New to the forum, but not new to UC

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New Member

Date Joined Aug 2009
Total Posts : 6
   Posted 8/13/2009 12:28 AM (GMT -6)   
I found this site late one night while looking for info on drugs and probiotics.

I was diagnosed in 1999 and have experienced many of the same up's and downs as many of you here. Unfortunately for me, my disease pattern is mostly active, with the occasional short period of remission, followed my many months of an active flare. At this point, I am happy that I haven't been hospitalized in almost 2 years.

I am currently taking Prednisone, Asacol, and 6MP. It seems that my flares only go away after a long period of Pred, often taking months at very high doses. As much as I hate the side effects, including insomnia, appetite changes to the extreme, altered tasting and smelling, and overall joint pain, I love that it can bring on remission for me.

I know that a higher dose of 6MP would help, but the last time I was maxed out, my blood chemistry crashed, and I was hospitalized and quarantined for 2 weeks. I had 3 blood transfusions, and ended up having surgery for a perianal abscess.

I am currently trying to decide whether to take the Remicade route, or just get the j-pouch done. I current GI has been very good to date, but hasn't really provided me much input either way. When I was hospitalized for the 2 weeks, the GI specialist I was admitted under suggested that most people go for surgery when they have had enough. I am curious to know what others have experienced with the surgery. My biggest fear is that there will be complications that will leave me with a bag for the rest of my life. Being a fairly active 34 year old with 3 kids, this would be a devastating outcome. UC has already taken away my 15 year medical career, and I don't want it to take away anything else.

Elite Member

Date Joined May 2003
Total Posts : 30984
   Posted 8/13/2009 1:28 AM (GMT -6)   
Hi..welcome to the forum!

I don't have any experience with the pred or 6MP, but I can truly understand the fears of possible outcomes regarding meds and surgery.

t seems your situation is complicated and hopefully others who have more experience will offer some input.

Is your UC throughout your colon or limited?
Have you tried any of the rectal medications at all in combination with the ASacol and others?

I hope you have good support at home through family and friends to help you emotionally as well as physically, etc.

*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 8/13/2009 10:47 AM (GMT -6)   
I'm not scared of having surgery, but I know I'll try Remi and the other biologics that are available beofre trying surgery. However, this is a really personal decision. Good luck!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

New Member

Date Joined Aug 2009
Total Posts : 6
   Posted 8/13/2009 3:41 PM (GMT -6)   
I don't think I've ever been told how involved it is, but from my symptoms it is at least left-sided. The main reason I can tell is that during an acute flare, I can tell when my bowel movement gets to the inflamed point, which seems to be right under the zyphoid process.

As for med's, I tried the enemas early on, but didn't really see any benefit. I've been on anti-depressants in the past, but refuse to go back onto them due to the side effects and withdrawal.

Veteran Member

Date Joined Jun 2009
Total Posts : 2012
   Posted 8/13/2009 8:08 PM (GMT -6)   
If you are worried about the long-term effects of Remicade, maybe you could go on it to try getting some relief while you learn about the surgery and decide on it.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

Veteran Member

Date Joined Apr 2006
Total Posts : 3402
   Posted 8/13/2009 8:23 PM (GMT -6)   
Crianor - Welcome to Healingwell! Sorry you had to find us, but we're glad you did! There are lots of caring and knowledgeable people here.

I am pretty sure that if I were to have a major flare again that I would pursue the surgery route. I am currently on many meds, including Remicade.

I find that the more you know, the less scary things are. I would suggest a consultation with a surgeon to see what your options would be if you decide to go for surgery.

Remicade is also an option, but can take a few months to reach full effectiveness.

Late last year I went back on Effexor after tapering off earlier in the year. I found that my anxiety was causing more gut problems than I wanted to deal with. Within a few weeks of starting back on the Effexor, I felt much better (and my hubby didn't mind me losing the mood swings).

I hope you find something that works for you!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  remission
Lialda 4 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: August 19
Last Prednisone dose:  7/15/08  (Hooray!  I made it a year!)
Co-Moderator UC forum:  Keep HealingWell running smoothly:

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