Finding Goodness in the Pain
By: Emily Braun
Companion Magazine Contributor
I was diagnosed with Crohn’s disease in June 2013 after my sophomore year of college. Looking back now, there were clear signs throughout the entire year that my body wasn’t quite right, but I chalked up the extreme fatigue and intense stomach aches to, “I’m a student… we’re all tired!” When I got home for the summer, my disease immediately kicked it up a notch. My parents noticed that I was spending most of my time on the couch, in the bathroom, and doubled over in pain, and suggested it was time to see a doctor. I was fortunate to be diagnosed right away - my bloodwork was crazy, my colonoscopy was crazy; it all made sense. My diagnosis later changed from Crohn’s to ulcerative colitis (and now we think we’re back to Crohn’s… but that’s another story!).
Being thrown into the world of chronic illness was pretty overwhelming for me, particularly in the beginning. I went from being a completely healthy, normal college student to suddenly having my life revolve around my quickly declining health. My symptoms continued to get worse - I was running to the bathroom 20+ times each day, my weight was dropping, I was up all night, all while in excruciating pain. I was losing huge amounts of blood, leaving me very anemic and exhausted. I am not exaggerating when I say I tried everything. Prednisone worked a little in the beginning, but every time we tried to taper off of it I would end up in the hospital.
No other drugs would even touch my symptoms, and as time went on they continued to get worse. I went to naturopathic doctors alongside my GI doctors and tried tons of alternative treatments as well - extreme diets, acupuncture, herbs, and supplements, even started to try Fecal Matter Transplant. I was willing to do just about anything, but nothing worked. After about a year and a half of this trial and error cycle that always ended terribly, my GI doctor finally said there wasn’t really anything else to do, and surgery was my best (and only) option. In September of 2014, I had the first of three surgeries to remove my colon and replace it with an ostomy and then a J-pouch.
Besides all the physical symptoms that overtook my life, I struggled mentally quite a bit as well. I am someone who loves control and lives on schedules, multiple to-do lists, planning for every possible scenario. Having a chronic illness like IBD goes against all of that - it is impossible to plan for anything because everything can change so drastically and unexpectedly from one day to the next. It was so difficult for me to accept that my diagnosis meant so much more than physical pain but also turned all my meticulous plans upside down.
After my diagnosis, I was forced to take time off of school, transfer to a university in my home state, and basically limp through the second half of college, doing whatever my body would allow. I saw my friends and peers just being normal 20-somethings, and I had a hard time being okay with the fact that my life looked completely different than theirs.
At the same time, I think the loss of control has actually been a gift of my disease. Okay, before I lose you, let me say that I am not usually someone who says that this illness is a “blessing in disguise,” or anything like that. If that’s your perspective, that’s great - you’re much stronger than me! - but if I could snap my fingers and have it all go away, I would. However, I also think that even though brokenness and pain are inevitable in our world, it is also so possible to find goodness right in the middle of it. There are a few examples of this in my own story, and I think learning how to let go a little bit is one of them.
It’s okay if you’re not there yet. I wasn’t ready to try and find redeeming pieces of the last several years of my life when it felt like everyone around me was telling me it was time. One of the hardest parts for me was when people would try to encourage me with, “just stay strong!” or, “be positive!” I feel like screaming just thinking about it! I was still mourning the pieces of my life and future that I knew my disease was taking from me. It’s okay to not feel thankful or positive all the time, and it’s okay to be honest about those feelings. For me, that has actually been the key to staying optimistic - accepting the days when I am not. When I let myself have time to be honest with myself and others about the reality of my illness, it sort of invites them in so that I don’t have to carry it all alone, even if it’s just for a minute. I always hate being a downer, but I think telling the truth is so important, particularly with people who don’t know as much about the disease. When we start talking about it truthfully, it makes it a little bit more acceptable for other people to talk about hard things too.
I have been using my J-pouch for about a year and a half, and it’s true what they say - it continues to get better and better. While my disease is still complicated and we are still trying to figure out a medication plan that works for me, I am so much more hopeful about it at this stage than I have been in the past. When I am struggling, I try to remember that my track record for getting through bad days is 100% so far, so there’s a good chance that I’ll survive this one too!