Surgery or medicine?????

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chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 1/5/2007 7:59 AM (GMT -6)   
I found out that I have pancolitis July 2006.  Everything is moving very fast.  I have spent 1 week in the hospital for colitis in August and a few days for a kidney infection this December that was probably "masked" by the imuran and predisone that I was taking.  I had bad reactions to imuran so I discontinued after trying for 2 weeks.  I visited my GI doctor a few weeks ago (after my imuran episode) and I think I frustrate her because I hate medicine.  When I went into this visit, I was FINALLY symptom free - 100%.  She told me that I needed to start to think about either surgery or remicade.  Unfortuately, I am opposed to both - neither one sounds like what I want to do.....I just want to not take medicine and be okay yeah but......
 
Anyhow, since my visit, I have started bleeding again and I am attempting to resolve without calling my doctor because I know that she will just increase my 10 mg predisone and add more medicine.  I am trying to get off of all of this medicine to see if I can do it.  But, I am starting to wonder if it will work because I have been bleeding for over a week now.  I started taking probotics yesterday and enemas 4-5 days ago.  So, I am pondering this surgery and just trying to be informed.  I have never had pain with my UC.  I am anemic.  I am having 3-4 bowel movements a day but that is on 10 mg of predisone....I was down to 1-2.  From what I have read, have the surgery still leaves you with "D" and also alot of BM's a day.  Do people have the surgery because they just HATE the medicine or because of the pain?  Am I overreacting on the fear of the potential side effects of these medicines?  I am 39 years old and have been fortunate to be very healthy up to this point but I am at a loss with what to do. 
 
I feel so lost......any direction would be appreciated.
 
Pancolitis - July 2006
Predisone - 10mg, Asacol - 12 tablets per day, Protonix
Ferrofood, Catalyn, Folic Acid


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 1/5/2007 8:17 AM (GMT -6)   
Many UCers live in denial, denial that they are sick and that they need daily medication. I was one of those.

Only you can decide which route to take, continued medical therapy or surgery. What I do know about UC is that it is a chronic life long disease with periods of remission and flares. Research shows that medication is still the best choice for maintaining long periods of remission.

I was very against surgery for many of the reasons you stated. However, let me shatter the myth for you, you will not have chronic diarrhea, urgency, or pain post surgery. My life today is far better than it was when I was living on 22 pills a day to control my UC. With my j-pouch I have been able to hike 200 miles across England, 100 through Scotland and another 100 through Ireland, and so much more. UC took away my ability to commit to vacations and social ocassions. I have never cancelled a commitment since I have had my j-pouch and that has been six years now. I have no idea what my frequency is, do you know how many times you urinate per day? I do know that my frequency does not get in the way of my life.

I recommend that you visit www.j-pouch.org There are over 5,000 members on that site and you can get yourself educated on the surgery before you have to make a decision. You might want to research all your surgical options, permanent ileo, and the BCIR.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 

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