I’ve been meaning to start blogging my health progress for pretty much over a year, but the timing just never felt right. I’m sitting here now, sipping my strawberry almond butter smoothie, determined to kick-start this recovery train and become the person I’ve wanted to be for the last five years- happy and healthy. The last six months especially were probably the most challenging months of my life. I finished my semester and took a break last August, hoping to do all the right things to get my health on track. My Crohns was beginning to flare pretty severely and I was sick and tired of feeling sick and tired. But it seemed that all my efforts to calm down the disease did nothing. I rested, I changed my diet, I worked on stress reduction- yet things only got worse.
I entered 2015 ten pounds lighter, and I was already underweight, and gulping back 56 pills a week in an attempt to keep the inflammation at bay. I woke up every night in pain and vomiting, and the medication side effects made me extremely fragile and emotionally unstable (ask anybody that was around me during that time!). I developed a fear of food, knowing that even a single morsel could bring on the most debilitating pain. My appetite was barely existant, and everyday was a struggle to get out of bed. In January, after a particularly bad hospital stay, it was decided that surgery was my best option. After five years of struggle and numerous medications, I was sure damn ready to have the diseased portion taken out of me. They game me an ultimatum: I either have the surgery within the next couple days to put an end to my misery, but by whatever surgeon was on call, or, I wait a month and have the surgery with an experienced IBD sugeon who was able to do the procedure laporascopically, which meant less scar tissue and faster post-op recovery. I ruminated over this for a while, and decided to wait a month. If I was going to be cut open, I wanted it to be by someone that was highly qualified to do this specific procedure.
The entire month of February was a haze. I spent it mostly on the couch, brain fogged, malnourished, and losing weight by the day. I stopped seeing friends, barely left the house, and climbing the stairs seemed like climbing Mt Everest with a 200 pound knapsack. I spent the month weening off the Prednisone for the surgery, and cooked as much as I could for my boyfriend at the time in order to feel at least a little bit useful. It felt like the both of us at the time were barely keeping our heads above water, as he was dealing with his own set of demons.
I finally had my surgery on March 2nd, coincidentally the day after my birthday. I was definitely not prepared for what was to come. Deciding to have the surgery was a major decision, and I was under the belief that things would look up within a few days post-op. However, they found an extra 80 cm of angry diseased bowel next to the 9 cm that they originally knew about. The surgeon ended up taking out 20cm, leaving 60cm of diseased bowel, and fixing me up with a temporary ileostomy until the area heals. They had warned me of the possibility of the ileostomy, I was mainly worried about how we would treat the active disease that still remained. I had tried everything from Imuran to Remicade to Stelara, and few options remain. There was discussion of starting me on a drug that was originally used for abortions and breast cancer that coincidentally also proved effective in treating Crohn’s Disease. I wasn’t too keen on the sound of that- what kind of effect would that have on my body? I had already previously developed Lupus, Psoriasis, and Osteoporosis from medications to treat Crohns and I did not want to add anything else to that list.
Following surgery I developed an abscess and they found three small leaks in my abdomen. I developed Pancreatitis, my liver enzyme count was high, and I was extremely Tacchycardic. From March 2nd to mid April, I was in unbearable pain, could hardly move without fainting, and had fallen down to 88 pounds. My boyfriend chose this moment to end things with me, feeling like he could not handle this new caregiver role. I was admitted to the hospital twice post surgery, and was surviving off dilaudid and hydro-morphone. I began IV antibiotics daily once I was released back home (I’m still on them now as I wait for the all-clear on the healing of my abscess), and waited patiently (at least somewhat) for things to finally improve.
It is only recently that I am able to go out for long walks, small bike rides, and eat (almost) whatever food I want without doubling over in agony. My weight is now at 100 pounds, and I’m determined to get back to a healthy weight and gain back some muscle mass. I think now is the perfect time to put the past few months behind me and become me again. By omitting gluten, dairy, soy, and processed foods and beginning an exercise regime, I hope to find my way back to good health and feel good in my own body again. I know this will be a massive challenge. Even as I write this I am eye-ing up my sister’s chocolate chip muffins sitting on the counter. I have a tendency to quit almost everything I start, but I am filled to the brim with motivation to utilize this sweet time post surgery to regain what I lost, and hope that it prevents future flare-ups of disease. Today marks the beginning of a new journey, and I hope I can stick to it.
