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darksky602
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/8/2009 7:06 AM (GMT -6)   
My back ground with UC

I have never posted on this site, wish i knew it existed when I was battling this disease. I am currently 28 years old I had lived with UC for 8 years. I was told i caused the disease myself by my family and that everything is my fault. I tried everything i could. The doctors told me it was all in my head at first and nothing was wrong with me. Finally, after 3 years i began all the drug therapies. Nothing worked. I used nicotine patches and those helped me live more comfortably. After those stopped working my stomach just stopped working as well and would no longer digest food. I was finally hospitalized and hit with remicade which had no effect. They told me either they removed my entire large intestine or i would die within a few days because it was about to rupture. Of course I told them to get it the heck out of me!!! I am currently losing weight and getting healthier so i can have my j pouch surgery. Now i live with a pouch.

WHY I NEED HELP AND INFORMATION:

6 months ago my 60 year old father was diagnosed with UC. Now they say he has exhausted all treatments except remicade, but his large intestine is so bad the doctors are already recommending having the entire large intestine removed. He has refused the surgery and chose the remicade option first. We will find out tomorrow if it is working. He has currently decided he wants to try PROBIOTICS to see if it will knock his disease into remission, but the doctors say he is passing tissue from the intestine in his stools. Could the probiotics actually have a real chance of healing him if he is that far gone? He is also possibly going to try to check himself out of the hospital against doctors orders to do this probiotic protocol. I am scared he is going to rupture his large intestine at home and bleed to death or severely injure himself by doing this. Any information would be helpful please. In the end though i told my father it is his choice and his life and his disease to treat and i will support him no matter what.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/8/2009 8:08 AM (GMT -6)   
Probiotics should do no harm, but it's hugely unlikely they will induce remission and heal his colon.

I feel bad for your father, who has to face a surgery decision before he's even had time to adjust to the UC diagnosis. He does indeed have a risk of rupture, which would make the surgery an emergency. Emergency surgery is riskier, and the spilling of bowel contents into the abdomen can produce a massive infection. Hopefully the Remi will work for him.

You're wise enough to know that this is his decision to make. All you can do is support him and provide information. To that end, you may want to visit the ostomy board here at HealingWell.

Your father is fortunate to have your support and understanding.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/8/2009 10:36 AM (GMT -6)   
     Your father is close to my age.  I will be 63 in August.  You say he exhausted all treatments.  Could you tell me exactly what treatments he was on?  I was diagnosed with UC in 1998.  Hospitalized for eight days that time and placed only on Asacol.  They did give me a short course of the prednisone too.  Two years later I suffered my second flare.  Probably my fault because I was feeling so well, I had stopped the Asacol.  The doctor then placed me on Colazal as my UC is located in the rectum (proctitis).  Two years later another flare, back on prednisone along with the Colazal and the doctor talked me into 6MP.  My flares have only gotten closer together.  They occurred every two years for the first four years and then yearly.  My worse flare was last year.  It lasted seven months and I was hospitalized for ten days.  The doctor tries to talk me into Remicade but I refuse to take it because I was exposed to the TB virus back in the 60's.  I am currently in yet another flare, the last flare ended Nov 1st (that is when I took my last dose of prednisone).  We are trying to treat this with Cort enemas nightly and in the morning, Colazal and 6MP.  I have been on probiotics since being hospitalized but really don't think they keep you out of flares.  You can see at the bottom what other supplements I am taking. 
     I wish your father well.  Tell him to hang in there and to try to keep his colon as long as he can.  I went to a GI surgeon for a second opinion after my discharge from the hospital last year and he explained  that surgery is a last ditch effort and with it can come many complications.  This coming from a prominent surgeon in the south Jersey area who makes his money off surgical procedures.  His opinion was to stay with my course and to try to hang onto my colon as long as I could.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


darksky602
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/8/2009 3:27 PM (GMT -6)   
Thanks for the advice he seems to be doing much better this afternoon, I hope he is responding to the remicade.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/8/2009 6:13 PM (GMT -6)   
As bad as it sounds his UC is right now, I'd say it is highly unlikely that probiotics alone will get him out of this flare. I do suggest, however, the he go ahead and use them while he's on the Remicade.

I'm glad that it sounds like you're doing well, however! Keep us posted on yourself as well as your father!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).

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