Hello everyone. This is my first time joining a forum. I am doing so on my doctor's advice as she thinks that a support group would be really helpful for me as I tend to keep everything to myself out of fear of making others uncomfortable or just sounding like a whiner. She is hoping that I can connect with others like me.
I was diagnosed with Ulcerative Proctitis in December 2005. My symptoms appeared very suddenly and severely after a bout of food poisoning which is what the doctors believe was the catalyst. I was prescribed Salofalk suppositories and did very well on them for almost three years. Had very few, very mild flares which were controlled easily by increasing the suppositories from once daily to three times daily.
In August of 2008, I became very ill, very suddenly. Up to 20 bms a day, extreme urgency, lots of blood and mucus, cramps, fatigue, sore joints, you name it. My regular GP was away and the GI that I had seen in the past is four hours away and very difficult to get into. So, I saw my husband's doctor who was really good. He called another GI and I was prescribed prednisone, starting dose of 40mg, as well as Asacol on top of the Salofalk. I finally got in to see my doctor in September and she had me continue the prednisone, but slowly start to taper, and Salofalk but discontinued the Asacol as I was getting severe diarhhea with the Asacol pills intact. The diarhhea stopped when I did this, but I was still having urgency with blood and mucus up to 15 times a day. It took until January of 2009 before I could get in to see my GI for another scope and at that time, proctitis had now progressed to Left sided Colitis. Biopsies were taken and showed chronic inflammation. I was presecribed Pentasa, 2g twice daily, Salofalk suppositories three times a day, and continued with the prednisone, which I had been slowly decreasing over the last five months. I was finally able to taper off of the prednisone completely in March of 2009 and decreased the Salofalk supps to once daily at bedtime and continued with the Pentasa, 2g twice daily. Was feeling very good, back to normal, although now 20 pounds overweight.
(I have also been on Cholestyramine since September 2008 because of severe diarrhea related to having my gallbladder removed in 1993. This really helps control the diarrhea associated with that. )
In November 2009, I underwent surgery to have a very bothersome hemorrhoid removed and at that time the surgeon also removed some "suspicious" growths. Because of the surgery and the pain, I was unable to use my suppositories for a couple of weeks and I again had a flare. I "sucked it up" and started using them again, even though to insert them caused excruciating pain. I went to see my GP and was again put on prednisone on December 8, 2009 as simply increasing the suppositories was not working. I had my blood checked on December 16 as I was not feeling well at all, severe fatigue, abdominal pain, etc, and my white count was at 18.1 so obviously the inflammation was still quite severe. I only managed 9 months prednisone free. My GP is now wanting me to start Imuran, as this is what my GI had advised in Janaury 2009 if I was to become "steroid dependent" and I am very wary of this drug. My GP sent a letter to my GI on December 9, 2009 and as of yesterday, she had still not heard back from him so I am in limbo........feeling like hell still. Is it the prednisone or the UC......one can only guess.
Sorry, this post is way longer than I thought it would be. I started typing and just couldn't stop. I guess my question is, does anyone have any opinions, experiences, advice, etc that they would be willing to share with me regarding the use of Imuran?