I apparently have Crohn’s disease. I’m still not 100% comfortable saying that out loud. It’s a hard definition to add to who I am and what I’ve been living with. I continue to feel skeptical, even as more and more tests come back with results that are consistent with the diagnosis (but not all of them). I don’t know if I’m resistant to the label because of the immensity of what this disease represents, or because I still feel like this isn’t the perfect answer to the complex puzzle of what is wrong with me. Or just because I’m scared.
It’s not a fun story to tell. As honest and straightforward as I usually am with my health, I don’t like to talk about all my difficult days or how bad I feel or how long this has been going on unless it has a severe impact on other people. Like when I have to cancel trips or events because I can’t leave a bathroom. Or when I can’t focus enough to make dinner because my brain’s gone all foggy and everything hurts. It’s not as though we don’t talk about poop in this family. I have two small kiddos – 6 and 11 and one small bathroom to share. We’ve got poop jokes galore. We teach good food habits and good pooping habits. Hydrate! Fiber! Veggies & fruit for all! But still, digestive experiences are not really the best dinner conversation.
I’ve been reading a lot of Crohn’s blogs and noticing how much people censor the nitty gritty details of this disease. And for good reason – it’s gross. I mean, really gross. It takes a heck of a lot to gross me out – I’ve raised two boys, cared for a husband with a spinal injury. I don’t get squicked out easily. But I just can’t bring myself to chronicle this process online, or even talk about it much in person. At first, it was because I just wanted it to all go away. To let my body heal and be done with this awfulness. But then, I didn’t get better. And months and months passed, I didn’t get better. And now, I just don’t want to talk about it because it’s such a saga of torture and difficulty. And perhaps because I don’t want to think about what happens if it gets worse.
It was 2.5 years ago when things really kicked off in a bad way and I started wondering what was wrong with me. Was it my hormones? My body had a horrific experience with an IUD that triggered much of these woes. Was it my diet? I had been a pretty diligent ovo-pescitarian who didn’t drink (no dairy, occasional sushi & eggs, and a whole lot of veggies and beans). Was it a virus? A parasite? Cancer? I saw a doctor who misdiagnosed me and who I had a hard time trusting. My insurance rejected a medication that was extremely expensive. I got scared to take another drug because of the horrible side effects. I worried, and waited, which was absolutely the wrong thing to do, and of course, I got worse.
And finally, 2 days after the election in November 2016, I had colorectal surgery with a surgeon who was fantastic, but frankly shocked that I was even conscious in her office due the pain I was in. Surgery should have fixed me, but it didn’t. I didn’t heal the way I was supposed to. And after more than a year of being in pain and infected and barely functional (although better than I had been), my poor surgeon scratched her head and said, I think you have Crohn’s. Go see a Gastroenterologist.
And here’s where self-sabotaging can be a really dangerous thing. I saw the new doc and said, I’m fine, totally fine. Like just some weird things happening that are no big deal. I can’t possibly have Crohn’s. I’m not in the hospital, I’m not dying, I’m not in devastating months long stretches of pain. I’m not having trouble absorbing nutrients – like, look at these love handles, man. I mean, no one knows each other’s “normal.” But my normal is my normal, and I’m sure that this is no big deal. It’s probably just that my immune system is super stressed by getting sick from little kid germs all the time, and my tissue is sensitive and just needs a jump start to keep healing. And probably my hormones are all wonky and maybe I have endometriosis and not Crohn’s. Right? RIGHT? Please don’t make me do a colonoscopy – I can’t handle that pain right now. Let’s just give it time.
And then I was out of time. At the beach this summer, I got violently sick. Who knows what triggered it, maybe food poisoning, but after 5 days of brutal illness, running to the bathroom every 2-10 minutes for 5 FUCKING DAYS, I ended up in the ER with severe dehydration. My poor amazing family had to get me home from the beach with the help of a lovely urgent care doc and major medications to keep me barely stable enough to get in a car for two 4 hour stretches over 2 days without shitting myself. Nice image right? Now imagine that times a thousand and that’s why I don’t want to talk about the past few years.
At the hospital, a CT scan showed severe inflammation in my intestines. I stabilized with medications, slightly, but I was still weak and unable to eat much for days. I’d lost a huge amount of weight and I was not holding things together very well. I swallowed my pride and saw the gastroenterologist again and fessed up to how bad things had really been and had become. And only then did we start putting together a broader picture of my health and how my history might inform a diagnosis.
