Having an undiagnosed chronic illness feels a little like playing Sherlock Holmes with your health. Months and years of symptoms and weirdness and issues pile up and you often don’t know what is going on until you finally get a diagnosis and everything just clicks. Hopefully. Sometimes it doesn’t, especially if you have concurrent or complicating issues or “co-morbidities” – god that’s a terrible word to hear. But for me, most of everything that’s been significantly affecting my quality of life over the past 3 years has been tied to Crohn’s. I just didn’t know it until this summer.

There are a huge number of strange side effects of Crohn’s that don’t necessarily seem like they’d be connected to a single disease. But because it’s an autoimmune condition, the body goes haywire in odd ways. Brain fog, fatigue, migraines, mouth ulcers, osteoporosis & bone loss, vitamin deficiencies, recurrent low level fevers, and very weird eye issues. And those are on top of the typical digestive issues like diarrhea, constipation, rectal pain, gas, bloating, fissures and fistulas. Then add to that anemia from internal bleeding, weight loss, dehydration, severe abdominal pain, nausea and vomiting. We really hit the lottery with this disease.

I remember having a complete breakdown on my birthday last year, turning 38 and feeling like I had not been able to get up out of my chair in the living room and out from under the heat pad for months and months. I would spend entire days after school drop off just sitting in that rocking chair and feeling like a complete failure at life. I had no energy to do anything to care for myself, or the kids, or cook dinner, or read a book, or focus my energy on anything other than just existing and trying my best to stay awake. Things like writing, or paying bills or doing anything more complex than opening a letter was challenging on my best days. I put a good face on it, but I knew inside that this feeling was not ME. I thought maybe that I was depressed (which was unusual for me – I tend to swing closer to the anxiety side of mental issues). Maybe my energy was being sapped by the chronic infection I was still battling (2.5 years later) from my fistula surgery. Everyone said give it time. Your body is still healing. You’re just tired after years of raising kids and caring for a husband with a spinal injury. Rest.

That spring I asked a friend who is a wonderful photographer if she could take author’s headshots for me, but that we’d have to wait until my strange case of pink eye cleared up. The boys had a short case of viral pink eye with an upper respiratory infection, and I caught it too. But it didn’t clear up. My sclera remained red and painful for weeks on and off through the beginning of the summer. The urgent care doctor said it’s probably just allergies since I was spreading leaf mulch and working outside in the yard to try to get my energy back up. She prescribed allergy eye drops. Spoiler alert: it wasn’t allergies. It was undiagnosed episcleritis. The drops didn’t help, and it came and went for months with discomfort. I wasn’t able to wear my contact for weeks at a time. I’m just lucky I didn’t get uveitis, which would have been severely painful and dangerous leading to permanent eye damage.

I’ve recently had issues again with my eyes, but thankfully it’s not episcleritis this time. My eyes have become inflamed enough that the lacrimal ducts and the Meibomian glands (they secrete an oil that prevents tears from evaporating too quickly in your eyes) became blocked and my eyes were seriously dry. It was uncomfortable enough that I wasn’t able to wear my contacts for about a month and a half. My eye doctor started me on Restasis eye drops and recommended them for 6 months. They can sometimes take 2 months to work, if they work at all – there is some significant question about the clinical efficacy of the drug. But I have found that my eyes have not been as dry and I can tolerate contacts better after about 2 weeks of the Restasis. Whether that’s because the Remicade is decreasing my systemic inflammation, or the Restasis is working, I’m not sure.

After my fistula surgery, back when I was still undiagnosed, I was on a mostly vegan diet. I was very concerned about constipation with an open healing rectal wound, and trying to keep my stool as soft as possible. So I stopped taking a multivitamin because it contained iron which clogs me up. I started taking Colace and ate soft foods and smoothies and soups. I started feeling very weird gradually, which was honestly hard to differentiate from how terrible I was feeling after the surgery (that’s a whole other blog post!). The tips of all of my fingers started to feel numb and tingly. My tongue started getting thick and it was hard to swallow. It slowly turned red and sore, and started cracking along the top. Food tasted really weird. I thought maybe it was another case of oral thrush (I’d had one with the Flagyl I was prescribed after my surgery), but my tongue wasn’t white. My heart rate was through the roof and I was tired all the time, but who knows if that was related with everything else that was going on in my system. I put two and two together after going into my primary care doctor who asked me about my vitamins. Oh, shoot. B12. I had low B12. Really, really low. Within a few days of starting B12 supplements and a multivitamin again, I was feeling much better and the symptoms were gone within a week. And darn it if this shouldn’t have been yet another indication for someone to figure out that I needed to be screened for Crohn’s. I still take B12, because of absorption issues during my flare. I love the sublingual B12 from Solgar because it doesn’t have any cornstarch or sucralose or artificial sugars or flavors. And the citrus flavor is bright enough that I can tolerate taking my prednisone tablets with it (those little white pills taste horrific by themselves!).

I understand that Crohn’s patients can also experience really terrible dermatological complications, like erythema nodosum, large sore red bumps usually on the extremities, and pyoderma gangrenosum, large terrible ulcers of the skin. The Crohn’s and Colitis Foundation has a nice summary of these and other skin complications. IBD patients also have an elevated risk of psoriasis, and it can also be caused by some of the biologic medications like Remicade. Biologics also raise the risk of small cell skin cancers, so doctors often recommend you add seeing a Dermatologist every 6-12 months to your annual health to-do list. There’s a whole host of other biologic induced complications and side effects too, including anaphylaxis from infusion reactions, lupus and other major issues. Serious drugs for a serious illness, but for me, the risk is worth it to avoid other major Crohn’s complications like intestinal adhesions turning into internal fistulas, or strictures, or more peri-anal fissures and fistulas. Achieving remission and avoiding surgery is the name of the game.

Shortly after I started the Remicade, I woke up one morning and felt like someone had peeled back a layer of cotton wool from my brain. I was thinking clearly, quicker and more intensely. I could focus on things for longer. I had more patience and humor when parenting. I felt more like me. It was enough to make me cry from relief.

I tell people at my Crohn’s and Colitis support group that we often don’t know how to value what our “normal” is, especially when we’re just used to putting our heads down and dealing with discomfort and general misery from our day to day experiences. What is my normal in comparison with yours? When you live with your normal for so long, it can be like a frog in a pot of gradually boiling water, and you may not be able to realize how bad your normal has gotten and how much help you really need. When the Remicade kicked in, even when the Prednisone kicked in, I suddenly realized how bad things had gotten for me. But I’m on my way to healing now, and remission hopefully soon, and I’m seeing the light at the end of the tunnel. And it feels great.