7 months. i have just about 80cm of small bowel and less than 1/2 my colon. been septic 3 times. it does a number on ya...

i doubt this will ever come up in your nursing studies so dont sweat it. they may spend an hour on TPN . ( i know lots of nurses :-)).. like most big life changes, it will take some getting used too. and its not for sure a 'for life" thing. intestinal rehab is a big thing now and only getting better also transplants are getting more frequent and lasting longer. so in 10-15 years it could be a good possibilty. so like him im a picky eater as well, he will find what he tolerates and what he doesnt.at least with his whole colon he can absorb more fluids than me so he may be able to get his TPN total fluid down when his body adjusts. and it will in time.. if you have some specific questions email me from the members profile page..
randynoguts 



     http://www.geocities.com/randynogutsweb/


Everleigh Rae
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/5/2010 5:25 AM (GMT -7)   
Well he is ineligible for a bowel transplant because he needs a kidney transplant. Yeah I was going to talk to him about it for sure not being a life thing and that if he eats right etc he can POSSIBLY wean himself off. I have been reading up on it, but not quite sure what all I am reading is correct. The thing is that he used to eat what he wanted and just dealt with the pain. I dont think that he actually knew what possibly could have happened if he did that. And now it did. Thanks so much!!! I will message you if I have any questions. Y'all have been so helpful!
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