First, my story:
I am a breast cancer patient and October 3rd I had a ground-breaking liver resection to treat the spread of metastatic disease. Currently, I'm cancer-free. However, you can guess what happened as a result of my hospital stay.
Mid-November my stomach started to hurt and I thought I had a bladder infection. I started back on chemo, first one post-surgery, and I mentioned the possible infection to my oncologist, who took a culture, which came back negative. The next week I went in, I skipped chemo, I didn't feel well enough. My stomach was in pain and the nurses gave me anti nauseas and pepcid. My white count was too low and I was feeling even worse as far as stomach pain goes.
Thanksgiving I had guests over but was feeling pains till so I bought sides from Whole Foods instead of cooking. That night I became ill, and I spent the next two days in bed, unmoving. When I got a fever, I called my onc (a conversation I could barely breathe to have) and was told to go to the ER. That's when the diarrhea started.
The ER got me right in and they guessed C-Diff and did a CAT scan. The D was still intermittent but getting more and more frequent. Turns out, I was septic. My heart rate was 160, my blood pressure was 220 over 140 and I was just seriously ill. They put me in intensive care where the D became unrelenting, constant, embarrassing and horrifying. I know you don't like too much detail but they were even talking about putting a "tube" in that area, which I didn't want.
I was told I have fulminant pseudocolitis and it appeared I'd have my colon removed. I discussed this with two surgeons and didn't want it but wasn't really strong enough to say anything or argue. They said if my blood pressure dropped, that was it, they were going in and taking everything. I could only sit there and watch the monitor and hope against hope it didn't drop.
They gave me IV Flagyl, Vancomycin, and one other antibiotic (I did have a bladder infection). I started to respond after the 2nd day and they moved me to a regular ward. On the third day on the ward, they removed me from surgical service, which made me so happy - I was going to get to keep my colon!
They released me after 8 days but I was in terrible shape. I went in weighing 100 pounds; I came out weighing 118 yet hadn't eated for 11 days. I was full of IV fluid and my stomach looked like I was 9 months pregnant. I was not able to walk at all for a few days, and then for two weeks my routine was to get out of bed and sit on the couch and that was all I could do, my husband had to take time off to care for me.
Gradually, I've improved - I've been out of the hospital a month. I stopped taking vancomycin 9 days ago. I am still limited but mostly by pain, I have severe pain in my right side. I had another CAT scan on December 23rd, that showed resolving pseudomembraneous pancolitis (and NO cancer!). My weight is down to 90 pounds now which is far too thin.
I saw an infectious disease specialist who said I'd had the worst case he'd seen in 20 years of practice where somebody didn't lose their colon or their life. He wrote a report the Dificid might be an option for me if I relapse, probably to smooth the way with the insurance company.
I know there is a chance it could come back and I have vancomycin on hand with a bunch of refills thanks to my PCP.
My question is - if I relapse, will it start with diarrhea? That was my last symptom, after I was septic, not the first - so I'm wondering if a relapse would follow the same course. I already feel (again) like I have a bladder infection and again, my oncologist is checking. That may be a symptom of the c-diff though or something going odd in my gut.
How long does it take to fully recover when you've had a bad case like mine? I am hoping to go back to work in February but certainly couldn't right now. Also, my BMs are fully formed now but still have a bit of that c-diff smell - does that mean I've not completely recovered or is that normal?
I am taking Florestor and Culturelle and eating a very mild diet - yogurt, rice, very well cooked beef, saltines, no veggies. It's all I know to do but my oncologist would like me to gain ten pounds (and I'd like to too) but it's hard when you can't eat anything and everything you do eat makes you nauseated.
By the way, I was never able to register here until last night but I've been reading this forum the entire time - even in the hospital. It's been a great help even though I couldn't share my own story. I'm glad I can finally get advice.