I have been a lurker for some months now. I was diagnosed with ulcerative proctitis since March 2005. I was put on asacol and went into remission. after 2 years of remission I had started tapering my dose. I didn't know that I needed to remain on my meds for the rest of my life. My GI was pretty short with my when she discovered the ulcerated area in my rectum. Its about 1 inch! Anyway, last August I started IVF treatments. My first cycle resulted in a negative. I still was in remission w/ my UP and by that time only on 3 pills a day. I did treatments again in November and stopped my asacol. I did get pregnant but had a missed miscarriage at 9 weeks. All through the beginning of the pregnancy, without my asacol, I was fine.
After my d&c (Jan. 08) one week later I started bleeding. The bleeding and mucus just kept getting worse. They put me back on asacol and gave me the lecture about stopping my meds (I know). I started taking 9 pills a day. Then they added in canasa, then they switched to a hydrocortisone enema, etc. I went away for 2 weeks in february and the situation just got worse. After my trip I had another colonoscopy (Feb 19th) and it showed SEVERE PROCTITIS. I finally surrendered to prednisone. I was soooo SCARED of the drug but I didn't know what my options were. they put me on 40 mgs and after a week I was still bleeding tablespoons of blood and feeling very weak. I then went in for a flexsig and was finally admitted to the hospital back in March for IVF steriods, liquid diet, etc. I stayed there for 6 days. When they finally released me...I was released on 60 mgs of prednisone with a quick taper to 40 mgs because I was going BONKERS on the steriods. I also was taking rowasa enema in the morning and hydrocortisone enema at night. After a month of that course ...tapering the prednisone, adjusting other things, adding vitamins, etc...I went into remission. They also switched me to colazal - 9 pills a day.
So I am in remission...thinking of my next IVF cycle, just got back from Negril with my husband and friends in May. Had a blast! Taking my meds...and BOOM ...Father's Day I had blood in my stool. so I called my doc and she said start taking the canasa in the morning and lectured me again about staying on my meds throughout a pregnancy - I KNOW. Lesson learned.
So the symptoms never got better in June but I really just went with the flow. I then had another sigmoidoscopy July 8th and it showed still SEVERE PROCTITIS. My Doc basically said I had to GO BACK on prednisone at 40mgs, canasa in the AM, and hydrocortisone enema at night...and we should called my IVF clinic and cancel my cycle. I was already 4 days into my shots. Too make this LONG STORY SHORT.....
I am taking VSL#3, fish oil, bee pollen & royal jelly, vitamins, staying lactose free and taking all meds. I was not stressed before the cycle. In fact, my husband and I were looking forward to it. We were finally ready to get pg after my m/c.
So last week, July 14th I went and saw Dr. Mark Peppercorn http://www.bidmc.caregroup.org/display.asp?leaf_id=11929 for a second opinion. He basically said my course of treatment was okay and there was no need for IV steriods. He told me that VSL#3 is the BEST probiotic out there and the one that they actually have data to support. I was told about NSAIDs, and everything else I had read about.
So....he said after you have a few good days you can begin to taper your prednisone. I took it and tapered the prednisone after one day of no bleeding! I still had mucus. So I tapered on Wednesday, 7/16 and then last Friday afternoon I had blood. I called me Doc and she said that i must of tapered too quick and to go back to 40mgs of prednisone. I took the 10 extra as soon as I got home and have been on the 40 predisone since. I had a little blood saturday night and have not had since.
Its just a guessing game...she said if I have 3 good days I can begin to taper again. She tapers me in 10 mgs doses.The Doc at Beth Israel said you can try 5mgs or 10mgs. Whatever works best since the SIDE EFFECTS KILL ME. So if I taper Wednesday (assuming today is a good day and tomorrow)....is being on 40mgs of prednisone for 15 days good enough to start a taper? Also I am still on the canasa in the AM and the hydrocortisone enema at night and my 9 pills of colazal...ALL FOR AN INCH!!!
Anybody else experience what I am goin through? Any advice? I really want remission so I can go back to IVF. Is proctitis as serious as UC?
Thanks for all your help!