r/Osteomyelitis

​

Also posted in r/askdocs

Age:40

Sex: female

Duration of complaint: 4+ years

Location: Florida

I was diagnosed with aggressive colorectal cancer about 5 years ago. I was thrown into radiation and chemo within 2 weeks. About 9 months later I couldn't use the bathroom. A GI told me to take a bunch of stool softeners and miralax. I ended up with a rectovaginal fistula. Basically I had a huge blockage and all the meds just gave me the runs and that found a way around the blockage by ripping through. I was given a colostomy (supposed 3 months) to allow the fistula to heal. Then the ostomy detached nearly killing me and I became septic and had another ostomy revision and became totally bedridden after the Staples in my stomach popped apart and the infection was so bad.

After 6 weeks in the hospital I went home still unable to walk with wound care nursing to pack the wound daily. I finally started walking and broke my leg (pathological break from weakness). Around this time I was having severe tailbone pain. It went on for a while getting worse and worse. Mind you I never really had a surgeon or specialists besides my oncologist because everything happened so fast and the surgeon who did the ostomy let me almost die even though he saw the ostomy and said the black tissue would "slough off". I talked to the oncologist and a colorectal surgeon who said the pain was radiation damage I would have to live with. Over the next 2 years I would be in excruciating pain to the point of just crying and living on ice packs and trying heating pads and anything. Finally I get a CT scan. It reads saying "phlegmonous tissue in the sacral region" and my doctor's office called saying the CT was fine. Still unable to walk and in debilitating pain on and off for weeks at a time. Then I feel bubbling under my skin in the back around my tailbone and butt. I tell the doctor who thinks I'm crazy. Then a wound opened leaking out blood and infection which I got checked immediately at a walk in clinic and it tested for ecoli and streptococcus. I finally got back into the doctor and explained about the leaking fluid and that it was definitely not a pilonidal cyst and he reread the CT scan and said his office was totally wrong for saying the CT scan was ok and I needed another one immediately. Over this time the pain is bad but not near as bad since that stuff started leaking out. And I mean a lot of stuff all day. I can even push and get air to come out. Now it's showing osteomyelitis on the new CT scan. I have been to an infectious disease doctor, 2 surgeons and no one will help me. I been waiting 3 months to get into a new colorectal surgeon with hopes they can help but everyone I get referred to.. even gynecologists won't help or treat me due to damage and scar tissue. How do I find help and who do I even see. Every doctor is months of waiting on an appointment while this just eats away at my body. The infectious disease doctor basically told me the supply of antibiotics was pointless because it was only 10 days that I got from my doctor. I was told by one of the surgeons I saw they will likely have to go in and clean it out. But who??