When Is Enough Enough?

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lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/17/2008 9:02 AM (GMT -7)   
Hi Guys!

I have been flaring for three weeks and three days now. Up until last Friday I was pooing blood about four times a day and had the occasional "accident." I saw my doc on Friday and he gave me prednisone and I thought I would for sure go into remission (prednisone always puts me in remission). Instead, quite the contrary happened.

My flares were waking me up all night on Friday, I probably went about 30 times from Friday night to Sunday afternoon. But these aren't just small bloody flares. These are all out, painful, gassy, uncontrollable, wimpering type flares (with tons of blood in them).

I called my GI today and am awaiting a response. I haven't eaten anything really the past two days and that hasn't helped b/c I have had five episodes already this morning!

When is it time to get admitted into the hospital? I have been on TPN before and don't want to go through it again, but would it be used in a case like this?

Please Help confused sad
turboemma.blogspot.com/


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/17/2008 9:03 AM (GMT -7)   
I am also on remicade and it hasn't helped. My next infusion is scheduled two weeks from today. But, Remicade has not helped, and this will be my fifth infusion.

PLEASE HELP =(
turboemma.blogspot.com/


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 3/17/2008 9:43 AM (GMT -7)   
That kind of blood loss is going to put you into anemia soon if it doesn't cease. I would say that if you dont see some real improvement by tomorrow morning, it's time to ring the alarm bells. That would give the pred 72 hours to take effect.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/17/2008 11:26 AM (GMT -7)   
It can't hurt to go get checked out. Even your primary care can tell if you need to be hospitalized, especially if you get any worse I would suggest thinking about go to the er.
Crohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/17/2008 12:36 PM (GMT -7)   
Don't know about you, but if *I* were losing that much blood, I'd ALREADY be at the local ER. That is seriously scary.

Sincerely,
Matthew

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/17/2008 1:38 PM (GMT -7)   
You'd considered trying Peptamen. What about giving that or one of the other enteral nutrition formulas a try? They can sometimes work when steroids don’t. While waiting to hear from your doctor, you could always try Ensure, which can have similar effects. Even if your doctor wants you to start on TPN, it is often appropriate (and recommended) to change to enteral nutrition (product such as Peptamen or Ensure) within a few days to avoid the infection and clotting risk of TPN. But I agree this seems like it needs attention fast. Feel better!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 3/17/2008 5:35 PM (GMT -7)   
You make my problems seem so small. Please go to the ER. That seems like a lot of blood loss to me. Most definetly you don't need to be alone with that kind of loss. I hope you find a solution and real soon!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/17/2008 6:09 PM (GMT -7)   
I'm am hoping you went to the ER! Please let us know how you are doing! Lots of prayers are being sent your way!!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 3/17/2008 9:52 PM (GMT -7)   
like how much blood we talkin' 'bout here? streaks in the stool, on the paper, pink water in the bowl, red water, maroon water? think it may be a fissure that breaks open when you go causing a small bleed each time? is it dark like coffee? or black?
randynoguts 



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


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/18/2008 8:11 AM (GMT -7)   
Hey guys!

So my doc put me on 60mg of prednisone (40 mg wasn't helping) and is going to do a colonoscopy on April 1st to see what's going on in there. He said if 60mg isn't working by Friday that I need to let them know asap.

The color of my blood varies, but for the most part it is dark red. Sometimes there is bright red droplets and things, but the consistent "crushed up oatmeal that sinks to the bottom of the bowl" look is usually dark red or burgundy.

I'm just frustrated, remicade isn't working and this is going to be my third colonoscopy. What is it going to show? Thank you all SO MUCH for your support and prayers!
turboemma.blogspot.com/


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/18/2008 9:38 AM (GMT -7)   

Hey, I checked out your blog. I see you did try the Peptamen but found it horrible. I’m not surprised – you’re not supposed to drink the unflavored stuff, that’s for people who are doing tube feeding and don’t have to taste it! It isn't meant to be taken by mouth. If you’re going to drink it, get the vanilla version, which you can use alone or with one of the flavor packets.

 

Hope you feel better soon.


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/18/2008 12:45 PM (GMT -7)   
Writer,

Thank you SO MUCH! After drinking the unflavored peptamen I bought the vanilla kind. I am going to drink a can tomorrow morning! I will let you know how it goes =) My doc put me back on a full dosage of prednisone (i was on 40mg but it wasn't working so he put me back on 60mg this morning). I am NOT happy but am already starting to feel MAJOR relief. So frustrating but if it will kick me in remission then I will work on the "maintenance" once tapering =) Don't worry, I definitely haven't given up on peptamen, I truly believe it works and will work when I need it. I think what I'm going to do is go on a liquid diet one day a week and will also use it to kick myself into remission once I'm off of predinsone if I relapse. I figure if I catch the flare early enough I can "baby" my intestines back to health with peptamen. Unfortunately this time my intestines got to the point of "no return" and forced me to get back on a full dosage of prednisone.

One last questions, is the unflavored peptamen safe to drink orally, even though it tastes absolutely disgusting? Thank you for all of your help Writer! I will let you know how I do w/ the peptamen. I definitely want to read your book once it is out! Thank you for taking the time to write a liquid diet book for all of us Crohnies =)
turboemma.blogspot.com/


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/18/2008 2:57 PM (GMT -7)   
Lilturbo,

I'm really glad the prednisone is kicking in. It's nasty, but sometimes necessary.

RE: the Peptamen, I'm amazed that you got down a can of the unflavored stuff. As you discovered, peptides are really bitter. And don't worry, you didn't do yourself any permanent harm. The unflavored version is meant for human consumption, but since it's used for tube feeding, it goes straight to the stomach or the small intestine, which don't have any taste buds, so it doesn't have to be flavored.

I actually was using an amino acid-based formula once that had to be flavored in order to be taken by mouth, and tried to use less than half of the recommended amount of the flavoring. Boy, did I regret that! It felt practically like a chemical burn on the back of my throat (amino acids are even more bitter than peptides). I haven't tried Peptamen but I hope the vanilla version tastes a lot better. Whenever it's like, it's definitely going to be better than unflavored.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 3/18/2008 3:05 PM (GMT -7)   
ok lilturbo, with that color blood it sounds like its coming from up higher in the system.. good luck
randynoguts 



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


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/18/2008 5:37 PM (GMT -7)   
Is that a bad thing or? Does that mean it is coming from my small intestine? =(
turboemma.blogspot.com/


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/18/2008 6:09 PM (GMT -7)   
NO, that is not a good thing. A fissure can produce what LOOKS like an alarming amount of blood IME ( Unfortunately!) but deeper bleeding is harder to judge, much gets pass you in your stool. Anemia IS a real risk here. Please watch this very, VERY closely, OK?
Saying a prayer for you. Here also a cyberhug <<<<HUG>>> for you.

Please take care,
Matthew

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/18/2008 7:11 PM (GMT -7)   
Thank you! I will definitely keep you updated =)
turboemma.blogspot.com/


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 3/19/2008 1:34 AM (GMT -7)   
well it could be small intestines, and ulcer in the lining etc... its not great to have, usually they cant get up high enough with the scope to find it. if it was from way up like the stomach, it would most likely be a dark black color. i am having similar problems at the moment and have my scope the monday after easter. what fun for me, missing a big dinner! we can compare notes? maybe. be sure to ask for copies of the pictures for your blog!!!!
randynoguts 



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

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