"How are you feeling today?" is most often the way I am greeted by family and friends when I walk into a room, answer the phone, or check my texts. It hasn't always been this way, though.
I was diagnosed with Crohn's disease in 2013, when I was 19 years old. I had been experiencing symptoms such as extreme bloating, bloody stool, cramps and abdominal pain, and significant weight loss (due to a bad relationship with food) for a few months before I decided to do something about it.
I saw my primary care doctor, who sent a recommendation to a gastroenterologist. I saw the GI and was diagnosed with Crohn's disease after several visits, blood tests, colonoscopies, and an endoscopy. My diagnosis was mild to moderate Crohn's disease with inflammation. I was prescribed Lialda, which worked for a few months, and then Pentasa which helped immensely but became too expensive.
After a few months of being nearly symptom free, I stopped taking my medication. I did not have a great relationship with my GI doctor and I felt like my condition was not a concern to her so it must not be a big deal.
About a month later I was contacted by an assistant at the gastroenterology center to see if I would be interested in participating in a clinical research study. Since I was a college student and could use the small amount of pay and "free medicine" I decided to give it a try. It wasn't free money or medicine, but I was connected with a doctor who made me feel important and I enjoyed knowing I was assisting with research to find a cure for this disease. After my second colonoscopy, my intestines were not inflamed enough to qualify to continue the study- a great thing for my health but a little bit of a bummer to be dropped from the research study!
I was never contacted by either of the two GI doctors to schedule follow-up appointments with them after the conclusion of my participation in the study. My symptoms were few and far between, and I felt I could manage my pain on my own.
I experienced very few severe symptoms between 2014 and spring 2017. I feel so lucky that I had such a long period of relief! Sometimes, I forgot that I even had a disease. Me? No way! I'm healthy.
Spring 2017 was very stressful for me because I was in my final semester of my undergraduate degree and I started missing classes more frequently. I didn't know that there were services available at my university for people like me until a professor recommended that I talk to Student Disability Services. It didn't even cross my mind before that there were other people on campus experiencing the same embarrassing bowel problems.
Once I was give appropriate accommodations, I felt less guilty about being sick at school. Not only does this disease affect my physical health, but I felt alone and guilty because of it too. I felt like there wasn't anyone else who understood and I felt guilty for letting it get in the way of school, work, and social activities.
Upon graduation I was lucky to be able to continue working my full-time job from home. The summer went by fairly smoothly, (including no symptoms on my wedding day!) until I had a terrible flare-up while on a work trip to NYC. This was my biggest breaking point. I knew Crohn's was not going to go away.
January came around and, although I knew something was seriously wrong, I waited until my pain was unbearable and I was running a fever of 103° before having my husband take me to the emergency room. I had a CT scan done there and was transported to the hospital because it was believed I would need surgery to remove an abscess on my abdominal wall. Long story short, I was sent home after 5 days with antibiotics and steroids and told to follow up with a new GI doctor and surgeon in a few weeks.
I was taking high doses of prednisone daily and the side effects were nasty. I woke up every night drenched in sweat, my upper body broke out in acne, and I gained significant amount of weight in just a few short weeks. My follow-up appointment with my GI doctor went well but before I could get into the surgeon's office I ended up back in the ER just after my birthday at the end of February.
After another scan, it appeared that my intraabdominal abscess had more than doubled in size and was about 6 cm in diameter. The plan was to have IR place a drain and have the surgery team keep an eye on the situation. My appendix was also distended but the doctors thought that it was only aggravated by my Crohn's. I had this JP drain in for 2 days before they removed it in my hospital room because it hadn't been draining much. I was sent home the next day with more antibiotics, steroids, azathioprine, sulfasalazine, and a probiotic.
Almost exactly another month later, I was admitted back into the hospital as a septic patient because my fever was so high, my heart rate was extremely fast, and white blood cell counts were high among other things. I was immediately scanned for images of my abdomen and pelvis- the abscess was back in the same place but this time was 8 cm in diameter, about the size of a tennis ball. It was the most pain I had ever been in and I was extremely worried about what could happen if it ruptured before I could be treated.
This time, the course of treatment was a little more aggressive. The abscess was drained again by IR with another JP drain. I was also put on bowel rest, which meant nothing to eat or drink at all. A PICC line (peripherally inserted central catheter; basically a 41 cm tube that went in my arm, across my chest, and dripped medication and nutrition directly into my chest cavity) was put into my arm so that I could be given IV antibiotics and TPN (total parenteral nutrition). I also learned a lot of medical acronyms these last few months! In the rush of all this happening, I didn't question how long this healing process would take. My mom called me on the phone and told me I should be prepared for the long haul. It didn't really register with me until I asked my surgeon how long I would be on bowel rest and he answered, "Probably four to six weeks, could be more depending on how things go." I then realized I would be going home with this PICC line and drain.
