Hello,
I had my first stoma/ostomy surgery in 6/2018 at the Cleveland Clinic in FL. My first week was great. Pain subsided and I felt great. Starting the second week, my pain started to increase and white plaque started to appear in patches on my stoma. I went back to CC and they looked at (barely) my stoma and said nothing was wrong. I took pictures every day to document the growing necrotic tissue taking over my stoma. I kept calling them for more pain meds as my pain became unbearable. I started sending my pictures to my surgeon bc she couldn't understand why my pain was so bad. Long story short, I had emergency surgery at 5 weeks post op! She cut off all the necrotic tissue and left me with a flat/flush stoma. Obviously, then I fought constant leakage and every product out there. The flush stoma did not "die on the vine" . I decided to find another surgeon close to my home to either reverse it ( which I can't do bc of fecal incontinence from anal cancer in 4/2014) or pull more colon out to make a larger stoma. My surgery was 2 weeks ago. Just like before, my pain is increasing and the plaque patches have started. I went back to Tampa General and I showed them all my pictures from the first surgery and the current ones and she really examined me. SHE HAD NO IDEA what was causing this. She ( the PA ) consulted with my surgeon and both said they haven't seen anything like this for 12 years! and that guy lived with it! ????? They told me to come back in a MONTH!!!!!!
So, I do have something called Limited Scleroderma or CREST Syndrome which is a Connective Tissue disease. I personally think THIS is the reason!!!! I told both surgeons this and they just glazed over and said nothing!!!!! I'm beyond FRUSTRATED. The only thing I can think of is to go to a Rheumatologist (they handle CREST.)
If ANYONE has any knowledge of my situation I would be so grateful!
