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Southern Lady
Regular Member


Date Joined Dec 2009
Total Posts : 32
   Posted 4/5/2010 9:23 AM (GMT -7)   
I am at my wits end. A little history, I was diagnosed in 1986 but symptoms started in 1976. Have had my gallbladder removed and in 2001 had my terminal illiem and parts of both of my large and small intestines removed. I have never been on maintenance medicine because I thought I could just live with the big D. After my surgery I realized that I had lost my sphincters (gallbladder and terminal illem). So I always wore a pad, just in case. I know I still I have the rectal, but that the last and with D it is not always enough. It all caught up with me in November 2010. Started the worst flare in my life.

Since then my GI has started me on Predizone (which I refused), Pentasa (took and had no results), Flagel, Levsin, and Humira(2 months). I have been on a low reside diet since November. Last week my C-reactive rate was still elevated. GI put me on Flagel again. So here comes another yeast infection. I have no pain, thank you Lord. I have no blood in my stool, again thank you. But the D has been constant! I am sick of the accidents!!! I am tired of being afraid of leaving the house. I tried of being depressed. Started counseling a couple of weeks ago and the counselor does not know what she can do for me. I have been through a lot of therapy in my life, and am back in a small town and the selection of therapists is 2. So not much help in that arena. My closest family is 400 miles away. Have lost 1 of my best friends because she does not get it. This weekend I finally just got mad. I am mad at the BIG D taking away my life.
humira Feb 2010
nexium 40mg
gemfibrozil 1200mg
levothyroxin 100mg
estradoil 1mg
topmmax 200mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/5/2010 9:28 AM (GMT -7)   
You should take to your doctor about questran. They may help to slow the diarrhea. You really need to be on some type of maintainence med as this disease is just going to keep attacking and attacking you if you don't treat it. You need to remember this is a chronic and incurable bowel disease. I hope you get feeling better soon. Hugs!
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"*

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 4/5/2010 10:02 AM (GMT -7)   
I know this might sound dumb...but have you tried using Immodium?  Sometimes we over look the simplest solutions.  I have been using 1 pill every other day and I hardly go to the bathroom now.  Off of it, I could use the bathroom about 6 times a day, before Remicade I was doing 10x a day.
Feel better and stick it out.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily, Loperamide HCL - 2mg every other day


Southern Lady
Regular Member


Date Joined Dec 2009
Total Posts : 32
   Posted 4/5/2010 4:30 PM (GMT -7)   
Thanks guys, I am on humira now and on probiotics as well as immodum. The D is worse in the am and slows down after lunch time. But as soon as I think all is ok, I and I am ready to make a grocery run or something here he come again.
humira Feb 2010
nexium 40mg
gemfibrozil 1200mg
levothyroxin 100mg
estradoil 1mg
topmmax 200mg


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/5/2010 5:46 PM (GMT -7)   
Do you think the nexium and or topamax could be causing some of the diarrhea? I know I can't tolerate nexium and I have heard from friends that topamax causes diarrhea too. Just a thought. I got huge relief from my diarrhea after I got off zoloft and nexium. My pcp was going to put me on wellchol but I never had to take it. Good luck to you.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid,claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)


Blood test positive for Crohn's via prometheus ibd serology panel


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/5/2010 5:49 PM (GMT -7)   
I've read that most of the bile salts absorption is done by the terminal ileum, so if the terminal ileum has been surgically removed, the bile salts can cause irritation and diarrhea. So, for people who have a lot of inflammation in the TI or the TI has been removed, docs usually put the patients on questran/colestipol to absorb the bile salts, and lessen the irritation to the colon and diarrhea. I highly recommend talking to your doc about trying questran/colestipol to slow down the big D.

I hope it helps. Also, for my husband, Flagyl gives him diarrhea, so if you're on it, some of the diarrhea could be flagyl related. So, if you're on it, perhaps you can try phasing it out and see if the D improves.

Also, there are some other people on the board, who use fiber (such as metamucil) to bulk up the stool to reduce the diarrhea. Of course any decision to add fiber should take into considering if you have any strictures or obstructions, or stricture forming disease, and also keep in mind that adding fiber can cause real discomfort and pain with gas, if hurried. This is something to discuss with your doctor before trying.

I hope one of these suggestions helps, and you get some relief.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Southern Lady
Regular Member


Date Joined Dec 2009
Total Posts : 32
   Posted 4/5/2010 6:34 PM (GMT -7)   
Even if I miss a single dose of nexium I have heart burn from drinking water. Prevacid and the others don't work for me so quitting that is not an option. I will however check out the topamax, I have been on it for years due to nerve damage in my back. As far as the flagel I am now on a 10 day regimen and was on it also for 10 days in Dec. So there is no long term usage. The GI nurse told me to call back if the D has not slowed up by Wednesday. Could you please tell me about Questran and Wellchol?
humira Feb 2010
nexium 40mg
gemfibrozil 1200mg
levothyroxin 100mg
estradoil 1mg
topmmax 200mg


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 4/5/2010 7:16 PM (GMT -7)   
Questran, Welchol, Immodium all good stuff to help slow you down some.  Right now I'm doing welchol 3 pills a day, and immodium up to 16 pills a day, it's worrking really well for me.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 
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