Grit with Glitter

The last post on this blog was in early January as I was heading to The Mayo Clinic in Phoenix (or My Disneyland,) feeling hopeful and ready to finally get some answers. Then I gave a couple of video updates about being misdiagnosed and that I was headed into surgery. And then I sort of stopped communicating. So just to be clear- I did not die or anything, my closet just collapsed.

See, I have an imaginary closet in my mind. When a thing happens that I do not have the capacity to deal with at that moment, I take the thing and I smush it down in a little box and then I duct-tape that box and shove it onto whatever space I can find on the shelves of the closet. And then I slam the door shut and push a chair under the doorknob. This is a well-developed coping mechanism that has helped me to survive some very difficult times in my life.

Sometimes people marvel at how I am able to handle so much. They call me brave or strong and ask me how I manage to still show up in life and work with a positive outlook and a smile on my face. And it is because I have learned to see blessings wherever I can… and because of that closet.

The problem is that there is only so much room in the closet so when I have the emotional space, I “unpack” and process the things in those boxes (usually with my Therapist.) On the other hand, if I keep trying to squeeze boxes in, eventually the shelves break, and everything comes toppling down on me. And recently I had a massive closet fail, which is why you may not have heard from me in a bit.

Like everything else about me, my version of anxiety and depression is…not typical. If you have seen me in the last few weeks you would probably think I am doing great. You might have even said something about how good I look and been met with a joking, “Well, it’s called invisible illness for a reason!”

But the truth is that I have been struggling without my closet as a protective barrier and my emotions are so close to the surface that talking about any of this is hard. It is still raw, but I am finally in a space where I can at least write about it.

I could (and may at some point) write an entire post about some of these things, but today I can share the bullet point version of my recent medical saga:

• The Mayo Clinic is, in fact, better than I could have imagined. I have received medical care that is integrated across departments, efficient, and without exception every medical professional I have interacted with there has treated me with kindness, respect, and like a person instead of a disease.
• It turns out that I was mis-diagnosed and did not in fact have HS, which is good.
• The surgery in January was described by my amazing surgeon as having the goal of getting me out of pain by draining an abscess and putting in a seton (which keeps the fistula open and prevents a new abscess.) and though it took a month of healing, he succeeded in his goal and my pain is about 95% improved. I don’t even need to carry around a cushion to sit on anymore!
• February at Mayo was spent on trying to figure out the actual diagnosis now that HS was ruled out.
• That was also successful, but the diagnosis sucks. In fact, when my surgeon told me I loudly exclaimed “Son of a Bitch!” I then apologized and he kindly said my reaction was totally appropriate for the news. (See why he’s my favorite?!)

So, what is the diagnosis? Chron’s Disease. While this is relatively common and very treatable for many people who have mild and moderate forms of the disease- I am once again a “unique” and complicated case because:

• I was tested for Chron’s many times before having my colon removed in 2014 because they do not do a j-pouch surgery if you have Chron’s as it can come back in the pouch.
• Current theory is that I did in fact have Ulcerative Colitis which was cured when my colon was removed. This whole episode that started in May of 2023 is considered the first flare of a NEW Chron’s case.
• In keeping with my tradition of being medically unique, I jumped right over mild and moderate as the type of fistula I have developed is considered a severe form of the disease.
• We have to treat this aggressively, because there is a great danger that the Chron’s could spread to other parts of my digestive system, and if it goes into my pouch I will almost certainly loose the pouch and need a permanent ostomy- which I REALLY don’t want.
• I have a fistula that is currently just a few cm away from my pouch so even if I get the Chron’s into remission the surgery to fix the fistula would be very complicated and potentially compromise the pouch, so that seton drain thing could become permanent- which was extremely hard to hear. Although I would choose that over an ostomy any day.
• Because many of the drugs they use to treat Chron’s are the same ones that I tried for my UC, the doctors have to be a bit creative. The first choice to treat this type of Chron’s with a peri-anal fistula would be Remicade, but that is the medication that actually made my UC worse and was the final straw before we made the decision to get my colon removed.

So this morning we started my treatment. I had an infusion of a class of drugs called biologics which are strong immunosuppressants designed to help with auto-immune diseases like Chron’s.

I wasn’t sure what today would be like, but since I got my infusion at Mayo, I had a fancy little private infusion room so I got to nap during treatment. I am still tired, but other than that feeling pretty good.

The current plan is to get these infusions every 4 weeks for about 4 months and then evaluate if the treatment is working. I am welcoming all types of prayers, blessings, intentions and good vibes that this will work and the side effects will be minimal.

And as I mentioned, I am good at finding the blessings in the tough things. One of those being that I got to come out to Phoenix with the kids for spring break and we have had a wonderful time in between my Mayo appointments. I feel like finding the treatment I need in the place where my husband is currently working, that is also unbelievably beautiful is my own little miracle!

Thanks for all the love and support, now that I have posted the long update, I will start sharing the videos and pictures of the fun stuff!