My name is Lori W. I joined this site about 19 years ago when I first had surgery. I have not been a regular visitor, because I have not had any significant issues regarding my surgery until now. So, I thought I would reach out to see if anyone has experienced what I am going through now.
I am 54 years old. I was diagnosed with UC in 1997 and treated with medication for 3 years. I had a total colectomy with a J-Pouch in March 2000. I have had a few bouts of pouchitis over the years and one anal abscess, the developed a fissure, so I had corrective surgery for that. I had one hernia on my scar in 2012 and surgery corrected that. Otherwise, I have been relatively healthy.
Since August, I have been off and on with issues of pouchitis. I have been on Cipro 500 mg 2x a day and Flagyl 500 mg 3x a day 3 times now. I had a CT scan about a month ago that was clear...no evidence of colitis, crohns or cancer. Symptoms continued when I stopped the medication last week. I had a flexsig in the office yesterday and the doctor took multiple biopsies, to see what is going on. Basically, what he is saying, is that it's possible I have now developed either crohns, colitis or indeterminant colitis in my small intestines, above my pouch. He said my pouch was relatively clear. There was a small amount of inflammation still at the bottom of it. But he is most concerned over the inflammation in the small intestines, above my pouch.
I guess I am really just confused now. I thought that a diagnosis 20 years ago of UC and the removal of my colon "cured" that disease. I didn't know that it could come back in other forms in my small intestines or that I could suddenly get crohns now or anything else. I'm trying to remain positive and not jump to any conclusions at this time because I don't have definitive diagnosis yet. He said it would be a week to 10 days for the biopsy results. But when he started talking about going back to a gastro for treatment of UC or crohns again, my heart just fell to the floor. I have been so healthy for so long...I guess I just didn't know that this could happen. And quite frankly, at 54, I'm not sure I have the stamina to fight this ugly disease that I had 20 years ago. So, I'm feeling a little out of sorts and could use any information/advice/encouragement that anyone has to offer.
Sorry this is so long. I tried to keep it brief, but was unsuccessful.