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NJROCK316
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/4/2008 10:27 AM (GMT -6)   
I see a lot of people sharing their stories on here so I figured I would go ahead and add mine.  I went through a very tough time healthwise back in January/February of 2001 when I was 24 years old.  I returned from vacation in Aruba Jaundice and it was eventually found after many tests that I had a stone blocking my bile duct.  After the scope to remove the stone I developed a very bad case of Pacrentitis which kept me at Mt Sinai hospital for a month.  It was during this time that I was diagnosed with PSC which looked to be the culprit of the blockage.  I returned home on a low fat diet and taking URSO three times a day.  I was doing just fine and feeling very good up until December of 2005 when I started having to make repeated trips to the bathroom with diarrhea.  After a few days I realized it had to be more then just some kind of bug so I visited my doctor who thought it could be C Diff or some kind of bacterial infection.  I was put on an antibiotic and probiotics but nothing improved.  My stomach was getting worse and worse as were the runs to the bathroom.  It was then found that I had developed UC which is not uncommon with those who are diagnosed with PSC.  I've been on the same URSO regiment as well as Colazal (three tablets 3X a day) with the cort enemas for flares.  My main issue continues to be in the morning when I have to use the toilet three or four times before leaving the house.  Then for the most part I'm ok until the next morning depending on what I eat.  I too have encountered those out of nowhere needs to sprint to the bathroom in the middle of day.  The most frustrasting is going a few times in the morning and then having to go again once I get in the car to start my trip to the office.  It's then a mad dash to get to the closest bathroom I can find.  I going to be going for a colonoscopy in the next couple of weeks to check things out.  At this point while my UC is very annoying it's not as bad as some of the stories I have read on here.  Medication and diet tends to keep things manageable even though having it gone all together would be best.  I fear ever having to leave the house too early in the morning and not being done if you know what I mean.  Also, I experience the same run down feelings in the middle of the day and in the morning.  I find that the vitamins I'm now taking do help with that and don't bother the UC.  Just be sure if you're going to take them to speak to your doctor first.  With PSC is important not to take anything that will damage the liver and as you all know you never want to introduce something that might bother your UC.   

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/4/2008 1:11 PM (GMT -6)   
thanks for sharing, I am sorry you have gone through all of that. I defintely understand your frusterations! Please let us know how your c-scope goes.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 8/4/2008 8:01 PM (GMT -6)   
Welcome to HealingWell! Thanks for sharing your story.

Which vitamins do you use? I use Forvia.

Mornings are usually a roll of the dice for me. Some mornings one bm is all. Other mornings are a different story... It would be nice to have a crystal ball so I could plan accordingly! :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


NJROCK316
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/4/2008 8:16 PM (GMT -6)   
I know what you mean Dakota.  There's just no way to be able to predict the type of day you might have.  I get my vitamins from GNC and have to make sure they're all water soluable because of the liver issue.  I take Vitamin C, Vitamin D, a chewable B Complex, and Amino Acids.  Like UC and the possibility of colon cancer the dark cloud that hangs over people with PSC are liver tumors.  That's why I have to have all of my liver function blood tests done atleast once a year.  The PSC I can deal with though.  It's a very slow progressing disease and if you take care of yourself it could be a very long time before the worst case liver transplant is needed if at all.  If worse came to worse the transplant success with the liver is around 90%.  The UC is just so darn difficult to deal with.  Like I said everyday is different and you just don't know if you will have a good day or a very bad one.  It's enough to make you cry sometimes. 
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