A few months before my wedding, in NYC, struggling to make ends meet, sick with reflux and stress and PTSD from 9/11 and anxiety that wound me up so much that it took me years to separate it from who I was as a human being, I got very sick. My digestive system went into complete rebellion, and I remember that I couldn’t eat more than just chicken and noodles and rice for months without getting violently sick. After Patrick’s accident, the same thing. That time, I couldn’t stomach anything. I couldn’t bring myself to eat anything other than cashew carrot ginger soup for several months – my nausea and diarrhea was so all consuming. But I didn’t have the luxury of focusing on me. I had people counting on me to keep everything together. I just had to get through it and I’d be fine. Right?
Switching my birth control several times over the years wreaked havoc on my digestive system each time. Eating out at unfamiliar restaurants or other people’s houses did too, sometimes. Antibiotics were the devil. Same with stress, and getting a cold or upper respiratory virus. I frequently joked how I was the only one who seemed to pick up the stomach bugs in the house. But were those viral? Or a Crohn’s flare? Will we ever know what was really going on? Is this all coincidental and none of the puzzle pieces really fit together?
Over the last few months, I’ve suffered the indignities of a colonoscopy, MRI enterography, fecal samples, CT scans, colorectal exams, and so much bloodwork that bruises obscure my veins. The results are weird. 95% of the results look like Crohn’s. But some don’t. And I understand that this is a common issue and that Crohn’s can be insidious and difficult to diagnose. But we have to do something, because I’m not getting much better on my own.
I started high-dose anti-inflammatories last week after my MRI showed continued inflammation in my terminal ileum. Of course, the medication is not the one the doctor wanted me on because my insurance refused to pay for the drug he wanted for me. Ask me how many times I’ve had to call the insurance company, the pharmacy and the doctor this month, I dare you. If this medication works, I will stay on it for the rest of my life and hope that I don’t have additional flare ups that will need more extensive intervention, which isn’t realistic. Crohn’s flare ups are inevitable. I seem to be handling the medication well so far with no side effects, but also not much improvement yet. If it doesn’t work, I have to start talking about taking immunosuppressant biologics to prevent my immune system from destroying my intestines. They are…not a great choice, but they may be the only thing that can prevent me from having surgery to remove parts of my colon or having to live on a liquid diet for months or being hospitalized for severe toxic megacolon or strictures. Do yourself a favor and don’t google those.
The statistics for Crohn’s patients are better than they were a decade ago. There’s more research, more drug options, more low-impact procedures that can help. But the hands down truth is that doctors really don’t know how to make you better. There is no way to ever be rid of Crohn’s. And most patients will be hospitalized, need surgery, and live with levels of pain and discomfort and grossness that are not compatible with a generally high-quality of life at some points in their lives. Some more than others.
I’m kind of okay, and kind of not. I’m at this cusp of accepting this disease, still doubting if it’s true, but feeling the effects of inconsistent soreness, pain, distress, brain fog, fatigue and stress frequently. I have some great days too, which is nice to hold on to when I’m feeling down. I’m logging everything, keeping my diet extremely low reside and hoping that the meds start to work soon. Oh god, the diet is just brutal for a former somewhat-vegan. I can eat white rice, eggs, bananas, almond milk, steel cut oats, peanut butter, tuna and salmon. Anything else tends to mess up my insides quite a bit. I’ve been watching the Great British Baking show as a stress-management technique – it’s so soothing and peaceful and positive. But I have desperate cravings for cakes and sweets that make me want to cry. Patrick read the biography for one of the contestants who now travels and gives baking master classes, but cannot eat any of his food because of severe ulcerative colitis. I selfishly felt marginally better hearing that.
The summer hasn’t been a complete wash. I managed to supervise an entire construction project of our new screen porch this summer in between everything else going on in our lives, so I know that even if I need to adjust my expectations about health and happiness in the future, I can still be me and still get things done. I just might need to do them on a schedule that is not under my control.
I have worries and fears about it all. I’ve read more than a dozen books and a large amount of research studies to help me get my head around what’s happening and what to expect. I have a constant awareness, always, about whether I’m going to feel good today, or take a hit tomorrow, or whether I’ll be able to do school pickup, or if I’ll have to skip a meeting. It’s the worst, knowing that I can’t count on my own body when I need it. That people can’t count on me either. I’m not the me that I want to be, but I’m the me that I’ve got right now and I’ll do the best with it that I can.