Question for summerstorm

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Christine1946
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Date Joined Aug 2008
Total Posts : 5963
   Posted 9/25/2008 8:44 PM (GMT -6)   
You mentioned you have an ileostomy.  Does this mean you didn't have your entire colon removed, just the rectum?  My UC is located in the rectum and I am having a time of it.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/25/2008 8:55 PM (GMT -6)   
ooo i am so excited, i have my own question, lol.

I have had my entire colon removed, and my rectum, they took it out and sewed it up!
It's not bad, just a little weird sometimes, other than that it's much easier.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/26/2008 7:11 AM (GMT -6)   
Christine,

My UC was located primarily in my rectum and after a 2 year non-stop flare I opted for surgery. Unfortunately with UC you have to have the entire colon and rectum removed or the disease will just return to the unaffected parts. I opted for a jpouch, a surgery that makes a false rectum out of 9-12 inches of the small intestine. Defecation is similar to those with a colon and rectum.

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


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/26/2008 8:23 AM (GMT -6)   
Hi Sue,
     I went to a colorectal surgeon last month.  He is listed as one of the top ten in the U.S..  I was very impressed with him, very nice man and spent a long time explaining everything to me.  He read over my colonoscopy report (done while I was hospitalized in May).   To me my symptoms seem pretty bad but according to him my ulcerative proctitis looks mild/moderate.  Hate to see what severe is.  I am still flaring and have become, unfortunately, prednisone dependant.  The surgeon said I am not a candidate for surgery.....yet.  He explained that patients who are candidates have bowel movements 20 + times per day (mine are 4 or 5 in a.m. with blood and urgency).  He also said that my condition now is what I could expect AFTER the surgery.  That with surgery comes a multitude of potential complications.  I am 62 years old, with osteoporosis (I am sure due to the prednisone use) and high blood pressure.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/26/2008 8:32 AM (GMT -6)   
I am surprised a surgeon of that caliber would think that being prednisone dependency is okay? It's not okay especially since you have osteoporsis and high blood pressure. I am certainly not suggesting you have surgery but do wonder what your doctors' plans are for getting you off prednisone? And also to contradict your surgeon one more time, quality of life is the #2 reason (after pred dependency) to have surgery. If you feel your quality of life is low then that in itself is a reason for surgery.

Yes, surgery leaves us with a higher frequency but we have no urgency, pain, or bleeding. We also have the opportunity to get off meds.

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


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/26/2008 8:55 AM (GMT -6)   
In his defense,  I could have been off the prednisone when I saw him.  I weened myself off for two weeks in August, I saw him August 14th, but was still bleeding a bit, not bad.  He examined my rectum and it was after that visit that my symptoms started getting worse.  Guess he stirred things up in there.  I had to go back on 30 mgm of prednisone with slow taper.  Two weeks ago was weened off again...symptoms back, bleeding, urgency.  My GI doctor said to start with 40 mgm of prednisone this time for only five days then to taper to 30 for five days.  He sees me on Oct 6th ( I am sure he is going to mention Remicade again) and by that time he wants me down to 20 mgm.  Believe me my GI doctor is sooo frustrated that he cannot help me.  Remicade is not an option because I was exposed to the TB virus back in the 60's and Remicade can activate the TB virus in your system.  His associate disagrees with him too...said I am NOT a candidate for it.  How can two men in the same practice disagree like this???  His associate actually witnessed a patient die from the Remicade infusion for the same reason I am not a candidate for it.  Scary huh?
     To tell you the truth, I was a little surprised that the surgeon said I was not a candidate for surgery either.  These guys usually like to cut.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/26/2008 10:32 AM (GMT -6)   
That's weird that your surgeon would even mention the number of BM's required for surgery. I have an average of 5 when I'm flaring, and my surgeon said to consider my quality of life and he'd be happy to do surgery whenever I was ready.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/26/2008 11:25 AM (GMT -6)   
they didnt' ask me my number, i just went and said, i want surgery. I told my GI either he could find someone to cut it out for me or i would do it myself. And i think i was actually serious!
But i think you should see another surgeon, i know he was one of the best in the country, but it doesn't hurt to get a second opinion, you know?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/26/2008 5:12 PM (GMT -6)   
     To tell you the truth.  I am not so gung ho on having surgery.  The list of complications arising from it scares me.  Not until all my options are depleted, without Remicade, will I be ready for the operation.  Other than the bleeding, which today, after only two days on 40 mgm of prednisone, has diminished greatly and pressure in the rectum, much less today also, I am not in any pain or discomfort.  Nor have I ever had pain.  I know a lot of you suffer great discomfort and my heart goes out to you.  Only when I was hospitalized in May was I in discomfort.  So much so that I thought the ulcerations had spread to my uterus.  The pain then even went down into my legs.  So, you could say, even though I am still in a flare, I am much improved.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.

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