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Valorie
Regular Member


Date Joined Nov 2004
Total Posts : 64
   Posted 3/21/2009 1:32 PM (GMT -7)   
Hi-
 
I am so tired. I was just recovering from my fall flare and weaning off prednisone when I broke both my feet and needed emergency surgery on 12/30. Have been non weight bearing for 11 weeks now. During this time I continued my pred taper and went off it a month and a half ago. Since then I have been having episodes of violent diarrhea anywhere from 2-5 times a day. These have resulted in an almost constant state of dehydration. In the last month I have had 15 liters of lactated ringers infused. My veins kept blowing the peripheral lines and so they put in a PICC line but that has been nothing but trouble- it took 2 surgeons and 2 hrs to get it in and they told me next time i should just go straight to a central line. So now the picc line isnt working well either- they have flushed it with the clotting busting medicine and it improved slightly but it still isnt great. They think i have so much trauma to that arm that the vein is bruised and is pinching the picc line off. I saw my gastro yesterday and shared how tired i am of being sick and in pain- it is especially fun to be wandering around my house with a walker and an iv pole. I had just graduated to crutches when they put in the picc and now got bumped back to the walker. I was totally prepared for him to hospitalize me at this point since i cant go for more than 2 days without hydration. I started measuring my output and reported that in 24 hrs I had passed 1500 ml of diarrhea. He told me that was almost unbelievable and questioned me twice on how sure I was. He told me to stop my prevacid as that could be causing the diarrhea= despite the fact that i have been on it for 8 yrs. I think that is what has put me over the edge. I had to suggest that i start the prednisone again and that i should infuse every time i have diarrhea. He did agree to do a colonscopy in 3 wks and have me do more stool samples.
 
I need a new gastro desperately and dont know if anyone will take me on in the midst of a problem or even how fast i can be seen. I dont want to go on like this= i feel like a stroke victim half the time- i cant put together sentences correctly or mix up my words due to the dehydration and my 4 yr old corrects me. It is so sad. I dont know if this is ibs or ibd and dont know how to tell the difference anymore. There hasnt been any blood in my stool but supposedly ibs doesnt cause dehydration let alone chronic dehydration.
 
Any thoughts.. suggestions.. advise.. I am trying to advocate for myself but i am so tired of all my struggles over the last few weeks and it is hard to fight when you cant think straight.
 
thanks
Val

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/21/2009 3:14 PM (GMT -7)   
Wow!!! you are in my thoughts...I am sorry to say that I have neither advice nor suggestions. I am very happy for you that you get to be home instead of stuck in a hospital...I hope you get more rest at home.
Again, you are in my thoughts, and ((((((((((((((((hugs)))))))))))))))))))))
"The earth laughs in flowers"


Valorie
Regular Member


Date Joined Nov 2004
Total Posts : 64
   Posted 3/21/2009 4:04 PM (GMT -7)   

thank you,,, the sad thing is i would rather be in a hospital at this point.. at least i could get tests done there.. at home i have a 4 yr old to chase after and it would be nice to just lay in bed with an iv and not struggling to manage at home alone anymore... plus the runs with a walker and an iv pole suck! :)

 

thanks again- take care and have a good nite


40 year old female- Diagnosed with Crohns in 2000. Currently on Colazaal 950 mg, prevacid 30 mg, prednisone. Also diagnosed with ibs.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/21/2009 4:13 PM (GMT -7)   
Hi Val I was wandering if your Dr. has put you on ensure to help build up your system some, and low B-12 can cause alot of problems alot of us people with crohn's have low B-12... Are you allowed to take Imodium to help with the D.? Have you tried drinking gatorade or anything to help replace some liquids? Have you someone there to help with things ? Have you been to your GP,maybe s bit more help from your GP would help sounds like you are having quite a go of it ...how is your acid reflux doing at this time I know it is not very good to cope with ...keep in touch and let us know how you are ... hope your feet heal soon.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 3/21/2009 5:05 PM (GMT -7)   
I am so sorry you're going through this :( :( :( It's like having this disease isn't enough, but we have to worry about getting the right treatment from our doctors :/

Can I ask you where you are from?
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


Valorie
Regular Member


Date Joined Nov 2004
Total Posts : 64
   Posted 3/22/2009 8:32 AM (GMT -7)   

Hi and thanks for the replies-

Honestly I dont know what to do as far as my diet goes, i tried low residue for a while but then it doesnt seem to make a difference- everything starts the diarrhea off so now i kinda eat what i want when i have an appetite- i figure i am going to be sick anyway so i might as well enjoy it briefly at one end before it comes out the other. I am doing ginger ale and revive vitamin water and protein shakes and extra vitamins and culturelle and fish oils.

i am in rochester new york. Last nite I maxed out my immodium dosage and just kept going.. it is crazy. Although on the plus side I did get more than enough for my stool samples. I saw this red stick like thing in there and am hoping maybe it is a parasite of some kind..? does that sound possible?

 

thanks and take care

 

thank

 

 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 3/22/2009 8:16 PM (GMT -7)   
So sorry you are feeling poorly Valorie. Report that thing you found in your stool to your Dr. You are in my thoughts. Be well. :-)
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 3/23/2009 10:11 AM (GMT -7)   
Val,
Follow the advice and contact your G.P.
There are alot of great G.I.'s in the area...
Ask your G.P. ...
Wow, Rochester, New York...
I'd rather be in Rochester! (LOL)
diagnosed 1981
remission until 2006
Remacade,resection
B-12,Pentasa,Loperamide,
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)


Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 3/23/2009 10:29 AM (GMT -7)   
I live in Syracuse, and I just called my doctor's office (I'm very happy with them) to see if they have a recommendation for you since we're so close by... the nurse will be calling me back as soon as she finds out... I will let you know!
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, tapering dose of 40mg Prednisone, Bentil and Percoset as needed... considering Remicade


Valorie
Regular Member


Date Joined Nov 2004
Total Posts : 64
   Posted 3/23/2009 12:35 PM (GMT -7)   
thank you and thank you Kriss. That is so nice of you. My current GI is Anthony Barratta and I had wanted to see Dr. Antignano but he is no longer accepting new patients. I appreciate any info or referrals you can give me.
 
Thanks again and have a great day! smilewinkgrin

MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 3/23/2009 3:41 PM (GMT -7)   
Oh my gosh....you poor woman!!! I wish I had some words of wisdom for you other than hang in there! Your share of good luck must be on its way soon since you've sure had your share of bad :(
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol 

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