In reconnecting with friends and family over the past few months and especially the Thanksgiving holiday, I realized that all I did to share about my health was post on social media once or twice. I had a few people ask, “Oh yeah, you were sick. Whatever happened with that?” I’ve mentioned it here and there but not laid it all out there. This is partly because it’s not entirely necessary. My close friends know what happened and the whole deal so it doesn’t benefit me all that much to share any more than I have. I’ve noticed the annoying tendency to overshare when I’m getting to know someone though. Health or something related will come up in conversation and I’ll hear myself going into way too much detail. It’s like I’m sliding down a muddy riverbank. I want to stop but I can’t figure out how so I just keep sliding. How’s that for an analogy? I walk away sure they think I’m crazy, wishing I could take it back. Why would anyone discuss their guts in the first few conversations with someone? I hope I’ve gotten that in check!
In the last month or so, I’ve been trying to educate myself on auto-immunity and diet. I’ve found myself interested in personal stories when a writer shares their background when I’m reading their blog or perusing a new cookbook. I imagine it’s a natural thing to look for similarities and differences in stories when it comes to something so broad-reaching and unknown as this whole auto-immune thing.
So here it is.
After a very stressful fall and completely hectic holiday season, we started the Advocare 24-Day Challenge in January. We were eating super-clean. It felt good but maybe not stellar. I’d had intermittent stomach cramps for a few years that had returned after a stomach bug over Thanksgiving. These were holding stable or maybe getting a little worse. My stomach would cramp and burn for just a minute, usually in the afternoon. Looking back, I almost always felt like total crap before and after; lethargic and irritable. We went on a cruise at the end of January. The pain stopped me in my tracks more than once but would still subside quickly. I wasn’t having any other notable gastrointestinal symptoms that would have been clues to something being wrong other than heartburn. By the time we landed in Chicago & drove home, I was pretty sure I had a urinary tract infection. My belly was tender and I felt feverish. The next few weeks were a blur of urgent care visits, one primary care visit, round-the-clock ibuprofen for pain and elevated temperature. I complained to friends more than I ever have complained about anything in my life. I knew something was wrong. I prepared for Bradyn and Lulu’s birthdays early as best I could thinking I might have to have surgery for something like gallbladder or appendix.
I went to the ER on February 12. I was not in “enough pain” for a CT scan & was sent home. I went back to the ER the next morning, dropped off by my friend Andy and met by my friend Hilary. These two fielded more texts about my malaise than you can even imagine leading up to this point. Hilary is a physician and told me we weren’t leaving without a CT, which I was promptly offered on this visit. The diagnosis of Crohn’s Disease with bowel micro-perforation and abscesses was immediately rendered and I was admitted for IV antibiotics to treat the abscessed infection. The Crohn’s diagnosis hit hard but was also a relief. It was better than a shoulder-shrug and referral back to primary care. It also wasn’t a huge surprise after a CT 8 years earlier for what I thought was food poisoning. We had it read by a surgeon who said, “This probably wasn’t food poisoning. Do you have Crohn’s? No? Well, don’t be surprised if you do end up with it down the line.” I’d filed that under “Don’t worry about it until you have to.” even through years of ineffective treatment for what I hoped was heartburn.
The hospital stay was short and I felt much better after the first night. They started me on Pentasa which is pronounced “pent-ass-uh”. It’s the same drug as Asacol, pronounced “ass-uh-call”. Oh to be in the board room when they’re suggesting and approving these drug names. Pentasa is a gut anti-inflammatory which isn’t usually effective for Crohn’s but my dear doctor, Dr. Oh (lovingly referred to as Frit-Oh because I swear I smelled Fritos on his breath when he first visited me) wanted to be doing something to prevent further inflammation. I was also started on steroids which immediately brought on a crazy that didn’t lift for months.
Following discharge, I was started on Imuran which is a pill, kind of a mini-chemotherapy type of treatment designed to scare your immune system into a corner to stop it from attacking your guts. A follow-up CT revealed continued intestinal inflammation and persistent abscesses requiring heavy antibiotic treatment. Dr. Oh said, “Not even one drink on this Flagyl. It will make you violently ill. It is like the Antabuse they give alcoholics.” Andy and I thought that called for going out for a drink that night before starting them. Something or another happened to foil this plan so I took the first dose that afternoon. Now I’m not even kidding you a little bit when I tell you that Brian texted me TWO HOURS LATER to say, “Change of plans. Moving to Omaha in June.” For the next 25-ish days, I had every ridiculous side effect possible from those antibiotics in addition to the steroid crazy. Add in a sudden move and new illness and the term “shitstorm” doesn’t even come close.
My friends that had rallied around me were now carrying me through each day. I don’t think I had a clear thought until some time in the summer. I had another CT that showed a bowel to appendix fistula & awarded me the bump up from Imuran to Humira. Humira is a biologic drug which means it is derived from human antibodies which try to turn off the part of the immune system causing the inflammation. This is a sloppy explanation of biologics. They’re fairly new. There’s not a lot of long-term research on them and they’re crazy-ass expensive. I had decent days and kind of awful days in those spring months. I’d feel okay and then suddenly feel like the flu was coming on with chills and aches. The amount of time I spent in bed should have been alarming but everything was so chaotic, we just went with it. I didn’t know what caused those days but now I know I’d simply overdone it physically, be it trying a yoga class or putzing around the house pretending to get ready for the move.
We moved in June. To say I handled it gracefully…well, that couldn’t be further from the truth. I was awkward and inward until the last night when I cried a lot and drank even more, ending the night by up-chucking on my friend Jill’s carpet. That’s okay though, they were having it replaced the next week. My friends that had carried me through the last few months had to literally carry me to bed. I know, it’s a fine how-do-ya-do for supporting me through the roughest season of life. June and July were pretty bad. I was learning to accept that Crohn’s can really wreck a person. I stayed in bed until 9 or 10am, would have an active hour or two in the afternoon and be miserable again at night. I was between doctors and honestly, too brain-fogged to advocate for myself. I took my kids to the pool a grand total of ONE time and the awesome Omaha Zoo twice.
August was a little better. I was less miserable, the kids started school, and I got in with my new doctor. She spent an hour with me asking questions and getting to know me. She noted my long-term antibiotic use for recurrent UTI’s when I was preschool age as well as iritis in middle school as early contributors and signs of auto-immune predisposition. By mid-September, I was feeling great aside from some joint pain, mostly in my wrists and hands. I was painting Ellie’s room, walking with the dog a lot and even jogged just a little (running is out for good, that’s for sure). I was looking forward to a weekend in Chicago with my Indiana friends. I was tracking calories with an app on my phone & had 100 calories left one night so I popped a handful of trail mix before bed. I was in pain less than an hour later and in the ER the next night with what was probably a little obstruction, possibly in my handy little fistula. My GI doc doubled the Humira and effectively dodged my request to reconsider this high dose after six months or so. “After a clear colonoscopy, maybe.” she said.
Since that flare in September, I’ve done a much better job of pacing myself. I take any twinge or pain as a sign to not just slow down but to stop. It’s incredibly defeating to feel like doing something and to feel good while doing it, whether it’s eating a few apple slices or working out, just to pay for it the next day in the way of feeling cruddy. I’m usually just guessing as to what caused the twinge or pain. So I just stop. I stop and let my body catch back up for a day or so. I accepted the diagnosis and I accepted the medicine much easier than I’m accepting being eternally limited. I’ll get there.