At home, I had a home health care nurse to check my drain, PICC line, administer my daily infusions, and draw blood. She came daily until my husband, Zach, and I felt comfortable doing most of it on our own, at which point she came twice a week to change dressings and draw blood.
Being NPO for sooooo long was mostly emotionally draining. I didn't feel hungry because the TPN was administered over 24 hours and included all the nutrition my body required. I simply missed the act of eating food with my family and friends. I didn't feel normal. At first, I thought I could sit at dinner and resist but after a few times I realized I needed to stay home. It was too tempting to cheat. I didn't want to risk ruining my treatment plan but I did sneak a few bits of soft foods here and there.
I was off work for most of this time, from April through May 2018, until my drain was removed at week 4 and my PICC line was removed at week 6. I had another CT scan and an ultrasound at week 3 which showed the abscess had significantly collapsed. So, the drain was pulled but I continued bowel rest and antibiotic infusions in hopes to fully get rid of this nasty abscess. I worked a few days here and there but never felt totally ready to work full time again.
I had been following up with at least one doctor each week. My gastroenterologist, my surgeon, my internal specialist, and my primary care doctor were all actively following along and tracking my progress. My GI and I had decided back in February that I would try Cimzia injections once I no longer had an active infection. If Cimzia could get me into remission, I would hopefully be on it for the rest of my life. I had great days with few symptoms but those painful days were still interspersed here and there.
But, as I sit here now typing my experience, hoping it may help just one person, I am in the hospital again. This time, I am recovering from my first major surgery. My active infection never completely went away, despite all the steroids, antibiotics, probiotics, bowel rest, and everything else we tried.
I was nearly septic again upon admission to the hospital this week. High fever, high white blood cell count, fast heart rate, chills, tremendously tender abdomen, and severe nausea plagued me yet again.
This time, no time was wasted. I was brought from the ER to the hospital around 3am and by 9am I was notified that I was going to have emergency surgery at noon that day. I was very lucky to have my husband with me and my parents already on their way.
Before I went into surgery, I only knew that it was going to be an exploratory laparotomy and what the surgeon would do to resolve the issue would depend on what he saw once he was able to get inside my abdomen.
When I woke up, I discovered that about 12 inches of my small intestine were removed, the abscess was removed, as well as my ileum and appendix, before my small and large intestines were reattached. I was relieved to discover I did not have a stoma after surgery. Nothing against stomas or ostomy bags, I just did not anticipate I would need this step during my first procedure. What I was not relieved to discover was that I had a nasogastric (NG) tube and catheter.
I didn't get up for the first day after surgery. I was in so much pain, I couldn't believe this was supposed to help me feel better. I had already been feeling pretty useless and beaten up before surgery, it didn't make sense to me that I could feel any worse.
The NG tube was used to both drain my stomach to keep me from vomiting, and also to administer my pills "orally." On day two, both my NG tube and catheter came out and I felt immediately 5 times better. I was able to sit up and take a short walk with assistance which felt like an incredible accomplishment.
Currently, I am recovering in isolation with two general goals: 1) keep my pain controlled and 2) take walks more frequently.
What I've learned through these last five months is that anyone battling IBD is insanely strong. Mentally, physically, we are all strong! I have an amazing support system of family and friends. I also have an amazing medical staff that I feel all genuinely care about my well being.
There are days when my guts don't hate me too much and there are days when I would be willing to do anything just to make the pain go away. This is the way it is with a chronic illness. Some days, it is all I can do to get up, shower, and get dressed. But I don't always look sick. I might get up and get ready for the day but feel too tired, weak, and fatigued by afternoon to do much activity. So it's hard to answer those "How do you feel today?" types of questions.
I also know it's hard to understand the intricacies of the disease because I don't understand it totally either. When I'm in pain, it is because my immune system has decided to attack a portion of my gut that didn't require the help. This causes inflammation- inflammation that can become so severe it requires surgical removal. While it is true that stress and food can affect symptoms during a flare, they aren't the cause. So also please don't ask, "is it maybe just something you ate?"
And while I know that I will likely need more surgeries in the future, I know I've made it out on the positive side of this one and I'm ready to tackle life after recovery. And I'm ready to start shopping for a new bathing suit to show off the gnarly scar my 30 cm incision is sure to leave behind!