I came here today because I have lost hope.
I was diagnosed in 2003 at 41 years old with UC. I had 5 years of bleeding, massive pain, and associated oral thrush and horrible lip ulcers. I was put on Prednisone for 5 years, gained 80lbs in the first year, despite a massive decrease in calories eaten. Since no other meds worked 2003-2008, I got the 2-step colectomy J-pouch in 2008, with the ileostomy bag for the 6 week interim. I did not leave the house and cried every day over that disgusting thing. It took another 4 years to wean off the Prednisone, which has left me high blood pressure, the impossible to lose weight gain, etc. You know the drill.
I had to give up a successful, fast track career in molecular biology. I gave up my passion of horse training and success on a national level horse show career. I can't even ride at all now and have chronic, debilitating pain every day. I rarely eat because of the ensuing pain, yet I am fat. Until my first doses of Prednisone, I never weighed more than 115 lbs in all my 42 years. Now, I'm 53 and weigh 185 no matter what.
I suffer chronic and frequently urgent diarrhea 100% of the time, frequent severe buttburn, constant lower back pain, occasional abdominal cramps and hunger pain. I get symptoms of Pouchitis often, and take Flagyl for it. Sometimes, I think Flagyl increases my feeling of uselessness and hopelessness, but I may be wrong. I'm just ending another round of it now.
I am very good at hiding the pain, and joined Christian groups and other social groups just to keep going, where I've made wonderful friends, but I can't do it anymore. I dropped out of them today because it is just too stressful (pain, weakness and fear of humiliation) to try and make it through anymore.
I am grateful to have a loving, supportive husband. However, the guilt of what I've become and how I've changed his life weighs heavy.
I have lived in a new city for a year now, and have finally made an appointment with a new Gastro. He came recommended, but I'm terrified. Gastro's have been horrible to me. One of the worst insisted on a colonoscopy during a UC flare, with no twilight. The pain was excruciating, I was trying to crawl off the table and when it was over there was so much blood in there, it looked like someone had been murdered. This happened years after advanced UC had been verified, so I don't know what his motivation was other than $?
I just needed to vent. Grieve a life lost and a new life of chronic pain, solitude and frustration. A pity part was in order, apparently. �� Thanks for reading and hopefully not judging. ♥
Deb
)...........Good luck to you, keep us posted,