question for suebear regarding surgery

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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/18/2009 4:06 PM (GMT -6)   
     Sue, I read where you were diagnosed with proctitis which is what I am suffering from.  I have had this for almost eleven years and my flares are getting more frequent.  Used to be every two years, then once a year, now suffering another flare after only seven months of remission.
     I saw a GI surgeon last year following my hospitalization and he didn't think I was a candidate for the surgery.  He said my condition is considered mild/moderate (hate to see severe cases).  However, since my UC is located so close to the rectum it is in a spot that makes one most miserable.  Luckily, my UC has not traveled further into the colon.  The surgeon mentioned that the surgery isn't all it is cracked up to be (this coming from a very reputable surgeon too) and the quality of life afterward may not be as good as I have now.  He also mentioned the list of complications that go along with the surgery.
     If I could just get rid of this God awful pressure in the rectum.  I moved  my bowels only six times today (eating very little anyway) and didn't have a lot of blood, which is a blessing.
     What exactly were your symptoms before deciding to go ahead with your surgery? 
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****.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/18/2009 9:58 PM (GMT -6)   

Christine,

Yes, my entire time with UC the worst part of the disease was the last 2cms of my rectum.  Once it did spread to my descending colon and I was hospitalized for 9 days of bed/bowel rest.  My last flare, which lasted 2.5 years until surgery, I was prednisone dependent.  On prednisone I could work and have a life but once the taper reached 5mg I would flare again.  My flares consisted of vomiting, fevers, and bloody diarrhea.  The illness cycle that got very wearing, I missed having a healthy active life, and I feared the consequences of long term steroid use.  Once I reconciled with myself that I was prednisone dependent and had reached the end of my medical options, I consulted with a surgeon.   I consulted with a top surgeon and he was the FIRST doctor who told me that if I had surgery I would be fine.  My GI was opposed to it; he said my life would be worse.  I suggest that if you had a top colorectal surgeon tell you that you would be worse off after surgery that you should consult with another CR surgeon.  Second opinions are important.  If you need a recommendation of a surgeon in your state that is highly recommended, go to www.j-pouch.org  It doesn't mean you have to get a jpouch; there are lots of ostomates there as well.  The important thing to remember in all of this, according to my surgeon, if your quality of life is low, it's time for surgery.  No matter what you decide I think a second opinion is in order.  You haven't had relief from this disease in quite a while.

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


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/19/2009 12:23 AM (GMT -6)   
Where on that jpouch website are surgeon ratings?

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/19/2009 8:08 AM (GMT -6)   
In the general discussion forum, at the top is a bar. Click on "find" and in the "keyword" box type in Best Surgeons, and click on "go".

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

Post Edited (suebear) : 6/19/2009 7:22:10 AM (GMT-6)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/19/2009 9:03 AM (GMT -6)   
     Thank you very much Sue.  It sounds as if you were a lot worse than I.  I don't have fever nor vomiting.  The worse is the pressure and discomfort in the rectum.  I am now down to 25 mgm of prednisone from 35 mgm last week.  Last year it took me seven months to get off the prednisone.
     What does an ostomy entail?  Is that just the removal of the anus?  I believe I mentioned that to the surgeon but he said sometimes the UC will travel into the colon, therefore, he recommends JPouch if needed.
  
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****.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/19/2009 9:22 AM (GMT -6)   
Christine,

Remember, it's not just about symptoms; it's about quality of life. If you find yourself making compromises in your life due to your disease that warrants discussing surgery. I am not so much pro-surgery as I am pro-quality of life. In hindsight I lost 2 years of my life due to UC. I cancelled vacations abroad, missed out on numerous social ocassions, and intentionally did not particpate in activities because I did not feel well.

A permanent ostomy would remove the colon and rectum and sew the anus shut. A permanent ostomy does not allow a patient to ever try a jpouch. A temp ostomy removes the colon and rectum but leaves the anus. This is usually done as a first step to a jpouch surgery. The jpouch surgery removes the colon and rectum and leaves the anus. The jpouch, in essence, replaces the rectum. If one is unhappy with the outcome of the jpouch they can always revert to a permanent ostomy.

Hope this helps!

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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