I am new to the forum and just wanted to introduce myself.
I am a 41 year old mom who was first diagnosed with proctitis 13.5 years ago while I was pregnant (just months after quitting smoking). At the time, I remember clearly being relieved when I was told I had proctitis and not cancer. For the next 12 years I suffered through occasional flare ups which were easily controlled by Salofalk suppositories. When things started to go bad, I would realize that nothing was moving, I would use 6-10 suppositories and day and feel better within a week. I never felt as sick as I was when I was originally diagnosed.
In September 2006 I quite smoking (for the last time!). Two months later I started to loose weight, couldn't pass a bm, and suffered with constant nausea and cramping. I did not go to see the specialist. Instead I got my family doctor to give me salofalk enemas and I used them for 2 weeks along with the suppositories during the day. I got things back under control quickly. I lost about 12 pounds, missed a couple of days of work, but figured I had just had a particularly bad flare up.
Because I have been monitoring this myself for so long, when I started to feel no right in November 2008, I didn't really get too concerned. I increased my suppositories again and then would forget about it. I have done this often over the past 13 years. As soon as I felt ok, I would forget that I had any disease at all. This time the suppositories didn't seem to be helping again. I got some new enemas and started to use them occasionally. For the next couple of months, my condition didn't seem to improve or get worse.
In February 2009, things got out of control. I realized that I was making huge changes to my life to manage my illness. I was no longer eating in the morning so that I would have to worry about bathroom time while I was at work. I was booking appointments so that I could get home in the middle of the day to sit in the bathroom. I also couldn't hold the enemas in at night and I spent a lot of time curled up in a ball. My pain went through the roof and suddenly I was passing nothing but blood and mucus and diarrhea. I couldn't work anymore. I wanted to throw up all the time. I went to see my doctor.
4 Days later I was in for an emergency colonoscopy with my old gastro doc. We discussed the options before the procedure and the plan was cautious but appropriate. After the scope things changed. He very nearly put me right in the hospital. My entire colon was involved and it was in very bad shape. He put me on antibiotics and prednisone immediately.
2 Days later, as the blood continued, my prednisone was doubled. I continued to go to the bathroom 10 times a day, continued to pass mostly mucus and blood with a little diarrhea. And then suddenly I blocked. Nothing came out for 6 days. I was bloated, cramping and in terrible pain. I got to go for my second colonoscopy in 2 weeks. This time he said that he saw a little improvement in the right side and across the top but that I am not out of the woods yet and we are still working at saving my colon. My diet is down to a handful of options, I am to stay in bed for another 4 to 6 weeks and I have lost 18 pounds. The left side is not healing quite so fast. I am blocked now. I actually passed a tiny bit of diarrhea yesterday (the first in 7 days). Otherwise, I haven't gone except to release the enema remnants the next day.
I am having some side effects from the prednisone - joint pain, hair growth, my skin is dry and red, my hair is dry, I only sleep 3-5 hours when I take two sleeping pills. I have pain and cramping in my lower back and abdomen every day and occasionally feel like I would like to 'go' but I can't. I do occasionally experience some very loud rumbling. I have indigestion every time I eat anything.
I have had the last three weeks to do lots of reading, to contact two friends who also have UC so that I might benefit from their experiences, and to accept this diagnosis. I am getting there. I have a very supportive family and great friends who are so helpful.
I am eager to participate in this forum. I hope that I can share and be helpful while benefiting from all that you have to share.
Thanks for reading my story. I am sure it isn't too unusual.
Nice to meet you!http://www.healingwell.com/community/emoticons/tongue.gif
1996 diagnosed proctitis (during pregnancy, just months after I quit smoking)
Mar 3, 2009 diagnosed ulcerative colitis - it got my entire colon - severe
Fighting my first major flare up of UC (but I think my first UC flare up was at the end of 2006, 2 months after I quit smoking again)
60 mg prednisone (started at 30 but was doubled immediately) Mar 5/09
salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09 after second colonoscopy showed not enough progress ( previously managed proctitis with same stuff as suppository and then enema in 06)