Dealing With a Fistula Amid Major Life Changes

I haven’t posted in awhile because it’s been a very busy summer (and now fall). I moved from DC to Boston at the beginning of August. It’s something I had been thinking about doing for the past several years, and I spent a LOT of time worrying about how moving with a chronic illness would work. I spent hours obsessing over how to navigate a move and possible change of job and health insurance without delaying any Entyvio infusions. Then I found out last December that I had developed antibodies to Entyvio and stopped taking it, and then found out in May that I have a fistula and would need to start a new treatment. So of course, the thing that I spent so much time worrying about turned out to not be an issue at all, and I was faced with a whole new set of challenges in the midst of planning my move.

My last post was about having an MRI to find out if I have a fistula. It turns out that I do have a simple fistula, or tunnel between my colon and the abscess I developed last winter (for more information about fistulas, see this helpful publication from the Crohn’s and Colitis Foundation UK). My doctor in DC said that it was definitely a Crohn’s fistula caused by Entyvio failure and that I would need to start Stelara as soon as possible, assuming my insurance approved it. She said that Humira would also be an option, but Humira has a higher risk of certain side effects, such as cancer. 

I wasn’t opposed to starting Stelara, but I was a little hesitant given the timing. These discussions were happening in June, and I was moving at the beginning of August. I was worried about timing the doses of Stelara around my move. Since I would also be switching doctors, I wanted to make sure my new doctor in Boston would agree with this treatment plan. I had some appointments with gastroenterologists set up for after my move, but I ended up calling one of them, getting my appointment moved up to mid-July, and flying up to Boston mid-week just for the appointment. It was a pain, but it was worth it to get his opinion. 

He agreed with starting Stelara, but was less certain as to how this all happened. He said that anyone can develop an abscess in that area that can turn into a fistula, it’s just more common among Crohn’s patients. Given that my disease has always looked like ulcerative colitis, and I now have this one symptom more consistent with Crohn’s, did I just randomly happen to develop an abscess and fistula? Or did my disease shift into Crohn’s? Unless I start to develop more Crohn’s-related complications, there’s no way to know for sure. 

Since my abscess was still tender and oozing (gross, I know), he prescribed a course of antibiotics to kill any remaining bacteria before starting Stelara and hopefully dry it out a bit. Unfortunately the antibiotics didn’t help, so he sent me to a surgeon to see if it needed to be drained a bit more before starting the Stelara. 

The surgeon recommended doing an exam under anesthesia. If the fistula was close enough to the surface, he would do a fistulotomy, where he cuts the fistula open (turning a tunnel into a ditch) and lets it heal. If not, he would put in a seton, which is like a rubber band that goes through the fistula and helps it drain. I had the surgery last week, and he wasn’t able to do the fistulotomy so now I have a seton. I have a follow-up with the surgeon in a few weeks to see how it looks and discuss next steps, and I’m still not sure how Stelara fits in, or if I even really need Stelara if it’s possible that the fistula was just a fluke and unrelated to my disease.

In between all of these appointments with doctors and waiting to figure out my treatment, I moved! I am now settled in Boston. I also started a new job, which brings its own set of anxieties (and new health insurance).

Unfortunately, it’s been a few months full of uncertainty, and things don’t seem to be getting much clearer. Do I have ulcerative colitis or do I have Crohn’s? Should I start Stelara, and if I do will it help heal my fistula? Will I run out of sick leave in my first few months at my new job? I’m just trying to be patient and take it one step at a time.