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Crohn's Disease
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Posted 4/24/2009 2:47 PM (GMT 0)
Hi all, I was just wondering if anybody had experience with any of this. I just started TPN yesterday and it seems like my diarrhea has gotten worse since starting. I am just frustrated cuz it seems like everything you do for this disease has the side effect of diarrhea , which doesnt make any sense to me.
Posted 4/24/2009 3:34 PM (GMT 0)
I've never had a TPN, but I completely agree about side effects. I remember asking my mom when I was in the hospital at age 9, why they keep drawing blood from me when I've already lost so much (2 blood transfusions), but they had to run their necessary tests. When I took Cipro after my resection, I felt like I was in the worst flare of my life! It made me have diarrhea 10 times worse than normal. Once again, I asked why I was on something that causes diarrhea when the whole point is to get it under control!!! Diarrhea-causing Crohn's Disease medication: oxymoron, no?
Posted 4/25/2009 4:37 AM (GMT 0)

northernguy said...
Hi all, I was just wondering if anybody had experience with any of this. I just started TPN yesterday and it seems like my diarrhea has gotten worse since starting. I am just frustrated cuz it seems like everything you do for this disease has the side effect of diarrhea , which doesnt make any sense to me.

smilewinkgrin Good evening Northerguy i have had a TPN many times they never gave me the diarhea but you got to remember to that your body isn't use to all these vitiams and minerals,fats,lipiots so your body is finally getting everything it needs so maybe that is what is causing the (D's) your body just isn't use to it yet.So do you have a central line or a picc line in. Keep us posted. Your Buddy Jenn yeah
Posted 4/25/2009 9:28 AM (GMT 0)
hey NG. well i cant really give a standard answer since i could never tell if its the TPN or the almost total lack of intestine ...:-) but i do talk with many people on other sites that have not mentioned an increase in D. depends on too if your still eating? if not then a lack of fiber will get the stuff flowing till your cleaned out then it should slow down i bet. after 1 day i doubt its having an affect so soon. i mean its going into your blood stream, not the guts. its is being filtered by the liver and kidneys. if anything you should see an increase in urine output over anything else.. good luck, BTW how long are you to be one TPN? a short time i hope... i am at 9 years 4 months at the moment. ;0)
Posted 4/25/2009 3:18 PM (GMT 0)
confused  Hi Randy so you don't have much bowel left either,i'm not sure how much i have left but that is the problem i'm having they won't operate on me regarding all the bowel obstructions and the strictures cause i would have SBS and i wouldn't thrive anymore nor absorb anything so is that the reason for you if you don't mind me asking i'm only wondering cause i guess i want to know what to look forward to so do you eat anything by mouth or are you just on the TPN.Sorry for bothering you again Randy. Jenn smilewinkgrin
Posted 4/26/2009 8:56 AM (GMT 0)
hey jenn, yes thats the reason for my TPN. i have about 80cm of small bowel and just about the same of colon. maybe less. i do eat all i want by mouth. it just goes real fast! so i dont really buy food i just rent it! no body wants to take my returns though! :0)..
Posted 4/26/2009 3:07 PM (GMT 0)
They inserted a PICC line. This is my fourth day on the TPN. It has been running 24hrs a day so far. The goal is to get me down to 12hrs per day, which would be way better cuz I could just hook up at night. I guess the only good thing about it is that I can save some money on groceries. I can eat however much I want, but I have been trying to eat minimally to give my gut a bit of a rest. I will probably be on the TPN for a couple of months. Hopefully will be starting on the Tysabri this next week too, so maybe between that and the TPN I can finally get a remission after this miserable 4 years. I haven't had any surgeries yet, and my Crohns disease is limited to the last 2 feet of my colon and rectum. I have also been on the Prochymal stem cells, they worked great for me. I cant get them anymore now though until they are FDA approved, if that ever happens.
Posted 4/27/2009 1:56 AM (GMT 0)

randynoguts said...
hey jenn, yes thats the reason for my TPN. i have about 80cm of small bowel and just about the same of colon. maybe less. i do eat all i want by mouth. it just goes real fast! so i dont really buy food i just rent it! no body wants to take my returns though! :0)..

Hi Randy thanks for sheading some light on that for me seems i land on the same posts as you sorry for that.I now know why the doctors are telling me that they can't do anymore surgery on me cause there is not enough bowel left and i'm having a hard time gaining weight keeping any on really,everytime i land in the hospital the surgen hooks me up to TPN now i'm thinking this is what there getting me ready for again they told me i after my scope the end of the month they will know alot more as to what there going to do for me they have already told me there is nothing else they can do that hurt really bad and scared me half to death,i'm 35 years old been sick a long time to me it feels that way i don't mean to complain so much but i am really upset about this but the up side is i wouldn't have to do so much cooking is it alright to just live of the TPN you really don't have to eat do ya? I don't have a huge family but always have alot of people over for dinner people love my cooking and baking i'm the biggest chocolate lover and try to throw it in almost everthing i bake and i enjoy that i guess because it makes me feel useful since i have been not able to work in a long time its still nice to feel needed. The only worry i had about that was could i still eat something and you answered that,when i was on the GI feeding tube or the NG feeding tube i wasn't aloud any food by mouth just water and clear pop broth that is about it and was hooked up to my machine for 20 hours a day with 4 hours of to go out with friends and shower stuff like that i was only 16 then i didn't think i would ever make it trough those times but i did its just i thought i would never have to go back there again which i'm sure you feel the same way i was only on the feedings for 17 months but you 9 years you are so strong Randy you give me hope and courage thank you so much Randy for all you have done for me trust me when i tell you that you are the only man i really ever talked to about these things cause i was so embarrassed but you make it so easy for me to open up and talk and i'm not ashamed sorry for the long post again Randy my mom teels me that i have the gift to gab. Jenn smilewinkgrin

Posted 4/27/2009 7:37 AM (GMT 0)
anytime jenn. with your tube feeding when you were young, they needed to monitor your intake more so than it would be on tpn. i do have to not eat anything occaisionally for periods of time depending on whats going on. ido talk with some people who do not eat, but i dont know if i could do that totaly. i guess you get used to it.
Posted 4/27/2009 2:59 PM (GMT 0)
Hi Randy thanks again for the info just got back from seeing Dr.Cole my surgeon so this week some time i get my port put in he said there is to much scare tissue to put in another central line so I'm getting a port under the skin he said that is the best plan for me right now at this time,i asked him if there would be a TPN in my future and he said after my scope comes back they will take it from there and i could go on it sooner cause at the moment every thing is so out of whack in my blood work and i need to get some nutrients in my body he said it would give me more energy that what i have now which would be great.At this point I'm living of yogurt and frozen yogurt that is all that really agrees with me. Hope all is well with you Randy best of luck to you Jenn smilewinkgrin
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