Bum Briefing #17

Difficile, I never thought I’d be learning some Latin during this whole ordeal but here I am. Difficile is latin for difficult and it really sums up how going through cancer treatment is. And it’s the things people can’t prepare you for because everyone’s journey is different. I got a lot of advice from cancer survivors when I started this journey which really helped me get through the typical parts. The parts I wasn’t prepared for are unique to me, like Clostridioides difficile or more commonly known c. Diff. Shortly after my last bum briefing I was having problems getting back to normal. Finally, they ordered a c.diff test so I went to the UW clinic to get it done. The lab was quite busy that day and I appreciate all our healthcare staff does, this day it was obvious they were over booked or under staffed. Now when you have c.diff in it’s full force, there is no need to go home for the stool sample. I don’t think they were used to this and were going through the motions of a blood draw. The nice lady came and got me with the kit then we started walking to the blood draw room. We get to this room and I really got to go, mind you I’ve still not regained any sense of dignity so I looked at her and said “You want me to shit right here?”. She looked at me bewildered and then looked down at the papers realizing that she didn’t have to draw blood. I took my test and four hours later I got it back, positive for Clostridioides difficile. I got my antibiotics and that was a two week long regiment. I finished it and things went well, I felt like I was starting to get back to normal. 

After this I was starting to feel like I was getting a sense of what a new normal was going to look like. This lasted a few weeks before towards the end of the week I could start seeing my c.diff symptoms return. I didn’t want to wait for it to get worse so I went to the local urgent care on a Saturday, the doctor working was willing to prescribe me an antibiotic without testing this time. When you get a recurrence this close they give you the same antibiotic but this time it was a 10-week long regiment. I’m no stranger to pills at this point so it didn’t bother me and got me on the road back to, hopefully, a semblance of normal. Throughout the antibiotic regime I was trying to get back to a normal life. This part of the process is very difficult to deal with because progress is very slow and you can’t do a lot of the things you used to be able to. I made it all the way through my antibiotics but a week or two after… symptoms returned. 

Now this time I got the full brunt of the failures of our American healthcare system. My UW doctor ordered another test, my GHC insurance forced me to go to their clinic to get this test. I went to get it done and the nurse was very adamant about the consistency of the sample they needed. She even highlighted and red underlined it on the instructions. It would get denied and they wouldn’t test it unless it was the proper consistency. Well you know what that means? I had to take the test home and wait for it to get worse before they’d even do the test. I had to wait quite a while for the proper sample to present itself, even though I knew what it was being this was the fourth time having it. Now when I got my test done at the UW by that nice lady who I thought wanted me to defecate in the blood draw room, it took roughly 4 hours to get my results. This time it took just shy of 48 hours to get the results. Mind you it’s now gotten worse and the symptoms are quickly accelerating into extremely uncomfortable territory. My doctor prescribed a different antibiotic this time, one that I can only imagine is made with unicorn tears and powdered elven fingernails because it was $5300 for 20 pills before insurance. This, of course, meant it was immediately denied, requiring multiple forms of paperwork. This was on a Thursday afternoon and the pharmacist said I should check back Monday night at the earliest to see if it was approved. I was looking at possibly some really bad symptoms by the time I even started antibiotics. In my state of despair I decided to rattle every tree at work to see if I could get some help with this situation. I believe our head of HR was able to talk to the right person because I was able to get it approved the next day, the only caveat was I had to go to a different store that had stock. 

This enchanted antibiotic ended up being quite a let down. Not only did it not immediately cure my c.diff by the end of the course I didn’t even feel like the symptoms had completely gone away. Well, when you have this many rounds of c.diff they refer you to infectious diseases. After meeting with the doctor we realized why they do this step first because the next level treatments can be overwhelming for someone whose only ailment has been c.diff. The “tried and true” next step is called a FMT, which historically has stood for “Fecal Microbiome Transplant”. We researched this and were fully prepared for them to bring it up. Let’s face it, I’ve had so many procedures up my butt at this point, what’s one more? We were pleasantly surprised that the UW uses a newer method with fewer risks. Now they call it “Fecal Microbiome Therapy”. They have invented a pill that makes it through your stomach and small intestines without dissolving but opens up in your colon. I’m not sure what kind of sorcery this is but I’m going to ask more questions about how it works later. I have to take these pills under supervision as they are custom made and refrigerated, this apparently is the only way the FDA approved the treatment. I now understand why they refer you to infectious diseases. If you jump straight from your primary care doctor to going to the GI clinic to take what’s effectively 30 poop pills under supervision, that might seem a bit much for some. For me, don’t threaten me with a good time. Sounds like I get to go to the GI clinic and keep my pants on for once.