My Best Friend, A New Crohnie, Tells Her Story on Caring for Crohn’s
A few months ago, my best friend Julia was diagnosed with Crohn’s disease. The diagnosis, like it is for so many people, has been difficult for her to wrap her mind around. I remember how hard it was for Dan when he was first diagnosed- understanding the disease, getting used to living with it, finding trigger foods, getting on the right medications, having tons of procedures, etc. But Julia has handled it with grace, no matter how down she feels.
Julia spent some time last week writing down her thoughts about being diagnosed and what its been like for her. So today’s post is written by her, a new Crohnie, on learning to live with Crohn’s disease (note: Julia is a nurse so there will probably be a lot of medical terminology in this):
I feel like this all came out of nowhere.
I was half-awake, half-sedated, with the 100mcg of Fentanyl and 17mg of Versed I was given for my esophagogastroduodenoscopy and colonoscopy. My gastroenterologist, who I had met that day after seeing a GI Nurse Practitioner in the office a few months prior, stands over me as I come to. He told me, in medical terms (I’m an ICU nurse) that they found ulcerations and inflammation in my terminal ileum and that he highly suspects that I have Crohn’s disease. He told my friend who was picking me up (an ER nurse herself) that I would have to have a few scripts filled and that I should start taking these medication that day. I said, “Crohn’s disease?”
He said, “Crohn’s disease.”
We went to Wegmans Pharmacy (I was still pretty whacked out on sedation, and vaguely remember making a scene in the gluten-free freezer section when I saw that they now carried a gluten-free pumpkin pie) and after half an hour we picked up these medications. One gram of something called “Pentasa” three times a day. The bottles it came in were huge. Two big bottles of these huge blue capsules. Two pills three times a day. How did I get here? Thank God my insurance covered it, too, since the retail cost was $567.
I started taking these pills. Was I feeling better on them? After a few weeks, I still had no way to gauge. What is “feeling better” like? Do you mean there are people who don’t have abdominal pain, weird stabbing feelings in their belly, generalized discomfort, and weird habits of going to the bathroom? You mean, it’s possible to not be chronically, and usually acutely, aware of my physical guts? I’d had “GI stuff” for my whole life. I wrote it off as Irritable Bowel Syndrome as many doctors had for years. My family chalked it up to the fact that I had bowel surgery as an infant (for a duodenal intussusception that had to be resected) and that I likely had some mild adhesions. I knew something was wrong for years but eventually accepted that this was just how it was – IBS, adhesions. Nothing else. And now, this?
How did I get here?
I remember when I was a child I would have episodes of severe abdominal cramping and diarrhea. It was embarrassing and produced a lot of anxiety. These episodes were predictable and I would know when I would have to get to the bathroom with very loose stool and a great sense of urgency. There were a few times in my life when I wasn’t able to get to the bathroom on time and had accidents, but luckily I was in my car, or just about to finally reach a bathroom. I figured there was just something a little bit different about me, and that it just was what it was.
In 2011, I stopped eating gluten and so many of my symptoms got better that I believed I had found the solution to my problem. Not only did I experience more abdominal pain, bowel irregularity and urgency when I had eaten gluten, but I also felt fatigued and clouded in the mind. After almost a year of being almost completely, strictly gluten free (with a few episodes of cheating and subsequent nausea and bowel symptoms) I still felt like I was having generalized abdominal discomfort; something was still going on that I couldn’t figure out on my own. I went to see that Nurse Practitioner at the GI Associates’ office in my town and expected that they might want to scope me, since I had never had a colonoscopy, and that it would likely be normal, and that they would just confirm that I had IBS, or maybe that I had Celiac disease.
But this? Crohn’s?
Okay, okay, I know – lots of people have it. I can take medications that will help. I could even go into remission. In fact, the doctors I’ve seen identify my case as being “very mild to mild”. Still, I spent months taking these medications and only half-believing the diagnosis. Even as I type this, I still believe that maybe it’s all not as complicated or as bad as it sounds… and at this current moment I am actually sitting in a waiting room, having just drank two bottles of barium contrast, a saline-locked IV in my arm, waiting to be taken in for something called “magnetic resonance enterography”, ordered by a physician from whom I am receiving a second opinion. They say I’ll be on the MRI table for forty-five minutes (choose your music wisely, I suspect); after this procedure I have to pick up my lab order for the “Prometheus IBD SGI Diagnostic” blood work, a genetic test ordered by the gastroenterologist who initially woke me from my sedation with the diagnosis.
At my first real office visit with my original GI (the one who scoped me) we discussed my symptoms. He then asked me if I wanted to take Pentasa four times a day, or add another medication that could be taken once daily. I chose to add the additional med, once daily. That extra med turned out to be Entocort, nine milligrams of it every day, in three pills. It’s $1,459 a month, covered by my insurance. That’s just about $50 a dose. $16 a pill.
Sometimes I ask myself, is this all necessary?
I was fine for years. I lived with these symptoms. Frankly, me going to finally seek GI care was not because the symptoms had worsened – I felt better than I had in years. I ended up seeking GI care because I had chickened out of being scoped five years prior and knew it was probably a good idea given my history.
Crohn’s disease? Seriously?
I ask a lot of questions. Some of them have answers, some don’t. I take this whole thing one day at a time and try to not get ahead of myself. I have plans to travel abroad to rural Africa to do some missionary work and my first GI told me not to do it. Those from whom I am receiving my second opinion had a different take on the situation, and advised me that I simply need to be in remission before going, and then careful with what I ingest, and observant of my gastrointestinal reaction.
I guess I simply refuse to let Crohn’s interfere with my dreams…. And perhaps it doesn’t have to.
So, Crohn’s disease? Yeah.
As someone newly diagnosed, it’s hard for me to accept and say, “yes, I have this thing.” How did I get here? I was just doing the best to take care of myself and knew, in my guts, (forgive the well-intentioned pun) that something wasn’t quite right. What am I going to do now?
I guess all I can do is what I can do – take these medications, follow through with the tests, pray as I will, and take it one day at a time. Today, that’s as far as I can go. Sometimes my head runs wild and projects all sorts of possibilities and complications that scare me… but I will deal with those if I need to.