Back from visit with GI doctor

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Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 6/23/2009 12:10 PM (GMT -6)   
     Well, saw my GI doctor this morning.  Thank God the biopsies he took during my sigmoidoscopy were negative for cancer but it did show moderate inflammation.  I told him I was about the same, no better, no worse.  He is so frustrated that he can't seem to help me.  He talked about increasing the 6MP to 100 mgm.  He also talked about Remicade...AGAIN!  However, he did mention something disturbing.  He knew of two cases where the patient was on Remicade AND 6MP and both patients died.  Both were young men in their 20's.  Apparently, this happened in Philadelphia.  My GI doctor is very friendly with a Remicade specialist from the Univ of Pa Hospital.  As a matter of fact, he asked me if I would like a consult with this doctor.  What for?  I refuse to go on Remicade!
     We decided my treatment for now would be slow taper of the prednisone...now on 20 mgm.  Try increasing the 6MP to 100mgm (although I think I will just stay at 75 for the next month or so), increase the Cort enema (I mentioned Elaine's doctor's suggestion and he agreed with it) followed by insertion of Canasa.  So, it would be two Cort enemas and one Canasa.  I asked if the probiotic is DOING anything.  He said it wouldn't hurt, so I will stay on it.  Still on Colazal too (3 pills 3 x a day).  He said that patients with the proctitis seem to be in the most discomfort and it is very hard to treat.  If you saw me, you would think I am the picture of health..lol!  I lost about five pounds in the three weeks that I last saw him but could be worse.  At least I am not bleeding and I thank God for that.
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****.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/23/2009 12:51 PM (GMT -6)   

Frustrating to say the least!!  Glad you will not consider Remicade from what my doctor says - not good for us older patients especially.  I will get my Cortifoam tomorrow but starting last night I used the last canister of Proctofoam (not as strong as Cortifoam) and followed by Anusol.  No worse anyway!  I intend to try to do it three times a day as he prescribed but maybe only twice when busy - being out and all.  Dr. MacDermott seemed to strongly believe that if not anemic do not worry much about bleeding.  He said 20 cm is not far and if it stays down there - and we can keep it down there - not so bad.

Glad your biopsies were good!  Something to be thankful for!!  By the way, I feel a LOT better (not UC related) since stopping 6 MP!  DARN side effects!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 6/23/2009 3:53 PM (GMT -6)   
He is on the right track. However, he still hasn't discovered the importance of anti-inflammatory foods in reducing inflammation.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/23/2009 4:01 PM (GMT -6)   
I guess even doctors don't know it all!
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16419
   Posted 6/25/2009 7:11 PM (GMT -6)   
It's good that your biopsies were clear of cancer.

I hope you can wipe this proctitis out once and for all. I would keep all my options open. I don't think you should consider Remicade yet but consulting with a specialist is never a bad idea. Of course, be careful not to get pressured. Maybe you can try some natural anti-inflammatories? I've tried a lot of OTC herbs and foods and none have helped me significantly. Maybe I wasn't persistent enough. Hope you feel better soon.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

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